I have RA and decided to stop taking Methotrexate a couple of weeks before my AZ vaccine. I’d just like to say this was a personal choice, I had read that you possibly get a better immune response with the vaccine if you stop taking immunosuppressant medications for a while, I’m not advocating that anyone else should do this. It is now about four weeks since I stopped taking Methotrexate and I am ready to resume, however, I feel absolutely fine, no more aches or pains than usual and better for not having the usual side effects. My question is , if anyone has ceased taking this drug in the past, how soon did symptoms resume? As I’ve come this far, I feel as though I need to speak to my specialist about not taking it for a while longer to see what happens. I’ve read that it only takes about two weeks to leave your system but I’m not sure if it’s just wishful thinking that I may be ok without it 🤞I’m sensible enough to realise this is probably the case but at the same time, how will I know without trying. If anyone would be kind enough to share their experiences I would be very grateful. Oh and the AZ vaccine went fine and I personally didn’t experience any side effects so good luck to everyone else with the vaccines. Best wishes... Pam
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Maybe you should have a word with your Rheumatology nurse.... it has been known if you stop taking a Dmard without clinical advise, that when you try to start taking it again it doesn’t work as well ....so if you feel your disease has been well controlled by the methotrexate ....I think it would probably be as well to take advice about starting to taking it again soon. I think you will find.....very few people with clinically diagnosed RA are able to stop taking medication.
I think we have all thought at times ....when we have felt well after having a break from some drug of other “I don’t need it”..... but history tells we are usually wrong.After 20+ years I am now jolly grateful I stuck with the Dmards & now a Biologic....& as soon as allowed I shall be off on my travels .....mostly painfree & happy!
Except for a dodgy elbow...& I think that is from lifting removal boxes...not RA!
Yes, you are right of course. I was diagnosed three years ago so fairly recently I imagine compared with some people, hence asking for advice from the more experienced
I don’t think it’s just a question of the half life of MTX and when the actual drug leaves your system, but its actual disease modifying effect. It it takes, say, 12 weeks to get to work then it could probably take 12 weeks to stop working too.
I have just reduced a dose of MTX down to 12.5mg and rheumy did tell me that I wouldn‘t be able to tell whether this had had an effect for 2-3 months. And warned me that if it did cause the RA to stick its head above parapet again then would take 2-3 months to calms it down again,
Sustained drug free remission is possible in a small percentage of patients, most likely those who start treatment very early in the disease process and who are sero-negative. Managing a year without drugs is more common...
Thank you for answering, that’s really what I wanted to know not being able to have a hotline to my rheumatologist. I suppose I was expecting that symptoms would be showing by now, and when they weren’t I had no idea regarding timelines etc so that’s interesting information you’ve given me. I appreciate your time, best wishes...Pam
When I was told to come off methotrexate last year, the doctor said it would take up to 3 months to lose the effects, and another 3 months for it to completely leave the body.4 months after stopping it, my body decided it was not happy and 6 weeks later, I was back on methotrexate.
Yes you are probably right, it’s just when I looked it up it said about two weeks to leave the body so I was expecting some return of symptoms by now, however if it’s three months then that would explain it. Thank you.
I'm pleased to hear that your vaccination went well. A couple of years ago, when I was having a tooth extraction and suspended my medication, my rheumatologist told me that it would take six weeks for the drugs to leave my system. I don't remember experiencing any real discomfort during my MTX and Hydroxychloroquine 'holiday'.
However, last month, for the same reasons that you did, I stopped taking my MTX a week before my Covid shot and 12 days after. Unfortunately, at about day 10, I experienced a pretty bad flare in my hands (I couldn't open them or close them) and quite a bit of pain, so resumed taking MTX. My flare reminded me why I was on MTX ! Interestingly, although I haven't had any MTX side effects for a goodly amount of time, when I restarted the drug some side effects came back (e.g. an upset stomach and fatigue). However, they were less intense this week and I expect will likely decline again.
Hi Monique. Your second experience is really what I expected but nothing so far, this will be my fourth week I think. I take it on a Tuesday so should really re-start tomorrow but I think I was living in hope that I might not need to. My circumstances when I was diagnosed were very different to now, I was working full time, my brother was seriously ill and my daughter had just had a baby. I was running around like a headless chicken and was completely exhausted and stressed when I began experiencing symptoms.I left work in Sep 2020 and I’m in a much calmer, relaxed place and I was thinking that may have helped. I always have side effects the next day after taking Methotrexate and it’s been wonderful not having to take it, however it did completely diminish my symptoms from about six weeks after starting so I am grateful. Anyway, thank you so much for taking time to reply, it’s much appreciated
I totally understand living in hope. I do too! The good news is that you're feeling better and that's wonderful news! It sounds as if you were experiencing a great deal of stress when you were first diagnosed. From what I've read, stress can trigger RA and I think that was likely the case with me. While I had niggling symptoms for a long time, the RA came on like gangbusters when I was undergoing a difficult period in my life. Anyway, all the best moving forward and I wish you continued relief. By the way, I have a neighbour who went into remission and has been off MTX of over a year now. Following is a link of how, together, doctors and patients determine remission.
I actually resumed the Methotrexate last night as I decided I’m too nervous to do it without medical support and as we know we can’t just click our fingers and demand immediate appointments. It’s something I might explore with my consultant at my next appointment though. Thank you so much for your help
Hi pamsim - apologies for brief reply but feeling headachy and off to bed, but please have a look at my profile and posts. In short I have stopped mtx and hydroxyc. and am seeing aches and pains that left me ages ago creeping back. I'm holding on til I see private rheumatologist though.
Hi, I’ve had a look at your posts, sorry to hear you are feeling so rough. Reminds me actually of life before medication so I shouldn’t be complacent. I was diagnosed initially with Sero-negative RA or ‘some sort of inflammatory arthritis’ really due to my symptoms, sudden onset stiff fingers, knees and painful soles of feet. My CRP and ESR were fairly low so my GP would not refer me further, even after numerous visits. In desperation I asked to be referred privately , three years ago it cost £120 and was the best money I’d spent. He diagnosed me immediately. I don’t agree really with private medicine but I was completely dismissed every time I visited my own doctor and was in a sorry state ! I hope you get sorted out quickly and begin to get some relief x
I had to come off mxt a few years ago now because of breathing problems. By the time I had had all the tests and got results it was 8 weeks and I had the mother of all flares. I couldn't do a think and had to be helped up from sitting and getting about. I cried most of the time in excrutiating pain. My Rheumatologist said he was shocked to see me in so much pain. I had to use sticks to walk and needed massive doses of steroids which caused their own problems. I will never complain of breathlessness again. My quality of life in that time was nil. It took months for me to get back to where I was initially. I was perfectly fine for 7 weeks and by the 8th I was a complete wreck. Please be aware that it can hit you very suddenly. I am not saying it will be like this for you but that is how it was for me and I never want to go there again. I had to go 6 weeks without it when I had my gallbladder out and I was ok but would never leave it any longer. It is in your system for 6 weeks. All the best.
Oh dear that sounds horrendous, I’m so pleased that your symptoms sound as though they are under control. I’ve never actually had what I’ve seen others describe as a ‘flare’. My symptoms are just constant low grade aching/throbbing/stiffness in my fingers, knees and feet. It’s never been that painful that I couldn’t cope, just consistent really. I did resume the meds last night but will discuss with my specialist at my next appointment. Thank you so much for replying, it all helps. Take care
Hi Pam, my initial symptoms were exactly the same as yours with joints and soles of feet. It took me over a year to get a diagnosis of seronegative inflammatory arthritis as my doctor wouldn’t refer me. Eventually I went privately and I was immediately diagnosed and put on Mxt . 6 years later I’m still on 15 mg Mxt by injection now and I’m ok. x
Our stories sound similar, it’s ridiculous that GP’s take so long to refer people when the general advice is early diagnosis and treatment equals better disease outcomes. I had two fat knees, swollen feet and I was struggling with my fingers and my doctor decided I had ‘runners’ knee and referred me to a physiotherapist, even she was in despair when I landed at her practice. Anyway, thankfully we have moved on and I don’t mean to be blasé about the treatment that has helped me so much, I resumed it last night and will discuss further with my rheumatologist who is lovely. Thank you for taking the time to reply.
I’ve had to learn this lesson twice over the 8 years I’ve had this. The first year I came off my MTX after an elimination diet that completely cleaned me up. I was so happy, thinking I was one of their people where diet had reversed my disease. Three months later - big flare. What I DID learn was diet can help me. Esp at the start, they find diet can really help people but you have to figure out what’s right for you. Eliminating inflammatory foods is a good start :). Do that a few months and see how you feel, what you can add back. Etc. For me, and many I think, it’s a combo of diet, stress, sleep, some supplements that I’ve identified for ME vs. other people. I’m sorry - it’s a bitter lesson I know because I still want to believe I’ll get to the bottom of this and be drug free. But, in time, I have embraced drugs as part of the solution and I feel SO lucky to have them (my aunt didn't in the 1980s and was wheelchair bound.) I have zero pain, can live a full life, etc. One day, they won’t help. My mom at age 78 lives with some pain. So, I just enjoy them while I can and hope for new ones to come on line in the years to come. In summary - stay on MTX and keep your body from being damaged NOW. That’s the best course I have found for me.
Hi. Yes I’m really interested in diet, I did begin trying an elimination diet but lacked discipline. It must have been disheartening to be successful with that and then result in a flare, but at least you know you have fully explored all avenues and given yourself the best chance. I’m now not working so I should be able to be more organised regarding diet. I am a vegetarian and try to have a daily glass of celery juice ( which is supposed to help with inflammation as you will know) but my diet isn’t always as healthy as it could be. I know there are many other factors relating to diet, I have actually done a lot of reading and it’s something I’m definitely interested in exploring further. It’s fascinating reading your post , you sound as though you have reached a good balance. Thank you so much for taking time to reply.
Hi there! First I wish you all the best and think it’s so great you’re exploring diet. That one flare I had years ago aside, I’m in great shape. If I ever have the slightest swelling I do a green juice fast for 1-3 days and it clears up. I was gluten and dairy free for a couple years and now I can play around more. It’s a journey, but diet can help. But meds are critical for me as well. I do it all. My mom was disabled at my age and my aunt in a wheelchair, but I’m climbing mountains :). Xx
Is the climbing mountains a metaphor or real😂I’m not sure I’ve ever been a climbing mountains person pre/RA lol. Thanks for the diet advice, I’ve studied lots of things but just haven’t implemented them consistently enough to obtain results. I need to try. I’m glad you’re in a good place 👍
My experience is if my body could cope with the drugs I would be on them as I can see the effect not being on RA drugs is having and its fast. I get adverse reactions to the drugs for RA but I keep on trying as I know I need them to stop more joint issues. Even MTX which I had to come off after 12 weeks off it I can feel things rolling in and getting worse. Everywhere you read about RA they say you need a drug to stop the joint damage which you cant see unless its too late or xray etc.
We are all different but common with RA issues. I would happily take any drug to make me get my life back to some norm.
Hi, I’m sorry to hear you are having so much trouble with medication, that must be really worrying and makes me feel a bit ungrateful actually. I had never really taken medication before, the occasional paracetamol and then BP meds. When I was diagnosed I was horrified reading about the RA meds/ side effects and that I might be on these for the rest of my life, I actually refused to take oral steroids ( I did have two injections). I reluctantly began Methotrexate, I have a not so good day the day after taking it but then I’m ok, a small price to pay really. It has helped immensely and after reading your post I feel thankful I have the option. It’s just after not taking it for a month my symptoms are the same which gave rise to my original query. I hope you find something that helps soon and you get some relief from your symptoms. Thank you for your reply
Ahh bless you. I after anaphylactic reaction last year get anxious on the new drugs and there have been 4 since and all reacted. However even if I read the side effects I don't know how I will react so I know I need them to get to a better place but sometimes reading can also make you go down to a dark hole that you don't need in your life too. I stay upbeat as there is a drug out there with my name on just got to kiss a lot of pills to find it x
Yes I’m sure you will find something, I can understand your nervousness and anaphylactic shock must be worrying and scary. My new ploy is not to read side effects, they are just too worrying. Good luck and I hope something comes up soon, it will but I understand it’s a lot of stress in the meantime x
HiWhen I had my Pfizer injections, I decided to stop my methotrexate injection for a week either side of the Pfizer injections. This was my own decision as I couldn’t get a positive answer either way, I didn’t suffer any ill effects from this.
On the subject of methotrexate, I asked my rheumatologist nurse if I could start reducing the dosage and after much humming and hawing, it was agreed. This was about six months ago, I am now on 20mg and so far it’s been ok. I think that if you want to stop taking methotrexate you should do it with the advice of your rheumatologist.
Hi yes I think that’s what I’ve decided, I resumed last night but will discuss my feelings at my next appointment. However, on balance the replies I’ve had have been very informative but made me feel more cautious. Kind regards
I will avoid coming off my biologic or MTX as much as I can. When i came off my first biologic because of an infection, when I resumed it did not work. Although am on another biologic and MTX, the result is nowhere near as god as my first biologic.
The Imraldi was perfect at first until I had to leave it off and go back on it. With Imraldi had zero pain and total flexibility. Not so with Cimzia, although it helps. Wow, hope I don't get pregnant at 69. 🤣
I was off the Imraldi for nearly 3 months. Rheumy said that they don't know why this happens, but they hypothesise that second time round the immune system recognises the drug and fights it off.
I’ve read that they do not work as well sometimes if you come off and resume, I wonder why. I’m sorry to hear that your results are not as good as they previously were. I really appreciate you taking time to answer.
With my consultants support I stopped my methotrexate for 5 weeks about 18 months ago to be able to have a yellow fever vaccination prior to travelling across South America. Like you I was great for 2-3 weeks (and questioned its necessity) then felt the odd twinge...but at 5 weeks it hit me like a sledgehammer. So much joint pain that the methotrexate made little impact when I resumed taking it. Needed a steroid injection to tide me over which helped and my consultant prescribed some prednisolone as an emergency supply should I need them when travelling (luckily didn’t use them and just took naproxen to get through). Don’t regret this because we had an amazing holiday that’s kept me going during lockdown ..,BUT it took quite a while to get my RA back under control.
Everyone will be different I’m sure but suggest any decisions you make include input from the professionals. Good luck 👍
Well that’s interesting information, I did start re-taking them last night and have decided to discuss in future with my specialist. I’m glad you had an amazing holiday and that your RA didn’t impact to much on that. Were you in a lot of pain prior to originally taking Methotrexate or was the flare you suffered worse than previous experiences? Thank you for replying by the way , it’s very much appreciated
Prior to starting methotrexate I was in a lot of pain with inflammation in my ankles, feet, knees, shoulders, wrists, hands and jaw. Methotrexate calmed all of this down a lot particularly when paired with hydroxychloroquine- although I still needed steroid injections to help reduce inflammation in my ankles/knees/shoulders from time to time. After I stopped mtx for five weeks these 3 areas became particularly bad again requiring more steroids even after restarting mtx. 6 months later because I was still reliant on regular steroid injections a decision was made to start me on a biologic and it’s made a huge improvement 👍
Oh I’m pleased you have it under better control. My symptoms have never really been horrendous but bad enough I suppose. It’s easy to forget a little when they are better managed . 👍
That’s so true, you do forget. I have kept an electronic diary from the early days of how I felt, how my RA affected me, the different approaches/medicines etc and my response to them. On days when I’m a little down I can reflect on just how far I’ve come on my RA journey. A (metaphorical) kick up the backside’s good for me from time to time. 😁
I think it all depends on you as an individual and how you feel. Talk to your consultant but I would have thought you yourself would be able to determine how your joints are feeling and how your inflammatory markers are doing. I always feel that you know your condition better than most. Listen to your body. You may be lucky but always obviously look out for setbacks. Personally I feel that if everything seems ok why take medication just for the sake of it. The methotrexate may have done its job and you may feel you have a period of time whereby you have been able to manage without it , surely this can only be good, can’t it? You may have to go back on it and maybe at a higher dose but this may be only for a short time. I would say don’t let the aches get too bad before acting on it as this is where problems may arise to get it in control. As others say discuss with rheumatologist. Good luck. Remissions do happen.
HiJust read the posts whereby stating you haven’t been long diagnosed (compared to most)and haven’t been on mtx long so perhaps you aren’t in remission. My advice was wrong. I think you should discuss with your rheumatologist but also on everyone else’s advice and experiences I think you should restart your medication. Unfortunately I just presumed you were a veteran of RA. My apologies for giving not so good advice. As others say RA may become a problem after a few weeks. Good luck
Hi, please don’t apologise, I actually think both of your posts were good answers, it just goes to show that nothing to do with this disease is black or white 😐I have resumed now as it happens but will have the discussion with my specialist at my future appointment. Thank you so much for your input
I take 15mg which made a huge difference to my initial symptoms. I do have slight swelling in my knees and the bottom of my feet are painful, especially, if I’ve been on them a lot, but I’m not in great pain or discomfort really, just generally low grade ‘achy’. I’ve never experienced a ‘flare’ as such, I just suffer the same symptoms at varying levels, never too badly. I suppose I’m quite lucky. :/
I recently stopped methotrexate after being told by the consultant to stop. I’m now 5 weeks into stopping and have noticed some symptoms return that disappeared within 6 weeks of starting methotrexate last year. Just small things so far but hoping the Abatacept kicks in before it becomes an issue.
Yes it was probably early days for me and realistically that’s probably what would happen if I left it much longer. I was willing to take that chance but I haven’t been able to contact my rheumatologist and I was too nervous about going it alone, I don’t think he would have been impressed. I restarted last night and will discuss it with him in the future. Thank you for your reply and good luck with your new medication 😊
The one thing that stands out is how different are our experiences. I was diagnosed with sero-positive RA in 2012. Over the years, MTX was reduced to just 5 mg weekly. 18 months ago, on the basis that I was in remission, and the MTX dose was so low, the rheumatologist advised ceasing it completely. I was well until 3 months ago, when a flare-up in hands recurred. I have shelved doing anything about it until the vaccination was over but now that it is, I have an appointment with rheumatologist. I intend to ask about re-starting MTX. If there is any way this can be avoided - for instance, if the activity remains low and I can manage the pain - I shall be pleased. If not, and I have to re-start MTX, so be it. In short, I seem to have maintained remission for a little over a year. I was interested to read in MoniqueB's link creakyjoints.org/treatment/ that it suggests being in remission does not necessarily mean no joint activity whatsoever.
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