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Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References

Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion;  Also: Methotrexate Explanation & References

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Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References

Hopefully, the 8-minute synopsis will clarify the 'Paddison Program' (PP) approach to medications & dispel misunderstandings, misperceptions, miscommunications, misimpressions, misreadings . . . of the approach. 🙏

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If you're seeking clarification on Clint Paddison's OPINION on medications — in the context of a dietary/ lifestyle approach — kindly consider viewing the full 8 minutes.

Do You Need To Take RA Medications?

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🙏 🍀 🌺 🌞

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61 Replies
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The 'Paddison Program' (PP) (to my understanding), has always encouraged us dietary/ lifestyle implementers to work hand-in-hand with our medical team.

[From listening to podcasts & following the PP process, I've never heard (or gotten the impression) to 'pop off' meds or ignore my rheumatologist/ medical team or any of the other misinterpretations I've heard elsewhere. 😳 🙃 ]

We implement our d/l approaches in conjunction with our meds — not in place of our meds.

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2 likes
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Lyn has reduced (halved) her Methotrexate:

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[Bit more at: 13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri... ]

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Sally, 'The Galloping Grandma' blogger ( TheGallopingGrandma.wordpre... ) lowers her methotrexate too:

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🙏 🍀 🌺 🌞

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[ healthunlocked.com/cure-art... ]

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Pareto principle — 80/20 rule ( en.m.wikipedia.org/wiki/Par... ):

The Pareto principle (also known as the 80/20 rule, the law of the vital few, or the principle of factor sparsity) states that, for many events, roughly 80% of the effects come from 20% of the causes.

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5-Ways to Lower Pain:

1️⃣ Meds ⭐️

2️⃣ Diet ⭐️

3️⃣ Exercise ⭐️

4️⃣ Supplements

5️⃣ Stress Reduction

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Baseline Phase of PP: FREE Whole Foods Plant-Based Diet/ Lifestyle (WFP-BD/L) Info for Interested Autoimmuners/ RAers: healthunlocked.com/nras/pos...

Under Dr. Michael Klaper, Q&A: Diet, Arthritis, & Autoimmune Diseases, “The Baseline Safety Diet”: doctorklaper.com/answers/an...

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2 likes
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Additionally, if you're interested in viewing the PP perspective on Methotrexate, this page (with references) may be of interest if your researching Methotrexate in conjunction with dietary/ lifestyle approaches: paddisonprogram.com/methotr...

[The research References (& Comments) towards bottom of source page, may also be of interest. 🤓 ]

In meantime, the Methotrexate text is copied & pasted here for easy reference:

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Methotrexate.

"Methotrexate is one of a group of drugs known as DMARDs, or disease modifying anti-rheumatic drug. This category of drug works by suppressing the immune system and is considered a first-line drug for treating Rheumatoid Arthritis.

Because inflammation is an overactivity of one part of the immune system, the intent of using the drug is to reduce inflammation in rheumatoid arthritis. The major side effects of Methotrexate, however, have everything to do with causing inflammation of the digestive tract. This is important to understand, because the integrity and function of the intestinal lining is quite central to controlling inflammation. The most recognized risk of Methotrexate is increased intestinal permeability; this leaks to what is known as leaky gut [ii][iii] [iv] [v] [vi] [vii] [viii] and is a cause of inflammation [ix]

Methotrexate also has been shown to reduce the number and diversity of gut microbiome [x] which has been shown to promote joint inflammation [xi]. Intestinal inflammation [xii] [xiii] and inflammatory bowel disease have also been found to promote rheumatoid arthritis [xiv]. Oxidative stress of intestinal lining [xv] from Methotrexate, and inflammation of the mucous lining of intestines (Intestinal mucositis) [xvi] also contribute to the side effects and immune dysfunction that can detract from it as a useful drug for many individuals. Some research has described the side effect as gastrointestinal toxicity with mitochondrial damage [xvii] which is what promotes oxidative stress of the intestinal lining, because the mitochondria are what produce energy for the columnar cells lining the gut. Because of this combination of factors, the side effects include diarrhea, anorexia, nausea, vomiting, abdominal pain, inflammation, ulcerations of the mucous membrane of mouth and throat [xviii]."

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3 likes
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Why doesn't this text go on to explain if there are gastrointestinal problems on tablets injections can be prescribed? Taken this way it also solves the 'reduction of gut microbiome' theory, if this is eventually proven to be the case.

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Whilst it is referenced, this is a very one-sided article and the references have been 'cherry picked' to convey the negatives of the drug without any of the positives. The article focuses on side effects and suggests that the drug causes inflammation rather than controlling it, yet there is a wealth of evidence for methotrexate being very good at controlling the disease activity in RA and preventing joint damage (far more evidence than there is for the Paddison Programme).

For more balanced information on methotrexate, please see the following article on our website:

nras.org.uk/methotrexate-in...

For an article to be balanced, it should not only reference any statements it makes, but should also follow the most up-to-date and accurate evidence, rather than choose evidence that supports a pre-conceived idea. This is why all our articles go through a rigorous process, which includes being written by the most appropriately qualified author and being peer and reader reviewed.

Victoria

(NRAS Information and Support Manager)

6 likes
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👍 Many thanks, Victoria-NRAS. Much appreciated. 🙏

NRAS article copy & pasted below (in 3 segments) for easy reference: Methotrexate in Rheumatoid Arthritis: nras.org.uk/methotrexate-in...

1 like
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Side/ related query regarding content of video 📹 (posted above):

Is there a perspective/ opinion that NRAS can share about the video's content, the substance, of what is being said?

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[I ask, because to my layman's ear 👂 (non-science/ non-medical), it all sounds logical, sensible, sound . . . 🤔 ]

Any insights 👁 👁 you're comfortable sharing, would be greatly appreciated, Victoria-NRAS. 🙏 👍

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[I understand (& respect 🙏 ) the many years of hands-on experience you (& NRAS staff & members) have with RA & the knowledge, experience, insight, wisdom . . . you've acquired over years. Whatever information, insights, opinions . . . you can share would be invaluable & much, much appreciated. 🙏 ]

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Thank you kindly, for your thoughtful consideration, Victoria-NRAS. 🙏 👍 ]

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Hi Kai

Thank you for including text from our methotrexate article. I prefer to give a link, as although it's an extra click, it means people will always see the most up-to-date version.

I'm sure you will appreciate that in moderating this site while also running a busy helpline, I sadly do not have the time to watch and make notes on all videos posted on here, to then spend time going through all the statements made to see what the level of evidence is to support or refute them. This is much more time consuming with a video, as you have to effectively write up a transcript to go through it point by point.

I should also point out that I am a lay person as well, so am not best-placed for analysing this for you. However, my colleague Clare did comment on another thread, giving feedback from NICE on levels of evidence for the Paddison Programme:

healthunlocked.com/nras/pos...

This doesn't refer specifically to these videos, but will hopefully cover some of the key points.

Kind regards

Victoria

(NRAS)

1 like
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Thank you kindly for your time, Victoria-NRAS. 🙏

I've copied & pasted Clare-NRAS reply to post 'Feeling sorry for people here': healthunlocked.com/nras/pos... (for easy reference):

[Thank you kindly, Clare-NRAS. 🙏 ]

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Clare-NRAS

Hi Andy

As we discussed when you came to visit NRAS recently we are delighted that you have found a way of managing your RA that appears to work for you but thought it might be helpful for others here on HU to see what we did further to our conversation about this programme that you are advocating.

RA is a very individual disease and it is not a one size fits all solution therefore everyone must be respectful of each person's way of managing their condition and finding their own solutions to managing symptoms and disease progression. When someone feels passionately that something they have found works for them it is easy to try and advocate it for everyone else but that can be upsetting and distressing for others. I would recommend and encourage that careful consideration is used when posting and that the language used should be positive and encouraging and could not be perceived as judgmental or condescending. I doubt it was ever your intention Andy to cause offense.

As we promised we did some research to see if there was an robust evidence to support this Clint Paddison’s claims.

NRAS findings:

The programme is a commercial product and involves a monthly subscription to follow it.

NRAS made enquiries with senior people at NICE/RCP (Royal College of Physicians) that we have worked with on the NICE Guideline Review group. The expert response we received was as follows:

Thank you for passing on the information about the Paddison program.

At the scoping stage for the update of the NICE rheumatoid arthritis guideline, no new evidence that would alter the existing recommendations relating to dietary modifications were identified. During stakeholder consultation, one stakeholder suggested that there may be some evidence relating to Vitamin D supplementation or Omega 3 and Omega 6 levels. A couple of small studies on Omega 3 and 6 had been identified in the surveillance review that informed the update, but the conclusion was that the sample size of the existing evidence was too small and more large studies were required. No comments were received relating to bacteria / acid secretion / acidosis etc. as referenced in the Paddison program document.

On review of the references provided, the majority of the studies may be informative epidemiology or background to inform research in the area, and may indicate a possible association between some of these factors. However, many are narrative reviews or comments in journals and are opinions on the area rather than primary research or systematic reviews.

None of the references included were aiming to assess the effectiveness of the Paddison program itself. In order to be considered within a systematic review to inform on the effectiveness of the programme, a randomised controlled trial of the programme would be required ideally. In the cases of dietary interventions, it may be that the control group does not receive a placebo. Although this would introduce bias to the results, a large well performed study with investigator blinding and objective outcomes reported where possible, would minimise the bias.

The two references that may contribute to an effectiveness review for a treatment are references 15 and 16 which look at alkaline and potassium supplementation respectively. Unfortunately these are each single references on each of the possible interventions and have relatively small sample sizes. Furthermore the trial on alkaline supplements does not have a placebo in the control group which would mean that this would be considered as high risk of bias. In isolation neither of these studies would be considered enough evidence for alkaline or potassium supplementation.

I hope this is of some assistance. National Guideline Centre| Care Quality Improvement Department | Royal College of Physicians

I hope everyone finds this helpful and I wish to reiterate that as a consequence of the above, being an evidence based organisation, NRAS will not be altering our current dietary information.

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As much as I appreciate, Clare's thoughtful response to another post (& as insightful as it is), unfortunately, it doesn't touch on/ address my query about the 8-minute video. No worries. 🙏

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I was merely interested in your/ NRAS staff's knowledge, experience, insight, wisdom, perspective . . . on the substance/ essence of that video.

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It (the content of the video) seems to make so much sense to me. I merely wondered what your perspective(s) on it was?

I mean, it sounds like it would dove-tail beautifully with any NRASer's, rheumatologist's, scientist's, medical person's, or layman's way of 'thinking'.

Simple, step-by-step logic.

That is, it seems sensical, sensible — nothing 'off the mark' or nonsensical or risky or illogical or remotely impractical . . .

In short, it sounded to me like a practical points most everyone(?) could agree on? 🤔

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That is, it seems there was nothing said that anyone could find fault with. 🤔 [Merely my simple understanding of the aural words I'd heard — without scrutinising a transcript.]

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I understand this is an additional task for an already busy NRAS staff; already busy with other responsibilities/ duties. No worries. Fully understand. 🙏

Without a transcript, I guess it could be difficult to share your experience, opinion, insights based on just 8-minutes of aural dialogue.

I understand/ appreciate great care/ thought must be given before expressing any comments/ opinions — in your positions. 🙏 I respect & appreciate that. 🙏

Thank you for your time & thoughtful comment, Victoria-NRAS.

Much appreciated. 🙏 🌺 🍀 🌞

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1 like
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Thank you Kai

If we had the time to look into individual posts/links in this level of detail, or to run by medical advisors etc we would, but sadly with the forum as active as it is, we just don't have the time to look into everything in that level of detail.

Thank you for your understanding.

Victoria

Reply

[Part 1 of 3]

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Methotrexate in Rheumatoid Arthritis:

nras.org.uk/methotrexate-in...

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Background and mechanism of action

Methotrexate (MTX) was introduced in 1947. Because it slows down the growth of rapidly dividing cells it was used in high doses to treat people with leukaemia and other forms of cancer. In the early 1950s it was used in much lower doses to treat people with the skin condition psoriasis. Some people who had an inflammatory arthritis associated with their psoriasis noted that their joints improved as well as their skin, as did a few people with rheumatoid arthritis (RA) who were given MTX. However some people with psoriasis developed cirrhosis of the liver after long-term treatment. As a group these people had a very high alcohol intake which was probably a major contributory factor, although recent work suggests that people with psoriasis who receive MTX may be more vulnerable than people with RA to liver damage. As a result of the liver problems MTX was used rarely by rheumatologists for some years.

Methotrexate began to be used increasingly in RA in the 1980s and clinical trials demonstrated its efficacy in the mid-1980s. Studies have shown that it is generally well-tolerated in comparison with other disease-modifying drugs (DMARDs) used to treat RA. There have been numerous studies of its use since then both used alone (monotherapy) and in combination with other standard DMARDs and biologic drugs, reviewed below. In recent years it has become clear that the earlier in the course of RA that a DMARD is started the better the long-term outcome. MTX is now regarded as the “gold standard” against which conventional DMARDs and the newer biologic drugs are measured, and it is generally agreed that it should be used early in the course of RA in most people with the condition. There is also evidence that its use will reduce the risk of death from cardiovascular disease in people with RA.

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How does it work?

Methotrexate has numerous effects on processes in the body which could be relevant in RA including interference with folate metabolism and reduction in proliferation of cells. More recently it has been recognised that it can reduce the production of damaging polyamines and increase the production of adenosine which has anti-inflammatory effects. However, it is not possible to pin-point a single effect which explains its effectiveness. At the doses used in RA, i.e. generally between 7.5 and 25mg weekly, it does not have a significant anti-cancer or immunosuppressive effect.

It is likely that genetic factors influence both the response to MTX and the risk of side-effects. Although progress is being made in identifying these factors, there is at present no reliable way of predicting who will respond well, and who is at increased risk of side-effects.

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How is it taken?

Methotrexate is usually given once weekly as an oral dose. Practice varies but it is usually started at around 10-15mg weekly and the dose is then increased as necessary by 2.5mg at a time over the next few months. Most people will respond to 10-25mg weekly but some may need 30mg weekly. Occasionally even higher doses are used. In general higher doses are more effective but also more likely to cause side-effects. MTX can be given as a weekly injection when people experience bad nausea with tablets, or if the response is inadequate when taken by mouth.

MTX depletes the body of folic acid and the frequency of side-effects can be reduced by taking supplements of folic acid. It is usually prescribed at 5-10mg once weekly but sometimes at 5mg every day except that on which MTX is taken. Taking higher doses may reduce the efficacy of MTX and most rheumatologists recommend taking the folic acid one or two days after the MTX, and in particular not taking it on the same day as the MTX.

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Thanks for the copying & pasting Kai, I sometimes have problems accessing links.🙏

1 like
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Very welcome, trailblazer. 🙏 🌺 (Please don't hesitate to give a scream if having difficulty accessing links. Am happy to copy things over for you. 👍 No worries. 👍 ) Hope you're doing well & in good spirits 👻 👻 . . ☺️ . . 🐣 🐥 🐤

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Thank you Kai, I'm good thank you. Hope your doing well. I'm just trying to juggle family (my cousin was critically ill in hospital), work, my diet food intolerances (healing my gut) and 'life happens', can get a wee bit hectic at times!

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Yes indeed, life certainly does happen . . 😳 😁 🙃

Very sorry to hear about cousin in hospital & having so much to juggle . . . No fun 😔 . Our thoughts 💭 💭 💭 are with you, trailblazer. 🙏

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. . . . 🔮

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🔮

. ¯\_(ツ)_/¯

. . . . . . . . . . 🔮💥

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All we can do is try not to drop the glass balls. 😯 😳

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Wishing you the very best, dear lady. 🙏 🍀 🌺 🌞

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Don't know if you'd already stumbled on to this:

PP Guide for Rheumatologists?

The PDF file, Low-Fat, Whole-Foods, Plant-Based “Paddison Program” Diet and Lifestyle Approach for Rheumatoid Arthritis: A Guide for Rheumatologists (Version 1.5.6), is at: paddisonprogram.com/wp-cont...

Some of the Guide's content is in 5 segments towards bottom of post: Erika's Rheumatologist Confirms Erika's CCP Reduced (from 144.3 to 27) via Diet — turning_pain_n2_purpose: healthunlocked.com/nras/pos...—-turning_pain_n2_purpose

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[Found it to be nice 'capsulized summary' particularly if your Rheumatologists is curious/ interested in what you're doing. 🤔 👍 ]

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(Hope this helps. 🙏 ☺️ )

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[Part 2 of 3]

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Efficacy

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Comparison with other DMARDs

A detailed review of clinical trials of DMARDS concluded that MTX was well tolerated compared with the others. MTX was also more effective in reducing symptoms, clinical evidence of active arthritis, disability and joint damage on x-ray when compared with combined results for leflunomide, sulfasalazine, hydroxychloroquine, gold, ciclosporin and azathioprine..

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Use of MTX in combination with other DMARDs

Over the past 15 years a number of studies have investigated the use of combinations of DMARDs with or without concurrent corticosteroid. MTX is a key component of the most effective combinations which include the triple combination of methotrexate, sulfasalazine (SSZ) and hydroxychloroquine (HCQ). The use of such combinations has been endorsed in the NICE Clinical Guideline and EULAR recommendations on the management of RA. Use of combination DMARD therapy can be particularly helpful when it is not possible to use biologic drugs e.g. in people with recent cancer or chronic infection.

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Effect on x-rays

Rheumatologists are keen to see that a drug slows down the rate of deterioration in joint damage seen on x-ray, as there is a close correlation between the degree of joint damage and both disability and the need for operations.

Several studies have shown that MTX is better at slowing x-ray deterioration than placebo or older synthetic DMARDs., However, it does not prevent the progression of joint damage in all people and use of a TNF-inhibitor with MTX is more effective in this regard than MTX alone.

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Use of MTX in combination with biologic drugs

MTX is classified as a synthetic DMARD i.e. it has a defined chemical structure and is manufactured using conventional chemical processes. By contrast biologic drugs are typically produced in a living system such as animal cells and have a complex protein structure. Several biologic drugs have been licensed for the treatment of RA and approved by NICE for use in the NHS in certain situations. A detailed review of clinical trials concluded that using MTX in conjunction with the biologic drug was generally more effective than giving the biologic drug alone.

Anti-TNFα drugs are biologic therapies that neutralise the effect of TNFα, a pro-inflammatory agent which plays a major role in causing inflammation in RA. There are now five agents licensed in the UK for the treatment of RA: infliximab (Remicade), etanercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi).

Rituximab (Mabthera) targets a subset of B cells, reducing their capacity to take part in immune processes which damage the joint.

Abatacept (Orencia) inhibits activation of T cells and so reduces their ability to participate in damaging inflammatory processes.

Tocilizumab (RoActemra) blocks the effects of the cytokine IL-6, another pro-inflammatory agent which plays a major role in causing inflammation in RA.

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[Part 3 of 3]

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Frequently asked questions

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What are the possible side-effects?

Up to 30% of people experience side-effects which limit the dose of MTX which they can take, and some of them stop treatment as a result. In others the symptoms are an inconvenience but the benefits from taking the drug make it worth continuing. Nausea, loss of appetite, sore mouth and diarrhoea are fairly common (up to 10%). The level of liver enzymes can be checked by a blood test and mildly increased levels are also fairly common (up to 20%). If this increase is more severe the drug will have to be stopped, or the dose reduced. Headaches (up to 10%) and some hair loss (about 3%) can also occur.

Potentially more serious side-effects such as reduction in the numbers of white blood cells or platelets can also be detected by a blood test. These problems occur in up to 5% of people on MTX. Rarely the drug can induce pneumonitis: inflammation in the lungs (about 1%). People with pre-existing lung disease seem to be at increased risk of this problem. Pneumonitis causes shortness of breath and troublesome cough, and people who develop this should stop the drug and consult their doctor as a matter of urgency.

MTX is largely removed from the body by the kidney, so its use in people with significantly impaired kidney function is potentially hazardous.

It is doubtful whether MTX increases the risk of serious infection in the doses typically used to treat people with RA.

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Can you drink alcohol when on treatment with MTX?

As noted at the beginning of this article, there are concerns that MTX may increase the risk of cirrhosis, particularly in those who drink alcohol to excess. If the levels of liver enzymes are persistently raised MTX is usually stopped. Experience over the past fifteen years is generally re-assuring and there is no convincing evidence that the frequency of cirrhosis in people with RA treated with MTX is greater than in the population at large. However the risk is likely to be greater in people with other risk factors for cirrhosis such as heavy alcohol intake or infection with hepatitis B or C.

Because of the possibility of an increased risk of liver damage with MTX the safest policy is to avoid alcohol if you are on MTX. Many rheumatologists believe however that it is safe to have up to ten units of alcohol per week i.e. a total of ten glasses of wine or five pints of beer or lager. People on MTX would be very unwise to exceed the maximum limit recommended for the population at large i.e. 14 units for women and 21 for men per week.

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Can methotrexate injure the unborn child?

Yes, although this is not inevitable and the magnitude of risk cannot be stated reliably. A child conceived by a mother who is taking MTX may be born with deformities and the risk is such that termination of pregnancy has to be considered. It is therefore vital that women on MTX ensure that they use effective contraception. If a woman on MTX decides she would like to have a child, it is recommended that she stops the MTX for a period of at least three months before she tries to conceive, and some authorities recommend waiting six months. There is uncertainty regarding the risk of deformity in children conceived by men taking MTX but the manufacturer recommends that men should use effective contraception for three months after stopping MTX before trying to conceive.

Women can start taking MTX again once the child is born, but should not breast-feed while on the drug. It may be necessary therefore for a mother to choose whether breast-feeding or re-starting MTX is more important to her at that time.

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Does MTX interact with other drugs?

The antibiotics trimethoprim and sulphamethoxazole (often combined as co-trimoxazole) also have anti-folate effects (ie they impair the function of folic acid) and should be avoided or used with great caution by people on MTX as there is a risk of severe bone marrow depression leading to serious infection or bleeding.

There is also increased risk of toxicity if MTX is taken with acitretin (a treatment for severe psoriasis); the epilepsy drug phenytoin, the anti-psychotic drug clozapine and the anti-malarial pyrimethamine.

When MTX use became widespread there were concerns that non-steroidal anti-inflammatory drugs (NSAIDs) including aspirin might increase the risk of side-effects when taken with MTX. However most people with RA cannot manage without regular NSAIDs as their joint stiffness is not relieved by ordinary painkillers, and further experience in tens of thousands of people with RA treated world-wide suggests that this is very rarely a problem with the doses of MTX used to treat RA.

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Can people on MTX have immunisations?

It is generally recommended that people on MTX have the flu vaccine annually and are immunised against pneumococcus.

It is recommended that people on MTX do not receive live vaccines, and should not do so until three months after stopping MTX. Live vaccines include oral polio and typhoid vaccines, measles, mumps, rubella (MMR), varicella (chickenpox/shingles) and yellow fever. BCG immunisation should not be given either. The inactivated polio vaccine (IPV) and killed typhoid vaccine can be given and there is no problem with hepatitis A and B, tetanus, anthrax, cholera, plague or rabies.

This advice may affect your choice of holiday as some countries insist on evidence of immunisation against yellow fever before a person is allowed to enter their country.

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Further reading

Immunisation for people with rheumatoid arthritis

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What tests are recommended for people on MTX?

The British Society for Rheumatology (BSR) recommends that people starting MTX should have a full blood count, kidney and liver function tests and a chest x-ray before starting treatment. Blood count and liver function tests should be checked by blood test every two weeks until six weeks after the last dose increase. Thereafter tests should be done monthly until the disease and dose of methotrexate have been stable for one year when the frequency may be reduced in some cases.

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Further reading

British Society for Rheumatology methotrexate monitoring guidelines

Arthritis Research UK (ARUK) methotrexate drug information sheet

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References available on request

Robin Butler MD FRCP, Consultant Rheumatologist. Robert Jones & Agnes Hunt Orthopaedic Hospital, Oswestry

Original article: 01/08/2006

Reviewed: 09/12/2014

Next review due: 09/12/2017

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I'm not sure why it's necessary to c&p the content when both Victoria & yourself gave the link to the NRAS MTX info? Surely it would be preferable to supply us with PP's full content on MTX, that is unless this is the full content, in that case if this is typical of the PP's info on DMARDs etc it's misleading, even duplicitous. I haven't read it in full but I wouldn't think the PP info is full of negatives.

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Here is another short recent overview of important practical facts about mtx (2013). What is central is the fact that inflammation is what the meds target, just as the alternative treatments. Less inflammation less illness progression and joint damage. There is no silent progression of RA without inflammation which has often been brought up here. The fact that meds may give a wrong picture of the inflammatory situation can be helped by MRI and US exams often enough.

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Sorry, forgot the link

everydayhealth.com/rheumato...

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This is clearly a US site with info in this case for RD patients in the US. Nobody here in the UK being treated under the NHS will be considered for biologics after only 3 months on DMARDs as stated in para 5, another DMARD but not an anti-TNF/biologic. The guidelines don't tally between here & the US. Other than that I don't see any benefit in posting this particular info. This from another US site, which I've chosen specifically being info for US patients, is more realistic & accurate factual info I think you'll find rheumatoidarthritis.net/tre...

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The point with the post was more to emphasize the importance of keeping inflammation down, refering here to dietary measures that have had success in many treatments of RA.

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Thank you kindly, Simba1992. 👍 Much appreciated. 🙏

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This is my (layman's) understanding also:

"Less inflammation less illness progression and joint damage." ✔️

"There is no silent progression of RA without inflammation. . . " ✔️

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(Merely my understanding as well. 🙏 )

[Article noted is cut & paste below for easy reference.]

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The Facts on Methotrexate for Rheumatoid Arthritis Treatment: everydayhealth.com/rheumato...

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For people who have more than mild symptoms of rheumatoid arthritis, or RA, methotrexate (Rheumatrex, Trexall) is one of the most commonly prescribed drugs. It's a leader in a class of drugs known as DMARDs – for disease-modifying anti-rheumatic drug – and it works to slow the progression of joint damage from the disease.

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How Methotrexate Helps Ease Inflammation

Methotrexate works by reducing the function of the cells that are causing inflammation in the joint tissues. "Its use can reduce inflammation and therefore should help relieve pain and protect from joint damage," notes Sean A. Whelton, MD, a rheumatologist and associate professor of medicine at MedStar Georgetown University Hospital in Washington, D.C. Less inflammation in the joints should mean less joint pain and less joint swelling. You should also feel less fatigue and less morning stiffness.

People with swollen and painful joints whose rheumatoid arthritis has not improved with initial, non-drug therapies will most likely be prescribed methotrexate for RA management. But it may take weeks to several months until the full benefits of methotrexate are noticeable, says Barbara Young, PharmD, MHA, editor of consumer medication information for the American Society of Health-System Pharmacists in Bethesda, Maryland. While you’re waiting for the effects to start, you may be given other medications, such as corticosteroids and nonsteroidal anti-inflammatory drugs (NSAIDs), to help you manage your RA symptoms.

The goal is to feel more and more improvement over a few months, reaching a level of stabilization after four to six months. But methotrexate doesn’t work for everyone. The drug is a slow but steady process, taking about 5 to 6 weeks to start working, says Dr. Whelton. "I find about half of people will experience relief with methotrexate alone, while the other portion usually adds other medications to treat their RA."

According to a research review, published in January 2013 in the journal BMC Medicine, that analyzed predictors for methotrexate success, men respond better than women, non-smokers respond better than smokers, and people who take methotrexate as their first DMARD do better than people who have already tried another drug in this category. The review also found that those who take methotrexate in an early and mild stage of RA do better than those who start the drug after they have had RA for a long time. The researchers point out that if doctors can identify who is unlikely to respond to methotrexate, those patients can be spared exposure to a potentially toxic drug.

If you do not have a significant improvement in joint inflammation and well-being after about three months of RA treatment, your doctor will probably consider adding another drug to your treatment, especially a biologic drug such as etanercept (Enbrel), adalimumab (Humira), or infliximab (Remicade). The treatment goal is to achieve early, complete (or near complete) control of joint inflammation so there’s less risk for long-term damage to the joints over the years.

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Dealing With Methotrexate Side Effects

Because methotrexate affects rapidly dividing cells that line the mouth and stomach, very common side effects such as painful mouth ulcers, nausea, and diarrhea may result. "People on methotrexate may also suffer from fatigue," adds Whelton.

Call your doctor right away if you have diarrhea, mouth sores, dehydration, bleeding, shortness of breath or cough, any signs of an infection, or a rash.

Methotrexate can lower your white blood count, which can make you more likely to get an infection. It can also cause hair loss and make you bruise more easily. Some people get headaches and fatigue for a day or two after taking methotrexate, which is usually taken by mouth once a week. "Another dosage schedule for methotrexate oral is to take the weekly dose in divided doses every 12 hours for 2 doses (within 24 hours)," says Dr. Young.

Because methotrexate can lead to spontaneous abortions, women taking this RA drug should take precautions to prevent pregnancy. Women should also use a contraceptive if their sexual partner is taking methotrexate. "Reliable contraception must be continued for three months after men stop taking methotrexate and for women until after they have had their menstrual cycle return," Young says. "Women must notify their physician immediately if they think that they may be pregnant while they (or their partner) are taking methotrexate."

To prevent mouth pain, ulcers, and nausea, a low dose of folic acid, a B vitamin, once a day, can be considered. In addition, your doctor will want to do blood work, including a chemistry profile, every month to monitor your white blood count. After a few months of monitoring, you should be able to reduce the frequency of blood tests to once every two to four months. People living with rheumatoid arthritis and kidney disease may be especially susceptible to the side effects of methotrexate and instead may need to take a different medication for RA treatment.

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Long-Term Issues: Possible Liver Problems

It's important to screen on a regular basis for liver irritation, says Whelton. "While mild liver inflammation is not uncommon, serious liver disease is rare." Blood tests can check for liver problems. If your liver test is abnormal, your doctor may lower your dose of this RA drug or stop it temporarily. Later on, your doctor might start you on methotrexate again at a lower dose.

Alcohol increases the risk for liver inflammation when taking methotrexate and should be avoided. The combination of alcohol and methotrexatemay lead to liver damage.

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Thank you Kai! :-}

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Please note, this is extracted from a US website

healthline.com/health/rheum...

Is Methotrexate Effective For Rheumatoid Arthritis?

Methotrexate for RA Effectiveness Side effects Takeaway

Introduction

1. Methotrexate can be used for long-term treatment.

2. The drug is less likely than other DMARDs to cause serious side effects.

3. Methotrexate may work in follow-up treatment even if it didn’t work initially.

Rheumatoid arthritis (RA) is a chronic autoimmune disorder. If you have this condition, you’re familiar with the swelling and painful joints it causes. These aches and pains aren’t caused by the natural wear and tear that occur with aging. Instead, your immune system mistakes the lining of your joints for foreign invaders and then attacks your body. No one knows for sure why this happens or why some people have this disease.

There’s currently no cure for RA, but there are ways to treat it. Your doctor might prescribe medications that slow down the progression of the disease or suppress your immune system. They may also give you drugs that reduce inflammation and pain in your joints.

The current recommendation for initial treatment of RA is with disease-modifying antirheumatic drugs (DMARDs). One of these drugs is methotrexate. Check out how this medication works, including how effective it is in treating RA.

METHOTREXATE FOR RA

Treating RA with methotrexate

Methotrexate is a type of DMARD. DMARDs are a class of medications often used in the early stages of RA. A few drugs in the DMARD class were specifically made for treating RA, but methotrexate was developed for a different reason. It was originally created to treat cancer, but it’s been found to work for RA too. It’s sold under the brand names Rheumatrex and Trexall. It comes as an oral tablet and a solution for injection.

Methotrexate and other DMARDs work to reduce inflammation. They do this by suppressing your immune system. There are risks linked with keeping your immune system in check this way, though, including an increased risk of infections.

While methotrexate comes with the chance of side effects, it also offers great benefits for people with RA. DMARDs can prevent joint damage if you use them early enough after your RA symptoms first appear. They can also slow down further joint damage and alleviate symptoms of RA. Most doctors and people with RA think the benefits of this medication are worth the risks.

Methotrexate is a long-term drug when used for RA. Most people take it until it no longer works for them or until they can no longer tolerate its effects on their immune system.

EFFECTIVENESS

Effectiveness

Methotrexate is the go-to drug for most doctors treating RA. This is due to how well it works. According to Johns Hopkins, most people take methotrexate for a long time compared to other DMARDs—up to five years. This reflects how effective it is in treating the condition and how well most people tolerate it.

The numbers show that methotrexate helps most people with RA. According to the National Rheumatoid Arthritis Society, more than half of people taking it see a 50 percent improvement in the course of their disease. And more than one-third of people see a 70 percent improvement. Not everyone will find relief with methotrexate, but it works better for more people than other DMARDs.

If methotrexate treatment didn’t work for your RA the first time, there’s still hope. A study ncbi.nlm.nih.gov/pmc/articl...

In combination with other drugs

Methotrexate is often used with other DMARDs or other medications for pain and inflammation. It has shown to be a great partner. Certain combinations of two or more DMARDs—always with methotrexate as one component—work better than methotrexate alone. Keep this in mind if you don’t respond to methotrexate by itself. You can talk to your doctor about a combination therapy.

SIDE EFFECTS

Side effects of methotrexate

Besides the fact that it works for many people, doctors like to use methotrexate because serious side effects are uncommon. But like all medications, methotrexate can cause side effects. Common side effects can include:

upset stomach

fatigue

thinning hair

You may be able to lower your risk of these side effects if you take a folic acid supplement. Ask your doctor if this supplement is right for you.

Learn more: * Can folic acid reduce the side effects of methotrexate? healthline.com/health/rheum...

In rare cases, methotrexate can cause serious side effects. These can include:

cirrhosis

low white blood cell levels (can lead to infections)

low red blood cell levels (can cause fatigue)

low platelet levels (can lead to bleeding)

lung disease

During treatment with methotrexate, your doctor may check your blood cell counts, liver function, and lung function. If you have serious side effects, your doctor may stop your treatment.

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Again, from a US website

* healthline.com/health/rheum...

Can Folic Acid Help Reduce The Side Effects Of Methotrexate?

Folate Methotrexate and folic acid Folic acid Interaction Why treat RA? Takeaway

Introduction

If you have rheumatoid arthritis (RA), your doctor may have prescribed methotrexate for treatment. According to the American College of Rheumatology, methotrexate is one of the most commonly used drugs to treat RA. However, it can decrease the levels of an important vitamin in your body called folate. This leads to a side effect of methotrexate called folate deficiency. Your doctor may suggest you take a folic acid supplement, which is a man-made form of folate.

FOLATE

What is folate?

Folate is a B vitamin that has a role in many important functions in your body. It helps your body make new red blood cells and other healthy cells. It’s also necessary for DNA repair.

Folate can be found in many different foods. These foods include:

leafy vegetables such as spinach, broccoli, and lettuce

okra

asparagus

certain fruits such as bananas, melons, and lemons

legumes such as peas, beans, lentils, soybeans, and peanuts

mushrooms

organ meat such as beef liver and kidney

orange juice and tomato juice

Although it’s good for you to get folate by eating a variety of these foods, simply eating more of these foods will not be enough to make up for the folate that you lose from methotrexate.

METHOTREXATE AND FOLIC ACID

Why would my doctor prescribe methotrexate and folic acid together?

Symptoms Of Folate Deficiency

Some symptoms caused by folate deficiency include:

anemia (decreased number of red blood cells)

nausea

vomiting

stomach pain

diarrhea

liver problems

stomatitis (mouth sores)

Methotrexate interferes with the way your body breaks down folate. When you take methotrexate, you can develop levels of folate that are lower than normal. This is because methotrexate causes your body to get rid of more folate as waste than usual. This effect causes folate deficiency. Your doctor can prescribe the supplement folic acid to help prevent a folate deficiency.

FOLIC ACID

What is folic acid?

Folic acid is the man-made form of folate. Taking folic acid can help to make up for, or supplement, the folate that your body loses when you take methotrexate. Folic acid supplements can help decrease the side effects from folate deficiency. They’re available over the counter and cost about as much as other vitamins and supplements.

These supplements come in a form that you take by mouth. The usual starting dosage is 1 mg per day. Your doctor will determine a dosage of folic acid that’s right for you.

Learn more: Folate vs. folic acid » ** healthline.com/health/food-...

INTERACTION

Does folic acid affect how methotrexate treats RA?

Taking folic acid with methotrexate does not decrease methotrexate's effectiveness in treating your rheumatoid arthritis. When you use methotrexate to treat RA, it helps decrease pain and swelling by blocking certain chemicals in your body that lead to inflammation. Methotrexate does block folate, but the way it treats RA seems to be mostly unrelated to blocking folate. Therefore, taking folic acid to make up for the folate you lose from taking methotrexate helps reduce the side effects of folate deficiency without affecting your treatment of RA.

WHY TREAT RA?

Why is it important for me to treat RA?

What Is An Autoimmune Disorder?

Your immune system usually protects your body by fighting off germs and other substances that invade your body when you are sick. An autoimmune disorder is when your immune system mistakes your body’s tissues for invaders and attacks them.

RA is an autoimmune disorder. In RA, your immune system specifically attacks the synovium, which is the lining of the membranes that surround your joints. The inflammation from this attack causes the synovium to thicken. If you don’t treat your RA, this thickened synovium can lead to cartilage and bone destruction. The tissues that hold your joints together, called tendons and ligaments, can weaken and stretch. This can cause your joints to lose their shape over time, which can affect how well you can move around. The inflammation associated with RA can damage other parts of the body as well. These include your skin, eyes, lungs, heart and blood vessels. Treating your RA can decrease these effects and improve your quality of life.

TAKEAWAY

Talk with your doctor

Many doctors prescribe methotrexate to treat RA. Sometimes this drug leads to folate deficiency, which can cause some bothersome side effects. However, these side effects can often be avoided by taking folic acid. Treating your RA is very important, so making your treatment as easy as possible is important. If your doctor prescribes methotrexate for your RA, talk to them about your risk of folate deficiency and the possibility of using folic acid to prevent side effects.

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Finally, taken from a US website

** healthline.com/health/food-...

Folate Vs. Folic Acid

Uses Amounts Deficiency Supplements Takeaway

Overview

When it comes to knowing what important minerals and vitamins you should be getting more of, it’s easy to get confused. In the case of folic acid and folate — terms that are often used interchangeably — you may be surprised to learn just how much these two substances differ.

Folate is also known as vitamin B-9. It is found naturally in foods. Folic acid is the synthetic form of folate, found in supplements and also added to processed, or “fortified,” foods. The term folate is often used to describe both natural and synthetic versions.

USES

Why Do You Need Folate?

Folate is water soluble in any form. This means that it dissolves in water and doesn’t stick around in the body after a portion of what is ingested is absorbed, passing instead through urine. Because of this, you need to continually get folate in your diet to replenish the body’s stores.

Folate serves a variety of purposes in the body. It helps to keep your cells functioning properly, as well as helping to form your red blood cells and DNA. It can also prevent anemia, heart disease, and birth defects, primarily neural tubal defects.

AMOUNTS

How Much Do You Need?

The recommended daily allowance for folate depends on your age and gender, among other things. The amount generally increases by age, although women of childbearing age have the highest requirement levels.

Children between 1 and 3 years old should get around 150 mcg per day. This should go up to 200 mcg between the ages of 4 and 8, 300 mcg between the ages of 9 and 13, and 400 mcg from 14 onwards.

Pregnant and lactating women should up this amount to 600 mcg per day, according to the National Institutes of Health (NIH).

DEFICIENCY

What Happens When You Have a Deficiency?

Folate deficiencies are uncommon, according to the NIH. That’s because most people take in enough folate from the foods they eat. People who have a deficiency likely suffer from other issues that prevent their body from absorbing vitamins, like alcoholism or other nutritional deficiencies.

Signs of a folate deficiency might include:

anemia

soreness or ulcers on the tongue

changes in your hair or skin pigmentation

elevated homocysteine levels

your baby having birth defects

SUPPLEMENTS

Should You Take Supplements?

Most people with a generally healthy diet do not need to take folic acid supplements to help meet their folate requirement. However, because pregnant women need to get upwards of 600 mcg per day, experts recommend they take a prenatal vitamin that includes folic acid.

For the rest of us, it’s simply a matter of eating more of the right foods.

Beans

Lentils, lima beans, and chickpeas are excellent sources of folate. Chickpeas are the main ingredient in everyone’s favorite dip, hummus. And hummus has plenty of other health benefits, including its high-fiber content, which may help lower your “bad” cholesterol levels.

Green Veggies

You can also get your folate fix from asparagus, broccoli, okra, spinach, and asparagus. Mushrooms and enriched foods (like spaghetti, white rice, and bread) are other good sources of folate, which makes this recipe for an asparagus and shiitake mushroom noodle bowl very convenient!

Juices

Which two fruit juices are absolutely brimming with folate? Orange juice and tomato juice. So feel free to enjoy a Bloody Mary (virgin, of course)!

TAKEAWAY

The Takeaway

Folate is an essential vitamin that you can only get from your diet. Folic acid is a synthetic version that you can buy as a nutritional supplement. Deficiencies are rare, and most people get enough from the right foods. However, pregnant women might want to make sure they’re getting enough by taking a folic acid supplement.

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Interesting.

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Thanks, Isn't it.

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Additional Methotrexate (MTX) info (via video) thanks 🙏 to Amy_Lee's find: "Methotrexate side effects - A very good video" ( healthunlocked.com/nras/pos... ):

'Methotrexate for Rheumatoid Arthritis' (Inflammatory Arthritis) by Dr. Andy Thompson (from RheumInfo.com: rheuminfo.com/ ):

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Supplementally, RheumInfo's 1-page (printable) pictogram provides a summary of MTX:

rheuminfo.com/docs/medicati...

(How to use MTX, What you need to do, Side effects & important facts, When to call your Dr., etc.).

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'RheumInfo Pictopamphlet':

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And, RheumInfo's 'Methotrexate' webpage ( rheuminfo.com/medications/m... ) goes into even more detail about MTX with an additional Dr. Andy Thompson video, 'Methotrexate', towards bottom of webpage:

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The page also provides links/ references to MTX:

. . . • Learn how to inject: subcutaneous injections

. . . • How it works

. . . • Side effects

. . . • Who shouldn't take it

. . . • When to call a doctor

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Supplementally (in same vein), is a 2-minute slide presentation from AlbertaRheumatology ( m.youtube.com/channel/UCmhA... ), 'Methotrexate for Rheumatoid Arthritis', which essentially reiterates/ confirms Dr. AT's points:

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If interested in researching 🕵️‍♀️ 🔎 additional MTX videos, google search for 'Methotrexate for rheumatoid arthritis videos' may help jumpstart your research: google.com/search?as_q=Meth...

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Additional drug/ med info:

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Managing Patients Taking DMARDs

(Disease Modifying Anti-Rheumatic Drugs)

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🛅 INFOGRAPHIC (pdf): bmj.com/content/bmj/suppl/2...

A visual summary of the 4 most frequently used DMARDs, including recommended monitoring & conditions that may interfere with treatment:

1 • Methotrexate (MTX)

2 • Leflunomide (LEF)

3 • Sulphasalazine (SSP)

4 • Hydroxychloroquine (HCQ)

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"Symptoms of inflammatory arthritis are often controlled in the long term using DMARDs (disease modifying anti-rheumatic drugs).

These are usually initiated by rheumatologists, with patients commonly taking two or sometimes three DMARDs simultaneously.

This graphic shows information about four of the most frequently prescribed DMARDs, including recommended monitoring and other conditions that could interfere with treatment."

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📰 ARTICLE: bmj.com/content/358/bmj.j32...

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[Many thanks to Man_Oeuvre 'BMJ DMARD infographic': healthunlocked.com/nras/pos... 🙏 😌 ]

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🙏 🍀 🌺 🌞

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Additional Methotrexate (MTX) discussions that may be of interest:

🤔 Is Methatrexate killing me: healthunlocked.com/nras/pos...

🤔 Methotrexate can kill!: healthunlocked.com/nras/pos...

🤔 Stopped MTX and... healthunlocked.com/nras/pos...

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'Methotrexate' search results:

• NRAS: healthunlocked.com/search/m...

• HU: healthunlocked.com/search/m...

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🙏 🍀 🌺 🌞

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Methotrexate (MTX) & Anxiety/ Mood Side Effects References

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[In response to source query at post Can Methotrexate cause anxiety? healthunlocked.com/nras/pos... ]

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Anxiety is a "known side effect" according to:

📄 Anxiety, depression and suicidal ideation in patients with rheumatoid arthritis in use of methotrexate, hydroxychloroquine, leflunomide and biological drugs.: ncbi.nlm.nih.gov/pubmed/238...

📄 Methotrexate and Anxiety - from FDA reports: ehealthme.com/ds/methotrexa...

📝 Methotrexate – Medications for Rheumatoid Arthritis (RA): arthriticchick.com/medicati...]]

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Additional folks discussing anxiety (side effect) on various forums/ sites:

🗣 Does Methotrexate cause Anxiety Attacks? treato.com/Methotrexate,Anx...

🗣 Can methotrexate cause mental or mood changes? drugs.com/answers/methotrex...

📄 Methotrexate Side Effects: drugs.com/sfx/methotrexate-...

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May be other 'possibilities' 🤔 related to 'anxiety attacks' in context of 'life traumas':

😧 Anticipatory anxiety?: 'Fear' healthunlocked.com/nras/pos...

😨 Dealing with trauma/ stress?: Healing Power of Resilience, Optimism, & Hope: Moving Forward from Trauma, PTSD, Physical & Psychological Abuse & Illness — Dave Pelzer: healthunlocked.com/nras/pos...—-dave-pelzer

👫 RA link to childhood trauma: healthunlocked.com/nras/pos...

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🙏 🌺 🍀 🌞

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Heat 🔥 / sweating 😓 works well for some, IAmAnElf: From Wheelchair to Bikram Yoga (in 10 Months): healthunlocked.com/nras/pos...

Not everyone's cup of tea. ☕️

Lots of other options: Gentle Chair Yoga for RA, X-Ray Yoga for Wonderment: healthunlocked.com/nras/pos...

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NRAS's Methotrexate 📹 ( healthunlocked.com/nras/pos... ), titled, 'Using Methotrexate - All you need to know':

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More NRAS_UK 📹's at YouTube channel: m.youtube.com/channel/UCpSj...

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Thank you kindly 😌 🙏 , Amy_Lee for additional informative 📹's from 'Very good update of RA treatment Aug and Sept 2017' ( healthunlocked.com/nras/pos... ):

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👨‍⚕️ RA Treatment Guidelines:

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👨‍⚕️ Future Treatments for RA:

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[ Additional 📹's from Dr. Stanley B. Cohen, are at Specialty Pharmacy Times YouTube channel: m.youtube.com/channel/UCNF1... ]

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🙏 🍀 🌺 🌞

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Merely pondering aloud 🤔 💭 💬 :

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❓ Wonder 🤔 if Dr. Cohen addresses/ explains how other 'older' folks who do manage to improve/ heal using other methods as well?

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. . . 👵 Sally: healthunlocked.com/cure-art...

. . . 👴 andyswarbs : healthunlocked.com/nras/pos...

. . . 👵 AARA : healthunlocked.com/nras/pos...

. . . 👵 Lyn & 👵 Cecilia: healthunlocked.com/cure-art...

. . . . . . (Scroll downward on page for their videos.)

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❓ Or, if Dr. Cohen is curious/ interested in exploring how folks [such as older folks (& younger)] manage to tip the scales ⚖️ towards wellness/ healing even if their in advanced years (or 'states') of unwellness? 🤔

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🤔 💭 💬

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❓ Or, if Dr. Cohen has heard of 👂 or interested in 🤔 collaborating with folks actively practicing/ implementing other methods:

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Journey To 100: Evolution of Medicine (Functional Medicine & Importance of 'Community'): healthunlocked.com/cure-art...

Dr. Michael Greger ('Sense & Sensibility') Shares "How Not to Die": healthunlocked.com/cure-art...

Paddison Program (PP): Clinical Trial, Rheumatologist Contacting Clint Paddison, 'Guide for Rheumatologists', TEDtalk, etc.: healthunlocked.com/cure-art...

'Microbiome/ Gut Health Book List' from AARA: healthunlocked.com/cure-art...

Why Does the Medical System Ignore the Importance of Diet? A Fable Told by John Robbins: healthunlocked.com/cure-art...

Dr. Brooke Goldner's Free 3-Day Webinar, '6 Steps to Reversing Autoimmune Disease with Supermarket Foods': August 3/Thu, 7/Mon, 10/Thu 2017: healthunlocked.com/cure-art...

2017 Food Revolution Summit: April 29 (Sat.) to May 7 (Sun.): healthunlocked.com/nras/pos...

Cardiologist, Dr. Monica Aggarwal, Reduces Her RA Inflammation via Plant-Based Nutrition, Diet, Lifestyle: healthunlocked.com/nras/pos...

"Super Juice Me!" Documentary by Jason Vale: healthunlocked.com/nras/pos...

"Fat, Sick & Nearly Dead" Documentary by Joe Cross: healthunlocked.com/ra-warri...

Dean Ornish, Neal Barnard, T. Colin Campbell, Caldwell Esselstyn, John McDougall, Michael Klaper, Michael Greger: healthunlocked.com/nras/pos...

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🤔 💭 💬

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There seems to be so many, many 'authoritative/ experienced' experts from a variety of arenas. 😳 😯

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🤔 Wonder if they're aware of each other?

🤔 Wonder if they'd consider 'working together'/ 'collaborating with' each other?

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Perhaps working together towards a more comprehensive/ 'wholistic' approach might ease the stress & distress so many of us try to work through (on our own) when trying to assess which approaches (their various, subtle 'nuances & flavours') will work best for us. 🤔

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As it stands now, newly diagnosed are 'left to their own devices' to sort through a mass of information 📚📚📚 — diverse opinions (from medics, family, friends, peers, co-workers, well-intentioned strangers . . . ) — & pressure to make speedy decisions — 'life-altering decisions' — immediately.

Especially when we're ill-equipped to make such critical decisions in our most frightened, vulnerable, & un-informed state. 😳

In short, we can feel inordinate pressure 🗜 to make an immediate ('snap decision'?) out of sheer fear 😱 / terror 😵 .

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🤔 💭 💬

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Gerbil Soufflé 🐹 👩‍🍳

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The feeling of pressure 🗜 to make life-altering decisions ⚖️ when we're ill-equipped to 🤤 😞 🤢 😴 🤕 . . .

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• We're at our most vulnerable 😫 😩 😰 😥 😭 😔 😞 , incapacitated/ debilitated 🤕 😷 🤒 😴 🤤 😲 😵 , & scared-witless 😱 😨 (& 💩-less) 😳

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• (Often?) lacking the rudimentary scientific ⚗️ 🔬 or medical 💉 💊 background/ training when we don't come from a science 👨‍🔬 / medical 👩‍⚕️ educational background 👨‍🏫 👩‍🎓 to even comprehend 🤔 what having an autoimmune illness means.

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[Never mind overcoming the 'perplexity' of merely learning how to correctly spell 'a-r-t-h-r-i-t-i-s' 😬 when swimming in brain fog 🤤 — or how to even begin to tackle the proper pronunciation (never mind spelling of) r-h-e-u-m-a-t-o-l-o-g-i-s-t . . . 😂 😬 .]

Funny & not so funny . . . 🎭

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It's like asking a gerbil to make a soufflé . . . 🐹 🍲

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🙃 🤣

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🤦‍♀️

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🤷‍♂️

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🙏 🍀 🌺 🌞

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A thoughtful, insightful 👁 👁 perspective from Silentreader (🤫 📖) about questioning 🤔, researching 🕵️‍♀️ , & understanding 😌 (as best we can) our treatment options before blindly following (or rushing into) any "expert’s" or "specialist’s" 👩‍⚕️👨‍⚕️ advice (‘opinion’) when it comes to chronic, progressive illness: healthunlocked.com/asthmauk...

(Experts/ specialists are ‘human’ & just as susceptible to ‘human error’ 🙅‍♂️ — as we all are. 😳 )

Much appreciation to ‘🤫 📖’ for expressing such concepts soundly, logically, sensibly. 🙏😌

Responsibility utimately falls back onto our shoulders 🤷‍♀️ to do the best we can to inform 👩‍💻/ educate 👨‍🏫 ourselves to make the best treatment choice for ourselves (weighing ⚖️ our unique conditions & circumstances) — even though we’re at our most unwell 🤢, vulnerable 😩 , frightened 😧.

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[Overlaps with thoughts shared at 13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri... ]

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🙏 🍀 🌺 🌞

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Happy New Year to all! Sorry, I have not been on here due to festive days and also, what seems to be chronic tiredness. I don't know if this is related to Asthma or something else.

Kai-- in my experience I find that "specialists" often only see exactly that - what they specialize in. And not the body as a whole or whatever you might have besides the reason you came to see them. I have only seen the collaborating if you are in hospital and about to have a more serious operation, but not otherwise or seldomly.

I have been reading what you write about coming together, working together. I think in the medical field there is too much a feeling of self-importance with many to do this. Although it would be a good idea and to get the whole picture. Sometimes some try but for years of my life here I remember I was never given or handed out my results of anything from x-ray to blood check or whatever. As an example. My doctor for eyes.

You will have to excuse me with the spelling of words. It is not out of stupidity but have not lived in Britain for over 45 years and left at barely twenty-one years of age. I hardly ever went to a doctor at that age and before, except for complaints due to my accident when I was seventeen, but this only the first year after that. My hip worsened later.

So when you have nothing to do with illnesses and there was also no personal computer in those days in homes or all the programs we can now watch about health on tv - well you stay ignorant of a lot of things. I did my growing up here you could say and therefore also learned medical terms here. Unfortunately, it is not like Britain where a lot is in Latin and therefore international. They do have the Latin terms but those are usually not used. They have their own names for it besides the Latin ones that hardly anyone knows here. Except people in the profession. Anyway, I have not used my own language for ages and only started to write more in English again since I am on Facebook, which is not long. So please overlook mistakes.

My Ophthalmologist - just googled it- was a good one I went to for years. Of course you might do that for a checkup once a year. And I missed a year so was not there for two years. When I did go I was surprised to find that my doctor pensioned and someone else had taken over. I had my check with her but was not greatly impressed and thought about finding a new doctor, maybe nearer home, as I had kept this one in Bremen, as I used to live there and used to him. I now live 46 km away.

I asked for my documents which also included letters from a hospital about two laser ops to close a hole and was told they would send them. Nothing came and it turned out that they could not find them and had probably thrown them away. Because they thought I was no longer a patient after not being there two years. There is a law here that they should keep your documents for five years but seems to be a law that not all stick to. So now I ask for all written examinations I have to be sent to me as a copy. Who better than you can look after and take care of these. Also important to have when you move somewhere else.

A lot of doctors are also unaware of side effects. This is important especially when a person has more than one illness and is taking other medication.

So what you write Kai is completely true and sensible. We have to watch what happens to us and ask ask ask, no matter how much we might get on someone's nerves. We only have the one body and the one life.

I know many of you are not old yet, but some are and it is particularly hard when you are, as energy is not what it used to be. Getting old not for the faint-hearted as it is and then having to contend with illness too. Illness comes to most of us when we are the most vulnerable and weak. So, of course, it is a strain and of course, it is frightening. I often get the impression in Germany that they do not care much about the old anyway. Maybe they think we are not worth the effort and try harder with a young person or maybe it is just the generation gap thing that exists here. Most doctors are young.

This forum has already helped me. I did not have very much time to read about Asthma over the holidays, nor did I want to as wanted to think of other things and had a lot of cooking and visitors. But could not sleep last night and read about Spiromax, which was prescribed for me and have it here, as yet unused.

And read how many people had side effects and that it replaced another inhaler, as Spiromax cheaper to make by 21%. And that the way of taking it with the two powders caused people to have Asthma attacks and thrush and all sorts. So I am not taking it either and will mention all that to my doctor once he comes back from his holiday.

Like the graphic and original way you write Kai.

Best wishes,

Nica

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🙏 😌

Remarkably good English 🇬🇧 after immersion in German 🇩🇪 , SilentReader/ Nica. 😃

Very impressive. 😯 🙏 ☺️

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Yes, ‘specialist’ (too often?) can fit the expression: "if all you have is a hammer, everything looks like a nail" 🙃🔨

(An unfortunate blinkered, narrow 🔬view. 😯 😳 )

Not a comforting thought when we’re seeking a complete, well-rounded perspective 🌐 to address our overlapping, interlaced 🔀 conditions ‘as a whole’. 😳

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Yes, also get similar sense that some societies/ cultures have little understanding, respect, appreciation for elders. 🧓 👵 👴

Maybe it’s difficult (impossible?) for younger and/or ‘healthy’ people to grasp the issues of unwellness and/or aging — especially if one has never experienced it or had much exposure to it? 🤔

[It has to be experienced to be believed!! 😳 🤯 🤪 🤣 🙃 ]

Perhaps we’ve all been exposed to too much media 📽 🎞 📺 📻 that focuses on ‘idealistic’ youthful vigor — by-passing hard, unpleasant realities of unwellness & aging? 🤷‍♀️ 🤦‍♂️

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Yes, have to chuckle 😄 now when we reach the age where our medics 👩‍⚕️👨‍⚕️ are the age of our children 👨‍👩‍👧‍👦 ! (Where did the time go?! 😆 ) Too, too funny. [One minute we’re changing their diapers 🤱 — in the blink of an eye 👁 their changing ours 😲 ! 🤣 🙃 ]

May be too difficult for them to grasp the full feeling/ meaning of disease, aging, decay . . . if they’ve not yet actually experienced any of it themselves? 🤔

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World of difference between 1st-hand experience 😣🔨 & reading about it in a book 📖, or ‘seeing’ it on a computer 👩‍💻, or even seeing it in a patient or an ailing 🤕 grandparent? 🤔

Unless our physicians 👩‍⚕️ ‘walk in the skin of a deteriorating diseased body’ 🧟‍♀️ , wonder if they (no matter how well trained 👨‍🔬 👩‍🏫 📚 ) can truly, fully comprehend it? 🤔 😔 🤯

[Hopefully they’ll never have to experience any of it. 🙏 ]

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Yes, smart smart, lady. 🤓 🧠 👍👍 Ultimately, it’s sensible for us to maintain our healthcare records (as best we can) — especially when going between healthcare givers, countries, etc..

Yes, no one is as vested in our well-being as we are. 😳 🤔

I’d like to think providers 🏥 👩‍⚕️ 🏢 👨‍⚕️ 🏨 do the best they can within their means & within requirements/ ‘laws’ — but perhaps they’re simply (bureaucratically 📑 📋 ) overwhelmed with volume of patients 👨‍👩‍👧‍👦👨‍👩‍👦‍👦 & quickly outdated record-keeping methods 🗄🗂💿 that simply can’t keep up? 🤷‍♂️

Perhaps it all gets far too messy, complex, intricate? 🤷‍♀️ 😯 🤦‍♂️

Guess our taking ownership of it is the logical, sensible fallback. 🤔 👍

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If you’re not already aware of the British Lung Foundation (BLF) forum ( healthunlocked.com/blf ), Nica, folks there who may have practical experience for you? May be an additional resource or a spot to ask questions? 🤔

If this helps in your research, here’s search results for "Spiromax’’ on all HU forums: healthunlocked.com/search/s...

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If by any chance your ‘tiredness’ is attributable to ‘anaemia of chronic disease’ 😓 , this reference ( healthunlocked.com/cure-art... ) might be applicable? 🤔

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Wishing you substantive answers to your queries & a happy, healthy New Year, Nica. 🙏 🍀 🌺 🌞

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🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆

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Yes - about young people having no empathy as no experience with illness - well not usually as there are exceptions. It is kind of like a Patch Adams thing. That film with Robin Williams as the typical "colder" Doctor and the pull yourself together. Until he himself gets cancer. A true story and a good one.

What the young do not realize is that they will all get there in the end.

Providers doing the best they can. I think there are good doctors and hospitals and of course also nurses who do not get paid enough for what they do. But there are also hospitals where all is mainly about money. We have some nearby where I live now. I do not know if in the British papers but maybe you read about a male nurse called Niels Högel who was employed by three different hospitals or clinics for a number of years and during that time murdered a couple hundred older patients? I know that he is abnormal, but what makes it worse is that he was able to do that and that the doctors and colleagues, although they suspected something wrong as too many died after he had been nursing them, looked the other way. Two doctors said they did not know but they had heard talk and decided to ignore it because they did not want their hospital getting a bad reputation.

This was only a few years ago and many involved and a big scandal here. All about money. To think that most people go into the medical profession out of the goodness of their hearts - that is a bit of a fairy tale. They go into it for money and prestige. Some of them (not so many) also because of interest and maybe caring. Although my son in law once argued that you cannot care too much about people as unhealthy - for the doctors. To take it home with them and to let it get too close. So here they go the other way.

Young student doctors from Gröningen in Holland, who's uni in connection with the medical uni in Oldenburg swapped for a year and noticed that the bedside manner was largely missing here. It was an article in the papers but our daughter was at that time working in the same hospital - she studied medicine and decided on the psychiatric field so cannot help me much in my situation - and told us about it. Caring - It was not something that was considered that important. You kind of go through the system and are fixed but do not expect much human kindness on the way. It is the mentality and it is money - getting as many done as possible. Not all of course but a lot of them like that...

The Dutch are different and also have euthanasia (as you probably know) if things get really bad. I am all for it, shocking as that might sound to some religious person. We do not let our pets suffer right to the end and put them out of their misery. But here in Germany, the church decided against it.

Kai - thank you concerning the Lung foundation but I am not at that stage yet thank goodness. My lungs are clear - had a scan. I have no idea what it will be like in a few years from now with all the irritation from the constant coughing. So thank you as I might need it and will look at it anyway.

Thank you also for the Spiromax link - as have to confront my doctor soon and say why I do not want to take it. It is the second medication I am not taking and he will not like me for this, I know.

The link to the tiredness. I have had sleep apnea (is it called that in English?) for about three years. I used to be an eight-hour person and to bed early but then started a job (after being pensioned and without pay this time) helping with people on the streets - the organization called Caritas here. That was often late hours. We have a lot of begging people here since the borders opened and especially from countries like Bulgaria or Rumania they involve little children who are trained to evoke pity. Exploited children.

Some of those were taken into care as their parents (if they were their parents, which was not always certain) maimed them. A little handicapped boy or girl - people give more.

I got used to the late hours as did this for a couple of years after I had stopped working with Siemens.

My husband said I stopped breathing during the night, many times and for too long. And went to a doctor for this who said something about oxygen mask. But in the meantime, I managed to not stop breathing. Maybe also because I sleep very little, which is not healthy I know. And due Asthma more coughing in a lying position, especially on the right side, which I try to avoid while still awake.

I do not eat late or anything like that. Nothing after 19.00, so do not think it is digestion although I was told it could be.

All links you sent are very helpful and appreciated Kai.

All the best and better health for you also in this new year.

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Oh là là . . . 😧 It is indeed shocking the horror stories that are out there, SilentReader/ Nica! 😨 And those who are silently 🤐 ‘complicit’ by closing their eyes 😑 or looking the other way & unquestioningly 🤭 ‘allowing’ things to ‘go on’ for fear of negative word (bad reputation) getting out about their institutions. 😞 Truly awful for the unfortunate souls 👻👻 who cross paths with such troubled medics who don’t belong in the field interacting with patients. Sad, too, that monetary motivation 💶💷💰can override compassionate care for some (many?) ‘professionals’. (Truly, truly unfortunate that monetary reward enters into the equation — attracting the ‘wrong’ sort of individual with the wrong motivations/ attitudes. 😳 🙃 )

[Blessedly, we’ve not personally encountered medics like that (at least none that I’m aware of) & have been fortunate in our experiences & the compassionate care we’ve received. 😌 🙏 Yes, indeed the extraordinary, life-saving compassionate nurses (& physicians) we’ve encountered we’re truly *extraordinary*. We witnessed them being ‘s t r e t c h e d’. (I hope 🙏 they were/ are compensated fairly ⚖️ .) When asked if more nurses would be hired to help the already *busy* staff, they chuckled & said no additional help would be hired because costs had to be kept down!! 😳 (Mind blowing. 🤯 ) They, along with the medics we’d encountered we’re *exceptional* — literally "life-saving." 🙏 ]

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Yes, very interesting having deeper insight into the field not only from 1st-hand experience but through daughter & son-in-law’s medical training experiences. Eye-opening 😳 / revealing 😯. A side many of us are oblivious to 😑 unless we’ve loved ones in the field.

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Yes, yes the compassion of euthanasia 😵 for intolerable, unbearable suffering at end stage is indeed a humane, compassionate blessing. 😌 🙏 😇 Hard to find fault when seeking ‘humane release’ at the end. Yes, yes it should be an option for those seeking (requiring) it & not be (cruelly) denied by those who’ve no understanding. 😔

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Oh my goodness, can’t imagine what you’ve seen through Caritas! 😨 Horrific to think what cruelties we as humans will resort to (exploiting children 👫) when desperate to survive. 😔 How horrific. 😱 Breeding yet another generation of trauma ( healthunlocked.com/nras/pos...—-dave-pelzer ) survivors. Thank gawd 🛐 for the compassionate work you do, Nica. Not for the faint-hearted. Imagine extremely stressful 😖 & imagine takes a toll emotionally 😰, spiritually 😞, physically 😵 ? Don’t know if considering taking a temporary reprieve from it (to allow your body/ spirit to restore to better health)? 🤔

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Don’t know if Wedge Pillow 📐 ( amazon.de/Bookworm-Lesekiss... ) will help with gentle upward incline of upper torso when trying to sleep at night with breathing/ asthma, coughing, & sleep apnea/ c-pap? 🤔 (Merely an idea 💡 if you’ve not already thought of. 🤔 )

Yes, yes struggling to get a good night’s sleep 😴 can become ‘nightmarish’. 😨 Am understanding our body does so much ‘repair’ during sleep time that we truly need deep, restorative sleep 😴💤💤 to get well. Amazing what our body’s doing when we think it’s "just" resting. 😯

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If it’s a ‘constant’ coughing 😷🗯🗯🗯 that just won’t subside, could it possibly be a pesky ‘infection’ that just won’t go away without medical intervention 💊 💉 ? Don’t know if they’d do a sputum test 🔬, or assess by some other means as to ‘what’s going on’? Once it’s assessed & you receive appropriate treatment & the coughing subsides, it makes a world of difference in how you feel. ☺️ You’ll may well be able to sleep 😴 throughout the night (without being disturbed by coughing) & your body can begin to repair/ heal? 🙏 😌

I hope your medics provide the appropriate, compassionate treatment you deserve, Nica. 🙏 And hope, you’ll soon be able to get a comfortable, restful night’s sleep. 😴💤 & begin to feel much, much better. 🤗

Please keep taking loving good a care of yourself, dear lady. 🙏 🍀 🌺 🌞

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🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆

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Oh, don’t know if this might be of interest. Just saw post about ‘Re: Doctors’ ( healthunlocked.com/nras/pos... from BubbleMonkey) about "A Letter to Patients with Chronic Disease"( more-distractible.org/musin... ) by Dr. Rob Lamberts back in 2010. Also, lots (600+) of interesting comments beneath the 7-year old post. Lots more to ponder. 🤔💭💭

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I can't sleep so read your mail Kai. Not all but what you wrote and one link - A letter to Patients with Chronic Disease. It actually made me sick. And angry reading it.

Are we supposed to "care" for insecure doctors too now? For their little souls so that they do not feel uncomfortable? I'm sorry but that letter stinks and was just too much. Maybe they want us back in the dark ages, before computer, when many knew next to nothing about their ailments and therefor of course believed all told to them and never detected any kind of mistake? It isn't going to happen.

I think most of us are intelligent enough to know that medicine is a learning process and even a guessing game or a finding process. We know that the doctor cannot know it all. Most of us are polite and respectful. We do not expect a quick fix either, which is more what the doctor in question thinks we do. We know that our illnesses are largely individual and it is not easy to find out exactly what.

Doctors are grown up people and we scare them??? I never noticed them being scared only aggressive. Maybe living in Britain you have not come across that type and before I lived here I never had much to do with doctors and did not think one way or the other. Or maybe I did - because although otherwise healthy I had an almost life-costing accident - not my fault - and was grateful and trusting.

This country where I live is a country that revers titles. In the 70s and before they still used to call the wife of the doctor Frau Doctor although she had no medical education and it was all kowtowing. I remember little old women in Bavaria bringing in fruit and flowers to try and buy more attention. Little Presents. It did not help much because the doctor in question still talked to them as if they were brain amputated and without respect for their age. Age - as a matter of fact, a lot of people here meet you and talk to you as if you have not lived. Not knowing what you know and in a lecturing manner.

I realize the way I come across writing this. But I have experienced doctors of the other kind as well as some good ones. Doctors who make a little girl (my daughter aged seven) who is frightened and going blind, feel bad because she screams when having a lumbar puncture or spinal tap, to find out what it was and where it came from. He ridiculed her and said even babies are not as cowardly and I could see he was irritated.

Another doctor gave my daughters a medication for a bad cold, that it was known no child under five should have. Tetracycline. Which discolours the teeth of growing children as it goes where the permanent teeth are and does that. It also softens bones. My oldest daughter has pain going up stairs sometimes and her teeth discolored. She had this treated later, we paid for that as not nice for a young women to have that. She did not smile a lot..These are only two things. I could tell you more. Like going to an orthopedic doctor and watching things. This man had some query and got on his nerves and there was a dispute. Or should I say the doctor showed his dislike as people here hardly dare say anything and swallow things usually?

The surgery was in an old Victorian type building almost top floor. Very chic. That alone was ridiculous as no lift. A lot of those buildings don't have them and I think if you are treating patients with hip problems and the like - why set up surgery in such a place?? Because of a good part of town and looks good?

The patient was going down these stairs with some difficulty, clutching the rail. The doctor was fuming for some reason - I did not get all that passed between them only that the loud aggressive voice belonged to the doc. The other was subdued, shocked even. When you are ill and clutching at straws and you might want to keep that doctor who has a good reputation. Did not understand that after this experience but then a lot of what is said about them on the computer for instance - some of it is written by friends. Does not have to be true or maybe the doctor let his personal likes and dislikes get in the way of how he treated patients. Anyway - he stood up there and said something and then he turned off the light.

It was daytime - late afternoon and winter and inside there you needed the light on. I don't know why he did that. Did he think he might miss a step? I know that sounds strange to think but you would not believe the way they talk to each other privately. I have heard dentists (sitting in the room next door with the door open) talking about oral swines (patient who just left not me!) and all sorts of things. I have a great dentist now and have been with him for 25 years so this was long ago.

When living in Würzburg I went to this otolaryngologists. Besides the patient's stool, I noticed a wastebasket and a lot of swabs with blood on them. The examination was painful and mine joined them. A couple of weeks later I went to my house doctor who is not far from this other place and talked about it. He and I were friends. And he said I would not go there if I were you. We are not allowed to say anything about colleagues but I know you well. Otolaryngologists, also urologists. A lot of things go wrong there. And he said - who picks the last as a profession anyway - meaning strange types, considering what he deals with. We laughed as was more of a joke really because of course for some people they are important and I think most of us visit one at one time or other. Especially when older.

You can go to a dentist here and say please no amalgam filling. This was about 24 years ago when they had realized that amalgam deposits in your bones and very unhealthy. These days no one has them and at that time a lot of people having them removed, which is very tricky as you should not swallow it when broken down. Anyway, I said that and came out with a huge one! The dentist preferred amalgam because much easier to work with. And cheaper.

It isn't just me but I know many people who have had strange things happening to them that shouldn't happen.

We are not there to have to be careful not to hurt their feelings. We are seeking help from them and they get paid to do this.

This taking down the "gods in white" thing the writer mentions. Who believes that anyway that they are gods. Maybe they themselves?

We know they are people, just people, doing a job they get well paid for and were trained for. We know that being human a mistake can happen and if an honest mistake then hard if it happens to you, but understandable that it could. We do not expect the quick fix but would rather have something that might take longer but does not damage us. If that is possible.

I really thought that letter pathetic Kai.

Someone once told me a good doctor is a person who treats his patients the way he would treat his own family. If they were ill.

Why should we patients have to put on an act for fear of "offending" the person. Why should we act less intelligent than we are. I mean - personally, I am well aware I did not study medicine and know very little. What I do know though are my symptoms and how I feel and over the years what was good for me and what not. Half the time these trained people do not even listen you know. So you are supposed to ignore that something did not agree with you and pretend you know nothing about it? That is not a working together for the good of the patient. That is stupidity. Doctors who are as frail as that in their characters should think of doing something different.

Sorry but.....Maybe it is not a good idea replying when you are not able to sleep.

Having written all that though I am well aware that we need medics and that they save lives. We can be grateful but there is no need to worship or act as if they do this for nothing. They are paid to do it. They are doing a job where they often meet people on their last legs. Psychology should come into it and it is in their training but seems that a lot of doctors do not pay any attention to the fear of their patients, for whom in some cases it could be life or death and many suffering and in pain. Compared with that - the doctor is fit and no problems a lot of the time. Many of them young and do not know what pain is. Only when they themselves experience this can they really relate and then some of them change. It is a long subject and I am tired.

PS wedge pillow - have one. I don't work for Caritas anymore either. It got too difficult. This was about two years ago. Thank you for replying.

I wrote before living here I did not have much to do with doctors - except for the accident. But I forgot to mention my dad. He died of a smoke related illness - and a kind of Asthma too. You could say he drowned in himself. We are originally from London - Westminster - St. Johns Wood. But my parents then living in Bedford and it was in this hospital my father eventually died. I was flying over more times over the months, as still working. Once I arrived and he was sitting with this hospital gown, open at the back. One of the other patients said for hours in a chair. The window had been opened by some fresh air fanatic of a nurse and he was sitting there in February partly in a state of undress and forgotten. Visibly in stress but at that time already no longer himself. Something had broken in him and he hardly complained or maybe he was afraid to say anything? I got him into bed and went out to buy two new pajamas.

I had tried to get them to let him come home with me for his last months or weeks and was told no by one doctor and later when too late yes by another. Luton to Bremen is a little more than an hour and from the airport in Bremen is half an hour in the car. So it could have happened and I know he wished it.

After he died - some months later - there was an article in the papers that I read by chance. I often bought english newspapers here at that time.

A big scandal about that hospital that they let old people die where they could have, in some cases be saved. To save the NS money or whatever. I still have that cut out from the newspaper somewhere. Doctors in that hospital taken to court by relatives of patients.

No - I do not just trust. It would be stupid to do this. But am not wary all the time either. Just normal and waiting how things go but still careful. As said before we only have the one body.

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Ahh . . . Very, very interesting perspective on physician’s letter, Silentreader/ Nica. 🙏 😌

I very much understand your point of view & respect it. It truly reveals the diverse experiences we have had with the medics we’ve encountered throughout our lives.

Think you’re spot on: "I think most of us are intelligent enough to know that medicine is alearning process and even a guessing game or a finding process. We know that the doctor cannot know it all. Most of us are polite and respectful. We do not expect a quick fix either, which is more what the doctor in question thinks we do. We know that our illnesses are largely individual and it is not easy to find out exactly what." 👍👍

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And, sadly, l think the physician’s letter 📃 reveals the ‘types’ of patients 🤕 😷 (& patient expectations) that medics 👩‍⚕️👨‍⚕️ (good, competent medics, as well as less competent medics) encounter.

I think neither perspective (patient or physician) can be painted 👩‍🎨 in broad strokes 〰️🖌 to cover all encounters between the 2. 🤔

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Agreed, just as some physician’s are ‘narrow-minded’ (even arrogant 😤 ), there are some patients who are uneducated/ ignorant 🤪 who expect physicians to have ‘snap answers’ ✅ . . . (Yes, even though you, I, & many others are not one of ‘those’ patients, those ‘unreasonable’ patients do exist. Perhaps the waiting rooms one sits in (& the conversations one (unwillingly) overhears), reveals the ‘spectrum’ of patients medics are exposed to (to our horror/ embarrassment) 😳 .)

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I think it’s one of those things that cuts 🗡 both ways . . . ‘poor’ physicians & patients with poor attitudes, mistaken/ false assumptions, inability to communicate respectfully/ appropriately . . . etc. that leads to all sorts of hostilities ⚔️ floating about creating polarisation ↔️ & divisiveness 😡. . . . . 😔 😞

Yes, each perspective has its accuracies (& inaccuracies) going in. Guess it’s something we (both patients & medics) need to be mentally/ emotionally aware of. 👍👍

We can hope we’ve an ‘enlightened’ medic 😇 , & I suspect medics appreciate ‘enlightened’ patients. 😇

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I think patients’ frustrations 😖 in dealing with unwellness & inability to find ‘good enough’ solutions can seep out onto medics. 😣 And, likewise with medics, being on the receiving end of a continual daily stream of patient frustration must be unpleasant/ dreadful. 😔 😞

And, if medics are truly desirous/ inclined toward ‘caring for’ their patients, they must get equally frustrated at ‘recommendations’ that aren’t helping their patients? 😖 Perhaps they feel ‘at a loss’ 🤷‍♂️ 🤷‍♀️ when recommendation after recommendation doesn’t ‘work out’ as hoped/ anticipated & perhaps they silently(?) feel ‘blamed’ for a treatment’s ‘failure’? 🤔

That is, it seems that both perspectives (patients/ physicians) are "equally valid"? 🤔 It seems each of our inability to remedy the root problem causes the all too frequent human reaction to seek to place blame, find fault, even ‘scapegoat’ 🐐 "the other"? 🤔 🤷‍♀️

Merely a ‘guess’ as to some of what’s possibly going on? 🤔 🤷‍♂️

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Yes, I think many physicians & patients are blessedly thinking, thoughtful, reasonable individuals. 👍👍

And, I suspect there’s a fair amount of physicians & patients who are unthinking, unthoughtful, & unreasonable. 😳 😔 😞 And, maybe unwellness 😫 & stress 😩 amplify those unpleasant qualities? 🤔 🤷‍♀️

Interesting . . . to ponder . . . 🤔 🤔

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Sometimes I think unwellness paradoxically brings out the worst in us & the best in us. 🎭

Perhaps our reactions/ emotions to these encounters are as changing as the phases of the moon 🌚 🌒 🌓 🌔 🌝 ? 🤣 🤪 🙃

We’re all so human . . . so at the mercy of disease . . . and how dis-ease affects our body & our mind . . . 🤔

Think we need to move toward understanding the multitude of perspectives, move away from polarisation/ divisiveness, and laser-focus energy ⚡️⚡️ towards improving/resolving problems & disease. Expend finite energy/ time on improving situations — less energy/ time ‘finger pointing 👉👈 / blaming/ scapegoating 🐐’.

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I think because you’re intelligent, deep thinking, Nica, ‘stuff’ that’s directed toward ‘lowest-common-denominator thinking/ mind set’ is ‘off putting’/ offensive. Very understandable. 😌 🙏

Yet, by the same token, I think their are patients (very unlike yourself), who need to hear such a perspective (a ‘reasonable’/ competent physician’s perspective) to help such patient’s grasp that there are reasonable, caring physicians who don’t have ‘snap answers’ & a bag of miracle/ magical pills & treatments that will instantaneously "fix" them. Unreasonable patients need to set realistic expectations when working in the realm of allopathic medicine or any type of healing treatment, program, process . . .

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Back to your excellent, eye-opening points:

Oh gawd! Can’t imagine how awful to be in an environment where ‘titles’ are revered, medics are aggressive/ patronising, & ‘ageism’ is rife!! Oh gawd! Is it possible to find/ ‘switch to’ more enlightened medic within reasonable travel distance?! 😳 There has to be some kind of workaround/ alternative? 🤯

That shocking, ridiculing, belittling, traumatising experience with your little girl (& insensitive boorish medic) may not only reveal shocking bed-side manner but maybe reveals deep-rooted cultural (medical & regional) differences? 🤔 😔 😞 Hopefully that fellow’s long gone . . . long retired 😵 & can no longer practice ‘traumatising little ones’! 😳 Good grief. 🤦‍♀️ 🤦‍♂️ [Perhaps it reveals either a bit too much about his upbringing and/ or perhaps his lack of patient-centric ‘medical training’!? 🤷‍♂️ 🤔 Can only hope 🙏 that ‘type’ of practitioner has faded out of the system 😔 or no longer has 1st-hand contact with patients. Think some medics may be far better suited to handling test tubes 👨‍🔬 , research 📚 , or paperwork 📑 than interfacing with vulnerable young ones 👶 👧 🧒 👦 . ] Perhaps some are unaware of the ‘legacy of trauma’ they create & leave behind in the children (& the child’s parents/ caretakers) they touch by indifferent & ‘rough’ handling. 😔 (What a shame. 😔 😞 Hopefully your beloved daughter has re-framed it, put it into context, & does not allow it to distress her. 🙏 )

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Oh gawd! Tetracycline for an under 5 year old?! 🤯 Oh gawd, Nica! 😱 Oh gawd. [I’m so so sorry you, your little ones, & your family had to endure such poor decisions/‘incompetence’(?). 😔 😞 ] Truly infuriating 🤬 & heartbreaking 💔 . As a loving, caring mum, to have to go though this experience with your little ones must have been heart wrenching. Can’t imagine. . . 😧 And, having to ‘be strong for them’ 💪 to get them through it. 😧

Yes, yes, yes . . . Very, very difficult to have much empathy for the likes of such physicians that you’ve had the terrible misfortune to encounter. 😔 Thank gawd they’re in the past. 🕰 And, thank gawd you’ve gained the insight & wisdom to spot them & stay clear of them. 🙏

Yes, yes . . . with the repeated history of dreadful medic experiences you’ve just described it’s understandable, crystal clear 💎 why such sub-par medics are difficult/ impossible to have empathy for. Very, very understandable. 😌 🙏 They (unwittingly) wreak havoc in other people’s lives & perhaps are oblivious (or simply indifferent) to the ripples effects of their actions — their disturbing legacy. 😳 😧 😔

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Yes, medics may talk & let out their frustrations amongst their peers & even have jibes at ridiculing their patients behind closed doors 🚪. So be it. Their words speak volumes & reveal who they are. Their peers know it. And, their patients come to know it. 😔

Yes, we eventually come to know who they are. We’ve borne witness to their words & deeds. And, blessedly, we live in an age (the ‘Internet’ age) & are able to communicate amongst ourselves to share our experiences. 🙏

Truth ⚖️ outs — eventually. And, if medics (or anyone) thinks they can go about disrespecting or poorly treating others, they will (in time) be disabused of that notion. 😳 🙃

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Thank gawd for your medic friend 👨‍⚕️ who gave you a heads up. Thank gawd!! 🙏 Spared another potentially horrific encounter. 😯

[We have been fortunate 🍀 in our encounters in that ‘good/ competent’ medics have referred us to their ‘competent’ peers & we’ve managed to avoid horrid ones.] It’s a shame ‘dumb luck’ 🍀 (mere ‘word of mouth’ 👄 💬 💬 ) affects whom we’re referred to. 😳 Unnerving just thinking about how a bit of bad luck, a single bad referral, can exacerbate an already difficult situation. 😨 😯 Can’t mentally go there. 🤦‍♂️ Horrifying thought. 😱 ]

And, equally unnerving that other physicians 👩‍⚕️👨‍⚕️ know of their peers who are ‘problematic’, yet those ‘problematic’ medics continue to practice without remediation!? 🤔 😨 🤯 🤦‍♀️ 🤦‍♂️ [Perhaps can hope they get the re-training they need or maybe ‘move on’ to some other role where they’ve less probability of harming patients? 🤔 Don’t know. 🤷‍♀️ Things get so complicated, so complex, so nuanced . . . Never a simple solution. 🤦‍♂️ ]

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Yes, yes, beginning to more fully understand. The "gods in white" perception I comprehended from a time (& a culture) as a youth growing up, is now mostly passed. Guess it very much depends upon when & where one spent one’s formative years, who one was raised by, etc.. Unquestioning respect/ ‘obedience’ was the norm from what (ancient) memory recalls — ingrained from elders, media, culture, etc.; no one had the thought (or had the audacity) to ‘think’ otherwise. 😳 Medics were educated, ‘knowledgeable’, respected . . . more-so than our unsophisticated, unassuming elders who ‘fell into line’ & raised us expecting us to behave likewise — ‘obey’. 🙃

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Yes, yes agree. Think bears re-iterating:

"We are not there to have to be careful not to hurt their feelings. We are seeking help from them and they get paid to do this. . . .

We know they are people, just people, doing a job they get well paid for and were trained for. We know that being human a mistake can happen and if an honest mistake then hard if it happens to you, but understandable that it could. We do not expect the quick fix but would rather have something that might take longer but does not damage us. If that is possible. . . .

. . . a good doctor is a person who treats his patients the way he would treat his own family. If they were ill.

Why should we patients have to put on an act for fear of "offending" the person. Why should we act less intelligent than we are. I mean - personally, I am well aware I did not study medicine and know very little. What I do know though are my symptoms and how I feel and over the years what was good for me and what not. Half the time these trained people do not even listen you know. So you are supposed to ignore that something did not agree with you and pretend you know nothing about it? That is not a working together for the good of the patient. That is stupidity. Doctors who are as frail as that in their characters should think of doing something different.

. . . I am well aware that we need medics and that they save lives. We can be grateful but there is no need to worship or act as if they do this for nothing. They are paid to do it. They are doing a job where they often meet people on their last legs. Psychology should come into it and it is in their training but seems that a lot of doctors do not pay any attention to the fear of their patients, for whom in some cases it could be life or death and many suffering and in pain. Compared with that - the doctor is fit and no problems a lot of the time. Many of them young and do not know what pain is. Only when they themselves experience this can they really relate and then some of them change."

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Yes, yes, yes. All points well taken 👍👍 & beautifully 🌺 said, Nica!

Am so glad you said it so well, so clearly — so unmistakably. 😌 🙏

Think many of us need to hear 👂 this — especially those of us who’ve not encountered these ill-equipped (temperament-wise, bed-side-manner wise, psychological-wise. . .) physicians who are perhaps in the wrong end of the profession. 😱 Perhaps, they’d be better suited to some other medical capacity 👩‍🔬 👨‍💻 👨‍🏫 rather than interfacing with patients directly? 🤔 After all, patients do indeed have enough to deal with (unwellness, suffering, disease, debilitation, fear, mortality . . . ) that we don’t need a callous, insensitive medic to add to our burden atop everything else!! 😱 🙃

Hope to gawd things change: outdated physician attitudes catch up with the times. Hope to gawd no one believes anymore the old "gods in white" 😇 falsehood. 🙏

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Glad you got your wedge pillow 📐 & relieved you’ve taken a break from Caritas. 🙏 😌 (Yes, yes, very difficult. 😞 Takes a silent 😶 toll on our body🕴, heart 💓, & mind 🧠 to bear witness to such suffering. 😔 ) Need a blessed reprieve. 😑 Need to take loving good care of ourselves before ever considering going ‘back into the trenches’. 🙏 😌

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Oh my gawd, Nica. Your poor beloved father. 😔 🙏 Oh gawd. Unconscionable!! 😱 How that was allowed to go on!! 😰 So many turning a blind eye & allowing it!! 🤭 Criminal!! 👮‍♀️🚨 I’m so terribly sorry your father had to endure such indifference (cold-heartedness) & passed at such a place in such a manner. 😔 😞 😓 Unbelievable the things that go on — are allowed to go on. Heartbreaking. 💔 Outrageous. 🤯 All under the guise of healthcare & ‘saving money’. And, perhaps just as scary — all done under the nose 👃 (& eyes 👀 👀 👀 ) of how many silent 🤫 🤭 ‘disempowered’(?) witnesses?! 🤐 🤐 🤐

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Yes, yes . . . fully FULLY understand, Nica. 🙏 😌 After experiencing what you’d experienced, witnessing what you’d witnessed Trust (‘good-faith’) has been shaken/ broken.

It would indeed be stupid/ foolish 🃏 to take at ‘face value’ that each medic is doing their job well/ properly. 😳

Yes, yes . . . question, verify, & continue to be careful & exercise good sense. 👍👍 I hope you never again have such horrific experiences with medics (or the medical ‘system’). 🙏 😔

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Glad you know what to look out for — you know the signs ⚠️ 🚸 🛑 — and don’t minimise/ dismiss/ ignore those types of encounters. 👍👍 Yes, what awful, dreadful, nightmarish encounters. 😨

Enough of our medics do indeed have ‘feet of clay’ 👣 😔 — not pristine "gods in white" 😇 🧖‍♂️ . We really should be more thinking, thoughtful, questioning & not automatically assume our medics are ‘right’ & ‘know’ what their doing at each & every turn — especially if our own personal experience & intellect/ intuition ‘screams out’ 🗯🗯 (reveals) otherwise. 🤔 [Think we need to hear, listen, & heed our ‘inner voices’/ deeper wisdom 🦉.]

Very good lesson to learn, Nica. Much, much appreciated that you took the time to thoughtfully express it. 🙏 🤔

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Again, I think you speak sense, logic, reason that many of us NEED to hear👂 — to be aware of. As heartbreaking 💔 as those awful/ dreadful encounters were, I think your speaking about them — sharing them aloud — benefits us all. 😌 Deeply appreciated. 🙏

Please keep taking as good a care of that 1 body 🕴 as you can, dear lady. 🙏 😌 We need you ‘kicking around’ 💃 ☺️ , & continuing to speak truth ⚖️, opening our eyes 👁 👁 , & rousing us from ‘unaware’ slumber 😴 .

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🙏 🍀 🌺 🌞

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Hi Kai, I understand you completely about it cuts both ways. Yes - as in all things.

There is a difference though. Firstly the person who is the patient is often not himself as fearful and in pain and the other party, the doctor, should take that into consideration. But instead they act as if it is all personal and as if the other side has to be in control all the time. Whereas they themselves are often very rude and harsh and do not have the excuse of being old, frail or ill and afraid. I think the medical training has to do with this. Not enough attention to bedside manner.

The other thing is the two countries we are living in. It is like democracy versus communism actually.

The English have always been more outspoken in my opinion. Or that is the experience I have. And I think a difference of opinion far more accepted in Britain on the whole except when it is Brexit ha ha. God how people have changed when their emotions at boiling point.

I went on the Brexit forum in Facebook to see what was going on as living here, much of it had passed me by. Every other word the F word. And there was me saying to Klaus - my people are more polite.

Anyway - what I mean to say is that in all the years I have lived here, I have never encountered, witnessed or heard of someone standing up to a doctor who was treating him like an imbecile. It just isn't done. They seem cowed somehow.

I am not the only one who experiences this. Other british or american people on holiday or living here do too. I have met and spoken with them and read about it on the internet.

toytowngermany.com/forum/to...

Here also the opposite of what that doctor's letter said - link you sent me - and more what I experience here.

futurity.org/5-ways-doctors...

A person from the States living here periodically. He was also writing about feedback on the internet so that others had an idea what the doctors were like and could base their choice on that. They tried this a couple of years ago but hardly anyone agreed to it. Most German doctors are against feedback. No wonder!

I read this below not long ago and if you search for it, there are more such writings. Of course you can have a positive experience too but I think on the whole he or she got it right.

"umghhhJul 27th 2014, 09:08

That doctors do not communicate with patients treating them more like a nuisance and object than a human being is not only a problem associated with economy i.e. they have only this much time but also with skills in communication which are very much limited by ignorant masses 'wanting antibiotics for a flue' and some such.

That patients views are only positive is a sign of that ignorance - there are a lot of faults in diagnosis and treatment up to malpractice (not necessary tests etc would I suppose be the biggest thing). I could spot some myself because after I was forced into private insurance by German legal system I had to learn about how to deal with doctors so that they do not harm me to much, both in health as in financial sense. This view is confirmed by independent studies in Germany so I know I am not alone.

I am sure some of those trends are visible well in US.

The feedback mechanisms are a good idea but how that can be done easily by a person educated in medical, statistical and other areas vital to work with such feedback systems is not really clear to me. I guess we should watch more of dr House to 'educate' ourselves and hope we never get sick and die by a stroke of light from heaven in old age.

I think the health insurance and health systems are 'slightly' different from other areas of economy in many important aspects while population at large is already lost in understanding simpler problems of their digitized lives which helps to explain the great understanding for actions of NSA and big companies doing the same for profit."

A lot of patients here too afraid but above all trained not to say much to authority. I mean they did not even strike here for years, even if they had a case. It is a different mentality.

Lastly this is something I read a while ago and although not relating to German doctors but doctors as a whole it does prove my point - and yours. Might sound a bit overdone but there is truth in it. medicalschoolsuccess.com/ho...

I have experienced the personality -change in my own daughter and also son in law. They both studied sociology (met when in their early twenties while studying this) and both gradually turned into someone else after studying medicine. Colder and less caring and far more egoistical.

My son in law who lived next door to us with Kathrin - they rented the flat attached to our house - used to come home whistling and happy when he signed death certificates as that brought in extra money. This is true. He once turned away a small child while on night duty and the father had to drive a further 30 km before it was treated somewhere else. He later complained to the hospital in question but luckily for my son in law, nothing came of it. Another time he made a diagnosis mistake and gave someone the wrong medication, almost resulting in their death as should never have had that. Luckily for him he came out of it ok and my son in laws attitude is mostly - someone else is to blame (often the patient) or couldn't care less. Only worried about himself. I think a lot of them are like this, not only my son-in-law.

Through our children we met a lot of fellow students and later other doctors who visited etc. as they have a lot of friends and mainly friends in the same profession. So I know and knew a lot of them privately and have been there making sandwiches and coffee etc. loads of times, so could eavesdrop on a lot of conversations between them.

Yes - if you are really into it and want to help and are an idealist of course it must be hard to have to admit that you have limitations. That you are not god and someone is incurable or has reached the end of the line, of what you can do for them. Most of them do not think that way though. I have heard so many discussions over patients privately and it was never about that. Only how irritating patients are in the main.

I understand that perfectly. Living as you do in Britain it is hard for you to fathom what it is like here. How different it is here. People fear going for dole money and are often treated with disdain by those they apply to and others living in their neighborhood. Seeking any kind of financial is seen as a weakness. So that old women and men living on a pittance, do not apply for things within their rights as they think it is shameful.

Except for the common layabouts, usually young and could work - we have them too.

Germany is seen as a well-off country but in reality, we have a rich-poor gap that is getting a lot wider by the year.

Mainly old age poverty. I know that existed in Britain too as in my time a relative of a friend who lived in London died because she could not afford to use the heating enough. But Germany is doing well and it should not be this way that most pensioners have to choose between heating, food and paying for medication. People who have worked all their lives. A lot of aids not paid for anymore. Glasses and teeth, hearing aids. Old people, divorced mothers with children or those who lost their jobs are using the soup kitchens more and also buying bread that is old (Bakery sells it the next day for half price) or buying fruit and veg that has seen better days. Sometimes it is almost crawling away.

I go to a shop in the best part of town in Bremen because I buy American steaks there sometimes because we have had so many scandals concerning our own meat and also chicken. I buy french poulettes when i go there sometimes and not the German. You cannot get that in most other shops. But it is expensive. I trust that supermarket as the rich buy there and if the food bad quality they would lose their custom. .. We are not rich but ok amd we do not eat meat more than once a week so affordable to buy the more expensive. Most of the family were vegetarian for 14 years and more, but due to iron deficiency (me) I went back to it and then my husband and daughter too.

And I go to this shop or supermarket and see veg or fruit in this basket and so rotten already and some older women who live nearby and probably is too expensive a shop for them normally as things are always at least 30 pence dearer - milk and other staple foods - than the same elsewhere. We only buy the meat and some English things I cannot buy elsewhere.

My point is - this is a shop where rich people shop and it must have a huge turn-over as always full. It is called Lestra. And then they offer this kind of fruit and veg??? They should give it away not sell it when like that.

I think me speaking about things here might be not all that helpful, as you write. Because of the mentioned difference in mentality in this country. So this my last on the subject of doctor-patient relationship.

My doctor is coming back later than I thought so am having to wait until the 20th. Will write what happened concerning medication then.

Hope I have not written a load of rubbish here as it is late and tired. Thanks for this discussion and your point of view Kai and stay well too. Or as best as.

Nica.

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30-minute audio slide presentation on how to safely reduce Methotrexate (MTX) over time: If, When and How to Safely Lower Methotrexate: vimeo.com/239379622

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Good things to reflect upon if you want to try to get off Mtx.

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Yes. 👍👍 Found it sensible, well thought-out approach, Simba1992 ( 🦁 1️⃣9️⃣9️⃣2️⃣ ).

[Think this was process andyswarbs implemented ( healthunlocked.com/nras/pos... ) to gradually reduce (& eventually wean off) MTX? 🤔 Pretty darn amazing! 😯 😳 ] 🙏 🍀 🌺 🌞

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