I have been on ibrutinib for two years and the results have been amazing - no lymph nodes, blood work within limits. However, I am getting rashes regularly, have fairly severe knee joint pain and fingernails splitting. From what I read from others these are all symptoms of ibrutinib side effects, and that switching to acalabrutinib may solve the problem with no loss in protection.
Are there any ramp up, or periods in which all pills should be discontinued during the change over? I'd be interested in any suggests to make a smooth transition.
A side note for other who have the problem with splitting nails - I have found putting glycerin on the nails twice a day can help.
Thanks - Dan
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I had increased skin rash on Ibrutinib / Imbruvica in 2015, and pausing for 4 weeks then restarting proved that Ibrutinib was the cause.
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We stopped all treatment and then when I progressed we started Venetoclax mono. Now 6 years later on Venetoclax, I recently added Acalabrutinib / Calquence without a noticeable amount of rash.
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However I am also using photo therapy / light box treatments of narrow band UVB rays to control the low level rash I've had since 2006.
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This is a good question for your specialist, as there are two opposing considerations. It's normally best to stay on a BTKi treatment (so no pause between changeover) in order to reduce the possibility of tumour flare occurring. However, given your rash is considered to be a possible side effect of ibrutinib, discontinuing ibrutinib for a week or so before starting acalabrutinib might be appropriate.
Thanks very much for the information. I'm meeting with the government medical system oncologist on Tuesday, so am going to present the information to her. As I broke ground in Costa Rica by getting the government to pay for my ibrutinib, it seems the medical people have a limited knowledge of the effects and options, so I've put together a package including the study between the two. Hopefully if it doesn't improve things I can go back.
Another consideration would be if they would pay for a switch of meds. I had to sue them to get them to pay for the ibrutinib in the first place!! I can smear a lot of anti-itch stuff on for the price.
This is really a question for your CLL specialist, but in my case, I was switched from Ibrutinib to Acalabrutinib for similar reasons - terrible side-effects from the Ibrutinib which included bone and joint pain and AFib to name just a few. My doctors had me stop the Ibrutinib and wait 4-6 weeks for a "wash-out period" before starting the Acalabrutinib. Those side-effects went away - but then I developed new heart problems almost immediately once I started the Acalabrutinib (PVCs and bigeminy) so I'm currently off all treatment while we get my heart problems under control, then my doctor is suggesting Venetoclax and Rituximab.
Thanks for the information, Tim. I'm sorry to hear about the negative effects of the acalabrutinib. I sure hope you settle into something that keeps you going with no side effects.Dan
I had some serious itching hives before I started ibrutinib, but they stopped with the drug. I now have seriously dry hands: fingernails and fingertips splitting—especially in winter. We now run humidifiers in all the rooms, and that helps. I’ll try glycerin.
Try Biotin supplement for your nails. It is really painful when they break low down. Some on this site suggested it. It worked for me. It takes a while but worked. It hasnt come back but I am going to start again because my skin is dry and itchy. Good luck, Anne uk
Another thought might be a reduction in dosage of ibrutinib to see if that helps with with the side effects. I've been on a dosage of 140 mg for over 2 years and it has helped with my side effects and has kept all my numbers in check.
Thanks, rubberlegs68. I'll try dropping in to 280 until my next blood test. That would be less drastic than a change to acalabrutinib - I've read on this site some problems with it as well.Dan
Glad you are doing well with the dose reductions. Mine were initiated by my oncologist in response to low neutrophils. I doubt he would have been pleased had I have done it on my own. Interestingly I recently had a big drop in neutrophils again but it was determined to be caused by taking antibiotics. They rose back up after a few weeks.
Hi again. I have an appointment with the oncologist on Tueday, so will bounce the idea off her. I go every 3 months, so would like to give it a 3 month try.. I'll sent off a note after the next 3 monthly blood test.
I'm really glad to hear your neutrophils are back up and you know why the went down. I'm going to test the dose reduction for three months and see if there is any major changes. Dan
Hi moty - My side effects are not truly serious - the broken nails are not a problem since I started putting glycerin on them. the painful knee joints are a nuisance but not immobilizing but the itches are the worst - tough to sleep. I'm going to cut the dose to 280 mg for three months and see how that goes.Dan
I switched to calquence a year ago. I also had several splitting of nails and frequent & painful mouth sores. Since the switch I have no side effects. I’ve notice my BP dropped back to normal also, which was usually in the lower side. I did have severe headaches the first week and missed three days of work, but they faded after that week and it has all been positive since. I did have bloodwork drawn frequently to check levels those first few months. Good luck to you!
Thanks, Mamayoda. I'm really please the change worked well for you. I met with my oncologist today, and she agreed with the drop from three 140 mg pills per day to two. I'll get tests again in a bout 2 1/2 weeks and see if there are any changes.For the first time today my BP went high. I've never had an abnormal reading before.
Has anyone’s eyes been affected by the treatments that cause dry skin and cracked nails? I had a bad reaction to a proton pump inhibitor for heartburn that made my eyes painfully dry, gave me blurred vision and eye pain. I am hoping that maybe I can start treatment with something other than the ibrutinib.
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