Has anyone with CLL on Ibrutinib suffered with this? My mum seems to be getting one side effect after another. She is on a second course of anti biotics (currently stopped the ibrutinib) and there isn't much improvement?
Her Macmillan nurse has warned about sepsis and to keep an eye on her symptoms?! This is terrifying. I know people can suffer with brittle nails on ibrutinib but this infection is menacing and messing with her blood results. Just as she was starting to do ok. It's been a bit of a journey with one thing and another. Is it normal to have so many hurdles with this drug?
Thank you in Advance
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mouseygirl
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Was there a test run to see if the infection was bacterial or fungal? Antibiotics will not work for a fungal situation.
You may have already read about Paronychia, but just in case, the following site might help you in helping your mother--You are a good daughter to be trying to keep all sorted. I hope it can be gotten under control soon and the information of how it can happen might help to not have it keep happening.
I find that I get mild situations of Paronychia (and have not known it had a name before your post). My situation is hang nails and I will being much more careful to deal with those from now on. I am not in treatment, so can't speak beyond what others have stated in regard to Ibrutinib.
Thank you for the reply and the info. I tried to find information on this sight. There is a lot of info about nail side effects but not this particular condition. It is a bacterial infection unfortunately as her white cells are elevated. Her team are quite concerned that it is not improving which in turn concerns us. She is seeing her DR on Wed.
Yes indeed, look after your hands. Thank you again for the reply
Excellent article. Thanks. I was prescribed initially with an antifungal called Fluconisol. The side effects were quite amazing - I suspect a reaction with the inbrutinib. I discontinues the pills.
I’ve found that soaking fingers in 50/50 hot water with apple cider vinegar was very soothing and seemed to help the healing process. Best wishes from Mary
I am 86 and my hands are those of a mummy. I wear white cotton gloves all day, even for computer. For housework and personal cleaning I additionally wear nitrile or vinyl medical gloves OVER the cotton gloves. I also wear arm protectors from above the elbows to covering the hand below the fingers. This avoids scratches or cuts that may provoke infections. (The white gloves are on Amazon - several dozen in a box for $ 20. Can be changed several times a day and laundered. ) I apply cream on my hands for the night and then wear white gloves and arm protectors over the white cotton gloves also during the night.
Sorry for my late response to your post, but I hope it is of some help as I had a lot of problems with finger infections too whilst first on Ibrutinib.
I've been on Ibrutinib for 4 years and soon after starting on it was getting frequent finger infections, which I'd never had before ( I was diagnosed with CLL in 2010 and immediately was treated with FCR and then BR in 2015). The infections would frequently start to 'track' up my arm, past my elbow when I knew I had to get antibiotics quickly. I'd also get Pompholyx (dyshidrotic eczema) on the ends of my fingers, which would get infected in the same way. I'd never had any type of eczema at any point in my life before until I took Ibrutinib. The type of eczema was diagnosed and confirmed by a dermatologist.
Eventually I was put on Azithromycin, an antibiotic which is taken Mon, Wed and Fri each week. I've been taking it for a few years now and it has worked brilliantly at stopping any eczema and any infections - I've had none of either since. I've not had any issues with taking it and it's changed my life as far as the infections are concerned! It was a constant worry and battle trying to prevent infections, but inevitably I'd lose the battle. Other than that, Ibrutinib has been fantastic for me, with no other side effects apart from diarrhoea for the first few days, and my blood results are fine when I have my 3-monthly check-ups. Saying that, my immunoglobulins are low though, which is probably part of the problem.
Actually, I've just remembered I had a constant issue with inside my nostril on one side too, which would never quite heal, but since being on the antibiotics I have no problems whatsoever with that anymore. It was minor compared with the finger issues, but possibly related in some way to my ability to fight infections.
So for me, Ibrutinib + Azithromycin has been a winning combination.
I hope my experiences are of some help to you and your mum - good luck!
Apologies too for only getting back to you now. Your post is SO helpful. Thank you.
Yes my mum has had this for over a month. We saw her team yesterday and they are trying some different antibiotics. My mum additionally takes another antibiotic like you on Mon, Wed and Fri but this one is not appropriate for this type of infection apparently. But it's being really stubborn.
They are reviewing her again in a week.
Really glad to hear of your positive journey on Ibrutinib. And thanks so much for taking the time to reply to me,
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