Medication: Hi all, can you manage RA without... - NRAS

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Hoffster1984 profile image
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Hi all, can you manage RA without medication? Does anyone do this successfully?

Thanks!

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Hoffster1984 profile image
Hoffster1984
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Cazzyme1 profile image
Cazzyme1

The only medication I take to manage my RA is prednisolone 10mg daily. I stopped all other meds when I was hospitalised with really bad pneumonia and had no idea I was so ill. I have diabetes and already have a compromised immune system so figured the drugs used to push back my immune system even more were not a good idea. My RA is very active but I manage the swellings etc and deal with each day as it comes.

helixhelix profile image
helixhelix

There are usually big debates about this subject!

RA, and the related diseases, are immensely variable in how they affect people and in how they respond to treatment. From reading many people's RA stories over the last 5 years on here I've come to the conclusion that for some people they have a form of RA that responds well to diet and lifestyle changes, and they can manage without medication. In the same way that there are some people who have a form of RA that responds to drug X or treatment Y, and lifestyle changes don't make any difference whatsoever so life without drugs is not an option.

Unfortunately there isn't as yet any way of working out in advance which type you are, so you just have to try things out to see what works for you. There are a group of people who've used the drugs to get things under control, alongside lifestyle changes and then slowly tapered off the medication. You might be one of them, but equally you might not!

The statistics seem to show that something like 75% of people manage reasonably or extremely well with drugs but have to stay on them, and 5 - 10% have a dreadful type of RA that doesn't respond to anything and is just miserable. And 15-20% have a mild RA that can eventually be managed with minimal intervention.

Damaged profile image
Damaged in reply to helixhelix

Unfortunately I am in the 5-10% of the dreadful type. The allergies just add another element of aggravation. I had a biopsy We'd. but no results yet. The blood work is fine. It may strike people as odd but I am hoping for a cancer diagnosis. Not because of a death wish simply because I have Critical Illness insurance. Despite the long list of labels ! I need one that qualifies. A hundred thousand would make the time I have left a lot more tolerable. I have lost two income streams , my pet supply store and financial planning. The sad reality is you need money far more when disabled but cannot access it. My meds are paid for but not the endless trips to hospitals, doctor appointments and testing. For all Canadians belonging to this group, the government has a Disability Tax Credit available. This is meant to cover the many cost associated with critical illness. There are many agencies out there charging from 30-40% to help people apply. This is NOT needed. The process has been simplified so that anyone can manage it on their own. They will also go back as much as ten years, to a maximum of 40,000. It is vital that we make people aware of the support programs available. So many qualify and are not aware. I know every single person could benefit from financial support. It is our tax dollars after all.

medway-lady profile image
medway-lady

Is it worth the risk of serious damage and possibly life threatening conditions? For me no, its not, so I take the medication and am grateful that it works and works well. I find it hard to believe that any diet can "cure" or help"manage" RA. Having said that I'm also sure that a positive attitude and being of a healthy weight can make a difference too.

No doctor is going to prescribe medications that are expensive and unneccesary so I think you must take the advice of your medical professionals and then whats the harm in trying cutting down on some foods. But as for some of those whacky diets out there on cyberland, then no. It is important that if you think gluten is affecting you that you eat gluten to be tested. I have Celiac and so are gluten free and I promise you it has made no difference to my RA but Leflodomaide sure has.

PFKAAde profile image
PFKAAde in reply to medway-lady

I think the thing is, well lots of things. 😀 A lot of the research on the gut microbiome is cutting edge. Happening now. The NHS is not so cutting edge when it comes to implementing some of the latest research. It's evidence based, and it takes time for evidence to be created. Multiple studies showing testable, repeatable results.

Not sure how many good quality, large scale studies have been done on the effects of diet on auto-immune conditions, but I could guess.

Also anyone that says eat this to cure that is to be taken with a pinch of (gluten free😀) salt. Nobody with any kudos says diet will cure anything. Merely that changing your diet may, just may enable you to reduce the amount of medication that you rely on to function. In some cases right off at some point in the future, if as helix says, you are one of the lucky one. But relapse to the wicked ways of old at your own peril.

Nobody is saying gluten free cures RA. From the little I understand of the subject there are many potential groups of food and drugs that may or may not affect each individual. Key word - individual.

It isn't just food, but also things that affect the way we process our food through the digestive system, and change the types of food that reach different parts of our gut in different timeframes. Proton pump inhibitors, for example reduce the acid in our stomachs. This in turn means some food isn't broken down as much when it enters the gut. This in turn means different bacteria can utilise this food than would perhaps otherwise be the case.

Add to that antibiotics, both given medically and ingested in our food (meat and dairy) and tap water from water treatment plants. These affect bacteria, for obvious reasons. Chlorine and fluoride in tap water likewise.

All of these things build up over time, is how the theory goes. From the little I understand anyway.

So stopping gluten on its own probably won't make much difference.

And nobody with any sense suggests not taking your meds. Of course the doctors know what they are talking about. The medicines we are prescribed in western medicine have all been tested to oblivion and are prescribed because the available evidence shows that they are the best things we have.

But they largely only treat the symptoms, either by reducing inflammation or suppressing the immune response to a perceived invasive pathogen.

They do not address the cause of the condition, and until science comes up with a way of editing our genes and resetting the 'system', removing the environmental cues that trigger the erroneous immune response would appear, on the face of it, to be as valid as any other method.

Ponder finally why autoimmune conditions are largely a feature of the 'developed' world. The countries where highly processed, high meat content (with a side of antibiotics) diets are complemented with 'clean' (chlorine laced) water and disease, including the (viral) common cold is often countered with - antibiotics.

I'm not saying for one moment that we'd be better off in the developing world. Just saying, it's (organic) food for thought.

And why is it always diet versus meds, can it not be both?

Ade

medway-lady profile image
medway-lady in reply to PFKAAde

Actually in the past a couple of posters have actually said RA is"cured" by diet, but I do agree with most of what you say. My point really is that we must not feel guilty if someone suggests that diet can "cure" anything which is an autoimmune disease. And it affects more than can be felt as pain or seen as swelling.

PFKAAde profile image
PFKAAde in reply to medway-lady

Well, I guess if you are in total remission it might feel like a cure, but I agree it isn't a cure. If you repeated the same set of environmental triggers it would almost certainly lead you down the painful path again.

That's why you have to make permanent changes to your diet and lifestyle and remove the triggers for ever. If you can.

Inflammation is the key, whether it's visible or not, remove the inflammation and you won't have problems internally or in your joints. So the theory goes, and that's why it is essential to do anything dietary in conjunction with your care team. So they can do any tests, scans, endoscopies or whatever else they feel is necessary to keep on top of any unseen damage.

No serious medical person will claim to cure an autoimmune condition with diet or anything else IMHO.

I have no proof anything works by the way, I'm just recounting what I read. When the time is right I may embark on a dietary approach (alongside my medical regime), after all - what have I got to lose?

Kind regards

Ade

Amy_Lee profile image
Amy_Lee in reply to PFKAAde

Ade,

You have said my mind!

Ali_H profile image
Ali_H

Well hi Hoffster and welcome,

The diet 'V' meds debate is an interesting one!

Basically Helix has summed it up in my opinion .... Some do and some don't respond!

I've cut back on gluten, dairy and refined sugars. Also tomatoes, potatoes and chilli peppers tend to bring some aches for me if I eat too many so occasionally I'll have a chilli but other wise steer clear. I'm no saint and its ice cream season so I have to watch myself 🙃

My RA, which was diagnosed September 2014, is maintained with 20mg of MTX a week. If I have flare I use naproxen or asprine for their anti inflammatory effect. I also take turmeric for the same reason. When the fatigues hit I rest so on occasions it's straight home from work and to bed just because that's how it has to be. I teach full time so cant do flexi hours or anything like that when fatigued...but then there are the hols for recovery time - swings and roundabouts!

When considering which road you wish to take be aware of the hidden erosion of RA on joints as this damage can creep up on a person unknown for sometime. Be sure to ask for X-rays on hands and feet and any other joints that are regularly painful these will give a truer picture of what is happening and will also act as a baseline for future assessment of where your condition is going and whether your treatment is working for you (along with the visual swelling, pain levels and fatigue felt).

It would be worth keeping a food diary for a while and see if something appears to be triggering or adding to your aches and pains. Also possibly an exercise one to see if some forms are stressing your system too much... I'm sure you know the difference between the satisfying aches of a blessedly good run yesterday and RA - or maybe, due to work levels or other stuff in your life, some days are proving not positive days to push on the exercise front.

I hope some of that is helpful

All the best

Ali

Hoffster1984 profile image
Hoffster1984 in reply to Ali_H

Hi Ali,

Very helpful indeed thanks! The sooner I see a consultant the better in sone respects. Yes I know exactly what you mean with the pain types of running and then others... I'll keep up with exercise a plenty as long as I don't suffer too much fatigue. I use the DAS app on my phone but should definitely keep a food diary too. Haven't really had craft beer in 3 weeks... which I love! Not sure if that's helped or not....! I'll cut out sugars too so less biscuits etc and chocolate. Not that I are huge amounts anyway. I've been shotting extra virgin olive oil every day. :-)

Simba1992 profile image
Simba1992 in reply to Ali_H

For the diet to have a chance it's not a question of cutting back and eating wholesome food. It's actually quite a demanding therapy where "cheating" is not possible if you want it to work. And also you need to give it time. Many people have immidiate effect but then again many need to wait for months.For me the effect took 3 months to kick in but then it really did. The inflammation is the culprit if you get it down with diet it's a better alternative than taking immunosupressants and if you add LDN the results are really promising. The hard meds only work for about 60% I have understood and decreasing inflammation with autoimmune diet works for 70% so I see no reason why not to try😊

woodstar1 profile image
woodstar1 in reply to Simba1992

I'm really interested in the LDN, how are you getting on with i

Lucy11 profile image
Lucy11

Hello Hoffster!

I wish you the best with your upcoming consultation and with whatever treatment you decide to go with. I was diagnosed last year in December and just like many others couldn't imagine the prospect of taking medicine for the long haul but I strongly encourage you to take whatever your doctor suggests. You can always stop the meds whenever you want. You can also do what a lot of us do and try to eat as healthy as possible and eliminate foods that you find problematic or even try a completely new diet and lifestyle change and like Helix said try to taper off and see if you are one of the lucky ones. Don't we all wish were were one of those! Just don't let this disease sink it's teeth in as once it does it's that much harder to control. Research shows that the sooner you get diagnosed and the sooner you start treatment the better chances you have at remission. Most of the time remission is medically induced and can change at any time but you'll find what's true for you.

I was an elite Ironman triathlete for many years and when I could no longer run several years ago with foot issues I turned to long distance cycling events in the high mountains. Last year I did a race in Mont Blanc that was 220 miles with 26,000 ft of elevation gained all in one day. Six months later I was diagnosed with RA and it knocked me on my rear end. Five months after treatment I started seriously cycling again and just last week started running again. It's nowhere near perfect and I'm learning what my new normal is but coming from not being able to brush my hair or hold a cup of coffee to where I can actually lace up my trainers again for a short run is a blessing. Long may it last. And long may you run!

magglen profile image
magglen

When I was first diagnosed with RAD I read a book which promised that the special diet recommended would stop the disease. Unfortunately it didn't work and now I wish I had started the medical treatment earlier which would have prevented the distortion of my joints, especially fingers and feet, and stopped me being so ill! As medication is so expensive for the NHS if there was any non medical treatment that worked I would have thought it would have been put on trial years ago.

PFKAAde profile image
PFKAAde in reply to magglen

Read my response above 😀

They have only recently started to realise the huge impact our diet has. There is not a big 'will' to fund large scale trials that will not end in a profit for someone. Blame capitalism.

Any diet that suggests not taking your meds should be given a very wide berth IMHO.

One problem with a dietary approach, and one that may well stop the medical community pursuing it more, is compliance. Not everyone (many?) will follow such a total change to their eating habits. Resistance, even on boards like this, is immense.

But give someone a pill to take....

I too read a book early on. It too failed to work. I took my meds too. They didn't work either. For about 7 years, on and off.

Possible reasons for the lack of effectiveness with the diet for me were not following it long enough, not following it completely / ignoring the bits that I didn't like. And I'm sure others.

The book I read was written well before current advances in research into the gut microbiome, and was probably based on clinical observation rather than hard and fast science. It worked by chance, maybe. For some. It also encouraged not taking drugs, another reason I didn't follow it totally.

Sorry you had problems at the start, you could always read up on the current thinking if you were still interested, and try it whilst still taking your meds. If you have complete and total remission you could then, and only then, consider reducing some of your meds, in conjunction with your medical team and with their agreement.

Regards

Ade

beauty96 profile image
beauty96

I have never had any medication cos of allergies to the medication esp aspirin. I keep my symptoms down of RA, OA and osteoporosis with Tai chi, twice a week, I actually each it. Also diet as I have many food intolerances and allergies. Last time I saw a consultant was in 1994 and before that 1982 cos they can do little for me. You have to live with your own body and do what IT wants. Be kind to yourself and look after what God has given to you.

Damaged profile image
Damaged

That is the best advise I have seen. The two approaches are not mutually exclusive. I also suggest becoming familiar with mutagenesis and epigenetics. I had my genetic screening done via 23andme. Using the raw data I went to Livewello. This company interpreters the raw data for you. The approach is referred to as targeted or functional medicine. The treatment and medications are designed to suit you genetic make up. As a person with endless allergies this has saved me a lot of needless drug reactions. This program is amazing. My Rheumy loves it. I saw her today. I have a rash, likely , due to Humira. I am currently on Orencia. I have having major migraines and back pain. I have agreed to one more infusion. It will then be three months. But she truly is such a fantastic Doctor. She also contributed 300. To walk for Arthritis on Sunday. I have elivated Leucocytes and have have low neutrophils for months. This is likely as result of lymphatic leukaemia . I am seeing an oncologist tomorrow afternoon. That is fast. They are currently doing a study on tell cancers lol good pairing. The key is to find someone you trust then learn all you can about your conditions.

flow4 profile image
flow4

Hi Hoffster. Personally, I think the risks of trying to manage without meds are too great. I was undiagnosed and untreated for 3-4 years, and consequently I have a lot of joint damage, and have needed a hip replacement (I had a lousy GP and inflammatory arthritis is poorly recognised if you don't have 'classic' symptoms). There are testimonies from a small handful of people who say they manage their symptoms through diet alone, and there is reliable evidence that a good diet DOES help with symptoms like pain and joint inflammation, but those are effects on the *symptoms* of the disease, not the disease itself. There is NO evidence that diet controls the disease progression and joint damage *long term*. Inflammatory arthritis progresses invisibly and more-or-less slowly, so if you opt not to take meds that are known to work in addressing the disease process itself, and choose instead to use diet alone to help with its symptoms, then I personally think that's risky.

That said, I have been veggie since 1987, and eat well with lots of fresh fruit and veg, do not eat processed foods, avoid sugar and bread, and drink loads of water and no alcohol or soft drinks... So obviously I think that helps keep me generally well :) And I do find that if I don't keep to this 'diet', then I feel worse. But I still keep taking my medicine!

Hoffster1984 profile image
Hoffster1984

Hi, sounds like you have a healthy diet! I'll certainly take what the Consultant recommends for me. Whatever helps! Thanks for all of the info.

flow4 profile image
flow4 in reply to Hoffster1984

I do. And I *still* developed inflammatory arthritis... 😩

Hoffster1984 profile image
Hoffster1984

Brilliant, thanks!

Simba1992 profile image
Simba1992

Yes it does seem possible at least in my case and so many others ( abundance of anecdotal evidence). My "protocol" for treatment is a strict AIP diet+ LDN (ldnreseach.org)+ vit. minerals and suppliments. Diagnosed with RA 2015 Dec. Inflammation and pain and fatigue down 80% and decreaasing still. Energy back and doing alot of excersizes and feel my strength returning i muscles. So it is possible and really worth a try😊

PFKAAde profile image
PFKAAde in reply to Simba1992

Hi Simba1992

How are you finding the LDN (Low Dose Naltrexone for anybody wondering)?

Are you in the UK and did you have any problems finding a doctor to prescribe it? Finally who supplies the LDN?

Hope you don't mind me asking questions about it, having read up on it in the past I've never found anyone actually taking it...

Regards

Ade

Simba1992 profile image
Simba1992 in reply to PFKAAde

Hi Ade,

I have now been on LDN for nearly four months. Anyways LDN together with the AIP diet seems to really work. There are very good results seen in RA, unfortunately no scientific research yet done. I really encourage you to look into ldnresearch.org and ldnscience.org where there is an abundance of information. Listen also to the interview with Dr. Birkson on ldnscience site, very interesting for us with RA.

It is not difficult to get LDN in UK and also support for the treatment. LDN Trust, the pages I refered to gives all the info and help you need.

I live in France and my LDN is sent to me from a compounding Pharmacy in Glasgow that works with Clinic 158 that supplied me with the subscription. Some GPs are ok with LDN, those who have knowledge about it, all don't. Many have started with LDN and the GPs have come on board when seeing the possitive effects. LDN Trust has also a info package you can give your doctor.

PFKAAde profile image
PFKAAde in reply to Simba1992

Ah, yes I've seen those sites before and noticed the closest compounding chemist was in Glasgow. Didn't realise they delivered though.

At the moment Humira works for me and I think I would be crazy to rock the boat. Pretty sure that's what my rheumatologist would say also, but at times in the past we were running out of options (before some of the latest biologics were widely available), and there is always the prospect of that happening in the future, so it's reassuring to know there are options.

I might have to have 'the conversation' with rheumatology at my next appointment.

Thanks for the info and I hope you manage that last 20%.

Kind regards

Ade

Simba1992 profile image
Simba1992 in reply to PFKAAde

There are many Humira users that also take LDN. LDN if anything supports the use of Humira, there is no interaction other than the support of your own immunesystem that may counteract the possible negative effects of Humira. There are also many who have been able to leave Humira once the effect of LDN kicks in.

Good luck to you and best regards😊

PFKAAde profile image
PFKAAde in reply to Simba1992

Interesting, hadn't really thought of adding it in to the current regime.

Must remember when I see rheumatology to have a conversation, I have a lot of time for my rheumatologist - it would be interesting to hear his thoughts on that combo.

Cheers

Ade

Simba1992 profile image
Simba1992 in reply to PFKAAde

Don't be discouraged if your rheumy is not interested to discuss LDN. Rheumys are tied to the official protocol and often find they cannot prescribe LDN because of this but may be fine with that your GP prescribes it. I would print out the info to doctors about LDN, from LDN Trust pages before you see your rheumy. It will be of great help if he is not familiar with the med.Hope your meeting turns out well😊

PFKAAde profile image
PFKAAde in reply to Simba1992

Nah - he's a pretty sound kind of chap, he'll discuss it and I'd be amazed if he hadn't even heard of it.

Like you say, probably won't be able to prescribe, but that's when living next door to (one of) your GP comes in handy. 😉

Thanks for all the info.

Ade

Sheila_G profile image
Sheila_G

Medway-Lady. My sentiments exactly.

PFKAAde profile image
PFKAAde

😊 You're too kind Kai--, 'getting it' and doing it are different things though.

Always fancied a helicopter - cheers!

In all seriousness though, I totally understand why it isn't for everyone, myself included at this particular moment.

It seems there is so much more to it than diet alone. And 'merely' changing everything about the way you eat may not be enough. Without the backing of lots of lab work and investigations to figure out exactly what it is that you are, hmm, reacting to, you could eat a 'perfect' autoimmune friendly diet and still not find the result you hoped for.

This will require some serious (and seriously expensive I assume) lab work and the assistance of highly trained practitioners to establish which of your systems is (are) 'misfiring'. Endocrine, adrenal, various systemic pathways, undiagnosed infections, cross-reactions the list is mind boggling and extensive.

I find it hard to enlist the help of someone claiming to be an 'alternative healer' because as, I think, Richard Dawkins says, "there is no alternative medicine, only medicine that works and medicine that doesn't". Or something along those lines.

The difficulty is finding someone that is adequately and scientifically trained and also receptive to current thinking. They must exist, but where?

As previously discussed I am scientific in nature. I am not faith based, another quote I like is "the good thing about science is it's true whether you believe it or not". 🤓

Just because science hasn't found an answer yet, doesn't mean it isn't so though, I understand that and can relate to some of the stuff about gut dysfunction.

I am still searching for my pathway. And taking my meds. I suspect I always will take something, at the moment I would like to get down to Humira alone, and apart from painkillers that I am reducing constantly I am not far off.

Another aspect I am struggling to reconcile is the need, at this moment in my life, to build muscle mass as quickly as I can due to previously mentioned back problems. To assist with this I supplement with (organic, grass fed) whey protein. This works, according to studies. But prevents me from stopping dairy. If I don't stop dairy, what's the point in stopping anything? It's a rhetorical question, but illustrates the complexity of the situation and the uniqueness of every persons' situation.

Good luck with your journey.

By the way, I can't afford to run the helicopter so will have to return it. 🚁 Thanks all the same. 😀

Ade

Amy_Lee profile image
Amy_Lee in reply to PFKAAde

Hi Ade,

I agree with all you had said here. I do not believe RA can be cure by diet without medication. However, to have both will be the best way to try. I will not skip my medication just because someone tells me that diet will cure RA. I am not ready to risk my joints for that.

trianon profile image
trianon

I was diagnosed 58 years ago when I was 2 years old. There were no drugs available for me then - only soluble aspirin. Every joint was severely affected. All of my joints are severely deformed. If I was diagnosed now and offered the medication would I take it? YES! YES!

Simba1992 profile image
Simba1992

I takes a lot of money and time before the results of research is seen in treatment protocols. I did not find waiting an option but started to do my own research on understanding RA and the biochemistry in the autoimmune reaction. Also finding out all there is to know about the alternative, nontoxic treatments what lay behind and how much anecdotal evidence supporting them are found. I constantly learning more, finding LDN was one treatment that seemes to really have a possitive effect on AI diseases in calming and rebalancing the immunesystem. We all choose our paths, meds work for many just as AIP and LDN work for others. There is always risk taking when choosing a treatment option, eather way.

PFKAAde profile image
PFKAAde

Ha ha. Cripple fight. I never use the term 'lol' (oops), but I did to that. Well done you.

Not sure that will be to everyone's taste mind, there'll be pearls flying everywhere. 😳 😀

Excellently described as well about the intricacies of the human physiology. Put like that it makes a lot of sense.

Not sure I've ever seen Voltaire and Southpark referenced in the same post before. Extra marks for that.🤓

You are, as always, spot on with your observations / comments / advice.

'Do the best you can.'

I'll give it a go.

Kindest regards

Ade

I find these discussions interesting. I hear people make comments about there not being money in studying the effects of diet which I don't disagree with. However, when I have sought alternative options and for example, the Paddison Programme (which makes spurious) claims is not free either!

I'm not convinced about the gluten free 'movement'. I worry that it's a fad. However, if you can go gluten free and it doesn't affect the quality of life, your happiness, your finances AND makes a difference to your health, then surely you don't have much to lose. It's not possible for me due to my GI disorder but I try to eat as healthily as possible. I do take various vitamins and have tried herbal remedies. I am fairly open minded but also, take things with a pinch of salt because I've spent a few grand over the years trying various treatments that were never going to work.

Simba1992 profile image
Simba1992 in reply to

Hi Crashdoll,

Yes there are a lot of fads and phony cures for this and that. But if you really want to find out what is real and useful information you need to do a lot of research and look into scientific papers and studies. There really is a lot of very useful new knowledge. As an example is the abundant scientific data showing that gluten is hard on our gut and brings with it many problems, especially for people suffering from AI diseases. The effects of suger and dairy are also well studied as is the antiinflammatory effect of the ketogenic diet. So there are a lot of things we as patients can do to get the feeling that we are in control of our situation and stand behind the treatments we are receiving.

earthwitch profile image
earthwitch

One thing you need to consider when you read or hear about peoples stories about managing this kind of disorder without meds, is how long they are able to remain symptom free. Unfortunately a lot of the "cure" stories seem to come out after only a few months or a year without meds, and that just isn't long enough to tell, as a natural remission could easily last that long.

What is fairly clear though is that you can do a lot yourself to keep yourself in the best possible condition and lessen the impact of the disease - regular gentle exercise and stretches, good diet, give up smoking, seriously limit alcohol, etc, will all help keep your body in the best shape to fight this.

Hoffster1984 profile image
Hoffster1984 in reply to earthwitch

Sounds like a good plan indeed. My feet have been sore these past 2 days and so I haven't run now for about 5 days. I will run as soon as they feel good though, and make sure I ease in gently. Stretching is certainly something I could do more of in general and for my well being.

Simba1992 profile image
Simba1992 in reply to earthwitch

If you can control your RA in other ways than toxic meds, be it half a year or a year even, that is better than starting with hard meds when you don't yet need them. We also know that the meds do not always work and their lifetime of effect varies. The alternative treatments, like the meds do not cure RA but at best control inflammation and cannot be discontinued when and if remission is induced.

pinksugarmouse profile image
pinksugarmouse

Oh good heavens above I wish you could. I really wish you could manage RA without drugs.

It's pretty cheap to write prescriptions out for methotrexate far cheaper than it is to offer twice weekly hydrotherapy treatment with an experienced professional. Sticking a steroid injection in your bum is pennies. Adapting your home to reduce strain and reduce damage to your joints costs a lot.

There are other treatments available which we know work well but they cost more than drugs. Therefore the drugs are easier to come by than other less risky options. If you can afford to pay for these things then you might be able to manage without drugs.

pinksugarmouse profile image
pinksugarmouse

Oh and for those of you who believe that cutting out meat and dairy is the answer I am a vegan and for many reasons I think eating them is bad for our health but my RA symptoms were no better or worse as a meat eater (birth-13yrs) vegetarian (13yrs-23yrs) or vegan (24yrs-present day). I have had flare ups of varying severity all through my life. Having said that giving up dairy really improved my gut. I used to get lots of bloating and cramps. No problems there anymore.

All i take for my Ra is Sulfasalazine 2 twice a day.Amitriptyline for the pains in my feet 1 a night my own painkillers when needed i wont go on anything else. My choice.i have pains like most i just decided im not taking anything else only what i am talking and i definitly wont go on the metheprozide or what ever its called side effects of that is bad so not going there. My grandmother lived till she was in her late 90's sufferd from RA too and only took pain killers guess im like her :)

Hoffster1984 profile image
Hoffster1984

Sounds good! Glad you only get away with taking those! :)

pinksugarmouse profile image
pinksugarmouse

To be honest Kai I genuinely struggle to follow your arguments because of the sheer number of emoticons, brackets and changes to text you use; emboldening, italics. I appreciate it helps you to highlight what you feel are the most important parts of your argument but for me it just sends me dizzy. I think we might agree on a lot of things but I honestly can't be sure.

This is not a personal criticism in any way it's just something I have noticed.

pinksugarmouse profile image
pinksugarmouse in reply to pinksugarmouse

And I never thought that eating a Vegetarian or Vegan diet was or should be just about eliminating meat and other animal products. I am a Vegan. I know what being a Vegan is and not eating animals is the tip of the iceberg.

I am very careful about eating a healthy balanced diet. I carefully studied nutrition whilst as a Vegetarian and a Vegan, to ensure that neither I nor my growing daughter were missing out.

I do eat processed products but I think it's highly unlikely that if I stopped eating these I would experience any improvement in my RA symptoms. I accept that some people might be very lucky and find that changing their diet is enough for their RA to go into long-term remission but I think the odds are slim.

I think there are many, many, many reasons why everyone should consider reducing the amount of animal products in their diet; health, morality, environment. On average Vegetarians use up half the resources of a meat-eater. Vegans use around an eighth!!!! But I would be immoral if I lied and told people that a low processed, non-animal product diet could eliminate or even reduce symptoms of RA. It can work wonders for lots of reasons but for me my RA is still a big problem.

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pinksugarmouse

To be honest I am really unhappy about taking methotrexate. Yes it reduces the most extreme symptoms of the RA as in shooting pains through my spine, moving into my hips and pelvis within moments making me wonder if it's the start of another spinal collapse.........BUT I genuinelly think that my Rhematologist is down playing the risks of being on such a serious medication long-term.

I go to my appointments and express my concerns that if stay on these or similar drugs, 30yrs down the line I could end up with kidney failure, liver failure, breathing problems, Cancer, eye damage (for some DMARDS) and there is no guarentee that I won't have serious joint deformities or be in a wheelchair. They look at me as though I've lost the plot. Added to that they seem to be completely oblivious to the fact that I am sero negative, which can make some medications less effective.

It is clear that when it comes to RA treatment about 95% of the funding is being spent on drugs, drugs and more drugs, leaving no funding for anything else.

The choice at the moment in many areas for people with RA is drugs, drugs more drugs and nothing else whatsoever.

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