Hello everyone! I am almost 5 years on Imatinib 400mg (been hovering between 0,003 and few undetectables for the last maybe 3,5/4 years) and I am soon to be 39 y.o. A few month ago I started to have pain in my left knee in a certain spot (not whole knee, just inner or "medial" side as I know it now). At the beginning i thought it's maybe a little trauma from too much walking during family vacation in Italy, but it consistently got worse even with physical therapy, some swelling also showed up. A month ago i started to have exactly the same pain in my right knee and there is also some redness showing up in the mornings which goes away during the day. I talked to my haematologist and she ordered an MRI scan for my "worst" (i.e. left) knee and mentioned "to do it without any urgency". While I am waiting for that I did go to ultrasound for knees which showed that i have meniscal cysts in both knees!!! One is much bigger than the other. So I do think this is linked to Imatinib from what I have read. I do manage pain with ice packages, rest, Voltaren gel, Magnesium oil and knee elastic bands, however, I am very worried. I didn't have this side effect before. I did have some stiffness in joints and bones in the mornings but nothing like this. I will go to traumatologist - orthopedist after MRI scan but it will most certainly lead back to Imatinib. My haematologist mentioned that if MRI finds some serious issues it might likely lead to switching meds. What can I do for now? I am drinking fresh juices with ginger and curcumin for inflammation. I also take Vitamin D and magnesium. Do you take glucosamine? I have found there is some contraindication with Imatinib. Is there anyone with similar experience?
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Knee pain after 5 years on Imatinib
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Hi Santa,
Knee pain can set in at any age,osteoarthritis could be a cause for your pain, I have just started getting pains in the last 6/7 months but I’ve been on tki medication for the last 10 years, I’m not disagreeing with your opinion, but believe other conditions will come along in life and don’t always associate are existing condition (cml) to be the reason for them.
Peter.
Hello Santa, your journey sounds very similar to mine though I am quite a bit older I am 74. I was always active a gym rat but nothing extreme. I was diagnosed in 2021 and put on Dasatinib.Leg pain started about four months into it. During the Covid lockdown I couldn’t go to the gym so I started hiking up the hills behind my house at that point I was a few months into the medication and my left knee started twinging over the next few months it kept getting worse I stopped the hiking figuring that that’s what it was. My knee kept getting worse started swelling, had x-rays MRIs ultrasounds you name it I had it . Fast forward to now and 4 TKIs. later, both knees have morphed into severe arthritis, torn menisci, bakers cysts Behind both knees and CPPD which is pseudo gout, calcium crystals in the knees. I am now on a Asciminib , it has been the best TKI for me side effect wise. But the knee and leg pain persist it’s almost impossible to tell which is from the medication and what’s from the arthritis, I think I’ve surrendered to never knowing for sure what’s what. I take Tylenol arthritis and Celebrex. I’ve tried other pain medication but they just make me feel weird tramadol was the worst. My heating pad is my best friend. I wish you luck on your journey😻