Went off Tasigna after being on it years: Anyone else?

Posted by cubeth77 @cubeth77, Feb 5 4:50pm

Hi - has anyone been taken cold turkey after being on Tasigna for more than decade. Has anybody else been been taken off of it? I have joint pain and muscle pain. I have extreme nerve pain ? Been off of it 4 months.

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Lori, Volunteer Mentor | @loribmt | Feb 6 9:05am

Hi @cubeth77 While you’re waiting for other members to join into the conversation I want to welcome you to Mayo Connect.
I’m sure if you’ve been on Tasigna for over 10 years, you were excited with the news that your CML is under control and you could stop taking the medication. That’s fantastic. But it sounds like it came with an unexpected downside!
I did a little sleuthing this morning to see if there was a taper recommended for Tasigna and there is not. So being able to simply stop was apparently ok to do. However, on further snooping I found this message near the bottom of the Novartis Prescription information sheet:

“Side effects in adult patients attempting treatment free remission:
If you and your healthcare provider decide that you can stop taking Tasigna and try treatment free remission (TFR), you may have more muscle and bone (musculoskeletal) symptoms than before you stopped treatment. Symptoms may include:
* muscle pain
* arm and leg pain
* bone pain
* spine pain
* joint pain
This is the entire pamphlet link: https://www.novartis.com/us-en/sites/novartis_us/files/tasigna.pdf

From what I’m reading, the pain you’re feeling may be linked to being off the medication. But no where in the information did it give suggestions for what to do about it.
I’m so sorry you’re going through this discomfort. Have you talked to your oncologist about this new turn of events?

ortina2023 | @ortina2023 | Feb 7 9:17am

This is interesting. In November of this year I will be eligible to opt for TFR if I choose. I will have been on 300 mg daily of Tasigna at that point. My cancer is undetectable at present and has been for quite a while now.
I’m sorry to hear of this complication for you. Is there anything to be done now for your joint and nerve pain?

cubeth77 | @cubeth77 | Feb 9 1:47pm

I have pain in every joint in my body and I just want my body back.
My numbers dropped and had 2 undetected in last 5 check-ups. I've been off the Tasigna almost 4 months now...
My Oncologist has been on vacation but back this week and I am scheduled for an appointment with him for this week and there will have to be a change due to my pain and I have CKD so have been told not to take Tylenol. I may have him scribe Gabapentin or something stronger

cubeth77 | @cubeth77 | Feb 9 3:51pm

In reply to @loribmt "Hi @cubeth77 While you’re waiting for other members to join into the conversation I want to..." + (show)

@loribmt Thank you very much for sharing this information with me. It helps tremendously.

Lori, Volunteer Mentor | @loribmt | Feb 10 9:26am

In reply to @cubeth77 "I have pain in every joint in my body and I just want my body back...." + (show)

Hi @cubeth77 From my understanding, Tylenol (acetaminophen) is generally safe for individuals with chronic kidney disease (CKD). For a while I had issues with my kidney as a side effect from a medical procedure. I couldn’t take ibuprofen (Advil) but I could take Tylenol. This will be a good question to ask your oncologist this week, along with questions about the continued pain after discontinuing the Tasigna.
Good luck this week. It can be helpful to take along a little notepad or make notes on your phone. It’s easy to get sidetracked in an appointment with limited time! ☺️

Colleen Young, Connect Director | @colleenyoung | Feb 19 7:19pm

In reply to @cubeth77 "I have pain in every joint in my body and I just want my body back...." + (show)

@cubeth77, how did your appointment with the oncologist go? Any update?

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