This is aimed at patients on immunosuppressive medication for their inflammatory disorder - they mention methotrexate, azathioprine and sulphasalazine - who have been on the drug for more than 6 months, They are looking for information about monitoring practices - and from the posts I have read recently there are some hair-raising stories! Of course Covid messed things up but methotrexate needs to be monitored properly and I know a few haven't been. The aim is to improve the monitoring.
I haven't bother rewriting the LupusUK post - the links are there, just click on them and read the info sheet to see if you feel you can help.
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I don't think the specific disease is that important - they often don't think of us being on the relevant drugs which is what the study is about, monitoring them.
I interpreted that I was not who they were looking to hear from based on this paragraph:
“You are being invited to take part because you have one of the following inflammatory diseases: rheumatoid arthritis, inflammatory bowel disease, psoriasis +/- arthritis, ankylosing spondylitis, systemic lupus erythematosus, or reactive arthritis, and have been taking immune suppressing drugs for six months or longer. “
Thanks for the information. However there are other strong immunosuppressants, like the biologic ones mostly used for RA (and some for other conditions), like Tocilizumab which I inject every week. Etanercept, etc. The are others taking in tablet form, Baricitinib etc. So is there any information about these?
Methotrexate, which I took in tablet form then weekly injections, was simply dreadful for me! What an horror! It made me feel so ill I couldn’t eat anymore, couldn’t digest food… yet the arrogant know-it-all rheumatologist kept saying methotrexate did not do that! These people need to learn and develop some humility. I told her I was stopping it. It was in connection with Etanercept injections. She reluctantly agreed saying if Etanercept didn’t work well solo I would have to take methotrexate again… Of course I agreed having no intention to use methotrexate again… I felt like I was being poisoned ! Well, Etanercept worked brilliantly alone for 14 years! It took me a month before I stopped feeling so ill and sick, recovering from methotrexate poisoning.
Perhaps some people have no problem with it but it really made me very poorly,
The study appears to be monitoring the use of DMARDs rather than the biologics.
I agree - rheumies are blissfully unaware of how unpleasant MTX can be.A study actually found a great discrepancy: they think it is wonderful and well tolerated and far preferable to pred, in fact about a third of patients stop it because it doesn't work and another third because of intolerable side effects.
Thank you for replying. I wonder why no studies are being carried out on the effects of biologics. I agree methotrexate is not the wonderful drugs doctors insist it is.
Sorry to hear that MTX made you feel so ill, and worse having to deal with a pushy rheumy. You are not the first person I’ve heard of that suffered terrible effects from taking it.
Luckily I’ve been on it just over 6 months with hardly any ill effects at all. When I stopped it for 3 weeks my PMR symptoms re-emerged, and I’ve managed to lower my daily pred dose, so it must be doing something.
Glad you’re having better results with alternative medications.
Myself and hubby now positive for COVID! I’m pretty much asymptomatic (unlike when I had Delta in May 2020), he was down for the count the first 2 days.
I’ll be skipping my weekly MTX injection for one week so hopefully no return of PMR symptoms. Fingers crossed!
Saw Rheaumhatoligist today - he explained any infection has the ability to make conditions flare. So I’m hoping I’ll be on track again now I’m back on the MXT. Time will tell.
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