Serious bone pain on imatiniv

Categories:

Side effects

Wed, 01/02/2023 - 1:38pm

Was detected last November 22. On imatiniv since then. Had constipation, nausea, skin peeling, rash, itching. But bone pain is worst of all. Keeping me awake all the time. When should it stop?

David Fitz

In reply to suvankardas

Wed, 01/02/2023 - 3:15pm

Bone pain is awful - I sympathise!

Can you describe the pain? Is it a dull ache, feels like your bones are on fire, or a sharp pain? People often feel different types and some more than others are transient and others are a bit more tricky.

I had terrible bone pain with imatinib - for me it felt like there was pressure inside my bones with sharp pain. Very painful, and when imatinib was discontinued it cleared up.

David.

suvankardas

In reply to David Fitz

Wed, 01/02/2023 - 3:36pm

My pain is somewhat like you. Most of the time I am in bed due to a general muscle pain. But I go to latrine and come back, the bone pain shoots up. It’s pretty sharp pain in leg. How many days did it stay in your case?

David Fitz

In reply to suvankardas

Wed, 01/02/2023 - 5:46pm

I stopped imatinib, as a trial with my doctor. The pain went away after a week, maybe 5 days.

Some people find loratadine helps with the pain. I never tried it, it was too severe for me so changing TKI to dasatinib fixed it. That’s 10 years ago.

David.

suvankardas

In reply to David Fitz

Thu, 02/02/2023 - 1:03am

I didn’t take my medicine yesterday. As per doctor’s suggestion I won’t take it for 2 more days . My doctor in Chennai, India is reluctant to stop imatiniv. Hope the pain goes away.

Thanks for your reply David!

johnw1001

In reply to suvankardas

Thu, 02/02/2023 - 2:30pm

I had this during the first six to twelve months of taking imatinib but then it subsided .As one of my doctors said to me this is normal as imatinib is doing its job by changing the composition of the bone marrow and starting to reduce the concentration of leukaemic cells.At that time some 16 years ago the only alternative was dasatinib which was then not then widely approved and available on the UKs National Health Service and the cost of it then was £37,500 per annum.So I had to stick with Glivec as it then was.You might find that a calcium and/ or a magnesium supplement will help.

If you consider alternatives dasatinib leads to pleural effusions in 20% of patients and nilotinib has that fasting regime for dosing and is hard on the heart.

Dasatinib is net yet off patent and available as a generic I believe .

Best wishes

John