Zanabrutinib side effects: I have been on... - CLL Support

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Zanabrutinib side effects

motorcycle1 profile image
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I have been on Zanabrutinib since July 2023. Very good test results. But I am having horrid pain in my back and thighs. My Doctor just cut my dose in half. Still experiencing the pain. When I stopped taking the meds while taking Paxlovid for Covid after 5 days the pain went away. Also I had to stop taking it again for a kidney stone removal surgery and again after 5 days the pain went away. I do have a low back fusion L4 to S1. However although I also have pain from that it is different. I am sure the 2 are unrelated.

Anyone taking Zanabrutinib having similar back and thigh pain? If so, any advise as to what might help would be appreciated.

Thanks

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motorcycle1
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CoachVera55 profile image
CoachVera55

I had severe bone pain while on Zanubrutinib. Many here say that increased fluid intake, light exercise & a daily antihistamine help lower pain levels.

But I was also on Protonix & Oral & Respiratory Inhaler Steroids to deal with the side effects. All 3 oral drugs & the inhaler have bone pain as a side effect. I guess it was the combining effects.

Zanubrutinib is an excellent drug but I developed Pleurisy on day 13 & no doctors would treat it with steroids or antibiotics. By day 15 I was back to the ER by Ambulance now with Pleural Effusion, Pneumonia vs Aetelectasis. I left with steroids but no antibiotics & for 2 months I was circling the drain. I had right sided chestpain this 3rd time in 3 months but this 4th CT Scan did not show anything. I later got antibiotics from my boss’s doctor & improved. I was reduced to 1/4 dose, 80mg daily. The most I could tolerate was 1/2 dose, 80mg twice daily (every 12hrs) & could only stay on it for 13 months total. I am in 8.5 month ‘Medication Break’ & I pray to stay here forever… #GODSPEED 🙏🏾

ArtistBlacksmith profile image
ArtistBlacksmith

I had a period of back pain that was different to anything I have ever had, I'd describe it as muscoskeletal. Haematologist recommended Naproxen- over the counter period pain relief. It worked.

Bethsaida profile image
Bethsaida

I began taking Zanubrutinib about the same time you did. I have had a lot of side effects including really bad back and thigh pain which worsened in the last 6 months. My primary doctor thought it could be somehow related to the statin I have been taking for 20 years. I left the statin off for 2 weeks and my severe pain went away although I still had some pain. I have restarted pravastatin and my pain is not nearly as bad as it was but only time will tell if it gets worse. I previously was taking my second dose of zanu with the statin after my evening meal. I restarted the statin taking at bedtime so the 2 were not taken together. Hope you can find a solution.

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