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Side effect - Pain

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Hi,

I have been on imatinib for 2 years now. And i started to have sharp pain for last 2 weeks on tendons and ligaments where there are strain while walking / running or playing. Now the pain is so server that i am not able to walk with sollen ankle. Cramps at night is also common.
Can any one tell me if this is related to the tki and what can done to releive the pain and back to normal .

Please share your experience and suggestions.

Andy.

Hi Andy, sorry to hear this and it does sound a bit unusual. With imatinib bone and joint pain is a common side effect when you start the medication, but for most people it gets much easier in the first few months. Cramp is a common side effect of imatinib and I only lost it (after 10+ years) when I went on to half dose (200mg) before my current try for TFR. If your joint pain and swelling has only started 2 years into treatment with imainib my experience suggests that it is likely not to be TKI related, and may be something else. About 5 year before diagnosis I had similar symptoms which turned out to be a post viral immune system issue.

Hi Andy,

You could try supplementing with magnesium (muscle cramps etc) to see if that helps. Mag Citrate is one of the more bio-available forms and you can also try a topical magnesium oil to see if that helps with acute muscle cramps- also direct heat packs (hot water bottle or those microwavable ones) can help when the pain is very severe.

Since taking higher doses of Vit D3 (w/K2 which guards against loss of calcium) I have found that my joint problems have virtually completely resolved. 

Swollen ankles may point to your kidneys struggling to work efficiantly. Try drinking more (lots) of plain water every day which will help your kidneys.... also try a 1/2 tsp of sodium bicarbinate.

Hopefully this and lots of hamstring stretches will help.

Sandy

Hi Andy,

As a a long term CML patient of over 13 years and always having  been on the branded Glivec I have lots of experience of musculoskeletal issues as side effects and very much emerging as long term issues.Looking at the medical literature on long term adverse effects of IM treatment authors usually list the following as being short term side effects of less than two years and with rates of over 10% of patients experiencing them-

odema(swelling), muscle cramps,muculoskeletal pain,joint pain are reported as common in up to 10% of patients taking IM.

One article lists a longer term  effect  myositis (inflammation of the muscles) but affecting  less than 1% of patients taking IM.

I quote "IM is associated with mild to to moderate toxicity ,mostly reversible by dose reduction or discontinuation of the drug.Most adverse effects occur within 2 years of starting therapy;however the late effects many being unique are now being recognised". My substantial muscular issues emerged after about four years of therapy and are still with me; symptoms present themselves as extremely tight calf muscles and often tendons and pain in the muscles especially the shins.I always have a CK (creatine kinase ) test with my bloods and usually this is quite elevated above the normal range such as 5 times higher than normal;a neurologist has tested the CK iso enzymes and fortunately these do not impact on the brain or heart.

I suggest that you have some additional bloods for the CK and also calcium and magnesium -in the meantime why not try some spray on topical magnesium.

An afterthought is whether you are on other medication that might interact with IM -even a statin on its own  might cause muscular issues for instance..My approach is to keep hydrated trying to take at least two litres of water a day,physio and lots of stretching and avoiding inflammatory foods;tonic water helps some sufferers apparently but long term use of quinine sulphate as a prescribed drug might have implications for the heart. NSAID S such as ibuprofen in tablet or spray form will affect the uptake of imatinib and should be avoided-research at University of Adelaide refers.

In conclusion and from my personal experience, and until proven otherwise, I would assume that  your symptoms as being most likely associated with imatinib treatment

With best wishes

John