Methotrexate - the good, the bad and the ugly?

I've been trying to take plaquenil over the last year or so having been unable to tolerate it in the past. This time round I go through the odd week where I feel ok on it but then it'll upset my stomach so badly again it becomes intolerable. During a visit to the rheumy nurse for a depomedrone injection for a flare last week she asked if I'd looked at methotrexate and to discuss it with my consultant - I have severe solar urticaria to all visible light as well as photosensitivity with my lupus separately and it is apparently good for that as well. Plus if I can tolerate it it can be injected and stop all the stomach reactions I'm getting from any other meds. She gave me a couple of leaflets that set out the standard information but they never give you the real life stories so I thought I'd ask on here. So methotrexate ... The good, the bad and the ugly. Go 😊

8 Replies

  • Everyone reacts differently to drugs my experience is that i had tablet form couldn't tolerate bad vomiting & diarrhoea .went to injections by epypen but these would cause sores a week later after injection & they wouldn't heal just got bigger so dr said try with normal injections but same thing happens so stopped .I hope you find something that helps I think it's try and see if it helps .x

  • That doesn't sound like fun - thanks for the feedback. The nurse did say that you either take to it and it's brilliant or you don't get on with it at all. I'm interested in the real life experiences either way so I can weigh everything up and discuss it with the rheumatologist with more knowledge before making my decision whether it's worth trying so thanks for helping with that :)

  • My mum is on tablet form she's been on it for years & it helps her .x

  • I don't have Lupus but this is my second time on MTX. The only side effect I have is a little hair loss. I have taken both the oral and injectable form.

    These things are very individual, you are going to have to try it to see if it suits you.

  • I was helped by methotrexate for 10 years. It helped me stay at work. I have had to change meds now as things changed. I had no side effects and there were lots of benefits. My 88 year old mother has it for rheumatoid arthritis not lupus, and she is better when taking it too. Good luck.

  • You won't know how YOU get on with it until YOU try. Many people complain about pred which is the only thing that manages my autoimmune disorder - I have no problems at all. If you look at the side effects list of any drug you wouldn't take it - including aspirin and paracetamol remedies for a cold. You have to try - it may work, it may not. You may be fine, you may be not. But you have to try it yourself, never mind how others get on.

  • Hi. Well, you know how each person responds differently to a drug. I've been on methotrexate for SLE since end of january, I can share my personal experience but obviously this is your choice and your consultant"s.

    Good: my pain and inflammation decreased so much after 2 weeks into MTX + steroids, I regained my social life. No nausea :) plaquenil was wrong for me. Rheumy says she gives it to lupus and RA patients with good results.

    Bad: I take pills 2 days a week (instead of 1 monthly injection), sometimes the day after I feel a little tired but manageable; oh and I just can't take it on empty stomach, it causes me gastritis.

    Ugly: I also have lupus nephritis and my kidneys didn't like this drug, I need more monitoring and inmunosupressants (mycophenolate mofetil) to counteract side effects... but it only happens because my kidneys were already affected by lupus.

    Good luck! :)

  • Many thanks for the replies so far. I may not have explained myself very well - I totally get that this is something I have to decide on myself and that one persons experience might not be another's etc. I'm trying to make that decision with a better picture of the likely pros and cons and to be as well informed as I can be to enable me to weigh things up properly. Going purely by the leaflets doesn't give a full picture to enable me to decide whether any possible risks are worth it in exchange for the possible benefits. One persons experience may not be mine in the same way one persons method of making these decisions may be different to another's. In my case I like to see what real life experiences have been to help with that alongside other evidence available to me before I have that discussion so that it's an informed one where any questions or concerns can be dealt with at the outset rather than having to go away and think about it until my next appointment 6 months later.

    All responses good or bad help me with that so thank you :)

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