1. Community
  2. Bones, joints and muscles
  3. Methotrexate

MTX newbie..

Posted , 3 users are following.

clare88367
clare88367

Hi I'm new to methotrexate and want to check some side effects that don't seem to be listed.  I take 5mg, so a low dose, and on about week 6.  Two immediate side effects are horrible joint pain and stiffness to the point it's difficult to walk once i have been sitting for even a short time, and also a rash on my face that is hot and slightly itchy.  The MTX does work to control my problem, which is urticarial vasculitis.  Another side effect is that my neutrophil count keeps dropping - it went down to 1.8 (normal range is 3-8 I believe) so I stopped the MTX for two weeks and the count went up to 3, but since resuming the drug is dropping again. (Have had previous hospitalisation for compromised bone marrow with Dapsone, so a little wary).  Dermatologist airily waves away my concerns.  Is she right to?

0 likes, 3 replies

3 Replies

  • sunny25366
    sunny25366 clare88367

    Posted

    Hello. Clare! I dont know your condition its probably an off label use for your condition as it is mine (Lupus). YOU dont let any doctor any nurse wave your concerns off!!! Your body, then girl YOU own it and YOU manage it. MTX is a crazy drug. Serious serious....proper care is required.  You are now officially sun sensitive. Be a vampire. Limit sun exposure and heat exposure, this will cause rashes. Cool temps and shade are essential. Watch your drug interactions! Take folic acid on the NON treatment days. MTX kills the bad cells that replicate but it also kills other good cells.  So wash your hands all the time, get some hand sanitizer.  Good luck we are all here if you need any advice.  Best.  Sunny
  • 1_hand_works
    1_hand_works clare88367

    Posted

    Completely agree with sunny. MTX works really well for some, badly for others. There is a reason your bloods need monitoring closely, and increased risk of infections, liver problems etc. are really important. They should not be ignored and if you feel awful, you need to tell them and make sure they document it. I hope these are just teething problems, as it does take a while for your body to get used to it, if after 3 to 6 months the MTX is still causing you problems, the health professionals need to think about other options. Good luck

     

    • clare88367
      clare88367 1_hand_works

      Posted

      So I should relax a little bit and wait a while before I panic?  Yes Sunny, having taken ciclosporin for a good few years I learned to stay out of the sun, and that's no big deal for me, being a winter baby, but I have struggled with the alcohol restrictions with the MTX.  I also have swollen and sore lymph glands in neck and sometimes armpits, and petichae (is that the right term, like blood blisters in the skin?) on my chest , new each morning.  As you can probably tell, not feeling particularly supported by my dermatologist. 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.