Tasigna side effect? How do I stop an itchy scalp and rash?

Oh, Judy, that’s wonderful that you’re feeling so much better. The toxicity from meds can be so overwhelming and that ‘one size fits all’ dosage doesn’t really fit all! I’m so glad your doctor was amenable to reducing your meds, even though you had to be your own advocate. Thank heavens! Look at you now, you’re like a new woman. 😍

The fact that your numbers are on a downward trend is really encouraging! Those were some impressive drops in 3 month intervals so keep up the good work and thank you for giving an update. You’ll never fully know the number of people you may have helped by sharing your experiences here.

We have a new member, @ ericloomis ( https://connect.mayoclinic.org/comment/765478/ )who is newly diagnosed with CML and is experiencing a great deal of body pain. Is this something that you’re dealing with as well?

Hi Lori,

No, I've never experienced body pain as a side effect of either of the meds. I have almost constant feet and leg pain due to being hit by a drunk driver 20 years ago - but I've learned to live with that without pain meds. I know my limits - took years and I can't walk very far or be on my feet very long, but it is what it is.

I'm feeling wonderful on the half dose of Tasigna. I have energy and a clear mind, my skin has cleared up and I hardly notice any itchy scalp. I'm eagerly waiting for my January appointment to see what the blood test says after being on the 1/2 dose since Labor Day.

My October 20 appointment

Hi Lori,
Even on 1/2 dose Tasigna my numbers keep going down. Yesterday's report I went from .003 to .002. I'm headed to those all zeros!

I frequently was getting tiny red bumps open my sides and chest, and a rash with slight swelling on my face with Tasigna. Very uncomfortable and itchy. Antihistamines dampen it a little but not well. So I went from 600mg Tasigna a day down to 450 (300 in a.m. and 150 in p.m.) and the rash disappeared and MMR even went down! So there is some evidence adjusting the dose might be OK in collaboration with your hematologist. As long as the numbers stay down who knows? This has been a 13 year journey for me and I know its an ongoing battle!

I'm down to 150 am and 150 pm and my skin is almost back to normal - still a little itchy scalp but I can deal with that. I lost over half my hair on Sprycel - was glad to get off that. My hair is now growing back and best of all my numbers are also still going down since dropping the Tasigna to 1/5. I'm now at 0.0032! You have been courageous for 13 years - that's awesome! I was diagnosed January 2022 - age 82. I feel and finally look good! Let's keep fighting the good fight!

Yikes - my comment should have been that my Tasigna was cut to 1/2 - not 1/5. My latest number is 0.0004! However my ferritin is really high. Going to hematologist Tues 28th to get some answers.