Are you on an immunosuppressant drug? Another study for patients to participate in

[PMRpro]

healthunlocked.com/lupusuk/...

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.

[PMRCanada]

Read the info however despite having been on MTX for more than 6 months, I don’t have any of the “qualifying diseases” (PMR was not listed).

Important research though. Of note I have bloodwork monthly and meet with rheumy every 3 months to review and update.

[PMRpro Ambassador in reply to PMRCanada]

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.

[PMRCanada in reply to PMRpro]

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. “

[jessiem in reply to PMRCanada]

You can put PMR under “other”

[PMRCanada in reply to jessiem]

Good to know.

[JGBH]

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,

[PMRpro Ambassador in reply to JGBH]

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.

[JGBH in reply to PMRpro]

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.

[PMRCanada in reply to JGBH]

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.

[jessiem in reply to PMRCanada]

I stopped MXT when I had Covid and PMR returned with a bang!

[PMRpro Ambassador in reply to jessiem]

Or could it be the Covid? Long Covid has many commonalities with PMR and other a/i disorders

[PMRCanada in reply to jessiem]

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!

[JGBH in reply to PMRCanada]

Pleased it is working for you. But important to note it does not work for everyone.

[jessiem]

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.

[PMRpro Ambassador in reply to jessiem]

It does, don't disagree. But I believe in having an open mind!!! All the best on the MTX.

[MrsNails in reply to jessiem]

It may take a little while but you’ll get there almost without realising Good Luck 🍀

[MrsNails]

Done! ✅

[Grammy80]

Done ✔️

[PMRCanada]

Done ✔️