MTX and ongoing side effects

[Mish-da]

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 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

[oldtimer]

There are other options for treatment. Have a look at the treatment pages on the NRAS website for unbiased information.

Some people (like me!) just don't get on with methotrexate while others cope perfectly well. If you are continuing to have problems that you can't tolerate, tell your medical team.

[helixhelix]

I don’t know much about AAV vasculitis, but I think the treatment pathways are different from those in RA and many fewer drug options. And most drugs have some restrictions, so depends which ones you find problematic. If it’s having to avoid pregnancy then quite a few other drugs are also contraindicated. But apart from that MTX isn’t restrictive?

Anyway, the big questions are whether it is helping, and whether the side effects are diminishing (even just a tiny bit) each week. As sometimes alternatives may not be better. I think for you the other first line treatments are steroids (ugh), cyclophosamide, or mycophenolate. You should be able to look up treatment pathway to check. And none of these are smarties. So make sure you ask consultant as otherwise you could be jumping from frying pan to fire.

[Hidden]

Have you tried the Vasculitis community? healthunlocked.com/vasculit... or maybe visit the Vasculits UK website. vasculitis.org.uk/ I know some Vasculitis sufferers take Azathioprine , but I haven't tried it myself ( I have Rheumatoid Vasculitis).

vasculitis.org.uk/about-vas...

[Mish-da in reply to Hidden]

Hi yes also on there but doesn’t seem quite as active as here!