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Vasculitis UK
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Methotrexate & ongoing side effects

Hi everyone

I’m on Methotrexate injections for my AAV vasculitis just had my 10th yesterday. Still experiencing unpleasant side effects including more recently GI problems. Struggling with work ( still have 20+ yrs left) and life in general due to these and restrictions that come with this treatment. I’m doing everything I can to reduce them such as drinking plenty of water day of injection and around 8 pints the following day! Also take 6 folic acid tablets a week. Are there alternative treatment options available does anyone know with less problems/ restrictions?

Have appt with Consultant next month but thought I’d ask you guys first so at least I can have this discussion.

Thanks

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Other than not drinking more than a small amount of alcohol I'm not clear what restrictions you mean. However, for some people the use of the injected form of methotrexate does reduce the nausea aspect.

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Alcohol yes plays a part. But having to take day off work after the injection at the moment and it feels like I’m revolving everything around the injection. I have a funeral coming up soon and order to go omitting the injection for that week. I love the sun and despite covering up the best I can and applying high factor sun cream come out in awful rash. I’ve always been fortunate in the past and never burned! Going to the canaries next month which is a worry. Im constantly tired no mojo so to speak and feeling a bit low. I guess it’s the little things that accumulate. Apologies for moaning but my question was only asking if there were alternatives about!

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I know a lot of RA patients on mtx take it on Friday night so the "mtx flu" happens over the weekend so they are improving by Monday to go back to work. I think you can shift it by 24 hours without problems arising but not much more than that. I took mtx for a month and it was the fatigue that was the cherry on the top for me to say "no more" (I don't have to use it, it was in the hope of reducing the pred dose). I couldn't face the inability to do anything that beckoned.

In terms of alternatives to mtx for what you have, I imagine that really your best bet is to discuss it with your consultant but this is a link to the EULAR Guidelines

ard.bmj.com/content/75/9/1583

where they mention steroids plus either mtx or mycophenolate mofetil for induction of remission for non-organ-threatening AVV in Statement 4. So yes, there is an alternative to induce remission - but a wider choice of DMARDs is mentioned in Statement 7 for maintenance of remission.

So it does depend on what stage you are at at present. Some people can take these combinations and have no problems at all - others can't. The only way to know is to try them. The options are set out quite clearly in that link so the next stage is to discuss it with your specialist - I assume you are under an expert in the field and not just the local hospital rheumy?

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Ok thanks will have a look. I’d like some quality of life as I don’t work weekends so chose mid week as the first part of the week is very busy for me at work.

See rheumy consultant at my local hospital although only seen him once so far.

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Is he really up to scratch for such a specialist disease?

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I wouldn’t know but it’s not something I feel confident in asking!!

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You could ask the VasculitisUK group who they would recommend.

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Not sure if I can just swap to another hospital that’s out of my catchment area though

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If you are in England you can, it is harder in Wales or Scotland. But you need someone who really knows what they are doing - and VasculitisUK can probably help you find out.

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Hi mish-da

My gp referred me to Addenbrookes, at my request, which is 60+ miles away, so you can request to be referred outside your area if you are in England . I didn’t get on with methotrexate and went back to rituximab. There are alternatives but as PMR pro says it depends on what stage you are at. You definitely need to be treated by someone that knows about your condition though.

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Ok thanks you that’s handy to know as Addenbrookes is around 35 miles away from me. I’ll see what happens at my appt next month

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Personally, I think I would ask for a referral now - it won't happen overnight.

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Personally I would also do it now unless you can find a specialist locally. Incidentally I believe Addenbrookes will also do shared care with your local hospital if that’s a better option for you.

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It takes 3 weeks to get an appointment to see the GP by which time I will have seen the consultant!

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Fair enough!!!!

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I became concerned about treatment at my local hospital when one of the nurses let slip that the only previous vasculitis patient she knew about had been diagnosed at a post mortem. The consultant had already told me that he didn’t believe in ‘shared care’. A phone call to my GP moved the situation on very quickly....I saw him, and we decided that I’d lost all confidence in the local department and should be referred to Addenbrookes. They saw me very quickly, changed my treatment and I started improving. I call it my ‘lost summer’ as I remember very little of my time on methotrexate - it felt as though I was in a continuous fog. Coming off it felt like moving out of a box and into the sun.

In terms of distance, I’m twenty five minutes from my district hospital and an hour from Addenbrookes.

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Oh blimey I’m glad things are looking up for you now though. Not sure whether to approach the subject of swapping or asking about his expertise in the area at my next appt. have concerns that it may affect my I Initial care/ his approach towards me. Should I just make an appt with my GP to have this discussion regardless??

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Go via your GP - and ask to be sent to Addenbrookes

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Yes - It’s your care! But in my experience, my GP was very sympathetic once he realised my frustrations and that I wasn’t improving. Your GPs problem is probably that he knows very little about Vasculitis....most GPs will only see one case in their whole career. And Addenbrookes helped by seeing me very quickly after I’d been referred.

You could also ring Vasculitis UK and ask for their guidance in how to approach the issue. Good luck.

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Mish-da , I have been on MTX for over a year , I have found it tough in the beginning, due to doesages I have settled I have settled in a .8 cc injected once a week allways Friday nite and folic acid 7 days a week and down to 1mg of prednazolone ,in the first 6 months it was tough , but now I have a life as long as I follow this routine religiously . I have systemic vaculites and GCA , diagnosed 2yrs ago Vancouver Canada. , I hope everything gets easier for you, but is does take a while before your body adapts to the meds , a good rheumatologist and a doctor that works hand in order to give you a better quality of life .

I wish you well

Regrads Ren

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Thank you Ren that’s very good to hear. 🤞light at the end of the tunnel!!

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Hi Mish -da , I too am struggling on 20mg weekly oral MTX . I take it on a Monday so I do have some quality of life at the weekend (other symptoms allowing) . Tues/ Weds are generally a write off and and I work from home for a few hours (employers have been great).

I’ve been asking at every appointment I have if there is anything that can help and I got a call yesterday to say they would try switching me to injections instead although it’s mainly thought that would just alleviate nausea which I don’t really get . It is reassuring to know it’s not just me though as the consultants and nurses seem to think there aren’t any real side effects of MTX but I dread the Monday night tablets knowing what will follow ! I’m hoping the injections might help .

I tried increasing folic acid (up to 30mg a week) and that didn’t work , I’ve got 4 years left on MTX so hoping something will change . Good luck to you in seeking the right care

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mtx has no side effects? Think they want to try taking it! I felt worse on it than I did with the vasculitis I have with no treatment and I had that for 5 years!!

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Totally agree PMRpro I’m even thinking of skipping a week when on holiday so as not to spoil it . Even my wife hates me taking it as she sees the effect it has every week and after taking it for over a year now I think I’ve got as used to it as I’m going to .

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When I started it I told the rheumy I would stop to go to an international science meeting 4 weeks later. He was fine about that. By the time I got to that stage I was so exhausted I couldn't lift my feet and it was steadily getting worse - within a week of stopping I was feeling better. I have never started again. Losing hair is one thing and horrible enough - but not being able to function at all?? That's for the birds ...

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I’m definitely skipping it when I go

away in a few weeks..

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Exactly😣

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Unfortunately I switched over to the injections don’t get the nausea really but like the others have said as well as you totally wiped out with banging head despite keeping myself rehydrated. I have around 2 days a week where I have some energy but nothing like I use to have. I’m

Not sure how much longer my employer will be lenient with me working from home the day after. Need to look into whether this condition falls under the equality act too as maybe there’s some scope with reasonable adjustments.

I hope things improve for you and good luck too!

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I must admit I’m not too optimistic about switching to injections but thought it was worth a go .

I also have AAV vasculitis EGPA and I have done the research and discussed it with my employers and it is covered by the equality act so that will give you some protection hopefully. Although it’s not specifically named if you look at the definition it definitely fits and I have had reasonable adjustments as a result. I have taken print outs of what EGPA is with me to Occ health appointments as no-one knew what it was (understandably) even the consultant I saw pretended to know but clearly didn’t have a clue until I offered some prompts 😉

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It seems to be a ‘marmite’ drug, fine if it suits you, but horrid if it doesn’t. I have two neighbours on it (Sjogrens and RA) and they both think it’s marvellous and are absolutely fine. What I don’t understand is why doctors insist on continuing it even if it wipes you out for several days a week. There are other drugs that work just as well and don’t cause the same problems. The only vaguely good thing for me was that when my hair grew back I had curls for the first time!

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Suppose it depends at what stage - in the early days they hang onto the idea it takes up to 6 months to start working and in that time your body may get used to it. But good doctors don't - mine accepted it when I listed the side effects that had appeared while on mtx: basically, all the claimed pred-related adverse effects I'd never hand before!!

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Ritiximub put me in remission for 2years. methotrexate is chemo drug made me strange only once I came off it did I realise how much it affected me.on dapsone and turmeric now.wont take any horrid drugs anymore.good luck

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I had terrible side effects with Methotrexate, sickness, dizziness, ulcers in my mouth, sore feet sore hands and then I got Pneumonia in both lungs...I was on it for 3 months..so I have been taken off this now ,,, and have started Tocilizumab which is an injection once a week in the stomach, I have only had 2 injections so far, and I am on 40mg of prednisolone, I would asked to change it doesn't suit everyone goodluck

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Just to update stopping mtx starting mycophenolate soon. Hope this one is better! 🤞

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