Side effects of Nilotinib (Tasigna) muscle pain and injury

Posted by garthc @garthc, Jul 8 4:07pm

Diagnosed with CML in 2017 . I've been taking Nilotinib for around 5 years now, I was previously on Imatinib, and I find that I'm regularly injuring muscles and tendons when I train. I also suffer from major lactate buildup, especially in the calfs and legs. Has anyone else experienced the same, and if so, does anyone have any suggestions as to how they may have relieved the side effect?

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Hi garthc, I was diagnosed with Ph+CML in Jan. 2024, confirmed through bone marrow biopsy and aspiration. The first clue to this diagnosis was a very high platelet count (over 2000) and in Nov. 2023 the hematologist put me on Hydroxyurea 500 2x day to lower the platelets. After the bone marrow biopsy confirmed CML, I joined a clinical trial and began taking Tasigna, 2 150 mg capsules twice a day. Just recently, about one month ago, after taking Tasigna daily for the last six months, I developed tendonitis in my right arm. At first I attributed the very painful tendonitis to overuse since I was in the process of moving and using that arm more than usual. However, I noticed that the possible side effects included muscle pain and swelling and wondered if that was the cause, or at least a contributor to the condition. I will see my oncologist next week and will inquire. What did your doctor say? For me, it's hard to discern if the tendonitis is a simple overuse injury (I'm almost 77 and as we age tendons lose some elasticity and are more easily injured, so I've read) or if the medication, Tasigna, is the culprit. I saw a local doctor about my arm pain and he said tendonitis takes a long time to heal, that about the only relief is to rest my arm (difficult to achieve when it's your dominant side) and take Advil or Tylenol pain relievers, which help somewhat. I sympathize. It's a very painful condition.

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@ortina2023

Hi garthc, I was diagnosed with Ph+CML in Jan. 2024, confirmed through bone marrow biopsy and aspiration. The first clue to this diagnosis was a very high platelet count (over 2000) and in Nov. 2023 the hematologist put me on Hydroxyurea 500 2x day to lower the platelets. After the bone marrow biopsy confirmed CML, I joined a clinical trial and began taking Tasigna, 2 150 mg capsules twice a day. Just recently, about one month ago, after taking Tasigna daily for the last six months, I developed tendonitis in my right arm. At first I attributed the very painful tendonitis to overuse since I was in the process of moving and using that arm more than usual. However, I noticed that the possible side effects included muscle pain and swelling and wondered if that was the cause, or at least a contributor to the condition. I will see my oncologist next week and will inquire. What did your doctor say? For me, it's hard to discern if the tendonitis is a simple overuse injury (I'm almost 77 and as we age tendons lose some elasticity and are more easily injured, so I've read) or if the medication, Tasigna, is the culprit. I saw a local doctor about my arm pain and he said tendonitis takes a long time to heal, that about the only relief is to rest my arm (difficult to achieve when it's your dominant side) and take Advil or Tylenol pain relievers, which help somewhat. I sympathize. It's a very painful condition.

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Hi
Thanks for your feedback.
The reason why I'm enquiring here is that my doctor says there's no precedent she knows of with the issues I'm having as "people that have cml don't tend to keep training like you do, so there's no way of knowing,"
While I know the tasigna has muscle and joint pain side effects according to Novartis, (this is also an issue I have) there is no mention in side effects or any other place I can find, about high lactate (the muscle burn) when training

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Good morning Garthc,☕️🌞
I understand completely I do take tasigna 200 mg 2x daily. I’m always in the hospital for pain and also build up in my legs and calf. Mostly on the right side. My doctors and I have a recent suspicion of what caused it. My family history doesn’t have any forms of cancer. Ty again 👍

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