Knee pain

[Deta1961]

Hello my fightmates. My blood tests are getting better after almost 2 years on Ibrutinib, however i have lots of knee pain. I reduced ib from 3 pills to 2 about 3 months ago, My hemo wants me to take cortisone again for pain... hemo says that although blood is getting almost normal, can’t stop IB because everything would go back, anyone on this situation, or stopped IB for a while?? This knee pains are terrible, especially during the night in the bed!! Still on imunoglobulin once a month because my igv’s are still very low

[Panz]

I use Biofreeze and TheraWorx for all pain be it muscle or bone. Both are great products. I was pulled from the Imbruvica July 12 due to having two types of pneumonia at the same time. They pulled me so as to give my body a better chance to fight. Yes, I have had both pneumonia shots every five years since they have been available. They will be putting me back on Imbruvica when the WBC or Platelets indicate need be. WBC is 7.7 and platelets are 105. I get IVIG every 4 weeks. Panz 🙏😍💕☘️

[AussieNeil Administrator]

Your haematologist is right. About 10% of those on Ibrutinib reach U-MRD after 5 years, so you would be unwise to stop taking Ibrutinib until you have U-MRD confirmed or your CLL is likely to return - and it can do so quite aggressively. A possible alternative to further reducing your Ibrutinib could be switching to the second generation BTK inhibitor Acalabrutinib/Calquence, which doesn't seem to have the arthralgia side effect issue. It can be prescribed off label in the USA as it is approved for Mantle Cell Lymphoma. There are other second generation BTK inhibitors like Zanubrutinib, but they would probably only be available via a clinical trial.

Neil

[BeTheSmile]

It appears from their web site that TheraWorx has grapefruit extract in it. Not sure if it is enough to worry about, but grapefruit is one of those prohibited things with ibrutinib. Perhaps there is another magnesium supplement without that.

[W00dfin]

Don’t forget ice packs. Use a towel under it for 20-30 minutes per session.

[W00dfin]

PS

We found a good refreezeable ice pack online: Flexi Kold.

I also use the aspirin based Salonpas pain patches on my knees. Doesn’t seem to affect my platelets.