NRAS
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to take meds or not to take meds...

Hi everyone, I've just been diagnosed with RA and my doc. laid out the basic Dmard plan - I am supposed to start on methotrexate and eventually add sulfasalazine and hydroxychloroquine. However, I have been hearing quite a lot from various sources to forget the drugs and focus on diet, excercise and stress mitigation.

While I hate drugs, and do believe in the mind-body connection, I am unsure if it is irresponsible to forget/postpone the drugs. I almost died of C1-C2 instability a few months ago (due to RA) and recently, my knees became pretty bad as well.

Any advice is appreciated. Did anyone find diet to be extremely helpful? is this nightshade vegetable idea serious? I'm not interested in just putting on a bandaid... on the other hand I am not hearing good things about these meds. Are the side effects as bad as they sound? my level of pain is totally manageable - my primary reason for taking meds would be to make sure it doesn't get more serious...

has anyone here gone on enbrel without trying Dmards? would you recommend it?

What else can I do? (the only thing I am doing currently is naproxen and swimming)

I'm just utterly befuddled - and way too young. my symptoms started at 16 - but im twenty now - so im borderline juvie ;)

Thanks for your thoughts!

Noa

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I started on metho and HTX. It was terrible. I was on pills then injections. Methotrexate is a chemo drug and it really messed with my body. I was also on Vimovo. I felt very sick the day after. I never used to take even Tylenol for a headache and suddenly I was on cancer drugs. Do your research and don't let anyone put you on something you're not comfortable with. I'm 31 by the way and had no other health issues before RA.

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I took MTX with no nausea or vomiting or feeling unwell ( and usually any medication causes me nausea!) It even started to work for me pretty quickly. Unfortunately I was one of the few who suffered quite a lot of hairloss so chose to discontinue it. I know that there are many on here who have used it for years without adverse effects. I was so scared of starting it and put it off for 6 months but it was okay. I tried Hydroxychloroquine but as my diagnosis was revised, was advised it wasn't suitable, again it did seem to help my joints. Can't take Sulfasalasine as am allergic to it and Leflunamide isn't suitable as I have Lymphocytic Colitis which apparently it can aggravate. I am now on Humira. Apart from excruciating headaches after the first 2 injections, I now have no side effects.

I have tried different diets over the years to try to help my symptoms, none seemed to have made much difference. That's not to say it won't for you. A lot of the time it's trial and error. But do keep an open mind, read lots, listen to what others can tell you and then at least you can make an informed choice. Good luck with whatever you decide. Clemmie

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I've been talking methotrexate for 6 years now. And absolutely fine with it. I take mine just after evening meal so if there were any side effects im sleeping it off. I also take the hydroxychloroquine with no ill affect. It is all down to the individual and the effects. You need to try it for your self to no it will or won't be suitable for you. It can take 6 months to kick in and I will say this tho dont delay medication because once the damage is done its done. And for me im on stage 3 there's no way I want to feel stage 5 . As for diet read the paleo approach see what you think about it. It might be for you also.

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Hi oldatwenty, I'm young at 56! When I was diagnosed a year ago, I tried all the diet things, plus acupuncture, etc, mainly because I had to wait so many months for an appointment with a consultant.

Methotrexate has worked for me - completely, without side effects. I realise I am very lucky - my RA was very bad, but you need to know that it can be very successful. I also take Omega 3 every day, and try to eat lots of fruit smoothies, etc, but I'm not a health freak.

I have a daughter your age, so I really feel for you, and want you to know that it can get better. Mtx works slowly, and I still take it, but am gradually reducing the dose. I was very reluctant to try it, but I am so so glad I did. Good luck with it all. ;)

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I take Methotrexate, Sulphasalazine and Hydroxy and they have given me my life back. I wouldn't be without them. Like everyone I was very scared about them to start with, and was literally shaking the first time I took MTX. But it's now my friend.

This whole idea that MTX is a chemotherapy drug and somehow that means it's evil is really odd. It's a drug, and like any drug (even aspirin which originally came from the bark of trees) it can have side effects and if you mis-use it it can kill you. But cancer patients take huge doses daily and we take a small dose once a week - so do try not to think of it like that. And no, in the UK you can't start on biologics like Enbrel until you've at least tried the traditional drugs. But biologics aren't harmless wonder drugs - some people have equally awful side effects and they can cause serious problems too. Wih this disease it's all about finding what suits you best so I'm afraid there's a lot of trial & error.

Anyway I also use diet, exercise and sleep but as well as the drugs and as a way of making sure I give my body the best chance of controlling this. And I have no side effects from the drugs, so I think my healthy life style has helped with that. But it's just a normal healthy diet - lots of fish & veg and very little sugar, red meat or alcohol. I personally find some of the extreme diets rather pointless.

You're young, so I'm very sorry that you've got this now. But you have a long life ahead of you so I think it's important to try to get this disease controlled as soon as possible, and avoid any joint damage. But it's your choice and you need to feel comfortable with your choices, so do talk over your worries with your rheumy and remember that even if you start the drugs you can always stop them again - no one will force you to take them.

Oh, and if you go for methotrexate do discuss contraception as well - very important.

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I started with hydroxy for 3 months didn't feel like it was doing anything so MTX was added for an additional 3 months. and still didn't feel like they were doing anything for me until I got a new rheumatologist who gave me a steroid shot and prednisone for 30 days which took the inflammation down, it seems like the hydroxy and the MTX finally kicked in and I was able to get my life back. The rheumatologist also added Humera because She said I had a very aggressive form of RA. So I have been on all three for the last year and am able to play tennis, dance, walk ride my bike whatever I want to do without any pain.

Also, I was advised by doctors and consultants that ra can affect your organs like heart and lungs and they told me that it was smarter to take the drugs before it gets worse and does irreparable harm. that scared me more than the side effects of the drugs. And I haven't had any real side effects from taking the drugs other than being able to function which is a good side effect.

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Oh please don't think about not taking drugs and only rely on alt meds I am from India and there is a lot of alt therapy that I did but even my Ayurvedic doctor told me to take my meds I first tried hydroxychloriquine but after10 days I started feeling unwell then went on mthxt didn't like it my hair is falling like waterfall and then they added sulfasalazine now I am on biological injections Cizmi it's getting better now. Research about the meds stick with it. Have Hope and most importantly faith in your meds and your doctor make sure your doctor listens to you ...2 years ago I felt like dying I was not doing my family esp my daughter justice always tired ..... still tired But not as bad as before

My doctor is planning to stop me taking sulfasalazine but I will still be taking mthxt with the injections. Diet will help like eating more greens, primerose evening oil caps (doctor recommend) , tonic water and I have heard aloe Vera juice. Acupuncture is also a good idea try alt therapies but also meds

All the best

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I too take promise oil and omega 3. Research shows those two combined in large amounts helps RA symptoms.

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Hi I'm sorry to hear that you have had such a bad reaction to RA.

You seen to have a positive attitude which helps so much with this condition.

You may be lucky and find the right meds straight away, I tried loads before the consultant found on that suited me.

I was a problem for them, but they liked the challenge.

I too dislike taking meds as my RA nurse could clarify. She has now convinced me that the side effects of the meds out weigh the effects of RA. I'm now on luflomide and humeria. With out side effects. At the moment all is good.

I find eating refined carbs a huge problem for me, I haven't heard of the night shade diet so can't comment, however I do eat a lot of peppers and chillies they are night shade plants, don't know if they help I just like them.

Exercise is vital it keeps your joints moving gives out a natural anti depressant, I cycle now after years of thinking that there wasn't a form of exercise for me to be able to do without it effecting the joints.

If you find a diet plan that helps that's great but give the meds a chance you can always reduce them later if you find a diet/meds combo that work for you. Talk to the RA nurses before you change anything.

Good luck, don't be afraid to Keep going back if the first or second meds don't work for you.

Alison

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Hi I've had RA for 30 yrs. you can listen to people how dreadful the drugs are and yes they aren't like chocolate and sweets. However, not taking medication is far worse. Rampant RA destroys your body, it's not just your joints it is a systemic inflammatory condition. It's your eyes, blood vessels , lungs and heart to mention a few.

When I was diagnosed the medication was minimal and sit and wait. Result completely destroyed my feet and hands, I no longer work.

Please don't ignore it and think changing your diet will cure it. Most of us I should think have tried that red herring. Relaxation and meditation can help and I do it myself. How I wish that I'd got RA now and not 30yrs ago. All drugs have side effects but you should be monitored closely. I've had side effects some are acceptable others not. But until you try them don't get put off by other people. We are all individuals and affected differently.

Good luck but make its your choice on information that stands up to scrutiny.

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Hi O @ T,

Firstly welcome to our community :)

Being newly diagnosed is a frightening and disorientating time and I would recommend getting in touch with the NRAS help line if this get too much with information etc coming at you from all angles.

You will here that methotrexate is a cancer med, that hydroxychloroquine is a malaria med and such like but know that for these conditions the medication is prescribed at much higher doses for shorter periods of time. At our dose level they are called disease modifying anti rheumatoid drug (DMARD).

I was diagnosed September 2014 and follow my med regime religiously and, like so many others here, run alongside that a healthier diet of plenty of fruit and veg plus including oily fish 2-3 times a week, spices such as root ginger and turmeric feature regularly is salad dressings and soups (for their anti inflammatory properties). Drink plenty of water (or and herbal teas) to help flush out the toxins and reduce headaches - got a headache try two glasses of water to see if it shifts if not and it's not manageable then go for the pain killer! Get what exercise your condition allows you to and try to be at your ideal weight as excess weight brings with it added inflammation. But be sure to 'pace' yourself as the fatigue will jump in if you do too much in one hit... you will get to know your new limitations (and push them back out again on good days) as you listen to your body more closely. Keep your social circle going and use your personal support network (family and friends etc) as sometimes emotional lows will creep in. Some of us use mindfulness meditation to help us relax both mentally and emotionally and some also see counsellors/therapists to help us through the emotional aspect of the condition.

Al the best

Ali

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Hi Noa

I'm pleased to see that you have had a lot of replies and hope they have helped. I thought I would just respond as a member of the NRAS Helpline team, as perhaps I can give more of an overview response, whereas other responses are more about personal experiences.

Unfortunately, in terms of evidence, nothing has been proven to slow down the progression of the disease other than with medication, so DMARDs would definitely be recommended, and the drugs your rheumatology team have said they would use would be a very common approach. The idea of having to take quite strong medication can be tough to deal with (sometimes as tough or tougher than the diagnosis itself). Someone mentioned that methotrexate is a cancer drug and described it as 'chemo', but actually in RA it is used in much lower doses (I think I'm right in saying hundreds of times lower in dose), so the likelihood of side effects to the drug when used in RA is much lower than when used to treat cancer. I think describing it as being on 'chemo' would be a bit misleading. Therefore, while some people still get nasty side effects from this drug, many will get no or more minor side effects, and some of these can be managed with medication or may reduce as your body gets used to the drug. You would also have regular blood tests to check for some of the more serious potential side effects.

Having said that, I do feel that some of the lifestyle changes you mentioned can also help. While they may not effect the course of the disease, they may have a significant benefit in controlling the symptoms, and I think it can also be important to feel that you have some control over your condition.

If you have not already looked at this, you might find our information on diet and exercise from our website helpful:

nras.org.uk/lifestyle

There is also a good report on complementary therapies by ARUK (see link to right of the following page):

arthritisresearchuk.org/art...

You asked about Enbrel. This is one of the 'biologic' drugs and is generally only given after trying at least 2 DMARDs, one of which must be methotrexate. After that, the biologics become an option, but only if your RA is considered active enough. They would assess the level of activity twice, 2 months apart and if high enough on both occasions you might progress onto biologics. This is therefore probably not going to be an option for some time for you.

You mention in your post that your level of pain is manageable. This is something people often say to us when they are trying to decide whether or not they 'need' the medication. Unfortunately pain is not necessarily the best indicator, because managing pain is just managing a symptom and even if the pain is well controlled, this does not mean that the disease is not causing damage the joints.

RA is a very variable condition. Some people have it more mildly and some more aggressively and some have a more erosive form than others, but it is not always easy to tell how erosive it is until damage is done, so while it may be possible in some cases to manage the symptoms for some time without getting any joint damage, in some cases the joint damage can happen more quickly, which is why the DMARDs are introduced so early. In times gone by, there used to be more of a delay before drug treatment was started, and it is largely through seeing the amount of damage done during that time that they start people on these drugs straight away now. Having combinations of drugs has also been seen to improve the likelihood of periods of remission, so it is quite common to have 2 or 3 drugs early on. If the RA is under good control, they may be able to reduce this down further down the line.

I hope this response helps. Please feel free to call the helpline to discuss it further if that would be useful. We are available Mon-Fri, 9.30-4.30 on 0800 298 7650.

Kind regards

Victoria

NRAS Helpline

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Thanks good advice xx

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The NRAS resources are great. Remember that people are often confused about RA and confuse it with osteoarthritis commonly referred to as wear and tear. the two are so different!

I can't add much to the good advice above, but I would say, beware people who have instant cures. I wish they worked, but sadly there 'aren't many miracles here'. The meds can help, but its good to read the information I hope you can find something that works and that it will drive your RA into remission.

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Hi old at twenty,

I have been taking MTX for two years now, with folic acid and omeprazole six days a week to help with digestion. The combination has worked like magic. Before taking these drugs, I was unable to walk even short distances without having to rest, before pains set in. Now I feel fit, and am very active. My diet includes lots of vegetables, greens, fruit, and Omega 3. I have lost quite a bit of hair, but that has now slowed down, and I've just had a short haircut which seems to suit me better!

It's a good idea to find out as much as you can from other people's experiences. Eventually you will work out what is best for you. Best of luck little one. XX

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Wow. Its so heart-warming to see that people who don't know me care enough to type out comprehensive messages. Thank you to all for sharing your valuable experiences, thoughts, and advice. I have a lot to think about! this morning I woke up so excited to read my replies :)

as a good friend just told me - "life is painful, but suffering is a choice".

Best regards to all you troupers out there. Keep fighting and helping others!

Gosh I hope they find a cure within our lifetimes.. I heard about bone marrow transplants - sounds hopeful no?

XX

Noa

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Personally I would recommend at least trying the drugs. I have tried mtx and sulpha since my diagnosis in April 2014. I didn't realise how much they helped the RA until I had to come off them because of the side effects. I am now waiting to start a biologic and have been without any Dmards for 8 weeks. My RA has returned with a vengeance despite a healthy diet, exercise 6 days a week and lots of honey and cinnamon :) . Good luck with things x

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Firstly welcome Noa & thank goodness you're here to tell your tale! That's quite something to face at your your age so you've a lot to be grateful for then flippin RD descends! I'm 54 & consider myself fortunate I didn't have to face RD until I was 48.

Personally? I wouldn't rely on alternative treatments & diets over the traditional & proven medication treatments available to us nowadays, particularly at your age. I wouldn't risk the deformity unmedicated RD could bring, what comeback or guarantees do you have from people selling wonder diets & treatments should they leave you needing ops or worse still vital organ problems? This might sound one sided, it is because it's my opinion & only you can make that decision but I would suggest you discuss alternatives with your Consultant. Some can work hand in hand with DMARDs, others not & best to give those a wide berth. I take a daily 1000mg cod liver oil capsule but checked with my Rheumy that she was ok with that first & I suggest you do the same if you wish to consider vitamins or supplements in addition to any meds prescribed for you. Your Rheumy is doing all he can to help you & he may not take kindly to you risking undoing it by taking something that may not agree with your meds.

My first DMARD treatment was HCQ which did get me controlled but unfortunately didn't last overly long at just under a year. MTX was then added as a try at double therapy but that did it control me well enough for my picky Consultant so HCQ was withdrawn & I remained on MTX, along with previously prescribed NSAID etc . It was developed as a cancer drug it, no getting around that but it was later found to be useful in much lower doses for people with autoimmune problems & when it is it becomes a DMARD & the drug which has controlled my RD for 7 years now. I get on fine with it, though I do take 5mg folic acid every day except the day I inject. The disease unfortunately being chronic doesn't respond well to anything but specialist meds, some used in conjunction, but none of which we would choose to take if we didn't need them but take them we must if we're to live comfortably & not have the terrible deformities of the past & which my nan had having only brufen & smelly ointments to rub on her inflamed & twisted fingers. So again I'm fortunate & have no problem taking my mix because I know on the odd occasion I've had to stop taking them I flare badly so know they work for me.

I choose to eat the Mediterranean way, a continuation of once living in Spain. It suits both myself & my h who has his own health issues & I don't feel at all bloated or sluggish, the way I did before we moved over there & now we're back in the UK when we do have the odd shop bought pie we both suffer for it. We usually make our own pastry using olive oil & it's nowhere near as heavy so there are alternatives! Preprepared food with additives I also try to avoid as they don't agree with me.

I'm not sure of the guidelines in Canada but here in the UK before going onto biologic such as Enbrel it's necessary to have tried & failed on at least 2 DMARDs, 1 of which has to be MTX so again that is something to discuss with your Rheumy. Hopefully that won't be necessary for you but it does depend on how the disease affects you, how progressive & erosive it is too.

Keeping as active as RD allows is a good thing, swimming I find particularly helpful as it is easy on my joints but I only poodle up & down at my own pace, I'm no athlete! Neither am I competitive.... I know my limitations lol!

I hope my twopennorth helps in some way & the other experiences you'll receive helps you to make your decision. We're here if there's anything else you need answers to or experience of. :)

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Dear nomoreheels :)

I am just short wedges...

The mediterranean diet sounds really good. I'm hearing positive feedback on it from all different sources.. will definitely try!

Thanks for your advice and experience, I so appreciate it!

all the best,

noa

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Me too! At least we can have a little height without it hurting our feet more!

I don't know if you'll be able to open this link there but it's very interesting nras.org.uk/diet-rheumatoid...

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Hi Oldatwenty, my experience is very limited. I was diagnosed with sero positive RA in early October last year and having watched my mother suffer from it for over 28 years, I was/am afraid my life with RA is going to follow the same path. However, I have been told there have been many advances In treatment that my life with RA will not follow the same course. I do believe that diet plays a part as does the medication. My aim is to prevent my having to take the stronger medications by following a diet free of gluten, processed sugars and processed foods. I am currently only on HCQ for medication and am not sure if it is the diet, the HCQ or the three mild steroid injections I had when I was first diagnosed that are currently allowing me to be largely pain free or a combination of all three or whether it is just the steroid injections masking the RA. Having said that I do feel better in myself, do not get as tired as I did when I was first diagnosed and have lost half a stone in weight over the last three months. I have been told by a nutritional therapist that there is no evidence that avoiding the nightshade family has any effect so I continue to eat members of this family except potatoes. I also avoid dairy milk. hope this helps.

Take care x

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Thank you! i was wondering about the nightshades, and the gluten free, refined sugar free sounds great.

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Hello, I'm gonna go out on a limb here and say diet can not cure RD.

A good diet can certainly improve your overall health and make you feel better, especially if you combine diet and exercise. But this regime would make you feel better even if you didn't havr RD.

Pharmaceutical companies have invested billions in medications for RD because there is no cure for RD. If diet could cure RD the drug companies would be out of business at least where RD is concerned.

There are certain foods that can cause some inflamation in your body that can aggravate RD and IBS as well as a few other conditions, but not eating them will not cute the disease.

I have read stories about people who were cured by the Paleo diet.

Even if your symptoms go away, you still have the disease and without DAMARDs or a Biologics, the damage to your joints is still going on in the background.

In the early part of the century when Steroids were available everyone, including doctors thought it was a miracle cure. They had patients that couldn't walk, who could now get up and dance....... However ten years later they saw the horrible disfigurement. The steroid treated the symptom but not the disease.

While people felt pain free from RA on steroids, the actual disease was still in the background destroying the joints. MTX revolutionized RD treatment, because it can dramatically slow the progression of joint damage.

People are going to feel their own way about this. There are many 'snake oil' companies selling special fruit juices that claim to cure RA. People who are desperate will try anything for relief. They are usually teivef of their money.

I will not knock good healthy eating and exercise, it will improve anyone's life. Unfortunately it's not a cute for an auto-immune disease.

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Wow, thanks for putting it in such clear terms!

sounds very true. I so wish I didn't have to take meds though...

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Hi, sorry you have to join this elite group lol.

I am only new here myself and already find it very reassuring and helpful to get

the wisdom of those here and I am confident you have come to the right place.

Good Luck!

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How, I have just logged on to site to especially find some advice myself and reading your message I had same concerns approx 18 months now...scan of hands and being told not conclusive with blood tests but have ra....delayed meds as I was due to have hip replacement bought forward from attack by alsations in Nov 12(stress,stress,stress) so I have osteo I've known for few years.......given steroid injection to tied me over....made big difference to my hands.....started on methotrexate 15 mg once per week...had all the possible side effects explained and few months later increased to 20mg...the hydoxocloride not really any effects other than loss appetite and after 6 months stopped due to ongoing wind problems...throughout this i m not sure if I've been better because, like you say I felt I could deal with the hands but it was explained e eventually to me , my consultant said all the patients that come to her to help them she has to turn away because they have left it too late and already deformitys showing.....I do truly believe stress is definatley a big part of it and worrying about all this mexd and possible side effects is very stress ful.......I was always very active and still am as much as possible...the tiredness effects me but it seems a vicious circle ...nearly 4 weeks now I have been taking salfsfa... Dose increasing weekly...now 3rd week and I have been getting more depressed....difficulty is knowing if its the meds or just hearing another risk..to liverliver???? Had regular blood tests throughout and all been OK...but still a lot to understand and grasp....BUT throughout I have hardly taken any pain killers. You are young and I have had problems with joints for over 30years being a keen squash p!ayer didn't help ...all blood tests re ra were negative.... I just wonder if this med had been available then perhaps not years of ibruprofen.....which has not helped my tummy....again pain killers help but these meds stop or delay the progression of the disease.... This is my e experience up to now , hope it helps a little. I am 64 and have always used my hands a lot over years and did not expect them to be pretty but also did not expect it to be serious enough to start these meds...... I like to trust the consultant and take her advice...take care and get lots of info... X

Slim active trying to keep positive sue!

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