Muscle pain on Ibrutinib

Has anyone else experienced muscle pain and stiffness on Ibrutinib? I started it as frontline treatment back in October and have been sailing along without any problems. Once or twice when my water intake was not adequate I did get cramping. Now, even with increased hydration I am getting cramps and stiffness in several muscles around my legs and hips. I'm wondering if it is a side effect of the medication, or related to my previous back problems.

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  • I have been on ibrutinib for 7-8 months and the first 6 months were filled with severe bouts of joint/muscle pain and cramps. It has finally improved - though occasionally it returns but does not last as long. Keeping hydrated is important.

  • Thanks SunnyCA, it is encouraging to know the cramps eventually improved for you.

  • What`s your deletion?

  • The problems you describe belong to the usual side effects of our lifesaving agent, what you also may learn from the patient information leaflet. Drinking enough water sure helps to reduce those reactions. And ... dont worry, even though it is unpleasant, hurts and reduces your physical mobility, it normally becomes less within the next months. Take it as a sign, that Ibrutinib does its job.😉

    Chin up and all the best to you

    Gerd

  • Thanks Gerd. I read the packet when I received my first dose. There were so many discouraging side effects, I'm sure I tried to put them all out of my mind. It is doing its job as proven by my labs, so I'll hang in there.

  • Hiya, I'm sorry to say that my muscle cramps are as bad as ever and I still get bouts of joint pain, especially in my hands and feet after 16 months of Ibrutinib. Keeping moving helps the joint pain but I am driven to despair by the muscle cramps, especially in the evenings. I drink 3L of fluids per day with at least 1L of that after 7pm but it doesn't help me. I terrible get cramp in the thigh, chest, abdo and back muscles. I hope you find something that works for you.

  • For me it started with just the feet, but increasing my hydration seemed to help. Now it is in my hips and back. I'm drinking just a bit less water than you, I'll try increasing it (if I can stand it) and see if that helps. Thanks!

  • My wife took Ibrutinib for 12 months. She had horrible leg cramps the whole time she took Ibrutinib. She tried various things to reduce the cramps e.g., magnesium, calf stretching, lots of drinking water) but they did not help. The only thing that helped her was a foot massager (https://www.amazon.com/dp/B004IF89MY/?tag=footmassager2-20).

  • Interesting about the foot massager. I wonder if TENS therapy would be useful as well.

  • My wife did not try TENS therapy.

  • I'll try a foot massager and see if that helps. What I really need is one of those massage recliners! Thanks for the feedback.

  • Hi I have been on Ibrutinib for 6 months and not had any muscle pain, it seems everyone reacts so differently with CLL. I do exercise everyday although quite sedately!

  • I hope you never have to experience it splashsplash. The pain has limited my ability to do the type of exercise I have done in the past. Stretching does seem to help initially, but then the pain returns and the muscles become tight again.

  • So true. I think that, unless you've experienced this sort of unrelenting and severe cramp you cannot imagine what it's like. Stretch one way to relieve one lot of cramp, only then to get it in other muscles at the same time. I feel nervous going to the theatre and always try to get an isle seat in case I need to get up and walk out. I can't even tie the laces in my trainers without getting cramp in my stomach muscles. Cramp in bed ruins my sleep and I only average about 4-5 hours a night according to my monitor. However, being on Ibrutinib leaves you with very little options if you need to come off it. I feel a bit trapped to be honest and some days it gets me down. Hoping to address that with a chocolate Labrador puppy! Sorry to sound so negative but I hope you find something that works for you - please let me know if you do. x

  • Another suggestion / I keep several stretch straps ( used in PT) in my car, gym bag, next to my bed - During a flair - I use it preventively and after the cramp to relieve the tightness.

    My relationship w my feet ( putting on socks and shoes) has been compromised. I sit on steps and find the distance helps me to negotiate the tight hips and back. Don't need to live in clogs :)))

    A friend gave me a pick up stick to use in the kitchen when I drop things and need to bend over like the olden days of memory! Has saved my cabinet & oven doors.

    Sobering and humbling but still feeling SFLucky!

    -Diana

  • When I broke my shoulder and some ribs my vacuum cleaner became my best friend. I used the suction to pick up things - necessity being the mother of invention.

  • Very cool!!!

    I love innovative ideas!

    Thank you.

    -Diana

  • I've been getting deep tissue massages. They seem to help for a few days. But, the puppy sounds like a wonderful idea!

  • Yes- I get leg and foot cramps. Not too bad though-

  • Glad to hear they aren't too bad for you.

  • Yes - the arthralgias - for me - on full dose (10/2014) - 3 capsule ( 420 mg) were fleeting but at times debilitating. Enough to keep a cane available - although PT had me walking within a session after coming in with the aid of the cane. The muscle seem to cramp into spasms - I'm not sure if the pain is muscle/ligaments or bone.

    BP issues restricts the ability to reduce the pain with anything but Tylenol

    On reduced dose 2/day since minor surgery 7/2016 with much less AE ( rash, arthralgias)

    Lab numbers are perfect with FLOW still reducing - 0.2% at last checkup.

    I am very active - yoga, walking, gym, treadmill- but aerobics had to be curtailed with the arthralgias. This contributed to the weight gain over the last 30 months.

    Since AE has reduced , I no longer think about lobbying for a new therapy or combo agents.

    The devil you know ...

    I still feel very lucky ... very chubby but SFLucky.

  • I too have gained weight since starting treatment. I wonder if that could also be attributed to the ibrutinib? You're certainly right about the aerobic exercises though, quite a few days of cramps and pain afterward. Happy to see that your numbers are improving!

  • I'm really glad for you, sounds like you've found the right balance.

  • Curious, what`s your deletion? I must be a cry baby- I couldn`t take the pain anymore. I`ve never suffered this side effect even when on FCR. Was pretty much pain free all my life except some neck pai but not enough to be continuously on pain killers.

  • I'm 11q- :-(

  • Thanks I was curious to see if those with 17p do better, having minimal side effects on ibrutinib. I`m 14q13 un mutated(which makes whatever treatment I get not stick too long). Since 17p is more troublesome and needs more treatment options, it seems the new targeted drugs are tested on them first. Diplomat pharmacy said very few 13q14 come into clinical trials, when I asked why the FDA discriminates by only allowing certain drugs available to 17p which leaves me out and possibly you- example-venetoclax only approved for 17p right now.

  • That is true, It's always 17p first but their need is the most pressing. However, often the other groups are not far behind and, as you say, get 'forgotten'. There is no approval for Venetoclax in UK, 17p or not, very frustrating.

  • Yes I`m sorry. I know all about frustration in many areas. I didn`t know there is so much CLL in UK. I want my husband and I to go back to Italy now he is retired but I don`t know how that will impact me if I never go into a durable remission but I so love the European scene( I`VE been to Italy many times before CLL-got to meet my other relatives in Sicily) and can`t imagine spending what ever time I have left wasting it here( hope I don`t offend my American counterparts) That's why I tried ibrutinib for second time to buy time to go straight to venetoclax when and if approved for other deletions(could turn out to be the "loaded gun" instead of rituxan/idealasib). We have had an ice storm lasting two days and now high winds so staying put in house. I hope your treatment goes well .

  • Hi Greygirl. I have the 17p. I have been on Ibutrinib steady for 21 months. Started having severe joint pain all over my body after 4 months. After a short hospital stay, a strong steroid shot and Gods healing the pain stopped. 9 months later the pain has returned. I try to keep active but the pain is horrible. I do take prescription pain meds but do not give much relief. Hoping you get help soon.

  • sorry I just saw your e mail. I am in W&W period right now. I `m doing my own thing and won`t know until end of this month if it is keeping my white cell count still at 36.000. My oncologist wants me to do bendamustine/rituxan when I need to. But I will NOT take them together as I already have experienced what happens when I try to combine these powerful drugs together. Yeah, I can never go back to ibruinib-too crippling for me! I can`t see being on a cancer treatment and suffering in agony the WHOLE time which could last until rejection. This is my opinion.

  • Hello.

    I have been on ibrutunib for 18 months now. I find that any extra activity causes excessively tight muscles. I am a personal trainer and in doing so I find myself doing a fair bit of exercise. However, if I don't stretch after training clients or training on my bike I find myself as stiff as a board! This definitely has become more of a problem since being on ibrutunib. Stretching and massaging the offending areas is the way to go.

    As for cramps, can I suggest trying pickle juice?? I have been using it to combat restless legs. I have suffered from this for about 15 years and it had been driving me mad! However, my father in law, who happens to be a doctor in Austin TX, mentioned that athletes in the US were using pickle juice to combat muscle cramps caused by dehydration in the latter stages of endurance events. I generally don't try anything that isn't prescription based but I have to say that since using it I have rarely suffered from restless legs. 5ml a night before bed and I sleep all night! Bliss! I highly recommend you check it out for your cramps.

    All the best

    S

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