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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

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...

Hi there

fatigue hit for me about 1.5 years after starting Nilotinib and came on all of a sudden. All bloods totally normal and in MR4.

Fatigue is very common for us CMLers as the meds can be quite taxing on our bodies. Their is no reason or ryhme to when it hits. I can't go a day without a mid morning nap even after a good night's sleep. I've just learned to adjust but it is massively annoying and a tiredness that's hard to describe, its more than being sleepy but mentally taxed too. It could also be a bout of depression.

I am going to be reducing dose soon as I have been in stable remission for over 4 years so hopefully that'll help.

Alex

Hi,
I had hair loss on Imatinib as well. It got to the point where it was a bit embarrassing having so much hair on my shoulders and front, so I cut my hair short. There were times when it was better and other times worse but having a short cut helped a lot.
As for the fatigue, that hit me at about 1 year. Although I was taking diligent care of myself, the fatigue continued and was pretty debilitating. It was because of the fatigue that I decided to switch to Dasatinib, which I have been on almost a month. For the last couple weeks my energy is MUCH better. Some of my other side effects are a bit worse, but so far for me its worth having my energy back. I will update more as I go along.
Winnie

Hi, hopefully your side effects will lessen and you will feel like you again very soon ,I certainly did .Have you had your thyroid checked ,that can cause thinning hair ,I have an overactive thyroid .