Connect with others who understand.

Sign up Log in
Resources
About MyLeukemiaTeam
Powered By
Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone On IMATINIB Experience Adverse Effects That Continue After Stopping It?

A MyLeukemiaTeam Member asked a question 💭
Toronto, Ontario, Canada

I suffered leg pain and painful leg and face swelling. The swelling stopped after discontinuing IMATINIB, but the leg pain persists 2 weeks after.

February 25, 2023
•
View reactions
A MyLeukemiaTeam Member

Thank you, Mike. I wish for you that your BCR ABL test will yield the results you hope for. I find it admirable that you could tolerate Imatinib for so long: I had to quit after only 1 month, even after the dose was reduced to 200mg/day. In my case, the nerve damage left by a previous chemotherapy magnified the leg pain induced by Imatinib to intolerable levels. Now I'm on Bosutinib, hoping it'll work better. All the best to you and family.

August 8, 2023
A MyLeukemiaTeam Member

Well the first one I had landed me in hospital. First time in an ambulance. So embarrassed 😳. Dr. Started me on muscle relaxers and I take them twice a day. I still have muscle spasms in my hands, feet, and legs but nothing that's going to cause me to get into an ambulance. Hugs to you

February 28, 2023
A MyLeukemiaTeam Member

Thank you, Robin. Wow, 6+ yrs on Imatinib! May I ask how you cope with your muscle spasms? Mine were a 9 on the 0-10 pain scale, which is why I stopped. (On top of that, half my face swelled so that I couldn't chew food.) All the best, Mario B.

February 26, 2023
A MyLeukemiaTeam Member

I had a very bad experience on Gleevac for the 11 months I was taking it at 400mg/day. I finally called my hematologist and told him I couldn't take it anymore and he said to take a 3 week vacation from Gleevac and start again at 200mg/day. Most of the really bad side effects were gone within a few days. After about a week I started feeling stronger, healthier and not at all sick. I would very much like to stop because even at half dose I still get significantly ill for about 2 hours after taking. But it is significantly better than 400 mg. Going to take my BCR ABL test in September and i will see how my molecular change is going.

August 7, 2023
A MyLeukemiaTeam Member

I forgot to mention ....Dr put me on gabipentin for awhile to help with the cramping and I think it helped just a little, but not enough so I quit taking the imatinib and the leg pain stopped almost right away.

March 19, 2023

Related content

View All

How Soon After Starting Imatinib Did Your Side Effects Start?

A MyLeukemiaTeam Member asked a question 💭
Charlotte, NC

Been Recently Diagnosed With CML In The Cronic Phase. Im Currently Taking Sprycel. It Sounds Like The Other Medication Has Better Survival

A MyLeukemiaTeam Member asked a question 💭
Hollywood, MD

Can CML Be Cured? Completely?

A MyLeukemiaTeam Member asked a question 💭
Auckland, NZ
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in