When Ibrutinib side effects become too much - CLL Support

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When Ibrutinib side effects become too much

Mprm profile image
Mprm

I’m wondering what were the breaking points when people taking Ibrutinib decided it was time to make a change to another drug or drug combo and did this alleviate side effects. In particular, the muscle pain and stiffness. I’m finding that this side effect is getting worse over time, and while I’m grateful that my CLL is under control, I don’t know how much longer I can live with the constant pain.

42 Replies
Newdawn profile image
NewdawnAdministrator

I’m on a clinical trial taking I&V and had to discontinue Ibrutinib after 15 months as the joint and muscle pain was becoming intolerable and my CK (Creatine Kinase) blood test was seriously elevated indicating possible muscle damage. Interestingly it was my GP and not the trial team who carried out this test. CK is a type of protein, known as an enzyme. It is mostly found in your skeletal muscles and heart, with lesser amounts in the brain.

Any condition that causes muscle damage and/or interferes with muscle energy production or use can cause an increase in CK. For example, strenuous exercise and inflammation of muscles, called myositis, can increase CK as can muscle diseases (myopathies) such as muscular dystrophy.

This explains what CK is;

medlineplus.gov/lab-tests/c...

I have pre-existing arthritis so my reaction was exaggerated and not transient. It was classed as a grade 3 to 4 adverse reaction in my case and doctors have protocols (certainly on trials) for discontinuation or temporary cessation. This is a useful article on the subject;

ashpublications.org/blood/a...

Quality of life has to be an issue and if the side effects are impacting significantly on daily activity then I think it’s time to consider alternatives. Being on a trial, I couldn’t be changed to another BTKi but I continued successfully on Venetoclax.

Hope you get sorted soon,

Newdawn

I'm just about to finish 3 years in a clinical trial on Obinutuzimab and Ibrutinib and I know exactly what you're talking about. The bone and joint pain hasn't gotten any easier to handle. My specialist is switching me over to Acalabrutinib which is supposed to be just as effective without the side effects. It might be worth talking to your doctor about doing the same.

you've written this post so i guess its calquence(acalabrutinib) time

I switched to Acalabrutinib a few weeks ago due to ongoing gastrointestinal issues etc but I have a lot more pain now and just posted a question about it. I know it’s early for me and hoping pain decreases as severe migraines and headaches did.

Mprm profile image
Mprm in reply to Zia2

This is what I worry about, swapping out one batch of side effects for another.

Zia2 profile image
Zia2 in reply to Mprm

I had a lot of problems with Ibrutinib when I started it and some decreased and a few would come and go. Several months in my CLL doc seriously considered taking me off of it. The switch hasn’t been easy but I’m willing to see if it gets better. I don’t really see much of a choice. I’m concerned both Ibrutinib and Acalabrutinib will have difficult side effects for me, especially since I have 5 more years to work.

In hindsight I realize I felt much better last spring before I began treatment. I also understand why my CLL doc said I should wait as long as possible (there are other reasons too I know).

My spleen had different ideas though.

I AM grateful my labs look better than they have in years and that I even have choices. I didn’t think I’d have this much of a struggle with treatment.

I wonder how many w side effects or adverse reactions to Ibrutinib do better on Acalabrutinib?

Newdawn profile image
NewdawnAdministrator in reply to Zia2

As a matter of interest, did you have any history of joint/bone/muscle pain prior to starting on BTK’s? It does look as if your issues directly correlate with the introduction of the meds.

Newdawn

Zia2 profile image
Zia2 in reply to Newdawn

No, no problems before.

I’ve been on Ibrutinib for 16 months and it’s the single pill full dosage. My hematologist at the time felt that full dose was that which had been successfully trialed so at one point when I suggested a reduced dose he didn’t think that would be a good route and suggested Acalabrutinib. He retired abruptly last September and now I have a new hematologist who I have yet to have this discussion with as the one time I saw her was during a period of relatively low stiffness and pain. She did offer muscle relaxers but that is a route I’m not interested in taking as I prefer going through life with a clear head.

I’ll be seeing my hematologist next month and will try and work out a plan at that point.

SofiaDeo profile image
SofiaDeo in reply to Mprm

FWIW, the muscle relaxer Skelaxin (metaxolone) is not known to have the severe sedating effects of the more commonly used Flexeril (cyclobenzaprine) does. I use the former.

My wife have been off Imbruvica and bed riden now for 37 days. Get off it

Developed cardiac issues after many side effects that came and left . Discontinued now over 6 months and feeling great !!

Hi. I was taking Ibrutinib for 2 1/2 the bone and joint pain over time had gotten significantly worse. It was to the point I had extreme difficulty getting out if bed in the morning. I could not even inscrew a bottle if water. I told my Oncologist I had enough. I gave been off Ibrutinib now for 6 weeks and feel so much better. Its amazing.I am in the process of getting more testing done and figuring out which treatment plan is best for me.

Wish you all the best.

Ken

Mprm profile image
Mprm in reply to Kennethgt

Thank you for your reply. This is what I was wondering, if the pain might not be permanent and be relieved by a break from Ibrutinib. Getting out of bed, even lying in bed, are my worst times.

Kennethgt profile image
Kennethgt in reply to Mprm

The discomfort and pain are not permanent. You need to get off Ibrutinib. My pain and discomfort worsened over the years of treatment with Ibrutinib. There are many other new and better drugs out there now for the treatment of CLL. No one should suffer or lessen their quality of life.

Zia2 profile image
Zia2 in reply to Kennethgt

You aren’t on any treatment? For 6 weeks? Your labs are normal? I didn’t know this was an option, hence all the questions. If you don’t mind them.

Kennethgt profile image
Kennethgt in reply to Zia2

Mirning. I gave been off treatment now for more then 6 weeks. My wbc has risen very slightly. My spleen has been slughtly enlarging again. Spleen was the #1 reason I started treatment 2 1/2 years ago. My Oncoligist is awaiting my flow cemotry test results before naming any decisions about going back on treatment. He said to me that no CLL patient should tolerate any side effects that would effect their quality of life. That there are many new approved drugs out now for CLL. As a patient if you are experiencing any discomfort or problems from treatment, speak up. Make your Oncoligist aware of it. Don't suffer as I did for months. I gave no joint pain or stiffness what so ever since I was told to stop the Ibrutinib treatment.

Mprm, God bless you and others going through these side effects. I keep wondering why a drug is developed to manage an illness, but the doctors & pharmaceuticals don’t address the side effects with just as much research. I’m hesitant to even agree to any more vaccines. Seriously! It has taken 1 year to get the arm that received the flu shot to stop hurting and get full motion. That Moderna 1st shot, I got the hottest, large area rash on the injection arm, it took 10 days to diminish. I went to the ER, believing I had a blood infection! The ER doctor said he just that morning received the memo about the rash and nothing but cold compresses were prescribed. The 2nd Moderna, after a day, gave me the muscle pain I hear described here, for 11 hours. I just laid in bed and regretted having to go the bathroom. I told the doctor that maybe a person’s size should determine the dosage. I’m 5’ and 134 lbs. I’m thinking real hard about all these side effects.

I know I need the knowledge of doctors AND the pharmaceuticals, but do they also look into the knowledge of side effects in humans enough to avoid simply trying to fix them with another medicine? I suppose they can’t until we have those side effects!

I will keep an open mind to treatment possibilities, but, as I said, much thinking will be done.

Sandra👍🙂

I’ve had gout and joint pain on and off. Some quite severe. I take active cherry for the gout, and I stopped! all supplements that seemed to have helped with the joint pain. Took about 6 months to ease, and I think the pain is a good trade off to death.

It is a good thing my 2yr Ibrutinib/Venetoclax trial was ending because I WAS ending.I always exercised but not those last months.... couldn't do that anymore.

In fact I was having a hard time getting from a sitting position to standing. The Ibrutinib

attack on my knees and hips makes sense. They have the most Arthritis.. worn out

( used to dance professionally) so Ibrutinib sniffed them out.

X-ray revealed I might be needing hip/knee replacements. BUT problem solved...

Stopped Ibrutinib and I never had that pain again

Went right back to all of my exercise regimes... swimming, treadmill and Pilates.

I did deal with horrible mouth sores and I'm talking EVERY day. No meds worked.

All band aids were used to get through. On my last month my heart began to get

affected. I quickly recovered from all side effects and so glad I was able to get through.

I still love both drugs because they got me to UMRD.

It was a long love/hate relationship but I am blessed.

Catnap7

Catnap, I’m reading your message with compassion. It is good to hear you are so much better now. Sandra🙂

Catnap7 profile image
Catnap7 in reply to Phil4-13

Sandra I am just so blessed !!! Dancers and dance teachers are used to putting their bodies through the worst. I’m sure that’s why I just got used to the pain but those last few months ... Beyond Beyond I will say LIGHT EXERCISE helped me but not those last few days

Catnap7

I have been on Ibrutinib for 7 1/2 years and have suffered thru many different adverse events during that time. I have had muscle / Joint pain, mouth sores, and diarrhea. The only one that did not go away or lessen with time was diarrhea. In the early clinical trials done with Ibrutinib there were two things that they did to lessen the adverse events. One was to stop and then restart the drug after a period of time, or to LESSEN the dose. In many of those cases after they did that the adverse events became tolerable. With the reformulated version of Ibrutinb being ONE pill of 420 mg you had to ask for an option to lessen the dosage. Since my prescription calls for 3 pills of 140mg each, my medical team could easily lessen the dose. After we found the dosage combination that cleared up my adverse events I have been able to stay on it for over 7 years. You might ask your medical team about those 2 options (they might not know you can get the 140mg version) before you switch especially if your counts are going in the right direction. As a side note, Acalabrutinib is not without its own set of adverse events. Although the studies have shown that the cardiac issues appear to be much less, there are still many patients that suffer from headaches and diarrhea.

I would caution you to talk to your medical team about just stopping Ibrutinib with no immediate plan in place. There have been cases of 'tumor flare', where the Ibrutinib was actively controlling CLL, but reducing the dose or stopping it caused it to come back quickly. This is especially true if you have aggressive CLL.

ajmc.com/view/25-of-patient...

Mprm profile image
Mprm in reply to Teagle47

Good to hear from a veteran Ibrutinib user. I am hearing so many options here after asking the question. Lessening the dose was not an option with my former hematologist, but I’m working with a new doctor now and will be interested to hear her opinion on the options of an Ibrutinib vacation, lesser dose, or different drug.

Catnap7 profile image
Catnap7 in reply to Mprm

I was actually dropped to 2 pills in my trial because of the mouth sores I had a hard time talking

I wonder about dosage... I was. 100 lbs or so during trial Just seems like body weight should be considered

Zia2 profile image
Zia2 in reply to Mprm

I spoke with my CLL specialist late afternoon yesterday. She’s very concerned that I am not tolerating Acalabrutinib well and in so much pain. She asked if I felt better on Ibrutinib. I didn’t. The problems were just different. Each day on Acalabrutinib is harder. This morning I can’t sit long it’s so painful. I’m getting weekly labs and they look good except for Alkaline Phosphate rises each week and she’s concerned about that as well. I have another call with her in a week. She doesn’t want to lower my dose yet but knows we need a plan. I may chose Ibrutinib over Acalabrutinib at a lower dose. Ibrutinib was tolerable. Acalabrutinib at this point for me is not. If your interested I’ll let you know what we decide.

Mprm profile image
Mprm in reply to Zia2

Yes, please let me know.

I am almost 87. On Imbruvica 420 since 2 and a half year. Initial reaction during two month': A rash on facial cheeks. Since then only episodes of mouth sores. No other adverse reactions and feel in better shape then 2+ years ago. CBC also better but not completely normal. CMP all normal. Allergic rhinitis - a symptom of CLL existed before initiation of Imbruvica, continues unresolved. Last month' a slight deterioration of HgB down to 11.6 from previous 12.+ . Hematologist prescribed Folivane Plus, an iron + B pill to see whether that will lessen anemia . --- I exercise a bit every day since 1970 when my fasting glucose was slightly elevated. By luck I walked into the office of legendary Dr. Harold Elrick who scared me into permanent diet, weight control and jogging. When I told him: "I can't run for 12 minutes on a school athletic field to let you know how far I can go!" Dr. Elrick replied: "Drag yourself!". I remember that, and I found that when I feel sluggish and I "drag myself" up to walk, after a couple of minutes, the respiration and circulation and the mood cranks up. Thus, your condition not impeding, give a "counter attack" a try ! I now switched to walking up stairs, twice a day up to the 16th floor. It seems to produce a liberating high... (Dr. Harold Elrick: EXERCISE - THE BEST PRESCRIPTION.)

Catnap7 profile image
Catnap7 in reply to janvog

Right on. I have done the same and it works. The water exercise is best....no pain and better cardio than on land Catnap7

janvog profile image
janvog in reply to Catnap7

Yes ideal - water exercise ! But few have the opportunity.

Catnap7 profile image
Catnap7 in reply to janvog

Oh I thought most cities have Easter Seals warm water therapy pools. There is a lot of other light exercise on you tube Catnap7

janvog profile image
janvog in reply to Catnap7

Interesting to know!

Mprm profile image
Mprm in reply to janvog

In total agreement about exercise being an energizer. I walk 3-5 miles a day and it got me through those pre-treatment lows in energy. Just hope I can keep it up until I’m 87! Unfortunately, it doesn’t help with nighttime muscle stiffness.

janvog profile image
janvog in reply to Mprm

I use a massage mat, which helps for stiffness. I drape if over an office chair and activate it to massage spots of the back.

We're all different, but....... Imbruvica worked fine for me for about a long year, and I had no pain. Then I got Afib, and it ruined my mitral valve. I'm obviously biased, but I'd suggest that you talk to your doc about switching.... V seems to be emerging as the most popular drug of choice.

Gary

Ibrutinib caused serious heart issues in my case and my Cardiologist insisted my Oncologist take me off the medicine because it caused Arrhythmia and severe Tachycardia. I was on Ibrutinib for 8 months and it did miracles. My massive swollen glands completely disappeared as well as the fatigue I was experiencing. Presently the the blood numbers are great and we are waiting to see if and when alternative treatment will be required. I am curious to know how long it takes for symptoms to appear again?

PaulaS profile image
PaulaSVolunteer

Hi Mprm,

I sympathise re Ibrutinib side effects. In October 2017 when I started Ibrutinib I took the standard full dose of 420 mg daily. (3 capsules of 140mg). I got a lot of crippling side effects – some of which disappeared after a few months, but not all.

Due to some persistent side effects (rashes, stomach problems and occasional painful joints), my haematologist reduced my dose to 280 mg daily. By that time it was April 2018 and I’d been on full dose for 6 months.

Things improved after that, though not completely. By Jan 2019, I was still getting stomach problems. My haematologist then suggested I reduce to 140 mg daily.

After that, things were much better. Hardly any side effects now, and I’m still on 140 mg. My bloods have continued to improve and although they’re not in “normal” range yet, they continue to head that way.

Everyone is different though, with different genetic markers. I am IgHV mutated and have 13q deletion, with no other deletions detected. That’s reckoned to be good prognostic markers.

Another factor is bodyweight. It’s been suggested that a person needs 2.5 mg of Ibru for every kg of body weight. I weighed about 56 kg when I started Ibru, so a dose of 140 mg daily would have been just right for me. Heavier people would probably need more, and lighter people less.

I hope you find the right solution to your terrible muscle pain. Sounds to me that you probably need to stop the Ibrutinib and change to something else. But I thought you might be interested in my experience with dose reductions.

Wishing you well,

Paula

Mprm profile image
Mprm in reply to PaulaS

Thank you, yes, I think dose reduction is something I'd like to discuss with my hematologist. It was a question I had for my former doctor, as I am a slim person and wondered if weight should be a factor in dosing, but he thought not. However, I'm hearing more and more of people who fared better on a reduced dose and continued to have improved blood results

I had GI side effects. I lasted mmmm 6-8 months. And I regret being on it that long, my former onc pushed since "the drug is working beautifully." But living my life within 20 feet of a bathroom was unacceptable.

Not much to add to all that has been mentioned. I was on Imbruvica for only six weeks, with intermittent joint pain throughout. What got to me was a ruptured cyst on the back of my knee, and my entire knee area filled with blood and locked up. Excruciatingly painful. Dr. blamed the Imbruvica for lack of blood clotting. And during the stress of all that I also developed aFib. Off of Imbruvica and the aFib and joint pain went away within a few days. Took a couple months of physical therapy to get my knee strong again. I'm now on the Obinutuzumab/Venetoclax treatment, seven months in with only some mild thumb joint and wrist pain. Five months to go!

Good luck with your decision on what to do.

my wife have been bedridden now for 43 days with extreme back pain. Would not recommend this drug to anybody due to the side effects with no known cure

SofiaDeo profile image
SofiaDeo in reply to Maloncll

Sorry, but I disagree. I too had severe side effects from this drug, but won't say "don't use it on anybody." Every disease state needs options, and this drug wouldn't have gone to market if 100% of people treated got severe side effects. There are many people taking this medication who do NOT have severe side effects! It's unfortunate we don't know who is likely to react ahead of time, but that is the nature of things.

Side effects are an unpleasant reality of drugs. But IMO I would have died by now if not for these agents.

And how can you say for sure the back pain is due to this drug? From your earlier post, your wife has been on this for 3 months. The back pain only started recently, and she has been off the med for only 8 days. There are many things that can cause back pain. Why are you saying it's the ibrutinib? Did the doctor say this?

Most side effects due to drugs start shortly after therapy. We know ibrutinib can cause some things like A Fib immediately, as well as later into treatment. I am not saying it's impossible, just that it appears there hasn't been enough investigation/time to say for sure that it is the ibrutinib causing the pain. It took decades, for instance, to learn about the association of quinolones and joint problems. "We are wondering/suspicious that ibrutinib is causing this" is a different thing entirely than "the ibrutinib caused this".

And I am not sure what you mean by "no known cure." If her issues are in fact due to the drug, it can take more than 8 days for the drug to clear her system and the body to repair/reverse the inflammation or whatever was causing the problem. I know I feel like the GI issues I had from ibrutinib took a few years to completely recover from.

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