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CLL Support Association
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Cramp!

Hi All ,I’m on ibrutinib and venetoclax and I am having terrible cramp ,has anyone else experienced this ?

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Yes! On Obin + V + I and have intermittent bad cramps in hands and legs. 7 months into a trial.

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Yes me too! For some reason my foot or calf muscle cramps pretty hard but only at night when I’m in bed. Also I have been having my fingers cramp where my thumb or fore finger cramps and is held against my palm. I usually use the other hand to straighten it out then it’s fine again. This happens somewhat infrequently perhaps a cramp a week. I increased my water intake and no change. If you find a solution please post here!

Mike

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I sure do drink enough! (Water logged) it happens very frequently for say three or four days then not at all for the same ,small price to pay though isn’t it was just interested to see if any one else suffered my consultant hadn’t heard of it happening .

Good luck to you 😊

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I have been on Ibrutinib for the last 8 months and I also get the finger and thumb cramps exactly like you describe. Seems to be more frequent when I am using my hands for work. Raised the issue with my GP recently but she had no ideas as to what it could be. Will be raising this with my haematologist next week when I have my next check up, but don't expect any light light to be shed on this problem.

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Sue, be sure you are drinking the amount of water recommended while being treated. Tell your Dr. what is happening.

Also ask your Dr. to test your levels of magnesium, potassium, and salt.

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Thanks for the reply I sure do drink enough and have regular bold tests just something I have to put up with I suppose but as I said to Mike small price to pay !

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Blood ! Tests

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Most of us get a blood test from our CLL Dr. each time we have an appt.,

however, those reports do not show calcium, magnesium, iron etc.

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I personally think that there is a correlation between times of extreme stress and muscle cramps. When it happens to me (usually hand or foot or even jaw), I pop a Magnesium pill. Supposedly helps and seems like it does.

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Yes I have, but solved it mostly by drinking much more water

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My partner's hematologist advised him to drink Tonic water. He is on Ibrutinib. It is really work. No more crumps!

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I do drink a lot of tonic (also with gin in it) some good days some bad ,good luck with your treatment

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Hello Workers

I would suggest you talk to a CLL Specialist before taking magnesium or tonic water. I was warned off tonic water by CLL Specialist. I had magnesium levels check by GP. I toke 400 mg of magnesium for leg cramps and had frequent diarrhea. I had reduced to 250 mg and no more cramps or diarrhea. See if you can get all your doctors talking together. My H/O was recommended by my GP who is great with working with H/O and CLL Specialist. Not all things helpful for non-CLL patients will work when you have CLL.

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yes i have had cramps or feelings of getting them ....sometimes

i usually drink magnesium chloride ,you can buy at a pharmacy for cheap.. drink very little of it before going to sleep....I had magnesium measured on my labs a couple of times and has been always normal. So i think maybe sometimes there might be a disbalance sometimes.....

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Yes

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Usually in my sleep I get cramps in valve muscles. Not comfortable at all. It’s best to walk around if cramp comes on.

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While taking Ibrutinib my wife had horrible, cursing-out-loud leg cramps. She got some relief using a

MedMassager MMF06 11 Speed Foot Massager, twice daily Magnesium Bisglycinate 100% Chelate TRAACS tablets (there IS a difference in magnesium tablets) , and when cramps occur Theraworx Relief Fast-Acting Foam for Leg Cramps. Although you might be able to find a better price, all 3 products are available on amazon.com.

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I am on ibrutinib and have found drinking more water than usual helps to minimize cramps. I also put a pillow under the covers at the end of the bed to keep them off my legs/feet when I change position. I use a heating pad also if standing up does not stop the cramp and the heat helps the spasm/pain. Cramps in my fingers sometimes happen with repeated motion e.g. on computer, but these are easier and my other hand can pull them straight. Hope this helps.

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Hello hazelton

I no longer have cramps, but I found getting out of bed and standing on floor forcing my foot flat, stopped cramp.

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Great that that works but it doesn't always for me and hence the heating pad.

Sometimes it is a "funny"cramp unlike ones I have had after athletics. Seems different muscles. I think whatever works is great!

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Are you taking any PPI meds?

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Magnesium Oil, absorbs quicker through the skin, Magnesium Chloride (bath salts) or good quality Magnesium tablets have helped me with cramps with both Ibrutinib, Venetoclax and Prednisilone.

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Husband has terrible cramps in lower legs, hands, even neck and chest.

Discussed with his PCP and he gave him a low low dose of Gabapentin

100 mg only to take at bedtime since he seems to only get them at night.

Two nights so far and he has not had cramps. And when I say how bad they are he says sometimes he thinks he would rather die than endure the pain, so I guess they are pretty strong! He has taken magnesium citrate 400 mg. twice a day and I bought the magnesium spray but doesn't seem to do it. He drinks tons of fluids. I bought him diet tonic water but don't think it did much and I have heard it can be bad.

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Poor thing I do feel for him ,it is vile and as you say in the most odd places ,wish him well 😊

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