6 replies to this topic

[tiredblood]

No one should have to feel like this. This is debilitating.

I wanted to ask if there is anyone here that has discontinued their TKI and experienced the TKI withdrawal syndrome and had to later restart the TKI at a reduced dose, then on the reduced dose, experienced the same TKI withdrawal-like/PMR-like pain?

I gave one rheumatologist a shot at helping me, taking an NSAID and muscle relaxer x 1 year, doing PT now, with no relief. He told me I did not have PMR because I was "too young." That rheumatologist since retired and my hem/Onc wants me to see one at the same research hospital where I see the hem/Onc for evaluation of inflammation. I see him on the 8th. The muscle spasms for the most part wax and wane, varying in severity and I believe the Gleevec is responsible for this.

[hannibellemo]

tiredblood, Although it isn't typical for a young person to have PMR it isn't unheard of either.

 

https://patient.info...ymptoms--562373

 

You may just have to find a rheumatologist who is willing to see you. Did you ever have an ESR blood test done to see what your inflammation level is?

[jmoorhou]

I had this too, and it went away when I started swimming again.

[AllTheseYears]

tired blood:  I started on Gleevec 400 mg when I was diagnosed with CML in 2001 (no other TKI available then). Undetectable within a few months. So, of course, a few years ago I thought I was an ideal candidate for cessation under my onc's supervisvion.  The withdrawal was terrible, with joint and muscle pain and fatigue nearly unbearable for about four months.  Then I had two months of feeling wonderful. Oh happy day!  But, unfortunately, my CML came roaring back and I returned to Gleevec 400 mg.  After six months of that and again posting undetectable, I went on 200 mg and have been undetectable for a year and a half at 200 mg. I did not experience any withdrawal symptoms going to the half dose. However, as I have experienced all during my 17 years on Gleevec, I still have painful muscle spasms.  I have NO doubt the muscle cramps result from Gleevec and are listed as one of the common side effects of the drug.  

 

Here's what I do regarding the muscle problem:  Get plenty of rest, walk (this really helps), take magnesium daily, take Ibuprofin daily and take baths in hot water.  If I don't do these things religiously, I suffer. This regimen also helps my arthritis/ inflammation (both part of the immune problems that I had before CML and might have indicated I was a CML candidate).  Maybe you can try my regimen before a doctor starts meddling and possibly makes things worse for you.  Been there. I prefer my solution.  Good luck! 

[tiredblood]

Yes, Elevated ESR and CRP. See the new rheumatologist Monday and I think I should have a more accurate diagnosis. New symptom, maybe Myositis, but will see what develops.

[tiredblood]

tired blood: I started on Gleevec 400 mg when I was diagnosed with CML in 2001 (no other TKI available then). Undetectable within a few months. So, of course, a few years ago I thought I was an ideal candidate for cessation under my onc's supervisvion. The withdrawal was terrible, with joint and muscle pain and fatigue nearly unbearable for about four months. Then I had two months of feeling wonderful. Oh happy day! But, unfortunately, my CML came roaring back and I returned to Gleevec 400 mg. After six months of that and again posting undetectable, I went on 200 mg and have been undetectable for a year and a half at 200 mg. I did not experience any withdrawal symptoms going to the half dose. However, as I have experienced all during my 17 years on Gleevec, I still have painful muscle spasms. I have NO doubt the muscle cramps result from Gleevec and are listed as one of the common side effects of the drug.

Here's what I do regarding the muscle problem: Get plenty of rest, walk (this really helps), take magnesium daily, take Ibuprofin daily and take baths in hot water. If I don't do these things religiously, I suffer. This regimen also helps my arthritis/ inflammation (both part of the immune problems that I had before CML and might have indicated I was a CML candidate). Maybe you can try my regimen before a doctor starts meddling and possibly makes things worse for you. Been there. I prefer my solution. Good luck!

[tiredblood]

I've pretty much done that regimen from 12/16-12/17, just a different NSAID. I'm starting to see that the hem/Onc has been following a logical, systematic approach, although the process has been slower than I'd like. I think he's on the right track.