Experiences with

Ibrutinib

Been taking ibrutinib for 5 yrs. Now in permanent AFib for 2 years. What replacement drug is better than ibrutinib to reduce risk of having AFib? Tx Bob C

From [i]Hair and Nail Changes during Long-Term Therapy with for Chronic Lymphocytic Leukemia[/i] https://pmc.ncbi.nlm.nih.gov/articles/PMC6415534/ [i]Ibrutinib covalently binds to the cysteine residue at the active site of BTK.1 Since cystines are critical for nail hardness, ibrutinib-induced

My haemotologist intends to prescribe an alternative to allopurinol, but Ibrutinib will continue. Lessons learned.

Stopped ibrutinib 22/5/24 - in remission (was on captivate trial). My ALT has always been around 20 - normal range. Latest bloods 59. Anyone have any ideas if relevant to cll or just stopping ibrutinib? Don’t see Doc until Xmas. Thanks

As mentioned in an earlier post, my mother will start Ibrutinib next week. I read about side effects such as bleeding, high blood pressure and heart problems. I'm worried about that. What are your experiences?

Today our doctor suggested a second line therapy for cll Venetoclax combined with immunotherapy.My husband took for 6 years Ibrutinib but now unfortunatelly the disease relapsed.What do you think?Thank you.Mu husband has cll with 11q deletion

My mother is going to start treatment with Ibrutinib. However, she also takes carbamazepine. Does anyone have experience with this? The specialist will consult the neurologist before starting. But still a question here ... Thank you again for answering me.

I took a daily low dose aspirin before I started ibrutinib in 2019, as I had had a TIA in 2013. Once I started ibrutinib, it sufficed. I am withholding ibrutinib as I always do for a month, two weeks before my covid shot, and two weeks after. Of course, my doctor knows.

Additionally they showed a slide as part of the presentation which showed the ‘off target hits’ between the three BTK’s and ibrutinib had the highest number. This all made us a bit nervous.

I’ve just completed three cycles of Ibrutinib and commence Ventoclax very soon. I’m also on a prophylactic antibiotic as my immune system is atrocious im struggling with working out the balance between having some quality of normal life and avoiding infection.

I am seeing consultant next week and having bloods taken after finishing 15 months on Ibrutinib and venetoclax. Should I be asking for any other blood tests other than FBC?

I took my last doses of Ibrutinib and Venetoclax on 31st October 2024, exactly 6years since my very first dose of Ibrutinib which was on 31st October 2018. It's been a long journey however I am so grateful to have been given the opportunity to participate in the FLAIR Trial.

I have been on Ibrutinib for 4 and a half years. Their computer question is : Is there any further treatment planned. If I answer that I am on permanent treatment, they will not insure me. If you put street on FURTHER, I could say no, although I will be on it until it stops working.

I have been taking Ibrutinib for almost 5 weeks Pembrolizumab for 2 via IV. My doctor said if I end up in hospital it’s most not working. Do anyone have a suggested alternative? I have the ritchers syndrome mutation Thanks

I’ve been on Ibrutinib for four weeks together with antibiotics etc. over the last few days I’ve developed massive wind in the early afternoon. It starts with a few chords in my tummy and develops to a full concerto. Associated heartburn and indigestion quickly manifests.

I am just coming to the end of 3 months of 15 months Ibrutinib and start 12 months of Venetoclax in pill form later this week as a day patient initially.

I received ibrutinib as my first therapy and was referred for a hematopoietic cell transplant. In 2021 I got remission and was happy. But in 2024 I started having b symptoms and yesterday I got the answer that I have 0.8% residual disease in my blood. I am broken.

I will be coming off Ibrutinib for about 2 weeks. I would love to hear from any of you who have had similar surgeries while having CLL. Thanks!

I have a sealed Ibrutinib bottle that expired in 2021. Worst case scenario could I safely use this to tide me over until I can get home and pick up my new prescription? Thank you in advance .

I'm 4 months in to ibrutinib treatment and feeling much worse than I did before starting treatment. I've been experiencing multiple fissures on my fingers. one of which got infected and has now settled in my bone. If the next 6 weeks of antibiotics don't clear it then it's hand surgery.