Has anyone developed rheumatoid nodules on their thumb / fingers/hands related to taking Methotrexate.
I have noticed for the last 5 months a lump on my right thumb about 1.5cm across and about 1cm deep . Then 2 weeks ago another nodule just came up overnight on the same thumb and that nodule is now rapidly growing .
I’ve recently had my bloods taken and my CRP is only 2 . and other blood tests within normal/ acceptable levels
But 4 months ago my rheumatologist changed my 15mg tablet form of Methotrexate to Metojet 20mg (due to stomach issues and my RD not being well controlled)
But after changing and increasing the dose the nodules have appeared.
I have researched as to why these nodules occur and taking Methotrexate can often be the cause .
Rheumatologists often replace the Methotrexate with another drug or add other DMARDS which can reduce the size and occurrence of the nodules
Have any of the group members had these nodules ? …. and then been successfully treated by their rheumatologist by replacing the methotrexate with another DMARD or adding another DMARD to their treatment plan ?
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skinclinic
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I’ve developed nodules on both my hands, the rh being worst. I’ve spoken with my RA specialist and he agreed that they are probably due to methotrexate.
Unfortunately I’m in an awkward position with my medications - I can’t have nsaids and my RA would flare if the methotrexate dose was reduced.
I have asked about having them removed and got a yes answer - the waiting list is two years!
I think that nodules are a feature of rheumatoid disease rather than the medication. The ones I have had eventually shrink when the rheumatoid is well controlled
HiYes I have been steadily on methotrexate maximum dose for around 12 years and have also tried a boat load of different dmards. Seronegative RA always with excellent crp but never been in remission. I did develop nodules on my fingers and a couple or few years ago they disappeared. In fact u are reminding me as I had forgotten I even had them! I am now on methotrexate and Adalimumab. No idea why they cleared up but I just thought I’d let u know. Happy they are gone as they were a bit annoying, impeded finger joint bending and a bit painful. Got them on my middle knuckles. Best wishes!
Hi, yes I developed a nodule on my right thumb but it was not due to MTX as I was only on it for two weeks. I believe nodules are related to the disease and not medication. I had mine surgically removed a couple of years ago and so far so good. Apparently they can come back
I had rheumatoid nodules appear on my right hand. They were quite painful. I had been on 20mg MTX, which was increased to 25mg when my feet flared too. They disappeared on the higher dose of MTX, and haven’t returned.
I have rheumatoid nodules on both elbows, forget they are there as I can't see them but can feel them, they have shrunk a little over time. I had a couple of small ones appear on the fingers of my right hand, which I use more, they disappeared after a few months. I have taken methotrexate but I see them as rheumatoid nodules.
I don't take methotrexate and have still developed rheumatoid nodules. I think from their common occurrence in Rheumatoid Disease, they are more likely to be to associated with the disease rather than the treatment. Of course, that will mean that people on methotrexate will also develop them.
Yes, I’m on Methotrexate and have 3 nodules wrapping around one finger, 2 on another finger and a new one beginning on a knuckle. Had referral from my Rheumatoid Dr to a plastic surgeon, now on waiting list to have the three removed, the other 2 are too close to nerves so I just have to put up with them.
A big thank you to everyone who had replied to my post …. I feel much more at ease that I’m not ‘the only one’ and that there are so many of you out there that take the time to reply to the rest of us when we have queries . My question is not of a serious nature but concerned me enough to post to get feedback from others who have already had these nodules appearing (unexpectedly) out of the blue
Hope I'm not too late! I always seem to be catching-up on posts!
Sorry you're having to deal with the annoying nodules too. I've had RA for 40 years now (since 13), and have been sharing my bits with various nodules for about 30 of those years. Some come and go, and some have been long-term companions! My experience is this:
1. About 20% of people get rheumatoid nodules. It's usually those with seropositive, more active disease as they're considered an extra-articular complication meaning (I think), that the inflammation has affected a part of the body (skin) other than the joints. If prone, you would get these irrespective of whether or not you take Methotrexate.
2. Nodules caused by taking Methotrexate. This can be known as (I understand) Methotrexate-Induced Accelerated Nodulosis. Bit of a mouthful! I think these can occur whether you are seropositive or seronegative, but I can't swear to that.
3. BOTH!!🙄 This is my experience. I was prone to nodules anyway, and already had a few rheumatoid nodules before ever starting MTX. (MTX wasn't available for the first few years I had RA). Once I was on it and went past a certain dose, it was like adding fertiliser to them. They went wild! At their worst I must have at at least 20 spread across my hands, numerous ones on both feet and a giant one on my elbow that looked like a second elbow joint! About 25 years ago, my then rheumatologist decided to try and inject some of the hand one's with steroid, as they were making it difficultfor me to write. (He'd just come back from a conference where it had been discussed). It was very painful as those on my fingers are hard and bony. I think 1 disappeared, and another couple shrank for a bit, but came back. Because the nodules on my feet became problematic over time, I had a number of those removed surgically. Mostly, they've stayed away, and those that did re-appear have stayed much smaller.
When I began taking Humira in 2009, after a while I noticed there seemed to be less nodules. The one I'd had on my elbow for years shrank to the point it was hardly noticeable. Otherwise, the only other way they've been managed for me is keeping the MTX below a certain dosage as i mentioned earlier, and/or adding Hydroxychloroquine to the mix as this can counteract the Methotrexate induced nodules. This seems to have helped me too, so could be worth asking about. It's certainly easier as a first step than going down the route of injections and surgery. Obviously keeping the MTX below a certain dose could be very tricky as you need to keep the disease as controlled as possible. The only reason this has been manageable for me is because I also have the hydroxy, steroids, the biologic and another DMARD on top. I'm also aware that there may be a point at which the MTX has to be increased regardless of nodules. It's all such a balancing act, isn't it? One of the dermatologists I've seen in the past, said they saw rheumatoid nodules (the non-MTX kind) less now, since the advent of biologics. She got very excited at the sight of mine (which wasn't why I'd gone to see her), and persuaded me to have them photographed by medical photography for training purposes. A very brief modelling career there!!
Ultimately, like most things with this disease, they can only be managed, not cured. As I've experienced, injections and surgery can help, but they may return. Even now, they still pop up when they wish. About 3 days ago I found a couple of moveable lumps on what I think is a tendon near my elbow where I'm having problems with a trapped ulnar nerve. As you've probably found, they can literally appear (and disappear) overnight. I suppose time will tell whether these new bumps are temporary visitors, or here for a while!
Hope this helps a bit, and good luck in your battle to control the little (or big) devil's!! 😊👹X
Hi Kags … that post was amazing . The information that you shared with all of us (and especially me) was above and beyond any reply that I had hoped for
It has certainly given me an insight as to what others experience and first hand information of what to expect of how these bumps and lumps can come (and go) and what possible treatments and outcomes can happen
I will now monitor and document how my issues progress and when I see my rheumatologist in December I’ll be able to discuss what he considers at the time of assessing me what can be done to help me .
I am also very fortunate to have a helpline and there are 4 nurse specialists that are there to help us . And they always reply within 24 hours ( often sooner)
They also have prompt access to discuss any urgent issues with my rheumatologists and I am truly grateful that I live in an area that offers such a great patient service
Thanks so much for your kind reply. I was touched. You are very welcome. I'm just pleased it may have been useful to you. At least if we can pass these things on, then some use can perhaps come from what we have to experience!!
I'm very pleased to hear how organised, accessible and supportive your rheumy team is. Having that makes such a difference. So many people on here seem to have less than ideal experiences. I've been lucky in that respect too, and really appreciate it - especially since learning how much some people struggle.
Definitely keep a note of how things progress for your future appt, and good luck with managing those pesky nodules!!😚
Hi skinclinic, thank you for sharing your story and question with this community. You may find this article on our website helpful (however you may have already come across it in your research): nras.org.uk/resource/rheuma... I wish you all the best, from Emma at NRAS.
Yes, i developed nodules on my fingers but was never told that Methotrexate was responsible. The nodules were eventually removed - and the surgeon thought they might well re-appear in time. Well, that was all many, many years ago and they have never re-appeared. As for the Methotrexate, I have been taking it for 24 years; now at 10 mg weekly by injection, and really have no reason to change it.
Your post was interesting - since joining this forum in June 2020 I've learnt more about the drugs and their side-effects than in all the years with rheumatoid disease (diagnosed 1967) .
Good Luck - but it's a pity the waiting list is so long for what is a very quick, minor procedure, but that's life theses days. I would carry on with the Methotrexate in your position as you are responding well - but I understand the frustration.
Hi been on methotrexate for over thirty years and have quite a few nodules on both hands.When I mentioned this to my RA consultant she was a bit dismissive about them and to be honest I have not followed up about them.They are a nuisance when using a walking stick though.
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