I started Zanubrutinib at the end of July in 2023. For the last few months, I have experienced low back pain and pain in my upper thighs. This is much worse at night.
I stopped for 3 days before and after for a colonoscopy. I am on my 5th day and for the first time in several months I had very little pain last night. Today I am not feeling any pain in either area.
I will be restarting Zanubrutinib soon. I'm curious if any others have had this issue.
yes, on zanu, have back/rib pain sporadically. It’s annoying, but I’ve been able to mitigate it mostly with stretching and weight training. I also have some mild scoliosis, I can’t be sure that’s not contributing.
If I don’t go through my stretches or sit with poor posture it can take a few days to calm down. Keep going with your journey!
Thanks. The Zanubrutinib seems to be working well based on my recent tests. I just finished physical therapy on my back. It didn’t seem to help but I am continuing the stretching and exercises. My back is fused with 6 screws and 2 plates so I am familiar with back pain. This seems be more in the muscles and then migrating to the front of my thighs. Pain medication does help but I’m reluctant to use it.
Yes my legs hurt so much I didn’t know if I’d make it to my car after my work shift one day. Thighs especially. I stopped Ibrutinib and Acalabrutinib and even Zanubrutinib because it was just too difficult to work on any of them. My CLL doc’s NP said “If there’s a side effect you’d had it”. Hope yours improves!
Thanks for the reply. Sounds exactly like my issue. I have 2 more days off the medication. I will see how it goes and contact my CLL specialist for advice.
I know it exactly from Acalabrutinib, espescially in my thighs and upper arms like stiff muscles. I changed from capsules to pills, might be a little bit better, but that can also be imagination.
I’m on Acalabrutinib and went through a period with muscle and joint pain at night. I felt like my whole body was stiffening up. I still have the muscle and joint pain but its milder. I do stretches before bed and have taken magnesium which helped a bit. My specialists nurse said it was probably arthritis. I felt a bit discounted. My local oncologist validated me and said it was probably the medication. I also use warm heating pads to help manage any discomfort. Take care. I hope you find a way to manage things!🦋
Thank you for your input. I exercise and stretch in the morning. I will add stretching before bed and talk to my doctor about the magnesium. The medication is working very well on the CLL so I’m determined to find a way to get through this.
My oncologist also recommended Claritin. He told me they sometimes give that to patients going through chemo that have muscle, joint, and bone pain. I did take that for awhile along with the magnesium. Stretching for 5 minutes before bed has helped !
By the way, when I was in my 40’s I took a bike safety class and got my license to ride. I rode for a few years in all kinds of weather! I then had an opportunity to either buy a house or a Harley. I bought the house!😂
Hope the stretching helps!!!🏍️
Thanks for the information. I’m in my 70s and I have a house and 2 motorcycles, a Harley and a BMW.😂
Years ago as kids we went to visit my uncle and snuck into the neighbors barn. The neighbor had a couple of Indian motorcycles in his barn. I too am in my 70’s. Young at heart. I no longer ride but continue to admire some of the bikes I see on the road. Every spring I do get the desire to ride again. My husband passed away on his bike in the late 90’s. I stopped riding after that. I still keep my motorcycle license. It’s my badge of courage for learning how to ride!😊
Good for you. I never started riding until I was 65. Been riding for almost 10 years and love it.
It's good to do something that you are passionate about! It can help distract from having a chronic illness and dealing with symptoms sometimes. My first passion has always been photography. I have an art background and have dabbled in different creative art forms. I have had a career where I have put others first. I am getting closer to carving out more "me" time for creativity. We are lucky to live in these times when we have choices for treatment with CLL and to be able to go on with our lives. Take care. Happy riding!
Yes. I have stiffness all over my body, and pain in my lower back, and feet. The lower back pain is only when I'm in bed. The pain and stiffness disappears as I move around, but it comes back again, when I try to get up after sitting.
I am 72 male. I started BRUKINSA 8/23/23. I have a lot of knee pain. But I am able to walk 4 miles daily and do Yoga once a week. You just have to power through the stiffness. The drug works great so I can endure a little discomfort. Hang in there .
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