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Suddenly hit with imatinib side effects (fatigue, hair loss) after 4-5 months

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I thought I'd got off lightly with imatinib so far - it hasn't been completely uneventful, but I didn't get any of the most common side effects apart from a bit of painful gut cramping at the beginning.

Now at 5 months, I'm suddenly hit with a wall of fatigue that feels as bad as it did when I was first diagnosed with CML, when my main symptom was unreal exhaustion. I felt that the treatment/normalisation of white cell count had actually improved my energy levels, so I'm not sure if this is imatinib finally doing a number on me or whether it's something else. Did anyone else who's been fatigued on a TKI have a delay before it kicked in?

I've also got substantially more hair coming out than prior to imatinib - I think that's actually been going on for several months, but I just ignored it until recently when the hairballs started building up on my clothes. It doesn't come out in clumps, but in the shower there's maybe three-four times more hair coming out than normal and it's all over everything, I have to constantly brush it off. Luckily I have thick hair, but at this rate I'm not sure how long it'll be before it starts showing. I understood that only about 4% of people on imatinib experienced hair loss so again, I'm not sure if this is because of the medication or something else. It would certainly be a coincidence if it was something else...!

I didn't have a sudden fatigue issue on imatinib after starting, and don't recall that being reported in this way on the forum. Fatigue something that happened intensely for a day or two, and then not for a while. My hair certainly got thinner on 400mg, but improved when I first reduced to 200mg and then stopped for my (ultimately unsuccessful) TFR attempt. Now back to 200mg and the hair is OK - I've got more than most blokes in their later 60's!

Oh dear, sounds like imatinib fatigue might be more something that creeps up then. I was hoping it might be something hormonal etc but that's probably wishful thinking.

Glad your hair came back!

Hi, i think im with you to a certain extent on this. I was diagnosed and have been on Imatinib for 3 months now. I had my third telephone appointment with my consultant today, and in simple terms the numbers are going the right way, but i would definitely say that i have had similar bouts of fatigue to when i thought id got long covid before everything hit the fan! In the last two weeks, just like you, ive noticed i am losing hair, its in my brush, its in the shower and across my face sometimes, a bit of a concern, but i think we have just got to accept it as part and parcel of our treatment, hopefully it will resolve sometime., other things have with me , so i live in hope. Youre 2 months ahead of me, it would be interesting to keep in touch as relative newcomers, i wish you well, literally.

Sorry to hear that you're having these side-effects too. I'm just so exhausted and it came on pretty suddenly, after a few months of feeling pretty good! Not a great development, I just hope it comes and goes, rather than staying all the time since we have to be on this treatment for such a long time. Which is the part that worries me about the hair loss as well. Yes, let's keep each other posted - wishing you well too!

Hi there,

I can relate to the sudden fatigue and hair thinning. I am 1 year diagnosed and I experienced this around 6 months into my treatment, im still learning but for me it comes and goes and have noticed my hair is better atm than it was a few months ago.

I am on 400mg of Imatinib for reference.

Wishing you well and hope your side effects improve.

Sarah

Hi there,

I can relate to the sudden fatigue and hair thinning. I am 1 year diagnosed and I experienced this around 6 months into my treatment, im still learning but for me it comes and goes and have noticed my hair is better atm than it was a few months ago.

I am on 400mg of Imatinib for reference.

Wishing you well and hope your side effects improve.

Sarah

Hi there,

I can relate to the sudden fatigue and hair thinning. I am 1 year diagnosed and I experienced this around 6 months into my treatment, im still learning but for me it comes and goes and have noticed my hair is better atm than it was a few months ago.

I am on 400mg of Imatinib for reference.

Wishing you well and hope your side effects improve.

Sarah

Thanks Sarah. It's good that it comes and goes, at least! I don't think I can deal with being this tired constantly, so I'm hoping for the same. And with the hair as well, haha. I noticed that slightly less came out in the shower this time so fingers crossed, for both of us...