Stopping MTX whilst on Adalimumab - my rights vs. the risks

nellooo

Hi everyone,

I've been on Adalimumab for around one year. I'm on bi-weekly injections with weekly MTX injections, for RA. I am doing better than I was - and clinically, my consultants say that my treatment is working well. Personally I don't feel like my treatment is working particularly well BUT I accept that clinically it is (hence they won't consider changing my treatment regime).

I would love if anyone can advise on whether I can stop using MTX and stay on the biologic only. I am aware that the two work synergistically and that it reduces the likelihood of the body reducing the other drug (a drug which I obviously desperately need and don't want to endanger myself for the longterm). However, I am really, really, really struggling and I blame the MTX for the worst of my symptoms. It makes me feel so terrible, physically and mentally. I feel like it's ruining my quality of life. I already take it on a Friday - so that I can lie in bed and recover all weekend if needed. I have complained continuously before and they moved me onto injections and, most recently, reduced my MTX dose to 20 mg. My GP prescribed me amitriptyline to offset the negative impact on my mood of MTX - this helped a lot initially.

I have got to the point where I can barely bring myself to do my MTX injection (i'm honestly thinking about stopping secretly from desperation). I'm at the point where I want to advocate for coming off MTX altogether but I don't quite understand my rights vs. the risks. All my doctors have been sympathetic when I cry to them about my MTX side effects but none have agreed to let me stop it.

Do rheumatologists allow people to stop MTX if the symptoms become unmanageable for them??

I don't want to go back to square 1 with my RA, but I'm struggling so much to keep going... I know that it's hard to pinpoint exactly where fatigue and BLEUUUUUGH feelings are coming from, but I'd love to hear if anyone else has been through this… can advise on either side of the fence.

thank you!

Ellen

Hi @nellooo I can absolutely understand how you are feeling.

Obviously we are not able to give medical advice, but I wonder whether these posts might be useful to you?

https://community.versusarthritis.org/search?domain=all_content&query=can%27t%20tolerate%20MTX&scope=site&source=community

Hopefully some of our members will see your post too and share their own experience.

Best wishes

Ellen.

frogmorton

Hi @nellooo

Sounds like you are really, really struggling with your MTX. Seriously loads of people here have stopped taking it for various reasons. Not coping with the side effects is definitely one of them.

It's your body - remember that - and you are saying to me that you can't face taking it. It sounds as though Rheumatology aren't listening to you.

When you go do you take anyone with you? I find most medical professionals listen to me much better if I am not on my own.

If you've got an appt soon I would tell them what you've said here and honestly be quite forceful with them. There may be an alternative they can suggest so giving them one more chance to hear you would be good.

I am so sorry you are having such a tough time, but trust me you are not alone ((()))

Toni x

jamieA

Hi @nellooo

I take sulfasalazine, MTX tablets and adalimumab for my PsA. I asked my rheumatologist last year if I could reduce my drug intake as I also need take 3 different heart meds as well. For my PsA I'd been started on sulfasalazine and when that didn't work MTX was added and the combination didn't work. It was only when adalimumab was added that my symptoms reduced. So I was of the belief that both sulfasalazine and MTX were superfluous to my treatment. My rheumatologist didn't think so but agreed that I could reduce my sulfasalazine from 3gms a day to 2gms a day. Four weeks later I had quite a flare and she put it down to the reduction so I'm back on 3gms a day. She stressed the synergistic approach - or as she described it 1+1+1>3.

I know we are all different in how we react to drugs but I thought I'd at least chip in with my experience. I hope you get a resolution to your predicament quickly.

nellooo

hi @jamieA thanks for sharing your experience. This is what the consultants have said to me, almost word for word - and warned of this exact scenario happening. But I also know people who take Adulabinab without DMARDs. It's interesting you take your MTX as a small daily dose? Do you get bad side-effects from that?

jamieA

Hi @nellooo

Sorry if I've confused you. I take 6 X 500mg sulfasalazine tablets daily and take 10mgs of MTX weekly on a Thursday - it was 20mgs of MTX initially. I was actually hospitalised 2021 with atrial fibrillation and tachycardia about 3 months after starting MTX on 20mgs and 2 weeks after the medics had doubled my Amitriptylene dosage. This was before I'd been prescribed adalimumab. I'd had no previous history of heart issues. By my second bout of tachycardia 7 months after starting MTX - and 3 months after starting adalimumab - my PsA had been brought under control. When I was admitted to hospital for this second heart issue it wasn't a cardiologist who saw me but a rheumatologist. He cut my MTX to 10mgs and I'd no further heart episodes but it didn't adversely affect my PsA stability. In 2023 I attended the Nuffield Joint Pain course and for the first time met other inflammatory arthritis sufferers who were on biologics only. That prompted me to ask my rheumatologist about reducing my drug intake of over 100 pills a week - plus of course my adalimumab injection. My cardiologist didn't want me to reduce the heart drugs. My rheumatologist reluctantly agreed to reduce my sulfasalazine firstly to 250gms daily and then 200gms. About 4 weeks after the reduction I took quite a severe flare and the dosage was upped to 250 and then 300mgs which settled things back down. One thing I would warn is that communication between rheumatology and GP was slow and so the whole process of moving back up to 300mgs of sulfasalazine on prescription was delayed - luckily I had a squirrel store of sulfasalazine.

As far as side effects from MTX I only get fatigue either the day after or 2 days after taking it. However I'm still convinced that either the 20mg level of MTX - or that combined with the doubling of my Amitriptylene dose - was responsible for the heart issues. However the cardiologist doesn't think so.