Methotrexate "blah"

Julsrn
Julsrn Member Posts: 3
edited 28. Nov 2023, 14:10 in Living with arthritis

My 20+ daughter was dx with JRA when she was 3yrs old.. Methotrexate was the answere. Went into remission around 7yrs old. About 2 months ago, Rheumatologist put her back on the Methotrexate.. she takes the injections as they are better tolerated. Its been a few months and while joint pain is better, she seems to be very fatigued and just generally sad, low motivation etc. I've read this can happen but should pass. I was hoping someone whould have some insight as to how long this could last or if it ever happened to anyone else. She didn't have this effect as a kid.. thanks for listening.

Comments

  • Tom
    Tom Member Posts: 522

    Greetings @Julsrn and welcome to the forum.

    Your daughter has been in remission from JIA from the age of 77, but is now experiencing pain and fatigue and is emotionally low.

    I found this on the website, recounting the storey of Aimee whose experience has many similarities to your daughters. I hope this helps.

    https://www.versusarthritis.org/news/2020/december/aimee-shares-her-experience-of-taking-methotrexate-as-a-young-person/


    Please keep posting and let us know how your daughter progresses.

    Tom,

    Moderator.

  • Julsrn
    Julsrn Member Posts: 3

    So for clarity, the pain is greatly improved with the injections.. she seems to have a side effect of feeling fatigued and just blah. I wondered if anyone else had similar side effects and if they pass.. I have read that these side effects happen but nothing about how long or if they go away.

    Thanks for the article tho

  • frogmorton
    frogmorton Member Posts: 29,402

    Hi @Julsrn

    It's not great is it? Feeling 'Meh' 😕

    I am resuming she is having the usual folic acid on the other days? as I'm sure you know that can mitigate the effects.

    The other thing many of us do is to take our dose in the evening so that we sleep off some of the effects and try to take it on a day when she can rest a lot the next day. Maybe a Friday? Others find eating certain things helps them. I know one lady who swore by fish and chips. Me I was (prior to being vegan) a cheese and onion pasty person!

    Just out of interest is your daughter on steroids at all? I just know my own daughter was on them for leukaemia at a similar age and it made her very very down and tearful.

    Don't forget to look after yourself too it's very very tough being a Mum with a poorly daughter ((()))

    Toni xx

  • Hairobsessed123
    Hairobsessed123 Member Posts: 157

    Hi @Julsrn

    I have been on methotrexate and sulfasalazine for a while and just recently had to stop due to being poorly 😷

    Anyway literally in a week my energy and mood has improved unbelievably so much so I can now see how’s the meds have been affecting me ( no pain a few flares ) but I literally had no energy to do normal things

    so I have not gone back on them I have a nurse teleost appointment tomorrow and I’m going to ask for alternative therapy because it’s all very well being pain free but there’s no point if u feel blah 😑

    I would discuss this with your rhumatology team because your daughter is at an age where she should have alit of energy x

Back to top

Categories