I posted previously about suspected side effects of mtx, mainly brain fog and fatigue.
When I asked rheumatology about trying a different drug i was told those symptoms were not caused by MTX and i was diagnosed with fibromyalgia and that was the cause.
But I don't suffer from widespread chronic pain. And the rheumatologist didn't examine me for fibromyalgia.
So I decided to stop taking MTX to see if the brain fog and chronic fatigue lessened, hopefully before my RA symptoms returned.
I accept this is probably not a sensible thing to do, especially without the support of rheumatology and I'm not advocating it to anyone else.
It's been a month now since stopping the MTX. I can't say I've experienced a life changing improvement. The impact has been much more subtle. I still have bouts of brain fog. But I think less frequently and less intensely. More noticeably I haven't felt the over whelming fatigue I'd been experiencing before.
Overall I think feel healthier. But what has surprised me most is that the RA symptoms haven't as yet returned. I'd expected the symptoms to return quickly after stopping the MTX.
But after a month I'm still symptom free. I don't know what to make of it. Of course I'm assuming the RA will return but hadn't expected it to last this long without drugs.
I guess I'll continue without the MTX until the symptoms return and continue to hope I'll feel better.
Thanks.
Seb.
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Sebastian247
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Ouch, I know you won’t want to hear this but I think your RA will be back around 6 weeks and it’s hopefully not going to send you downhill that it’s hard to climb back up the slope. It’s the damage you could do to your joints if you don’t resume Mtx or something else soon. Are you on tablets? If so could you ask to switch to see if sub-cut injections would make a difference? I have never had brain fog on Mtx so cannot comment but tiredness at first, yes as I was anaemic and RA out of control. I got used to the adjustment of feeling sleepy at times. I hope you can have another talk with your rheumy or even GP maybe? … and say how you are still feeling.
You didn’t say on your post above the dose/amount you were on. If you’ve been on Mtx 3 months and feel it wasn’t doing enough then you’d have more of a case of asking to change, but I’m not sure how well it was doing lowering inflammation levels for you. (Sorry if I go look/check back at your previous post I’ll lose mine on here!) I don’t know enough about fibromyalgia to know if it can give these same symptoms. Hope you can speak to your rheumy. Not sure if you want to say you’ve lost faith and stopped it or if that would cause more trouble. Good luck.
Thanks for the thoughts. I hope it doesn't come back to bite me! But I'm aware of the risks.
I've been on MTX (20mg orally) for about two years. It works on the RA, but the possible side effects are seriously impacting my quality of life, and my ability to continue working, unless I can address the brain fog and chronic fatigue. Rheumatology haven't offered any alternative drugs or method of taking MTX. I though the sub cut was primarily to help with sickness type symptoms, which I don't get after increasing the folic acid. But I could be wrong.
I'm ready to start taking it again as soon as RA symptoms return, or sooner to see if the other side efects are being caused by the MTX or not. But at the moment I feel quite a bit better which suggests the MTX is making me feel ill.
If rheumatology were willing to offer me other options, and not try to explain the potential side effects away by suggesting it's fibromyalgia - when clearly it isn't, I wouldn't have felt pushed into stopping the MTX completely. We seem to be back in the era of doctor knows best and ignore the patient.
But I appreciate the warning and will definetly be heeding it. Thanks.
Sounds like you have had the same rheumatologists that I have had. I was diagnosed with fibro without them taking me through the diagnostic criteria, and when I pointed this out and said I disagreed with it they doubled down. So I made a formal complaint and he backtracked and suggested I get a second opinion.
Second opinion said psoriatic arthritis. Had a bad reactions to sulphasalazine, so onto methotrexate. It worked, made the joints better, but then I started feeling poorly, and getting severe abdominal pain.
But like you, the rheumy nurse tried to make out that I was being awkward and initially said keep taking it. I stopped for the covid jab and felt so much better than when I saw the rheumy two weeks later i thought I would get a 'well done, you did the right thing to stop, let's try the next drug' but no. She just tried to push me to take it again and refused to let me try anything else.
So here I am a year later with no medication other than paracetamol. When I have flares the advice line nurse just dismisses me by saying talking to the GP, so clearly they have no intention of exploring further drugs.
And yes, I know that the joint damage will get worse, but that is their fault, not mine! So they will have to deal with that when it happens.
It is all about balance between benefits and risks. I would rather risk more joint destructions in the future for clearer thinking now so that I can finish my PhD and care for my disabled son.
That’s awful and I’d not want to see those two again. They’ve already made an error re your diagnosis. My rheumy wouldn’t do this refusal for another med and neither should anyone when it’s so obvious a med isn’t right. I wish your GP would intervene. This isn’t right as once you’ve tried two DMARDs, usually Sulfa and Mtx, you are usually eligible for a biologic which don’t tend to give the type of side effects you have had. Unfair of them. Are they trying to keep costs down? Can you complain to PALs? 😑
Please don’t let your joints become damaged due to no protective medication/some remiss staff at your rheumatology department. This is unacceptable from them and makes me feel sad and frustrated for you. Sounds like you’ve seen a couple as you refer to a he and a she, so both seem similarly dismissive. They probably hear so many patients saying their stomach feels upset when they start to take Mtx that they aren’t taking the more severe reactions seriously. 😑
The current rheumy said I didn't have enough joints involved to warrant trying a biologic. She only briefly looked at one hand and didn't discuss the hips, feet, shoulders...
I am an Expert by Experience with the hospital trusts in my area so I have behind the scenes knowledge of the rheumatology department. I don't think it is just keeping costs down, I think the whole department is chaotic and needs to look out to best practice rather than be insular and think that they can just do their own thing.
PALS is 'direct dial' for me, as I work with them on other projects. Sometimes we have to pick our battles and being through PALs already for rheumatology, I haven't the energy or time to do it all again right now. I will choose my moment!
I’m not sure that’s the right attitude from the rheumy as you could have 2 very damaged joints and 6 slightly damaged ones. 😳 Can understand why you don’t want to do the PALs thing atm but you might at some point. Disgusted that they’ve treated you like this. Ugh. I feel it could be a cost thing from what you’ve experienced/said re they don’t put people on a biologic (they’d probably have to if another consultant from another area of health you might be seeing insists this would be beneficial.)
I take it you don’t have /see a rheumy physio as mine used to recommend his physio patients changed meds. He was very senior and was respected. He’d say … Mtx isn’t working anymore and too much damage is being done .. or whichever med wasn’t helping his patients anymore. The rheumys respected him. Your rheumys seem to be going against NICE recommendations of two first line DMARDs and then a biological if those fail or persistent side effects that affect you every day. Do they say your level of CRP and RA disease activity/ inflammation has reduced on Mtx so why they deem it a success?
My inflammatory markers were never high as is common with PsA. And no, there doesn't seem to be any physio, podiatry or anything else. I did self refer to the OT hand specialist who turned out to be a regular physio who dismissed me and kept asking if I was going to take the drugs for fibro. I pointed out I didn't have fibro (this was before the PsA diagnosis) and she denied I had anything wrong with my hands. I asked her what the lump on the DIP joint was, osteophyte or joint capsule swelling. Said it couldn't possible be an osteophyte, I had good range of movement. So I asked her to look at my x-rays. 'Oh', she says, 'Yes, that's an osteophyte.' and then said my time was up.
There has been nothing about specific rheumatology physio at all. And yes, I think the rheumy is going against guidelines, but that sums them up nicely, they really are very insular and won't get involved in any of the improvement work done throughout our trust.
They used to have a bit at the bottom of the letters saying they were looking for patients to join a focus group to help make the service better. I volunteer of course, several times! nothing ever happened and eventually they removed it from the letters.
I’m so frustrated for you .. your time is up! 😑 Grrrrr. Of course .. sorry, re inflammatory markers and PsA. My error. I think it’s awful for you and hope at some point you find strength to challenge them but that’s so exhausting. I’d have to send them a letter of dissatisfaction but they’d probably lose it or shred it. I’d try get the NICE guidelines copied on your phone and show the rheumy them and make your GP aware you’re not satisfied and want to do things professionally and properly, but don’t want to let it stay as it is. 🩷 Do you have a dermatologist who could approach things from their side? Hmm, I bet the rheumys don’t want patients in a focus group in case they wish to complain! 😳
Yes they do tend to glaze over if you mention a side effect I mentioned my knee rheumatoid said no and moved on with conversation.... if its not on his list he's not having it ha
Thanks for sharing your experiences, which sound pretty awful, and very unhelpful.
I do hope you can find away to get treatment for your RA that doesn't make you feel so unwell. I haven't given up trying to find a way forward with the help of rheumatology, and I hope you can keep fighting for more effective treatment.
I absolutely can relate to the very difficult trade off between having the RA controlled and feeling well enough to function effectively. I wonder if the NRA helpline might be able to help you find a way forward? Best wishes. Seb.
It took me some time to convince the rheumatology nurses that having been on methotrexate for 4years I was fed up with the side effects mainly nausea and fatigue. Finally it was agreed I could change drugs. Have now been on hydroxychloriquine for 6 we eks nausea gone, feeling much more energetic and no joint problems have arisen( I was in remission on mtx) keep on going and try to get prescribed an alternative please ,best wishes
There is a lot of resistance from some rheumatologists to stopping methotrexate and a reluctance to accept that SOME people have have unacceptable side effects. It was only when my dentist, a regional tutor, wrote to my rheumatologist that he accepted that I needed to stop it to stop the enormous ulceration in the mouth. The complaints that I made of brain fog, diarrhoea and fatigue were not enough!
But I do think that you need to have a discussion with your rheumatologist. You might find it easier (I know I do) to write it all down and either correspond or see the specialist to discuss other preventive treatment - have a look at the other drugs available as DMARDs on the NRAS website treatment pages.
Hi I had methotrexate when I was first diagnosed it seemed to work for me with little side effects but after six months my white blood cells lowered to a dangerous level and I had to stop it. My consultant said keep taking it !! But my Gp refused to prescribe it. So reluctantly Consultant put me on a biological. I think NHS push Methotrexate as it is a very cheap drug to prescribe but it does not suit everyone
Hi, No it’s not me with the problem/not me who posted. It is Sebastian247 who posted the thread. I just replied. Sorry to hear of your/your husband’s troubles. Thankfully my rheumy does listen to me and always has. I’m lucky that way.
My husband experienced severe memory issues, fatigue and growth in his breasts whilst taking Methotrexate (2years in) his RA pain was no better - he also took early retirement as he just couldn’t work anymore - his GP referred him to a neurologist and the memory clinic - he was also fast tracked to a breast clinic - the neurologist stopped the methotrexate as he said it can cause memory problems - the breast issues were also put down to methotrexate side effects and he was told he’d need a double mastectomy if continued on the methotrexate - so he stopped the methotrexate in 2017 - his RA specialist was fuming - he tried Cyclosporine but that caused liver issues and wasn’t considered for biological as his RA not scoring high enough - so he stopped everything and the RA specialist discharged him along with a snotty letter - he then found a professor of RA who put him on low dose Prednisone (5mg daily now 2.5mg) and he takes high dose of turmeric - his RA in remission - his breast issues resolved and whilst initially his memory improved the lasting impact of methotrexate has caused some issues but he no longer has brain fog or the fatigue - this worked for him - my advice get tested by a neurologist and find a RA specialist that listens to your concerns
Thanks for sharing your husbands experiences. I'm so pleased to hear you found someone who listened and helped. For me one of the charateristics of brain fog is the effect on my memory. And I feel less affected after pausing the MTX. There's seems to be some disagreement between clinicians about the side effects and the lived experience of people that have to take it. I don't understand the difficulty in believing MTX can cause a wide range of side effects, and in addition to those listed in the leaflet.
I get these symptoms on higher doses and every now and again on the lower dose. My rheumatologist took me off it for 6 weeks then reproduced at the lowest dose and slowly increasing but 10mg is my tolerance. I could sleep for 36 hours straight on higher dose and have brain fog 6 out of 7 days
I remember your previous post, Seb. I'm glad to hear the brain fog has lifted a little and you're feeling somewhat better, though still horrified that you've had to take the drastic step of stopping RA medication all together because your rheumatology team won't discuss alternatives to methotrexate. The disease process can be active without there being obvious symptoms.
I've just had a look at the NICE guidelines - this is what they say about first-line interventions:
For adults with newly diagnosed active RA:
Offer first-line treatment with cDMARD monotherapy using oral methotrexate, leflunomide or sulfasalazine as soon as possible and ideally within 3 months of onset of persistent symptoms.
Consider hydroxychloroquine for first-line treatment as an alternative to oral methotrexate, leflunomide or sulfasalazine for mild or palindromic disease.
There ARE other options, and if you have unacceptable side effects with MTX leaving you with poor quality of life they should be considered!!! I've always found a response is more likely to written concerns, if there's an email address for your rheumatology department...
Thank you for the NICE information. I never thought to look for that. And for the encouragement, it is feeling an uphill struggle at the moment. Best wishes. Seb
I'd say yes meth does have these side effects
Does maybe sound like a money thing
Some rumatologists only go on bloods as well old school
I'd deff query
2nd opinion about the fibro
Diagnosis and specially If medication offered as well
there Is
To many rumatologists fobbing off with this diagnosis now and then leave to gp
Thanks. Having made the fibro diagnosis, confirmed via a letter from rheumatology to me and my GP, there's been zero follow up from my GP. You'd think there would be some response, given it's a new diagnosis. I think fibro gets diagnosed without proper clinical assesment because it's an easy way to fob patents off. I agree I need a second opinion. Maybe that's my way forward, prove I don't have fibro and we're back to discussing MTX side effects. Thanks. Seb.
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methotrexate and fatigue
Reduced methotrexate and dry mouth is back.
