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painful lower leg

Hello all again been on imatinib for three years now and still sometimes get pain in the lower leg with some soft tissue swelling that is sometimes very  sore when touched giving a hot burning sensation does anybody else experience this problem thanks for reading and please stay safe.

Vonnie

vonnie, depending on your CML history begin reducing your Imatinib dosage if at all possible.  I was on Gleevec 400mg for almost five years and had similar "hot" leg problems and ended up with Peripheral Artery Disease (reduced circulation) in my legs.  It's a permanent debilitating condition.  I attribute it to too much Gleevec for too long.  I'm a strong advocate for reducing TKI dosage as soon as possible.  TKIs are toxic medications and the less we take over the longterm the better off we are likely to be.

I have had a pain in the right ball of my foot fro about 3 weeks. It’s defo not something I have experienced before and it has become painful to walk on it. I have no doubt it’s TKI related. What can we do but grim and bare it.

Hope your pain subsides as I am sure mine will with time.

Alex

Thanks very much for all your replies so kind
Vonnie

Hi,

There are some musculo skeletal effects from the long term use of tki s and especially imatinib.After over 14 years on imatinib I have peripheral neuropathy and am sure that it is due long term use of a moderately toxic drug.Looking up the possible treatments that one can have basically not very much except keep hydrated, minimise alcohol consumption,do mild exercise and strengthening /walking and also take a Vit B complex and make sure your calcium levels are up to scratch.

Regards

John