Methotrexate what can I expect

Difficulty coming down off prednisolone so rheumy putting me on methotrexate ,read all the info but really I need some real life answers of what to expect when on this drug As my experience on steroids is not good If anyone can share with me the positive or negatives I feel I would be more aware of what to expect Many thanks and take care

15 Replies

  • Hi, I was initially diagnosed June last year with Rheumatoid arthritis and was put on Methotrexate. Within two weeks I developed leg ulcers on both legs. Upon biopsies it was proven that I had Systemic Rheumatoid Vasculitis instead. I was taken off methotrexate and given Cyclophosphamide 700mg intravenously monthly for six months with 60mg of Prednisolone daily. I had read that in some patients methotrexate could cause leg ulcers to appear so think that I was was one of that rare breed.

    I am now on 2g of Mycophenolate daily with Prednisolone down to 5mg daily. Ulcers were cleared by December. Hope this helps.

  • Thanks I just find it so scary that these meds cause so many bad side effects It's just the thought of going blind with this vasculitis that scares me

  • It seems to have different reactions with different people. Two close neighbours are taking it and think it is wonderful and has changed their lives. One has rheumatoid arthritis and has managed to stop his prednisone completely, the other has Shjogrens and is on a mixed dose of 5mg prednisone daily and 6 mg methotrexate a week. Neither are troubled by side effects. I've also got a cousin taking 15 mg a week - he doesn't like it, but admits it is the one thing that is working. It didn't suit me at all though-it didn't work and made me feel bad. I think you just have to try, and shout loudly if it doesn't suit you. There are alternatives and lots of us have been through more than one option. Good luck.

  • I was diagnosed with WG June 2011 and started cyclo and pred regime quickly. After 10 months of cyclo I was switched to 10mg of oral methotrexate. I am afraid my experience of it was awful, I felt sick all the time and vomitted most days. My consultant changed me to weekly methotrexate injections which have been better. I still feel ropey for a few days after injection and even sick sometimes but I am tolerating injections better, I do wonder though if anything that we take is without side effects, it's maybe a case of "damned if we do and damned if we don't" Good luck and I hope you find a regime that helps you.

  • I have Takayasu's and take 16mg of methotrexate each week and for me it suits and keeps me from flaring.

    I don't have any side effects and have been able to now come of steroids.

  • I have the same just been put on methotrexate10mgs on prednisolone 10mgs long did it take to come of prednisolone?Are your bloods within normal limits?

  • Yes bloods are ok. I was on steroids over 10 years and had some serious flares the last one being in 2008

    This was because I was not on methotrexate and the drug I was on was not strong enough. I have steroids stored just in case I feel I need them and my consultant is happy with that

  • I have WG and took it for a couple of years without problem.

  • I have WG and have been taking it for many years (apart from a short break when my liver function test was a bit dodgy). It's important to have regular (monthly) blood tests when on the medication as it can mess with your liver. I take 20mg weekly subcutaneously on a Monday and try to keep my Tuesday free as I do tend to feel sick on that day. Otherwise no problems with it and, as it's the only maintenance drug my body will accept, that's a good thing!

  • Hello I have TAK/GCA and I take 25 mg methotrexate per week and 10 mg Prednislone. Up until now no problem with methotrexate but now in I am having problems with an irritated bladder / it is like having cystitis constantly but there is no infection there. I had to come off methotrexate a few years ago because of this problem. I think I sm going to have to come off it again. The only other symptom I had was nausea when I started taking the drug. If you build up the drug slowly you should avoid the actual vomiting side effect that some people get. It us like s drugs everyone's reaction to it us different and you have to weigh up the benefits of taking it. Good luck.

  • Thank you all I am so tired on the steroids and had a bad lupus flare I take on board all you say I have read that exercise is good Which try to do at least twice a week Also the social side of that helps keep ones spirits up . I suppose I am very scared as I thought the steroids would not affect me so Ever the optimist HaHa Like you say the benefits outweigh the bad reactions I hope No I'm sure I will be positive Cant start them this weekend as have a couple of days away to Oban our daughter has treated us to some Spa treatments So I will enjoy those , have my last glass of wine and let you all know how I get on. Thanks again and take care

  • I have been on methotrexate for just over a year now, and it has been the best thing ever!! I started on 2.5 mg weekly, and gradually built up to 30mg once a week. It is very important that you have monthly blood tests to monitor your levels. And I also have to take frolic acid. I take methotrexate on a Monday, and frolic acid on a Friday. I have been very lucky, and not had any side effects, although recently I have been having a similar thing to someone with the feeling of cystitis, and I have had 4 urine infections so far this year. I think the main thing is to start of f with a low dose and take your time to work up, and keep it monitored with bloods.

  • i have been on 15mg of methotrexate since jan and i have had no side effects whatsoever. I have been losing hair but luckily i have a lot of it. im now down on the lowest dose of prednisolone ive been on in 5years (im on 6mg) and im having no major flare up. I still drink alcohol (just in moderation)

    I hope it works for you :) xxx

  • I am on 15mg of methotrexate since January as well doing nothing for my feet I am on prednisolone 15mg then 20mg I don't drink alcohol because it could damage liver

  • Thank you for your replies Took my first tab 15 mg last mon by iv'd had bad flu symptoms had to stay in bed by thurs had very bad pain down my shins very painful on walking Not a great week Take the folic acid tab every day except the day I take the metho which is today and I've had horrific headache so will monitor myself after my second metho If I'm no better I will get in touch with my doc. I can only hope it gets better Thanks again I'm still on 30 mg of pred so have hair breakage with that .

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