Joint pain on Ibrutinib

[WMwife]

Hi,

Does anyone else get strange pains near joints, from this medicine?

[SofiaDeo]

I did, other people have reported it too. I also had GI upset/diarrhea plus skin issues so severe I had to stop the drug after 6-8 months. Many report here that their side effects go away or decrease to tolerable levels with time.

[Jooby59]

I was on Ibrutinib for 10 months and had so many side effects. The joint pain was horrendous at times - especially through my shoulders. I was prescribed codeine but it didn't do any good.

[KevinCLLITP]

I had horrible side effects from the ‘brutinibs including severe joint pain and ending with very serious cardiac arrythmia, I feel I wasted almost two years and got no benefit. I bottomed out with a serious case of anemia and almost died, had to get a complete blood transfusion and went immediately to rituxan and venetoclax and I am not five months from finishing and hopefully complete remission.

[Lisa-1959]

Definitely! I had migrating joint swelling/pain/redness which was miserable...some days I could barely walk because something was swollen and painful...it could be my knee for a few days, then the bottom of my foot for a few days, or a toe, or my ankle. It also affected my hands and fingers...some days I had difficult typing because of a swollen finger! I also had significant issues with bruising and hematomas. My local oncologist took me off ibrutinib after I developed a large hematoma on the back of my right hand and couldn't use my hand for 3 weeks...had to have it splinted to get it to heal. Like KevinCLLITP, I was switched to Venetoclax and Rituxin...handled those much much better. After 2 1/2 years, I didn't reach uMRD, but the detectable cancer cells were only 0.02%, so my oncologist at MD Anderson allowed me to come off the med...praying for a long 2nd watch & wait!

[AnneHill in reply to Lisa-1959]

Hi, Your symptoms are very like mine. I couldnt drive because my knees were so painful and I had gout in my hands. They were curled up like claws. Everything you say about the joints being red and swollen. The pain which was roving. The stiffness. I could have written your post myself.The Ibrutinib worked quickly. My numbers have been normal for ages.

I am down to 280 mg and there is an improvement but after a 2 week break my shoulder pain returned when I went back on it. I needed an endoscopy and tooth treatment. The pain came back but settled again.

Going back to sleep after breakfast and my lethargy and fatigue along with covid are something I need to look into. My sugar is high.

Epilepsy was completely controlled by meds. They were changed because they clashed with the Ibrutinib and I started having strange feelings and symptoms of petit mal. The new drug was upped and pain killer changed to codeine.

Anne uk

[Lisa-1959 in reply to AnneHill]

My local oncologist put me on prednisone which stopped the roving pain & swelling, but as soon as I finished the course (was on it about 2 weeks), the pain returned. Initially my oncologist was convinced it had nothing to do with the ibrutinib since none of her other CLL patients had had that problem; however, I knew better! She did drop my dosage, but after the large hematoma, she took me off the ibrutinib completely. It was at that point that my husband and I decided I needed a CLL specialist on my team, so I opted to go to MD Anderson in Houston. I definitely don't regret that decision!

It sounds like you have a number of other health issues, so I would recommend you talk to your oncologist about possibly trying another med that wouldn't clash with your epilepsy meds. I don't know if that would be venclexta, but hopefully something would work for you. It is bad enough having CLL without the "cure" causing issues with other health problems.

[AnneHill in reply to Lisa-1959]

I am trying to review all my health issues and meds. When Ibrutinib first came out we thought it was a wonder drug and its hard to believe how all these drugs have been developed and become available in the uk.

For many of us it helps the cll but we have the side effects. The haematologists all seemed to say it didnt cause the pain but this site is great. We can find out if other people suffer as well. Within a few days I was in terrible pain.

I have had the dose halved and strangly after a break the pain came back. After 2 weeks back on it the shoulder and hand pain have improved.

I do have lots of issues and I have spoken about things with my gp. I cant blame everything on cll. My sugar levels have risen. That is the Ibrutinib or lack of exercise. I hope if covid numbers go down I can go out more. Its wet, windy and cold here.

The cll numbers are normal so I wont go elsewhere. I would have to stop the ibrutinib and see how quickly the numbers go up. I would get another drug then.

I have so many ailments that I could laugh or cry and at this time of year I get maudling.

[Lisa-1959 in reply to AnneHill]

When I was diagnosed in 1997, chemo was the only treatment option, so when other treatments started being introduced, it was wonderful! My local oncologist kept telling me that the longer I could wait to start treatment, the move options I would have available to me. She was definitely right, but the side effects I had on ibrutinib mystified her...had never had any of her other CLL patients deal with them. Then again, she didn't have that many CLL patients as a point of reference.

A number of folks on this site have talked about the pain/swelling/redness diminishing or completely going away over time. Mine might have done that, but my local oncologist opted not to wait long enough to see. When I discontinued the ibrutinb, my white cell count was over 400,000, so there was nothing normal about anything! The Venclexta brought the numbers down rapidly, and for me, it was much kinder to my body. Getting a CLL specialist on board versus my local (wonderful) oncologist/hematologist was a good move for me. My local oncologist has implemented all of the orders from the specialist, so it has worked out well.

Take care of yourself...

[AnneHill in reply to Lisa-1959]

Thankyou, My numbers came down quickly and are normal. If I come off Ibrutinib I have to hope that my numbers dont start moving. Its 2 and a half years since I started and if I stop taking it I wont immediately be given another drug because my numbers are good. I will wait until I have been taking it longer and then decide.I am glad the Venetaclax has worked well for you. I was told that I will get that next.

There is definately an improvement with a lower dose.

Take care, Anne uk

[Catnap7]

Yes I was on Ibrutinib and Venetoclax together for two years Third day the joint pain got me. When I got out of bed to walk it wasn’t so easy Each step felt like I was being clubbed at the knees and they seemed to have lost their mobility. I worked on them and they got better The hips weren’t happy either but I kept moving through it with light exercise (in pool also) and I was successful. Infrared sauna helped so much The mouth sore dilemma was the final reason my doctor lowered the dose The last month of trial my heart became uncooperative so I ended a bit early Three days later, off drugs was a HUGE difference

So glad I worked with the joint pain because

Ibrutinib and V got me in remission

Catnap7

[Temida]

Hi there! It was my main side effect, plus painful red lumps on and under the skin, dizziness, tinnitus (still have it) so after 6 months i stopped Ibrutinib. The good thing is that after 2 weeks of treatment my spleen shrunk from reaching the belly button to non palpable and I'm in partial remission for 8 months now. So it was worth suffering.Regards and keep well.

PS Tinnitus still there though and some hearing problems...

[Jacksc06 in reply to Temida]

I have constant Tinnitus it is very distracting, and have joint pain from the IB. I find that movement is key to relieving it.

[stevesmith1964]

Yep, had mild knee pain after about 3 months post Obinatuzamab treatment, was switched to acalabrutinib immediately I reported the pain. Since then no issues with acalabrutinib.

[MovingForward4423]

Yes, it’s one of the most common side effects. In fact today I have a stiff finger. Only one finger, but that’s typical of Ibrutinib. In my first year I had gout, followed by joint pain. Sometimes it could get quite painful. I found that exercise really helped to clear it, cycling and walking. Even when it was painful I forced myself to exercise. About one year after starting Ibrutinib the joint pains subsided.

[Maloncll]

Get off it! My wife on 420 mg for 2 years eventually hot 4 compressed vertebrae and suffered extreme pain

[thelutondodger]

Ibrutinib 4 1/2 years:

Yes both legs from groin to shins. Has got gradually worse over last couple of years. I used to jog - easily 3 - 5 K - nowadays even walking for 15 minutes is painful and slow! Exercise is a good foil - but pain remains - I just have more endorphins to deal with it!

I cycle - when the weather allows (wimpy, fair weather cyclist now!) Bought an exercise bike a few weeks ago and that really help - for a time.

I just want to come off the drug - I'm stable and I've had to come off for two periods of about a month and there was no effect on bloods - pain was lessened by week 2.

Stick with the exercise - at least it puts some feel-good hormones in your blood!

[Catnap7 in reply to thelutondodger]

I really agree !!! Light exercise, whatever it may be

[Phyllis731]

From the sound of what you all are saying, it is possible that the terrible back, joint, and muscular pain I have been having is related to the Imbruvica 420 mg daily. I have been on it since Dec 2020. In the first year, my WBC scores went from 357K to 12K (almost normal.) Now I am hovering in the 20s. So...all things considered, I will tolerate the pain since that is the only side effect and my scores are good. I am trying some herbal remedies and just started seeing a chiropractor who thinks he can help me. Saw orthopedic doc who said nothing could be done...I didn't qualify for nerve ablation. Thanks for posting your question.Wish all well and less pain.

[SofiaDeo in reply to Phyllis731]

Far Infrared heating pads are the bomb. Everyone I know who has tried it for any kind of muscle or joint ache has been helped. We even use small $40 neck ones on the dogs, instead of fancy +$100 dog ones. Granted, the number of friends/relatives who have tried it are mmm 2 dozen? but ages & conditions vary so it's at least "indicative" of potential benefit. My neighbor with CLL tried mine, then bought his own. We like infrared treatment so much, we got a Sunlighten brand Sauna that has near, mid, and far infrared settings for pain, skin improvement, etc.

[Catnap7 in reply to SofiaDeo]

Sofia, I almost bought the Sunlighten far infrared sauna and then changed my mind for one from Costco. I have had it for years, made a huge difference for me way before treatment, after and even now. It gave me a lot of relief when my nodes were big and helped my joints while on treatment. Best investment!!!Catnap7

[W00dfin]

I had knee pain once or twice a month usually in one knee. Ice packs helped.

[Hermance]

I id not get joint pains from Ibrutinib, I got neuropathies: loss of feeling in my legs. My legs get numb, or tingly. My balance was affected too. Of course, when we finally diagnosed what it was, I stopped Ibrutinib. More than 1 yr later, the nerve damage is still there, at the same level. I know this is not the answer you expected, but just a warning to this community: if your legs start to feel different in any was, get tested by a neurologist!

[SofiaDeo in reply to Hermance]

Hopefully this effect isn't permanent damage. My GI changes from the ibrutinib started clearing up after a few years. The year or so after stopping not so much, then rapid improvement over 4-5 months. I hope this happens with you, too.

[Redlion]

Unfortunately this is a pretty common issue with Ibrutinib. I reduced my dose to 140mg after tolerating the full dose for about a year by which time my blood stats were all in normal range. Nearly 3 years later I'm still doing well on it but still have side effects albeit tolerably less severe. Good luck.

[christou]

I was on this drug and experienced debilitating joint pain. I needed a walker to get around. After trials & tribulations I was switched to Calquence and have had no issues with it. It was decided that I must have had an allergic reaction to Ibrutinib.

[flippingnora1]

I have been on Ibrutinib now for 6 months. I don't get any joint pains, but every day at some time, I get dizzy spells, heart beats faster, and feel nausea. I am sure this is due to the medicine, as I have had a ECG, and everything was clear. I remember years ago taking Sudafed decongestion tablets, and had the same feeling, light headiness, rapid heart beat, so I am sure that its the Ibrutinib. I have tried to persevere, but its very unpleasant. My oncologist has said that if I go on something else, there may be other side affects. So what to do?

[SofiaDeo in reply to flippingnora1]

Just because you have side effects from one doesn't mean you will have severe side effects from another. I decided my side effects were unacceptable, others have decided theirs were tolerable. Still others have had side effects decrease after a year. I gave it mmm 6-8 months. The venetoclax I am now on doesn't give me GI problems like the ibrutinib did, although venetoclax does cause bad GI affects in others. We are all different, and react differently. You will have to decide whether or not to give more time for side effects to decrease, or not. And if a different agent gives even worse side effects, you can likely go back to ibrutinib or another BTK inhibitor. A number of people here also having problems with ibrutinib have no problems with acalabrutinib, or zanibrutinib, so we can't simply say "oh one BTK inhibitor will give me the same side effects as another."

And FWIW, my local hem-onc at that time pushed me to stay on the ibrutinib "because it was working so beautifully." But quality of life is very very important, and IMO the best clinicians won't push to keep you on something that makes you miserable, unless there are no other options. They may say "give it a few more months", but won't ignore your concerns. I don't use that doc anymore. Only good thing about that whole experience was, I kept searching and finally found a CLL specialist I adore!

[Cgolen99]

Yes, I started ibrutinib in 2018. Joint pain and swelling was extremely severe after 5 days that I ended up in the ER. Then off the full dose for 5 days and on prednisone to get the swelling down (arms, legs, everywhere!). After 5 days I was dropped from 3 capsules to 1 capsules (140mg). I am still on that dose. I still have swelling and pain in joints but not nearly what it was, that I treat with occasional prednisone if it is particularly bad for a couple days.

[MV29]

Yes definitely joint pain. Had to have a knee replacement recently and taken off Ibrutinib for 3 weeks for surgery. Side effects went away, then returned when had to restart.

[deesil]

I have been on Imbruvica for about 4 years. I have pain in my knee, but can't say for sure it's coming from that or whether it's just arthritis; the evaluation of my knee is that the arthritis "doesn't look that bad." I've been riding a stationary bike for half an hour a day for months and that may help. The pain is usually worst at night.

[Newdawn Administrator]

I was on Ibrutinib for 15 months as part of an I&V trial. Eventually they took me off Ibrutinib as my joints and muscles were suffering so severely. Having pre-existing arthritis, it’s always been difficult to say where one began and the other ended. However, it’s clear the Ibrutinib had a very adverse effect on my muscular skeletal system. My GP detected a massive rise in my CK levels (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.)

I had excruciating cramp too but in fairness that has continued in a milder form once I came off Ibrutinib. The problem during that time was an inability to take anti-inflammatories to keep things stable. However, I tolerated Ibrutinib because it actually works! I continued on Venetoclax monotherapy.

I’m now thankfully uMRD but have been left with very significant muscular skeletal problems and spinal stenosis in my back. My hands are very affected and some fingers have increased 6 ring sizes. I can’t make a fist in either hand.

I firmly believe that people with pre-existing joint and muscle issues do seem particularly pre-disposed to more extreme reactions to Ibrutinib which tend to be more than the transient, passing reactions. Others work through it but the affected areas can be remarkably random. I’d have days I couldn’t walk because of severe pain in a knee and the next day I could tap dance on it! It was very odd in presentation.

Interestingly my CK levels started to come down once I came off the drug which demonstrates it was indeed destroying my muscles. A positive is my glucose levels were brilliant whilst taking Ibrutinib! 😉

Regards,

Newdawn