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Extreme bone and joint pain

I've been on Tasigna for over 5 years. I was down to 200mg per WEEK for about 3 years. During that time the pain was somewhat controlled with hydrocodone. I'm now on 200mg per day to maintain a pcr of .009. The pain is extremely bad lately. To the point where pain meds barely knock the edge off. I'm considered by anyone whom knows me to have a very high pain tolerance and a strong drive to do what I want to enjoy as much as possible. It's getting to the point now that I have trouble just getting up from a seated position, walking, staying in any one position for very long, and even getting comfortable when I lye down. It's taking a huge mental toll on me and depression is showing its ugly face. Any advice on any proven pain reduction?

Tazdad - Hey, welcome back - wondered where you went and how you were doing.  Kat here.  I'm real sorry about your pain - sounds unbearable.  Is there any possibility of trying a different TKI and seeing if this is Tasigna-related?  I have forgotten whether you have tried the others.

Ouch. That sounds terrible, and you shouldn't have to suffer with that.

Imatinib caused me sever bone and nerve pain. We proved that by stopping taking it for a week, and the pain went away. My doctor felt that I would likely get the same problem with nilotinib, so moved me to dasatinib and the pains never returned.

Have you explored proving it's the nilotinib that is causing the issue, and considering a TKI switch?

David.

Hello Kat, I come and go with the forums. Sometimes I just crawl up in a shell and stay quite. I started on Sprycel for my first year. I think it may be time try another tki and see of it helps

I do think it's time for a change. Thanks for the input of your experience

I don’t know how long you’ve been at 0.009 but if held for 2 years I believe you can try stopping treatment altogether.

I may have gotten that wrong though. I am a newbie cmler also on Nilotinib nice to know I may have that to look forward to if I am lucky enough to be around in 5 years which of course I hope I am.

All the best with finding a solution.

Alex

Tazdad, what happened to your PCR results to make you and your consultant decide to increase back to 200mg/day, from 200mg/week. The fact that you have had to do that makes any dose reduction plan seem unlikely. Are you taking any other meds which might be inter-acting with your Tasigna?

Hope you can find a resolution.

I was actually undetectable for well over 4 years. Maybe even 5. Then numbers went to .009 for about 6 months. I jumped to .024 and then increased to 200mg per day. I wanted to stop tkinda all together but this has pretty much proved that to not be an option.

I'm know little about Tasigna I'm afraid, but given that you are still below 0,1% on PCR, and therefore in MMR, I'm surprised the dose has been put up that much. Perhaps someone who has a better understanding of Tasigna than I do can make a suggestion?