Imbruvica muscle joint pain
I have been on imbruvica for six months and had an excellent response but am having knee pain, leg pain, ankle pain....limping around and can barely walk at times. I don't want to stop the drug. Taking prednisone 5 mg did not help nor is tylenol arthritis making a difference. Any suggestions?
pianogal: I was on imbruvica and had same side effects. The only thing that helped was using biofreeze. Advil did help but should not take and I only took as a last resort. Biofreeze definitely helped. I also got AFIB from imbruvica and have since switched to Calquence. Occasionally I still get some muscle and joint pain, but it is drastically reduced since I have been on Calquence. Also I found that keeping hydrated helped me. Days that I hydrated less seemed to be days that I got the joint pain and muscle pain. Do not know if there is any correlation, but it seemed to be for me. So I try to make sure I drink a lot of water.
Bill1288
Bill, wondering if your Afib stopped after you stopped ibrutinib. I too got Afib and successfully had a cardioversion.
SamanthaJane: I still have afib after switching to acalabrutinib. I am on eliquis and am on a six month check up routine with my heart doctor. I have no symptoms from afib at this time and did not when it was discovered on routine ekg test. So just being monitored by heart doctor at this time. I am glad you had a successful cardioversion.
Glad to hear that your Afib is not causing you any difficulties. Wishing you all the best.n
Your post is well appreciated . Bio freeze is amazing . I had this in the house even before being diagnosed with CLL 11 or so years ago. It really helps relieve muscle spasms and join pain . I don’t know about Calquence but I’ll ask my hematologist at next appointment. So go at Imbruvica is working for me . I’ve had 2 heart monitor tests fir Afib . The first test was good . The second test I don’t know the result but I’m sure my hematologist would call me if she saw a bad result .
Dealing with similar just add hip pain. I have always been active but sone days barely can walk to mailbox. But so far happy drug is working. I will try biofreeze and drink more water.
Hi pianogal,-
There have been many past discussions on this issue, and you can find some of them on this page in the box labeled Related Posts
*Joint pain and Imbruvica healthunlocked.com/cllsuppo...
*Bone/Joint pain on Imbruvica healthunlocked.com/cllsuppo...
*Joint pain/shoulder pain on Imbruvica.. HELP! healthunlocked.com/cllsuppo...
*Muscle and joint pain healthunlocked.com/cllsuppo...
*Ibrutinib joint & muscle pains healthunlocked.com/cllsuppo...
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Len
thanks - open to all info!
Based on personal experience, if you have times when you are in so much pain that you can't walk, you should ask about Calquence/acalabrutinib. You are in the US so this should be available to you. There were times when I had to crawl on ibrutinib. Some people find that after a few months the pain goes away. Nothing worked for me and I was not willing to continue. I was in so much pain I decided I would prefer to have a quality of life and not take the drugs - thank goodness acalabrutinib was in the process of being approved for CLL so I was able to switch.
Pianogal. You can try injecting each of your joints with cortisone. An orthopedic doctor can do that for you. But you will probably have to go back every 4 months. My doctor took me off Imbruvica and put me on Venteclax
The Venteclax took away most of my pain except for my knees which I had replaced 6 mo. Later. When you get X-rays of your joints pay attention to what each one looks like. My knees were bone on bone. Good luck, stay safe, Anna
My hematologist told me to stop taking the pill for 4 days and the soreness went away. This was when O developed soreness snd swelling at my joints on my arms. After 4 days I began again and was fine for a fairly long time. Occasionally now I need to stop and start, the pain always improves. Been in the drug for 2 years now.
In my opinion nobody should do Imbruvica anymore. Too many side effect. Ask doctor for Acalabrutinib. I am really sick after my second covid moderna vaccine so my spelling might be off.
Really? Everyone is different . I’ve been on Imbruvica fir 10 months . I get joint pain sometimes , nail chips , some bruising that come and go after few days but overall my blood counts have been good since taking Imbruvica .
I disagree, why remove an option that works so well for so many? That's why we have numerous meds for virtually all disease states. What doesn't work for one works in another. There's no data at this time even suggesting that ibrutinib does more harm than good, only that certain patients have unacceptable side effects. Many meds are like this.
I think it’s too extreme to be talking about taking Ibrutinib off the treatment menu and I’ve no doubt 15 months on it combined with Venetoclax has really done the business for me. However, much more is known about the toxicity profiles of Ibrutinib now which is why the Flair trial has the Ibrutinib cohort re-signing consent. There’s no doubt that for some patients, it’s a more risky choice and I suspect I was one of them. I had my Ibrutinib suspended after 15 months because my existing arthritis was reaching mammoth proportions compounded by muscle pain and excruciating cramp. I endured it but my CK levels were showing evidential muscle damage and they said they were duty bound to regard this as a grade 3/4 ‘adverse event’. Of course the main problem was my inability to take anti inflammatories during BTK use. I thought I’d dodged the cardiac toxicities too but 4 days after stopping Ibrutinib, I was in hospital with uncontrolled tachycardia. I’m now in the process of having that investigated with a 5 day holter monitor and echocardiogram end of April.
I really believe the administration of Ibrutinib should come with more careful follow up monitoring especially in patients with existing joint issues, hypertension or history of any cardiac issues. I’d be reluctant to re-start it in all honesty but would take Acalabrutinib or one of the next generation BTK i’s.
There is a big difference between a few transient aches and pains and being so debilitated it’s hard to dress oneself. I reached that point but still pressed on with the Ibrutinib knowing it was working on the CLL and being on a trial, I couldn’t change it.
Newdawn
I think it's time the ibrutinib people may need to amend their lists/percentages of side effects. What we see in our (relatively small group for trials) clinical trials doesn't always stay the same after a drug has been in use a while. And perhaps reconsider its status as "first line" for everyone. But I wouldn't recommend taking it off the market, just..... better sensitivity to patients who report severe reactions. And perhaps limited therapy in certain patient types, if not overall. There have been too many reports here of people getting severe cardiac problems after extended use, if not immediately.
Sometimes the severe side effects are mitigated when using dual & triple combo treatments where lower doses of agents are used. This is extremely common in psychiatric patients, as well as certain cardiac and hypertension ones. I am glad to see dual & triple combos being investigated for our disease state, and doctors willing to modify treatments according to the patient...not just blindly following recommendations from a relatively small patient pool.
We don't have the large numbers of patients like, say, antihypertensive or diabetes drug trials. I would expect our dosing regimens to be guidelines, especially in CLL where presentation is so very patient specific.
Have you tried magnesium?
Yes I’m on daily magnesium and VitD thanks.
Newdawn
Has stopping Ibrutinib helped?
I dont want to complain incase I dont improve if I stop or change drugs. I had existing problems but not like this. I cant take anti inflammatories either.
Thinking back to 2 yrs ago as I started treatment, my joints were not as painful as they are now. Ibrutinib intensified the issue especially severe cramp and coming off ibrutinib has eased that. Undoubtedly, my arthritis is much worse especially in my hands and this lockdown hasn’t helped. My fully torn rotator cuff is a constant issue.
I was willing to continue with the ibrutinib despite the pain but my creatine kinase levels were very elevated and this is an enzyme that demonstrates muscular damage. The doctors were compelled to stop ibrutinib as a result.
I’m taking anti inflammatories now but very sparingly as I have proteinuria and the advice is not to use them. However, being immobile isn’t an option so it’s a balancing act 😏
Hope you can find some relief from this Anne. It’s no fun though I’m grateful for the therapeutic action of the I&V.
Newdawn
We have similar problems. Nothing can be done about my lumber spine. Its unstable and causes pain in my upper back because of lack of support. Crossovers with arthritis and fibromyalgia. I cant remember having this pain and stiffness before.
I will start a diary and see how bad the symptoms are. I dont know if my levels are tested for muscular damage. I also have irritable bowel problems. I would be interested if anyone has this and Ibrutinib has made it worse.
At the end of the day we have cll and the drug has worked. Thankyou,
That was ONE of my side effects. I found drinking more water and exercising in the pool really helped me a lot. Tackling the problem by lightly moving through this side effect helped me the most ALSO they reduced my dosage.and that helped a lot...... didn’t need that much to begin with I just finished my Ibrutinib/Venetoclax 2 yr
trial and putting up with the side effects paid off for me🎉
Catnap7
I was only on ibrutinib for 6 weeks. Had joint pain in many locations, usually lasted two to three days. I could still limp around when it was in my knees, but really hated that side effect! Had a cyst rupture behind my right knee and my entire knee area filled with blood and locked up. Had excruciating pain, and with that, had afib, possibly because of the stress. ONC had me immediately stop ibrutinib. After four days in hospital and three weeks of physical therapy, I was much better and afib was gone.Good news is my WBC and lymphocytes were under control for about ten months, just from that short time on ibrutinib. New treatment is obinutuzumab plus venetoclax. Doing very well on that after 6 months. Only side effect is a little stiffness in my thumbs. And all my blood counts and percentages are in normal ranges!
After all this, I would suggest talking to your ONC about changing to another treatment, if that is possible. Good luck and hope this gets resolved for you.
I am on Imbruvica also. I've only been on it 3 weeks. My Dr told me to drink at least 32 oz of water every day in addition to anything else. I get severe cramps in my feet when I don't drink enough water. I hope this helps you. Debbie
I had same serious muscle and other non-definable pains in random parts of body. Used magnesium. It worked but caused some diarrhea so I switched to magnesium bis-Glycinate 200mg capsules. Great relief. Now all those pains gone after a week or 2. No more diarrhea. I take one capsule usually 2 days in a row and then a day or 2 off. My oncologist says good idea. Hope this helps.
I will try this. Ibrutinib has got my numbers under control and if it wasnt for this pain life would be a lot better. Do you buy online? Anne uk
I buy the magnesium bis- gycinate at a health food store. By the way i lowered my dose from 3 to 2 pills over year ago. Works fine for me. Also i have been off it for 4 months and am still in remission. Will go back on in a couple of weeks. I have my blood tested every 2 to 3 months. Good luck. Only other pills I take are for blood pressure. And of course C and D daily, and occasional B and E and curcumin.
You can ask the doctor to lower your dose of imbruvica. they lowered mine to two pills a day and later one pill a day and They did the same for my neighbor who has CLL also. We had just as good of results on the lower doses. I had to stop it after a year though because I got a fib and they never put me on anything else so now it’s been a year later and I’m still not taking anything for my cll. My white count went from 343,000 to 21,000 very quickly when I was on imbruvica.. I thought it was odd that cancer center never checked me for a fib. I already had a ventricular arrhythmia which I had a blated before I started IB. But the a fib felt different so I had one of those Kardia EKGs that you can do at home so when I kept having that I checked it and it said it was a fib. I was kind of surprised they didn’t put me on any other medicine but a year later my white count has only climbed back to 31,000 and all my other numbers are in range Without taking anything at all.
Interesting. We are all a bit different. It is really important to be involved in your own treatment. Good to know you have been able to stay off Ibrutinib for an entire year and still be in remission. I am off now for 4 months, as I had some surgery for parathyroid gland. I had a-fib too, but it started only after 2 years of Ibrut, and could have been caused simply by stress, as I have had a lot of it. But it completely stopped and I am not taking any meds for it anymore. I however have heard (my onc told me) that when you take a break from Ibrut, it is good to resume it before it stops working, because if disease starts to progress then body has built up defenses against Ibrut. Then another drug is needed. I wonder if alabrutinib would work then. It is so good to be able to share our experiences as all of this is not just new to us but also to the medical profession. Best of luck.
I would be scared to get back on it again after the a fib. Especially when they have acalibrutinib and other things now. I knew it worked really good very quickly for me, even though I did have to lower the dose because of the fatigue but A/fib is way more serious to me than my CLL. Hope it all works out for you.
Hi. I have been taking Imbruvuca now for 2 1/2 years now. Over the past few months I gave been having extreme bone and joint oai in my hands, elbows, hips and knees. Someday it is very difficult to get dow the stairs the stiffness and pain is so bad. I see my Hematoligist/ Oncoligist again fir my 3 month checkup on April 15th. I am going to discuss this problem with him. It is now affecting my quality if life. Im only 59yrs old, somedays I feel like my body is that of a 90yr old. I want to get off this treatment as soon as possible.
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