Hi I was diagnosed with Chronic myeloid leukaemia in October and have been on Imatinib a few weeks now side effects haven’t been as bad as I feared but one new one the last couple of weeks is awful awful pain in both legs …like an ache all the time and muscle pain when they move particularly bad on the thighs …anyone experience this and any tips apart from taking paracetamol as advices by my haematologist
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Hi @Lisa1971 sorry I cannot help you, but let’s hope others can.
Have you got a specialist nurse you could talk to, if not perhaps you might try your GP.
Good question, really be kind to yourself and I hope you can feel better soon.
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Hi @Lisa1971,
Welcome to our forum. Sorry to hear about your diagnosis and the side effects you have been experiencing on Imatinib. This sounds really difficult.
Imatinib unfortunately can cause muscle and joint pain and is a known side effect. I have linked in some information on Imatinib from Cancer Research UK here which you may found helpful (Imatinib (Glivec) | Cancer information | Cancer Research UK
I would suggest talking again with your haematology team and letting them know that your symptoms are not improving with paracetamol and causing you a lot of discomfort. They may be able to advise an alternative painkiller that can help.
Let us know how you get on.
Take care
Fiona ( support services nurse)
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Hi Lisa,
I am on this site looking for answers for my husband who has Chronic myeloid leukaemia, who is experiencing the leg pain you are describing. He is on pain meds, has lidocaine patches on the area, tried corticosteroids, muscle relaxants which have not helped. Walking helps decrease the pain a little but obviously one cannot keep moving since he needs to rest and of course is very tired. I am very curious to know if your leg pain is still part of your daily struggle or if you found any relief. Please let me know what has helped. Thank you in advance
Morning @Lisa1971
I am so sorry to hear you’re in such pain. Has it got any better?
While I don’t have Chronic myeloid leukaemia myself, I volunteer here and can tell you that leg and muscle pain is one of the common side effects people discuss.
Beyond paracetamol, here are a few ‘community-tested’ tips you might discuss with your team:
• Aim for 2–3 litres of water a day.
• Heat & Movement: Gentle stretching or a warm bath before bed can help ‘loosen’ the deep ache in the thighs.
• The ‘Tonic Water’ Trick: Some find the small amount of quinine in tonic water helps with the cramps (check with your doctor first).
For specialist advice:
The Blood Cancer UK Nurses are fantastic and can talk you through managing these specific side effects.
• Call: 0808 2080 888
• Email: support@bloodcancer.org.uk
• Link: Blood Cancer UK - CML Information
Please do reach out to your clinical nurse specialist if the pain stays this intense—they can often adjust things to make it more manageable.
Do let us know how you are doing.