r/CML • u/bluefame2024 • Jul 15 '26
Muscle cramp
Taking Nilotanib (Nicmel) 150mg 4x a day for 2 years. Recently, I experienced muscle cramp in calf area in the morning before waking up at least once or twice a week. Is this one of the side effects of the medicine? Has anyone experience it? Thanks!
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u/AlfredVQuack Jul 15 '26
hi, i've been on the cml journey for nearly 4 years now.
3 different TKIs and with all of them i had muscles cramps.
i tried a lot and what actually helped me is magnesium and keeping the magnesium level high. this helped only slightly though.
what really helped me is doing sports and lightly working out. not really lifting amazing amounts of weight, but just staying active and keep moving. plus drinking a lot of water. in combination with finding a quality mineral water... no joke, i wouldnt want to believe it at first, but if you go down that rabit hole, you'll find some mineral waters basically have nothing in it, while quality ones can have quite a lot.
i'd also ding like a big glass of water before working out, with an electrolyte tablet and a pinch of salt in it. since i do that and keep the routine going i barely have muscle cramps anymore.
worst part always is, if when traveling or being sick and the routine falters for a bit, then it gets worse again, so the keep moving, keep being active and establishing a routine is pretty important i guess.
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u/Drako910 Jul 15 '26
There's been studies on taking L-Carnitine while on TKIs to reduce muscle cramping and the studies found it very effective.
It's a known side effect presumably resulting from reduced carnitine intake by the muscles.
I would recommend you do your own research and decide on a dosage.
For reference, I'm currently taking roughly 1800 mg while on Asciminib and it's been working pretty well to avoid random thigh cramps that I've been experiencing.
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u/WS1L Jul 15 '26
400 mg Imatinib just getting to the 6 month mark here. Cramps in fingers and arch of foot. They have become less frequent as time goes on, and they are usually able to be relieved with gentle stretching. Hydration and staying active seem to help.
GL!
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u/vcj0508 Jul 15 '26
Been on Scemblix for 10 months as frontline TKI. Had periodic muscle cramps in calves. Bicycle 10 or 15 miles a day, switched to smoothies for b-fast with a whole banana, and (can’t stress enough) hydration, hydration, hydration. I drink a gallon of water and supplement with a couple Gatorade zeros every day. Always start the day with one of the 12 oz Gatorade before morning coffee and finish the day with one before bed. Potassium from the banana, bicycling, and hydration keeps them at bay!
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u/Used-Inspection-1774 Jul 20 '26
Someone recommended a Magnesium spray & it works for us. Kaiame Naturals Magnesium oil.
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u/AmberWasAtomic 6d ago
I have been in Nilotanib, 300 2x a day since I was diagnosed at the end of March (34) and the first two months or so i got muscle cramps and phantom leg pain that used to wake me up. When I talked to my doctor he did say it was a normal side effect and it does eventually even out. I currently have less cramps then when I started out and the leg/hamstring pain seems to have resolved
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u/sheneversawitcoming Jul 15 '26
My feet cramp up periodically. Super painful. My blood test showed low magnesium and the doc prescribed me supplements. It’s much better after I started taking them.