I have been on Ibrutinib for 18 months and doing great! All numbers Of bloodwork we’re in normal range since November of 2019. Other than some mouth sores and splitting nails and skin around fingers and toes, I have had very few side effects. I have had some muscle cramps in my legs and feet throughout the time I’ve been on Ibrutinib but nothing too severe until the past couple of months. I now get cramps in my outer thighs and have to walk them out and also Now I get cramps and “drawing up” in my feet, legs, hands and fingers. My hands seem to lock in position with me at time and I have to use the other hand to “unlock” it. And I’ve started having cramps and spasms in my upper abdomens region on each side under the breast area. This is so strange to me! Has anyone else experienced this type of cramping/ muscle spasms in your hands, feet, abdomen? Could it be a side effect or Ibrutinib?
Cramps and muscle spasms: I have been on... - CLL Support
Cramps and muscle spasms
I've been experiencing exactly what you have described. The doctor says it is a side effect but the only thing to do is to go on a different medicine but he doesn't want to do that. I'm trying to tough it out at this point. He thinks it will eventually stop I've been on ibrutinib for 8 months.
I think the positives are outweighing the negatives right now. I’m doing sooo well right now. But my cramps have definitely gotten worse. I don’t want to change meds because I know that the longer I am on Ibrutinib without a change the better off I am.
I too have had the same cramping and spasms. My doctor did put me on a potassium supplement. When I get the cramps, I take a spoonful of yellow mustard. It works, but doesn't taste the best!
Ugh! Haha. We have to do what works, though!!
While it may be the Ibrutinib, it could also be that your magnesium and/or potassium levels are low. And dehydration can be the problem--though, I assume you are following the instructions for Ibrutinib to drink the amount of water stated. If you are on any medications that can contribute to dehydration, you may need to drink more water than Ibr. calls for.
And, Calcium, Sodium levels are important to have checked---I think that my similar cramping to yours (not being treated for CLL) may be related to sodium and calcium levels.
Hypothyroidism is also a possibility.
I have not had the problem since having calcium levels adjusted along with Vitamin D3.--
and having my thyroid medicine levels changed (I have had a thyroidectomy).
healthline.com/health/muscl...
I do, however have spasms of the diaphragm just above my liver--they happen when I bend at waist, sometimes. (Spleen enlargement may be causing that?)
I am sure I need to drink more water. I drink a lot of other things - tea etc - but not water. 😳😳😳
Yes, tea can contribute to hydration as can coffee--not saying don't drink it. I'd be a hypocrite, were I to say that.
Try buying rehydration salts from a pharmacy. They have different minerals and just dissolve in water. If you have low levels, drinking more water wont help. They are very inexpensive and because I have had all my medication adjusted so that it doesnt clash with the ibrutinib, I often have bowel problems. I know now to replace the lost salt and minerals.
Ask your Primary Care Dr. to test you for the possibilities mentioned in that article. And do let your CLL Dr. know what your are experiencing.
Please do not try to diagnose yourself. What the situation is for any other is not your diagnosis. We try to help and suggest, but before you take anything talk with your CLL provider and your PC.
Best wishes for getting these episodes stopped.
Thank you. I do plan on talking with my oncologist at my next appointment in August.
Hello 210savannah
Yes drink more water, coffee is a diuretic and causes your body to expel water. I have not had leg cramps after treatment until this summer because I have been working in the heat and sweating a lot. Solution for me is more water. I also take 750 mg of magnesium a week. To much magnesium causes diarrhea. Blessings.
I have also been recommended to take potassium by others. So I will look into the magnesium and potassium. Thank you!
That is interesting you mentioned Hypothyroidism. I take a thyroid supplement because my thyroid was removed and it stopped working. I became hypothyroid which was unnoticed until a few months ago for my annual lab. A lot of the side effects are similar to Ibrutinib.
I would get the spasms just above the liver for years. I think that’s just the way you bend I know that’s what happens to me.
Yes sometimes it’s when I bend over but not always. I was eating dinner a couple of nights ago and had the abdominal cramps so bad I couldn’t finish eating. And for me that’s saying a lot! 🤣🤣
My leg cramps started before I got on Ibrutinib, but got more severe as I started the medicine. They would come and go. After starting a magnesium/vitimin D supplement it seemed to help tremendously. I really stress drinking my water and can tell when I don't get enough. My wife also had some magnesium cream I rub on the cramped muscle if I have one at night. It seems to help also.
Thank you! I’ve had others to recommend magnesium supplements.
Hi, I have that problem too. Mostly my legs cramping. Other joints such as my hands and wrists become weak and painful.
I have had low sodium and I decided to buy salted peanuts and sprinkle salt on some foods. I heard that low salt caused cramp. I think it helped my legs.
Biofreeze rollon is good for painful joints.
I think it is the ibrutinib. When I first started taking it I had a lot of pain in my joints and gout in my hands. Not all at the same time.
We are supposed to avoid salt. I get problems with diarrhea and I tried replacement salt sachets from the chemist. Worth trying. Anne uk
I actually take an anti inflammatory which most people on Ibrutinib say they cannot take! I have osteoarthritis and have had a hip replacement and really need the meds to be able to move without pain
I have just taken a Naproxen for the first time in months. I am so stiff from arthritis and my back is really inflamed. I had surgery in 2001. I cant understand why it has flared up.
I was laid up in Feb and March with my back in spasm. Because I have recently tried to move more, I must have triggered this pain.
Seems like we are both struggling with more than 1 health issue, Anne uk
Those back spasms are no joke!! 🙏🏻🙏🏻🙏🏻
Worst its been for years. Still feels like it might go on me if I dont keep it supported.
I have this also. Osteoarthritis and had hip replacement in 2016 but havnt experiences joint pains and spasms until I started Ibrutinib. I’m on it for 3 1/2 months so far . I will try to drink more water and keep taking magnesium pills .
Hi yes I got all those cramps and spasms I came across Theraworx. It is fantastic. I buy mine at cvs I guess Walmart May have it. You should put it on everyday for a while it comes in foam , which I use, it also comes in a spray and lotion.
I tried drinking pickle juice , orange juice.but this cream is awesome.
I take 2 biotin 5000mcg daily for my finger splits never had my toenails as a problem.
I wish you luck with the things I have mentioned. Please let me know how u make out.
Good luck and God Bless.
The biotin has worked for me. I have been taking it for a few months now. The flaking nails have needed to grow out and the nail is slowly growing through stronger. I will see if I can get the theraworx in the uk. Anne uk
My husband was on a low sodium diet for chf and I followed it too. Could be why I got the cramps. But the pharmacy told me the cramps and spasms in my hands are because of imbruvica. Along with the diarrhea , I take an imodium and helps me out for 3 days. Also have had a lot of hair loss which is now poker straight I miss my curls. But I’m doing well and am alive. I’ll pay the price of a few problems just a few.
Good luck and I hope you like the Theraworx. 🙏🏻❤️
I am hoping its safe to swim at some stage. I need to use the smaller pool which has warm water. Gentle exercise in warm water helps my sciatica and arthritis.
I am going to take the anti inflammatory for a while but I wont complain about the ibrutinib because my numbers are great.
That’s how I feel. I would rather deal with some cramping and muscle spasms than deal with poor bloodwork!
I haven’t had too much hair loss but my hair has gone curlier than ever!!! Always had some curl but it’s crazy curly now!
I’m going to look for the Theraworx. I have taken Biotin but I read somewhere that you have to quit taking it a few days before bloodwork because it can mess up your numbers
I don’t stop the biotin some say yes and other labs say no. I think I’m going to google it. You will be surprised how the Theraworx works. Good luck.
Hello,
Yes there is a lot of information on here about stopping Biotin a week before bloods because it can interfere with results so I keep a sticker on the bottle to remind me.
Another thing to try for hand cramps is a drop of Black Pepper oil mixed in with hand cream. When mine started ( pre Ibrutinib ) I was sent to a hand clinic in my local hospital and shown some exercises to do. That helps as well.
Colette
Yes, all of the above. I had the same experience. If I was close to a sink I would run warm water over my hands that worked to unlocked them, I also used the other hand if it wasn't locked up. Sometimes they both were locked up. I also used mag/phos salts. Also my right arm or leg would unvoluntarily move to the side.
My feet and toes and fingers draw up sometimes into contortions. It’s painful and also hard to work them out at times!
Hi.
Everything you've mentioned is exactly how I have it. It can be a nightmare.
You are not alone.
Do you ever get a stiff, painful neck coupled with a stonking head ache?
I haven’t had problems with my neck or headaches. Mostly cramps in the foot/toes/ hands. Started getting them in my upper thighs. And now abdominal .... sorry you’re having neck and head issues. That’s never fun!!
I have had muscle cramps for many years (pre CLL). I tried many things over the years. A glass of tonic water before bed helped me (very low dose of quinine) for a long time. Several years ago I started taking turmeric (1000mg twice a day) and it has worked wonders for my muscle cramps. I continue to take it now while on acalabrutinib.
Good luck.
Thank you for the advice!
Yes I can relate to all those symptoms you posted about. And the things others described . Muscle spasms make my legs feel like they're someone else's legs at times !
My right arm has started having a spasm which throws it up in the air sometimes- it's embarrassing if I'm holding something lightweight - whatever it is in my hand goes flying!
I know it's more likely to happen if I've been on my laptop too long in with R arm held in one cramped position .
Someone else (broken nails problem like mine) mentioned Biotin but my research also suggested it could mess up some of the lab results , particularly thyroid numbers. So I haven't tried it as a supplement. Am on Ibrutinib.
My wife gets horrible, horrible, horrible foot, leg, and hand cramps while taking Ibrutinib. It is a well-known side effect. Her magnesium, calcium, and potassium levels are all normal. Magnesium pills do not seem to help. She gets some temporary relief by using a MedMassager machine (on amazon as MedMassager Therapeutic 11 Speed Electric Deep Tissue Foot Calf Massager MMF06). After stopping Ibrutinib the cramps lessen but do not go away. The leg cramps are worse when she lays down in bed and lessen when she sits up and dangles her legs off the bed.
Thank you for the recommendation!
My wife also gets some relief with Theraworx foam (others have mentioned this product) and using a heating pad on the cramp (sometimes she has two heating pads going at the same time.
Hi.
I have exactly what you mentioned . Cramps in legs and feet and fingers lock up. This happens when lying down or in a sleep position and move to stretch my legs and suddenly comes these spasms . I have to get up , stand and let the spasm go away. Then it happens in my fingers it is worse and harder to get rid of . I get a glass of Tonic Water which has Quinine. My Hematologist tells me to drink this and also take magnesium pills 250MG each day . I started talking Magnesium pills about 3 weeks ago but I still get the spasms . It is side effects of Ibrutinib/Imbruvica. It’s a small price to pay to have my blood counts get into better range .
Yes I feel the same way. I definitely need to drink more water!
I get cramping in my legs, ankles or feet usually after I've been sleeping and move too quickly to get out of the bed. It can be very painful! I use a cream, like Bengay, and that usually helps to calm it after a few minutes. Wondering if you use Theraworx as a preventive measure or just when you have a spasm as mentioned above. Sometimes my fingers get stiff and I can't bend them and that is quite painful as well. Nothing to do for that as it happens unexpectedly and just wait until it passes. Been told that's arthritis but could be side effect of Imbruvica. I share your view that the benefits outweigh the negatives.
Yes I am wondering also if the creams are used regularly. I get the cramps and spasms a lot while I’m asleep but my hands and fingers cramp up at all hours. No warnings.
Hi
I get the same thing but when it happens Inget up slowly , stand and let the pain subside . Take a drink that has Quinine. Biofreeze ointment good to have in your house . It may help at times .
Increasing my water intake has really reduced these symptoms for me.
Cramps in my hands, legs and elsewhere usually tells me my water intake is insufficient.
They happen mostly at night and a heating pad helps to stop them.
Standing or walking does not always help.
For me, ibrutinib is a lifesaver, so I manage the symptoms.
Yes Ibrutinib is such a wonder drug for me and so many others. I feel like I can take the cramps as long as the CLL is under control
Hi 210savannah,
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There are lots of previous discussions on this subject, so in addition to all the helpful replies on your posting - you can look for the box labeled "Related Posts" on this page.
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Here is a link to a recent discussion on Ibrutinib and cramps-
healthunlocked.com/cllsuppo...
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And once you are on that page, look for that same box labeled
"Related Posts"
*Muscle cramps on Imbruvica
*Muscle cramps on Imbruvica
*Ibrutinib and severe foot cramps
*Physical Activity, Cramping & Ibrutinib
*Muscle pain on Ibrutinib
That box will be upper right column on computer screens or scroll way below on tablets or other mobile devices. The list in the box is triggered by the title of the posting.
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We have many past discussions that may be useful- try this link to a list of 75 past postings that mention cramps.
healthunlocked.com/cllsuppo...
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Len
Thank you! I will check it out!!
I as well have cramping and spasms as well I take a tablet or 2 of potassium as soon as it starts and seems to help greatly but I do realize you should ask doc if this is ok for you! It’s OTC potassium gluconate 595mghope this helps and keep kickn CLL’s ASS
Thank you. I’ve seen others recommend potassium so I will mention that to my oncologist.
I have had some cramps too - not as bad as yours, but persistent. Mostly in my hands if I pince. I’ve been taking 400 mg of magnesium daily which my cancer doctor says is very safe and I think it helps some.
Several of you have mentioned magnesium. I will ask about taking supplements when I go to doctor appointment. Thank you!!
I'm sorry to hear that you are experiencing muscle cramps and spasms. They can be very painful.
I have experienced severe muscle cramps/spasms/locking on several occasions. The pain was very intense, lasting approximately 10 minutes. I'd rate the pain 9/10. Fortunately, this has not occurred often. More frequently, I get spasms and or cramps in the fingers and forearm where the fingers lock. While still painful it's not unbearable.
I plan on talking to my specialist about this at my next visit. I will likely follow up with my GP as well and see my physiotherapist for potential exercises.
In a previous visit to my heamatologist he said I could try magnesium supplements. I just started to take them a week ago so I will see if they help. My sodium, and calcium levels are regularly checked. I will ask to have my magnesium level and whatever else my dr. recommends.
I also work with a naturopath who provides recommendations for my side effects. Before taking any supplements I double check with the pharmacist. I am also involved in an exercise program guided by a physiotherapist and kinesiologist who specialize in cancer and can modify my exercises when my body parts are acting up that day. (Currently via Zoom).
Take away. I would suggest you speak with you specialist and GP and follow up with their recommendations. Your symptoms could be a side effect but it's important not to make that assumption.
Before taking supplements or medicinal creams always get the approval from your pharmacist or specialist. Certain supplements/ over the counter pills can do harm when taking ibrutinib, ie. tumeric supplements.
Various health professionals/services may be helpful in a variety of ways. You are not alone.
Keep us updated.
I wish you all the best.
Thank you for the advice. I see my doctor in three weeks and I do plan to discuss this with him.
Dear Savannah:
I have been on Ibrutinib since July 12, 2012. The muscle cramping was my worst side effect. I got pretty severe cramps for a while. I found out that I was not drinking enough water. I wish I had known that sooner. Try that and see if it helps.
Dr. La Verne
... And I started taking magnesium. I even soaked my legs in Epson salt baths.
You and several others have mentioned magnesium. I’m going to mention this to my oncologist at my next appointment. Thanks!
How are you doing DrLV. It is good to see Ibruitinib is still working well for you.
I definitely will increase my water intake! Thank you.
Yes! I have experienced the same exact thing. I try to drink plenty of water and I take a magnesium and calcium tablet twice a day. This seems to help some. But the water seems to help the most.
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