Hi, has anyone elected to stop Methotrixate due to the side effects and inconclusive RA diagnosis. Decided to stop as side effects outweigh benefits!
Has anyone then moved on to controlling inflammation with alternatives like turmeric, devils claw or Chinese remedies.
There has to be an alternative to “western medicine”.
Terry
If you do a search you will find a lot of posts along these lines - it is a very heated topic!!
There have been anecdotal reports of people who have managed to control their disease without conventional medicines using various supplements and nutrition. What is lacking is robust proof (either that they had RA in the first place, or that they were “cured”).
However it does seem that a few people do have success, most often if they implement complete lifestyle changes alongside the drugs and then slowly taper off the drugs with the support of their rheumatologist. Just taking a supplement or two is unlikely to do it.
My suggestions would be to talk to your rheumatologist as there are many options to MTX so you may well find something else works better for you.
I gave up MTX because it caused sickness. However, I tried all those things you mentioned, plus a lot of others, and none of them helped my RA. As I have PMR as well I had to rely on Prednisolone - which does help the RA.Good luck finding something else.
I was on it years ago by injection for 18 months then I became allergic to it and was taken off. I can't answer about supplements as I've never used them
Hi Terry,
Unfortunately, there is nothing concrete in the world of alternative and complementary therapies, this is because the medications used in the management of RA are immunosuppressants. This is to dampen down the overactive immune system which if left to its own devices, attacks the connective tissues around the body, in the joints and other connective tissues such as in the heart and lungs. If left unchecked it can lead to irreversible damage.
Fortunately, methotrexate is just one of many drugs available to manage your RA (nras.org.uk/information-sup.... For some people it can take some time to find the right medication which works for them and which has the least (if any) side effects but it is worth persevering with it.
Talk to your rheumatologist or specialist nurse about the side effects you are having to the methotrexate. For many it can be useful to take the methotrexate in the evening after a meal and before bed so that if there are side effects they occur while sleeping, and so minimise the impact. Similarly, taking in lots of water on the day of and after having your medication can help to flush it through the system and reduce the likelihood and severity of side effects. By speaking to your rheumatology team about it they can also look to increase your folic acid supplement which can reduce side effects, transition you to the injectable form of the drug to bypass the digestive tract and thus reduce the likelihood of gastrointestinal side effects or if needed, swap you to a different medication.
It is also helpful to report any side effects you have to the medicines and healthcare products regulatory agency. Find out how here: nras.org.uk/resource/report...
You should always discuss any considered alternative or complementary therapies with your rheumatology team, this is because some herbal remedies and alternative treatments can actually exacerbate symptoms and so need to be avoided.
What is clear from evidence in this area, is that maintaining a healthy weight and lifestyle with a balanced diet, regular exercise, drinking in moderation and free from smoking, plays a far more important role in helping the medications to work effectively, be tolerated by the body and even exert some impact on improving RA symptoms.
Find out more here:
- nras.org.uk/information-sup...
- nras.org.uk/resource/what-i...
I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk
Best wishes,
Hannah - NRAS Information and Support coordinator
I decided to stop MTX after 11 months, due to the side effects. I tried MTX tabs, injections folic acid the lot. Nothing helped.I informed my rheumatologist that I wasn't taking MTX anymore, I was re MRId and had active synovitis and was started on biologics.
Complementary therapies have done nothing for me I've tried...cannabis oil, low dose naltrexone, gluten free diet, lactose free diet , turmeric....increasing exercise results in flares.
Eating healthy has aided in weight reduction.. did it help my joints ? Not really, but I'm pleased to be back at a normal weight and enjoy getting into my pre RA, pre weight gain clothes.
The only thing that has remotely helped is changing life style and sleeping patterns. I say 'no' to many suggestions of going out when I'm not able, I look after myself and go to bed earlier and get up earlier. I have a quiet 60 - 90 minutes to myself every morning after breakfast, let the meds take effect, get myself ready for the day.
But medication is the best and only option to prevent joint damage.
Edit: I retired too, never got back to work after becoming unwell.
If it was as easy as taking a couple of supplements then this group would be empty. Sadly I’ve found nothing to take the place of western medicine m. I’ve tried numerous things hoping to find an alternative over the past 30 years. You don’t say what side effects you are having or why you don’t think it works but Hannah from NRAS has given you lots of helpful info and things to try to counteract any side effects and other info to help you. Please don’t just stop your meds without talking to your rheumy team, let them know how you’re feeling so they can try and help or explain why they think mtx is the drug for you. If it fails you then there are other options but stopping meds without discussing it is never going to be helpful in the long run. Let us know how you get on 🤞🏻
If there is an alternative it hasn’t been discovered yet……I am afraid so called “ natural” remedies ..Chinese or otherwise….are not the answer.If they were the NHS could save a fortune.
As far as qualified rheumatologists are concerned Disease Modifying Anti Rheumatic Drugs are still the way to go.
Especially don’t try these “natural” remedies in conjunction with prescription drugs.
Listen to your doctors…if you are tested positive for RA there are plenty more DMards you can be prescribed.
Hope you don’t have RA …..but if you do…go the recommended way ….catching this disease early can make your progress very much easier.
I gave up on methotrexate after only a couple of months as the side effects were so bad I couldn’t function and I had a young family to look after. However, I knew that RA can be a very nasty systemic disease so I was very grateful to try other treatments. I now take leflunomide and sulphasalazine with no side effects at all! I’ve also had to add in Rituximab, I feel a bit rubbish for a couple of days after that but as it’s only every 6 months I can schedule a couple of quiet days in. If methotrexate is not the drug for you speak to your rheumatology team and ask what other options are available. It’s also worth taking a look at the NRAS website
nras.org.uk/information-sup...
And the Versus Arthritis website has some information on alternative therapies
Have a look at goodbyelupus.com it is not supplements but rather food choices. Dr Brook Goldner cured her lupus, supposedly works for any autoimmune disease
Thanks lesy77, have you tried it.
Yes to former, no to latter.
glad you went off methotrexate. Seems to me some people are almost tortured by it and their doctors happily let them suffer. I went off methotrexate as it was brutal. I take leflunimide now and it is so so much better. Hope that alternatives work for you or you find a different medication.
On the other hand ……I took Mtx for years with only the odd headache……..but Leflunomide was the drug from hell for me.The only way to know which drug is going to help you is to try it……not always a pleasant experience…but right now it seems to be the way to go.
I very much doubt there are many people diagnosed with RA who are 100% successfully controlled forever by the first drug they are prescribed.
Please speak to your rhuemy team before just stopping about alternatives. You may feel better but be unaware of the damage been done internally. I wa in hospital recently with a lady who had stopped all meds 20 years ago and was in hospital for the start of several joint replacements. Only you can make the choice of course but please look at everything before making it. Good luck. 😊
I think it depends on age, severity and type. I know about 4 friends who’s RA appears to have remitted spontaneously - so they have never tried DMARDs - as they feel the risks might outweigh the benefits for them. They definitely have RA as it’s visible in their hands.
One close friend has seropositive RA and her mum had MS. She feels her RA is very similar to her late mum’s MS in that it’s relapse/ remit. As far as she’s concerned the drugs aren’t necessary yet for her personally and our rheumy apparently thinks this is okay and understands. She’s still on our rheumy’s clinic list in case things change but so far she manages well, walks the dogs, eats a reasonably wholesome diet (but not obsessively), doesn’t smoke and doesn’t seem to think about it much at all. She’s about 68 years old.
But she understands that my very systemic connective tissue disease seems to need hitting hard with immunesuppression. I have tried a few year periods of time off meds and become much more sick again - lots of internal damage done etc. I’m seropositive for scleroderma but also have full blown Sjögren’s disease and mild RA.
I take Mycophenolate for the systemic sclerosis and have no side effects but it doesn’t stop my relapse /remit inflammatory arthritis flaring intermittently. I’ve tried all the anti inflammatory diets over the years but just got much more sick on these. Due to connective tissue disease I’m on a dietetics supported liquid only diet for Gastroparesis.
I took MTX for 26 years. Had to go off of it a few years ago because of side effects. Been on arava since.
I too took Mtx very successfully for years …..then I was put on Arava…which is the trade name for Leflunomide……& it was just about the worst drug I ever tried.You have try what you are prescribed…& just hope you find something that suits you …& really hope it continues to work problem free.
No. I've taken MTX for over 40 years and believe it to be the best drug I've had.
Why am I more sick on MTX then when I first started? does it build up in your system?
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