I have stopped taking methotrexate after taking it since 2014.
I stopped four weeks ago, on the advice of the new consultant. He is not convinced I have RA, and suggests that the bone erosions on my hands are osteo not rheumatoid. My GP friend does not agree with this new diagnosis, and thinks that I might have psoriatic arthritis.
The consultant thinks that my original condition was some sort of reactive inflammatory condition, but I am very confused as to what has been happening for all these years. I did not think RA could either be misdiagnosed, after all those tests, scans, x-rays etc, but nor did I think it could just go away. Obviously it would be great to not have the disease, and not to be immunosuppressed anymore, but I am bewildered by this turn of events…..
On a practical level, do any of you have experience of stopping methotrexate after so long?
Are there side effects/withdrawal symptoms or anything alse I should watch out for?
Thanks in advance for any advice, health tips or any other related information.
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AudreyJ
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I had to stop MTX due to a groound glass appearnce on my lungs. I can't take biologicals either as i keep getting infections. I am relying on sulpha/hydroxy and steroids now. xxx
I recently stopped MXafter 10 years - I had a few episodes of very severe abdo pain seemingly associated with the injections. I had recently started a biologic and had to stop that as well while I had investigations. My rheumatologist had always thought that OA was a large part of my joint damage and I never have high inflammatory markers. Within 3 weeks I was in a terrible state - hands wrists elbows knees ankles feet all swollen red tender and nonfunctioning . Frightening how fast it all happened.
So now back on the biologic - not the MX- seeing how well that goes before a reassessment.
Ive had flares before but never total body flares.
I do have OA but at least it showed that RA was the chief culprit.
I hope you don’t have to have the same experience to convince your consultant !
A word of caution. Firstly, everyone is different and how drugs affect people is different. I have been on mxt for 20 years without any problems. It is about 12 years ago now that I had a breathing issue and was told to stop mxt while I had tests. I had to have different scans and tests with all sorts of breathing mechanism because they thought it might be fibrosis caused by the mxt. I duly stopped it and was fine for 6 weeks and carried on as normal. Unfortunately it took 8 weeks for all tests to be completed by which time I was in so much pain I was unable to even get in and out of bed without my husband pushing me up to sit and pulling me up to stand and I was in excruciating pain and bedridden most of the time. I got an emergency appointment with my Rheumatologist who had seen me a few weeks before and he was so shocked when he saw me. I had to have days of strong steroids which helped me to move again but had other symptoms like thrush in my mouth, little white blisters all over. After all this, I was told that it wasn't caused by mxt and that I could restart it again. It took some weeks before I was well again. I have never been so ill or in so much pain. I know this is frightening but after all the time on mxt I would be very cautious. Perhaps you could get a second opinion.
How frustrating for you. Do you have copies of reports from previous scans, that can be used to persuade him otherwise. I have stopped it for 2 months when I started biologics. I didn’t get any withdrawal symptoms, it just flared up my peripheral symptoms. I have AS, I’ve been told it it very aggressive and attacks literally every joint in my body. So it was decided to restart the MTX for the peripheral symptoms, which settled quickly on restarting. Hope you don’t have to endure severe pain to prove you have an inflammatory arthritis.
I had pains in my pelvis and was told by the consultant this was a muscular problem and by the way I was in remission from RA( 25 years of pain) . Come off Methotrexate and NSAIDs. Short story .. I had fractured my pelvis ( osteoporosis had already been diagnosed) and I was not in remission . My RA was under control with Methotrexate. Another consultant sorted me out and I still take Methotrexate. If I stop Methotrexate for 3 weeks I am in unbearable pain. I insisted on reducing my Methotrexate as carefully as I had increased the dose in the beginning and so I was aware that reducing the Methotrexate was causing an increase of symptoms.
Thank you my RA is back under control most of the time. At the time I was very happy to be considered to be in remission and delighted not to have to take Methotrexate. I naturally thought the Consultant knew best. However, it turns out the Consultant was wrong ,which was a shame but it does happen.
Oh dear - new broom condition!Has the new consultant actually read your notes? I'm not surprised that you are confused.
Keep a meticulous record of what happens next. It is just possible that you are in remission currently and may be able to manage without medication. But I'm afraid the likelyhood is that you will, at some stage, have a recurrence of the inflammatory process.
There are many similar tales recounted on here and mine would be the same - a new consultant who looks at the blood results, looks at the previous damage done to your joints by the inflammation and concludes it's osteoarthritis. Says to come off all DMARDs (disease modifying anti-rheumatic drugs). Followed by a recurrence of the inflammation....
This is what I fear. This was my first consultation in person in three years, and at a new hospital (I have moved house) All my previous hospital information seems to be inaccessible to other hospitals. I was diagnosed at Kings College Hospital, London, then treated for a few years at the Norfolk and Norwich, but nothing is joined up…..
I was on 15mg methotrexate for 5 years . i thought i had been misdiagnosed as i was so active and well and thought i was fitter than the average person of my age. This was discussed with the RA consultant who said the only way to check was to reduce methotrexate slowly over 6 months. I was finally down to 5 mg per week and and thought i was home and dry. Then i had a bad flair up. Puffy joints-watch and rings too tight to wear. Fatigue-slept 8 hours at night and 2 hours in the afternoon. Most joints aching or sore. Burning sensation in legs but not hot to touch and loss of flexibility. Was put back on 15 mg per week and recovered within weeks. I’m still on same dose. I’m a little worse than 5 years ago but I’m a few years older (74) and my condition may have worsened slightly.
I stopped methotrexate (20mg) back in 2012, but only after a year on it. I had no adverse reactions. At the time, my consultant thought I'd had a reactive inflammatory arthritis. I was in remission for about nine years before my RA returned. Now I'm back on methotrexate since 2020, and my RA is well controlled.
" He is not convinced I have RA, and suggests that the bone erosions on my hands are osteo not rheumatoid. "
Interestingly, there are some researchers that believe that osteo and rheumatoid arthritis are on the same spectrum, just at opposite ends. The old thoughts surrounding osteo, that is 'wear and tear' has been re through and it is possible that it too is an autoimmune disease. Basically, small injuries in joints sets off a cascade of various molecules to repair it, but it doesn't work as it should and the immune system steps in and further attacks the joint rather than repairing it.
This is not accepted by all rheumatologists, but if going off MTX causes someone's condition to get worse, then it could still be osteoarthritis that is the problem, just an OA that is an autoimmune condition.
There has also been trials of biologicals being used successfully in OA.
So whether the condition is RA, OA, or something else, it could still respond to the same drugs. After all, medical diagnosis are often just social constructs; basically, we make them up as we go along!
Misdiagnosis of all medical conditions, including RA is much more common than people assume, and is acknowledged by the British Medical Association.The Annals of Rheumatic Diseases, volume 74 in 2015 cites 39.3% of people diagnosed with RA don't actually have it. Differential diagnoses include SLE, OA, Sjogrens, spondlyarthropody and others.
The treatment for many autoimmune rheumatoid diseases is the same, so in some ways the actual label attached to a person doesn't matter 🙃.
I am absolutely not convinced about my diagnosis of seronegative RA.
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Best wishes.
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