CLL Support Association
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ibrutinib and swollen hand/forearm

My father has CLL and has been on ibrutinib for about 6 months. He noticed some swelling in his wrist/forearm a few weeks ago. He had a doplar and all is clear. A few days ago his hand and forearm really started to swell. He saw his GP who is sending him for another doplar - and also left a message for his oncologist. Is anyone aware of this being a side effect of ibrutinib- if so- what is the recommended course of action?

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I had swelling and pain of my hand/wrist on Ibrutinib but yours doesn't sound similar. Mine was very painful, came quickly, over a couple of hours and went over a day or two later.

Hope you can get it sorted out soon.

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Thanks for the reply. This does seem different as it seems to be getting worse over time and not better.

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When I first started Ibrutinib I had migratory joint pain. This was accompanied by inflammation. I also had whatever my wrist/hand and several other areas. As jm954 stated it came on quickly and resolved within a couple of days. I actually saw A orthopedic hand specialist and he assured me it was not in the joint. I looked long and hard for a reference to this type side effect and I did find migratory joint pain with inflammation somewhere but I was unable to find it again to show my oncologist. Thankfully it resolved after a few months and I have not had that problem again. I hope that helps, btw, when I had it I treated it symptomaticly.

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We're both the doplars for clots. There is a different one for venous insufficiency. Has that been considered? Hopefully this is something that will resolve on its own. I had impressive swelling of the lower L leg several years ago. Clear for clots, but a second doplars showed vein leakage. I sometimes get some edema, but haven't had swelling like that again.

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Yes, I was hospitalized for 9 days last year for swollen left hand to the point of bubbling skin almost breaking. Went to Walk-in Center who thought blood clot, sent for US, negative, wasted another 3 days before went to Hospital ER where they admitted me. They thought maybe cellulitis and blood cultures negative, treated with massive IV steroids and Vancomycin from which I developed Red Man Syndrome - all over red body rash. Very nasty event. Eventually the hand resolved. At that time I had started Ibrutinib 140mg once a day for 4 days when the swelling started, took it for a total of 7 days. Med stopped for > a year. I was 73. I am now taking 140mg every 3 days. Going to Dana in June for further advice. Hope this resolves quickly for your Dad.

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Oncologist says that she has never heard of this happening on ibrutinib. I am an odd case!

I have similar symptoms to you. Woke up with swollen left hand...10 days oral antibiotics...2 days in hospital...10 days IV antibiotics...10 days with oral antibiotic. Hand resolved then arm swelling and red.....10 days oral antibiotics. Had x rays, ultra sound lots of blood work and nothing showing unusual! I was coasting along on Ibrutinib for 2 months and feeling wonderful. Hope to get this mess cleared up soon!

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My dad still has the swelling. They don’t know what it is for sure but are going to treat as lyphodema for now and try compression therapy.

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Hi Joyce. You are not an odd case. This happened to me in 2016 after one week on IB. I was hospitalized (in the U.S.) for 9 days. They thought infection or cellulitis but it wasn’t either. Please see my prior posts on the issue. My left hand swelled up as big as a boxing glove. I had massive IV steroids and antibiotics. It finally resolved. In the Fall of 2016 we re-started IB at one every 3 days with incremental increases over a few months. I have been on IB at one every day and two every other day for aboyt 13 months. Last week I developed a blurry right eye with some pain, double vision and constricted pupil. MD stopped IB and ophthalmologist started Prednisone eye drops and another eye drop. Will see retinologist Monday. Best wishes to you. Stay strong.The road ahead is fraught with many curves but as long as we face them all with knowledgable providers and peer support we will do well.

Carole

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Thank you for your very kind thoughts. I am beginning to see a light at the end of the tunnel. Fortunately I have an excellent oncologist/hemo. and she is willing to "think out of the box" and is confident that when this current event is resolved I will be able to resume Ibrutinib. I will keep your dosage schedule in mind and suggest to her that I follow your lead.

I am so thankful to have found this group.....wonderful people!

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Hospital clinic visit to-day. "Experts" now agree that this is not cellulitis. The explanation was that if it was an infection it would have resolved with the large amounts of antibiotics I have taken. I was told to "watch it" and if it gets any worse to go immediately to Emerg. at hospital. On the way home I stopped into the drug store and bought some antihistimine (allergy) tablets...don't know if they will help but I am going to give them a try....not prescribed.....figured that it wouldn't hurt to try!

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Hi Joyce. I was on IV steroids which eventually made a difference. My hand was so swollen that fluid was about to leak out of the tissue. There were no breaks in the skin. It took a long time to resolve. If you are not improved, perhaps your doctors will consider steroids. Best wishes.

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Went to cancer centre to-day...I have a standing order to have blood transfusion if hemoglobin falls below 70. I was amazed that my numbers are "good"even though I have been off ibrutinib for over 1 month. Hemo 90 (I started at 61)leukocytes 7.8 Platelets 254.....so everything seems to have stalled to the good! Arm is still red, tender and swollen. I am hopeful that when this "arm" problem resolves I can go on a reduced dose of ibrutinib. I did mention steroids to the emergency docs but they were hesitant because they are not familiar with CLL. Will be in touch with my hemo/oncologist and ask her about a short burst of steroids :-)

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Joyce.. run every drug past your CLL doctor ... antihistimine particularly... even if you are not on Imbruvica (ibrutinib)

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Thanks Chris.....I took 2 Claritin pills, then got to thinking that I should check with CLL doctor before I self medicate. I left a message with her secretary waiting for a reply.

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Hey!

Been on Imbruvnica for 4 years. What I have learned is the bad effects will change from time to time. Stiff, joints that hurt, then a few days later, it would pick another joint or muscle, I have had bad burning bright red bumps, on extremetys ,cold water helps this for several hours. My nails have split and become soft. Now my hands, wrist or finger s will swell, this lasts for 2 or 3 days, then moves on. You know, I don't care anymore what side affects I have. I accept them s I am happy to have this med that is keeping me alive.

Quit going to the DR. when things arise ,waste of time, as I know what it is.

Quade

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Will this swelling ever end??? Arm is still red and swollen, not exactly painful but a little uncomfortable when I lean on it! Now long before this resolves...anyone any ideas?

I'm anxious to get back on Imbutinib because apart from this darned side effect I felt so much better when taking the drug!!

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Are you still she getting IV antibiotics Joyce?

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Hi Chris....No...they took me off all antibiotics.The Internal Med (chief) said that after all the antibiotics I had been given any infection can be ruled out. The thought is that it is caused by ibrutinib, I am a puzzlement (his words) :-) My kidneys are not "happy" I am having the usual gastro explosions caused by antibiotics and I am trying to keep hydrated with drinking lots of water. GFR of 11 is getting dangerously close to kidney failure!

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Oh Joyce my goodness.. I'm so sorry to hear this. I'm puzzled too, because Imbruvica (ibrutinib) should be long gone... they have ruled out MRSA?

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They did all kinds of blood work......couldn't find anything.....puzzlement. I'm thinking this is an auto-immune response? I'm beginning to "fall down the rabbit hole" feeling much as I did before I started imbruvica . tired :-(

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Imbruvica (ibrutinib) doesn't hang around it is gone in about 12 hours, but it might of set up some chain reaction... Did they do a skin biopsy, tissue...?

I'm down the rabbit hole so I will catch you... 🐇

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They didn't do a biopsy....x-ray, ultra sound and masses of blood work. They were happy to tell me it wasn't "flesh eating disease" :-) ...Hand where it started is fully resolved....arm was a later arrival. :-)

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joyce - my dad still has swelling of his arm and hand but it seems to be going down. for about a week now he has started compression therapy - they are treating it as lymphedema - as they ruled out infection and clots. my father has to wear a compression sleeve/glove constantly- and for an hour a day he uses a compression type machine that sort of massages his arm/hand. he said that the swelling seems to be going down. he is supposed to do this for a month and then go back for a recheck. he is currently taking imbruvica - full dose- 3 pills.

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My arm is still running hot and a bit red and swelling continues......I'll ask about compression therapy....happy to see he is back on imbruvica. There is hope :-)

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Finishing out the c-dif treatment and going back on imbruvica on Monday at full strength. Arm is still swollen and a bit red, not exactly "painful" more like an annoying ache. Keeping my fingers crossed that this is just a bump in the road....before this the imbruvica was doing a brilliant job and I was feeling great!

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that sounds like wonderful news!!!

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Has your father, or you, Joyce, seen a nephrologist (kidney doc.) - hopefully one who is familiar with the possible connection between CLL and the kidneys. A urine test for protein / creatinine ratio or a 24 hour urine would indicate whether protein "spilling" is an issue. Message me (chat) if you have questions,mas this post is not locked.

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Hi....I'm under the care of a nephrologist. I underwent chemo/radiation for colonrectal 12 years ago and the chemo (oxiliplatin) hit my kidneys and did some damage. I see nephroloigist every month.

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could protein "spilling" be related to the hand/arm swelling?

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Still suffering from diarrhea. I'll spare you the details but suffice to say I am in close proximity to the "thunder-bowl" at all times. Had this same problem 2 years ago after multiple antibiotic treatment, and it took me weeks to recover. Oh well in the words of Rosanna Danna.."Never mind" :-) Just trying to keep my fluid intake up and spare my kidneys!

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are you taking a probiotic? that can help with diarrhea when antibiotics flush even good bacteria from your system.

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Yes....I'm eating yougart with probiotics. I'm not drinking tea or coffee (getting cranky) from lack of caffiene :-) This too will pass.

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Joyce, please be careful about probiotics., they can quickly turn nasty and cause sepsis... its rare but we share the same issue beside CLL and I have researched this extensively.

Here are some references, from a few years ago

healthunlocked.com/cllsuppo...

Probiotic is a very real risk for you and me... Imodium is a safer control.

~chris

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Thanks Chris....I will stop the yougart. I'm not taking anything in pill form. I have taken lots of immodium which is my usual old "stand-by" but this time it just isn't helping. I have a standing appointment with the cancer clinic (anemia check) in Monday and I will mention and see what they suggest. I have pretty well given up on seeing a GP and find that going to the hospital it the best way to go for attention.

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Yogurt is good, its the probiotic yogurt that have bacteria and fungi added that you need to be cautious about...

Recent study in Canada found also store bought probiotics yogurts are lacking... in bacterial content.

Need large amount of some brands... and remember they are talking about healthy people, not CLL and not other issues..

cbc.ca/player/play/92491424...

~chris

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Trying to think outside the box here. Has either patient had an ultrasound to rule out something like venous insufficiency (leaky valves)? It is different from the one used to look for clots and can affect just one limb. I first read about it in the Health magazine from one of the local hospitals.

Kidney issues can cause bad edema (swelling), but I would expect that both sides would be affected, and legs rather than arms. I'm not a medical person. Happy to discuss this more in chat or a locked post. I don't want my friends or business associates finding my personal information on google, and some here have had that experience after replying to Unlocked posts.

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Update...All the antibiotics have given me c-dif. I have quarantined myself at home. Lucky I have an en-suite bathroom of the bedroom so not using the "family" loo! I am again on antibiotics this time for c-dif.

I have an appointment with hemo/onc on 6 April....don't know if I can go...may have to cancel....clinic is in the hospital. Would not want to infect anyone else :-(

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Are you on vancomycin Joyce? Isn't the worst tasting stuff you have ever had... 😩

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No..they put me on Flagyl. Being that I have had a reaction on other antibiotics they decided try the least potent first and go to the "big guns" if I don't feel any better. Now all this being said to-day is the first day that I have been able to leave the house. Managed 2 hours without having to rush to the closest bathroom....things look promising :-)

Arm still swollen and I am sure it is edema because it makes big dents and dimples if I press on it.

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