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Joint pain - later on in treatment

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Hi everyone,

I posted not so long ago about my joint pain.

My question was not so much who had joint pain as that’s a common side effect of TKI but how many of you started experiencing joint pain much longer after commencing TKI, I am approaching 5 and a half years on Nilotinib 600mg and I’d say the last 6 months the joint pain is quite noticeable in certain areas, now you could argue it’s my age but being the tender age of 43 it’s unlikely. Lately I wake up aching pretty much everywhere and feel like a 80 year old man at times (no offence to those who are).

Last test result 0.014% nigh on MR4

Just started taking 200mg of Magnesium Citrate to see if that helps at all. Been on those about 2 weeks no noticeable difference as yet. I have noticed though I seem to be sleeping much deeper which is just amazing if it is that. I may increase to 400mg if that’s safe to do so and see if that can help.

Many thanks and hope you’re all doing fine?

Al

Forgive the title of the paper linked below, but red light therapy can possibly help with joint pain. It sounds a bit nuts, but there is quite a lot of evidence behind it. Medics in my family are proponents of it in some circumstances.

https://pubmed.ncbi.nlm.nih.gov/1727843/

All that said, I am the same age as you Alex and my knees are not what they used to be and perhaps this is just a part of getting older.

Maybe it’s just too much exercise and it knackers your knees. As my mum would say “no pain, no pain”.

Hi. I feel joint pain and effects after 5 years of 800 nilotinib and reduced effects to 600 mg, but not much to change. Is there anything that can help you? Or did you give in on your own? This pain has a very bad effect on me.

My left elbow seems to feel like what you describe. I am 45 years old and am just past 8 years. My left hip also aches at times in the Winter. I have started skipping a dose or half dose here and there to minimize the toxicity as much as possible. My last three results since starting to do this are stable or even gone down. I don't think I will take 600mg in a single day ever again. Please post if you find anything to ease the pain, or the source of it.

Hi Alex, I’m just noticing that this is a post from 2023, but I can’t help but commenting on joint pain because it’s my biggest complaint since I started on TKIs. I started in 2021 on Sprycel. The joint pain and leg pain was horrific about six months , I also had swelling going on, and I bumped my shin and got a hematoma. Never had anything like that before it kept getting worse my right knee and swelled, and I was taken off the Sprycel. After that, I was on Bosutinib for only one month as my liver enzymes went way up. After that, I was put on Tasigna for about a year all the while my knee kept getting worse and I was diagnosed with severe arthritis in both knees. It could be my age, 74 but I have always been very active basically a gym rat but not to the point of overdoing it. I do believe the TKIs accelerated the osteoarthritis that I now live with. I’ve read studies that it can be a side effect of the medication. I am now on Scemblix with way less side effects than all the other meds . keep an eye on your joints. Have them x-rayed periodically so you know what’s going on. Hope you are doing well.

Bone pain got progressively worse while I was on imatinib. I was on that drug for 11 years. After three years on Nilotinib, unfortunately, I feel the bone pain picking up. I can only hope it doesn’t get as bad as imatinib. Exercise and diet are how I deal with it. So far some of the things I learned with Imatinib to keep the pain at bay is working.

Joe