Imbruvica and muscle spasms

[ettie18]

Hi all: I was wondering if anyone has experienced severe muscle spasms while taking Imbruvica. Thanks for your response.

[manzelka]

When my husband was on Ibrutinib/imbruvica he suffered quite badly from muscle spasms specially when he stopped taking them to change to venetoclax because the Ibrutinib had stopped working. He also had the spasms when the Ibrutinib dose was lowered due to side effects.

The spasms were so very painful for him far worse than any cramps.

I do hope your spasms ease up very soon.

All the best.

[ettie18 in reply to manzelka]

Thank you for your reply. The spasms are quite debilitating making getting out of bed very difficult. Hope your husband is better now.

[sllincolorado in reply to ettie18]

How long have you been taking it and how long have you had the spasms? If they don’t go away soon, and you are in the US, your doc should be able to switch you to acalabrutinib which typically has fewer side effects. Up to you and your doc whether acala, which is also a btk inhibitor, would be best choice or whether to go to something like venetoclax. Some side effects are likely no matter but debilitating pain should not be one if them.

[manzelka in reply to ettie18]

Thank you ettie.

The spasms stopped about a week and a half after him being on the venetoclax.

They also weren’t happening throughout his time on Ibrutinib only

Initially when his consultant told him to lower the dose, and for a time after he stopped completely.

You have both our sympathies. My husband is by no means a whimp but those spasms brought him close to tears as nothing seemed to ease them he just had to wait for each one to pass . I felt totally useless as there wasn’t anything I could do to help.

I wish all the best and hope these nasty spasms stop quickly.

[zaax]

Yes, being woken with a charlie horse is not fun. I find the best why to stop is it stand up.

[Newdawn Administrator]

I’ve suffered this virtually every night (and sometimes days) whilst on I&V for a year and it shows no signs of abating. The nocturnal cramps are pure agony so I feel for you with this. In honesty I had these cramps prior to treatment too but they are much worse now. I’ve tried every remedy to little effect but it’s essential to keep the legs and feet warm.

Newdawn

[country76]

Oh boy. I have had them really bad. I bought some mag/phos salts. They are little white pills that dissolve under your tongue. Most of the time it relieves them. Lately they have let up a bit. I don't know why. They will start to grab me and then let up.

I even had to go to the emergency department with an exceptionally bad night. Nothing would touch it. The main large muscles of my left leg cramped up. My left leg muscle was still swollen when I got to the ER and my whole thigh was one large bruise. My son said I looked like I was hit by a car.

I now get cramps in my neck, shoulders, back and arms.

It is scary and hard to go about your life not knowing what triggers it or when it will happen. One night I was driving home from class with my leg cramped up. A 30 to 45 minute drive.

I keep the salts on me at all times and near my bed. If you take too many diarrhea will pop up, so you have to be careful.

I am taking Ibrutinib

[Walt424]

I have had severe cramps since starting Ibrutinib in October. The worst are in my neck. I’ve also had them in my hands. I’ve found that hydrating helps. Other suggestions?

[Jev5603]

Yes, I sure have. For me, drinking a big glass of water first thing in the morning and then 2-3 more glasses throughout the day helps some. A heating pad also has helped me. None of the mineral supplements people recommend helped me. After a year in remission, my hematologist reduced my dose, which did help with the cramps, and has not adversely affected my blood numbers. Good luck!

[blueracecar]

Yes have most definitely had severe cramps from time to time in Imbruvica but found that using magnesium lotion really helps. I buy one from Life Flo thats about $15 for an 8 oz bottle and rub that on all the cramping spots before bed and it really works. Get from Amazon, Sprouts or similar health food store.

[Big_Dee]

Hello ettie18

I take 1/2 of 250 mg magnesium tablet every other day. I reduced the dosage due to diarrhea. The other advantage other than stopping muscle cramps is magnesium helps your body absorb vit D. Blessings.

[thompsonellen]

Yes, and still do years into this. Specifically, toes, calves, and stomach. Recently, I had one right above my ankle. That was the worst. I do not have a problem well I keep very well hydrated, but if I don't, I pay the price.

[Lulu8581]

Yes! Sometimes, not every night, I get awoken about three times a night with severe leg cramps and have to jump out of bed and stand. I have noticed that on the days I drink gatorade (usually on the days I walk five miles) they don't occur...I am going to try magnesium. Hydration seems to be the key.

[livinglifewell]

Yes to the muscle spasms, they're like charlie horse type spasms and they happen in my hands, feet, and calves. I have found that magnesium infused lotion is helpful and hydrate hydrate hydrate.

[skunkbay53]

My husband had horrible leg cramps while on Imbruvica. Claritin, pickle juice, potassium and Magnesium Glycinate all helped.