Osteoarthritis returned now Ibrutinib stopped!

[Jooby59]

Lots of people have said their arthritis has got worse since being on Ibrutinib. After taking it for 9 months I stopped taking it 2 weeks ago and already my osteoarthritis has returned! Coincidence? Or did Ibrutinib suppress the inflammation? 🤔

[cajunjeff]

Jooby, ibrutinib (a btk inhibitor) was originally developed as a drug to treat rheumatoid arthritis (RA). Other btk inhibitors are being investigated now to treat arthritis.

So I think, despite the fact that ibrutinib does cause joint pain for some people, that it might well have helped your arthritis.

How does that happen? I’m not quite sure. But it might relate to the idea that Ibrutinib could possibly provide protection for covid patients with its immunosuppressive qualities which reduce inflammation (an over active immune system).

Since RA is a type of an autoimmune disease where the body attacks itself, it’s reasonable to suspect ibrutinib could help. Ibrutinib is thought to help with hemolytic anemia as well.

[Jooby59 in reply to cajunjeff]

Thank you for that great explanation. I hope venetoclax will do the same!

[AussieNeil Partner Administrator in reply to Jooby59]

Many CLL drugs are also used (in different treatment protocols with different doses), for treating auto-immune diseases. That's because they remove B-lymphocytes that are forming antibodies that attack body cells. This is also why drugs used to treat auto-immune conditions also lower overall immunity.

Technical: In the normal B-lymphocyte maturation process, B-lymphocytes go through what's called somatic hypermutation. The IgHV gene region is randomly rearranged to create unique B cell receptors to find some that will lock onto a pathogen. Sometimes during this random process B cell receptors are formed that lock onto our cells and these are normally are repurposed. For some reason, that doesn't happen correctly when someone has an auto-immune condition.

This problem can also occur when we have CLL, We are more susceptible to auto-immune conditions where we can form B-lymphocytes that strangely attack just our blood cell types. That's usually our red blood cells (hence Auto-immune Haemololytic Anaemia - AIHA), platelets (Idiopathic thrombocytopenic purpura - ITP) but sometimes even our neutrophils.

Neil

[oztrader in reply to AussieNeil]

Interesting information Neil .Thx. I have myself found the Bursitis in left shoulder has somewhat improve since starting the Assure Trial on Acalabrutinib June 26th.

[Jooby59]

Thank you for this although still working out what it all means 😂

[Cllsller]

I have had horrible joint pain. I went back on Ibrutinib a little over a year ago which made it much worse. I had a total knee replacement 3 months ago and I can walk without a cane now! Please consider yourself fortunate if it has had the opposite effect!

Dorothy Star cll, sll since 2005

[Jooby59 in reply to Cllsller]

Poor you and, yes, I do think I was lucky! Now it has returned I am remembering how painful it can be. Hope you continue to do well.

[Cllsller]

I hope you continue to do well. I wasn’t looking for your sympathy (sarcasm, maybe). I apologize. Be safe and hopefully we’ll.

[Jooby59 in reply to Cllsller]

I was absolutely genuine in showing sympathy - joint pain is very debilitating. x

[Cllsller]

Thank you YES I agree. Thank you 😷😄😢

[Catnap7]

The last month of my 2 yr Ibrutinib/Venetoclax trial my body hurt to sit, hurt to standand hurt to walk( flat or upstairs). It even hurt when trying to sleep at night I figured I was just getting over saturated. Several days after stopping both .. I was liberated !!!

Started back to Zumba, back to the treadmill, back to Pilates and back to water aerobics.

You were very fortunate !

Catnap7