Had a face to face with my haematologist today, first time in 2 years. One point of conversation was that patients on Ibrutinib are now recommended to a received Septrin (cotrimoxazole) or a pentamidine nubliser.
Any one else in the UK received the same advice or on Septrin/Cotrimoxazole.
Robert,
This came out as a result of the Flair trial with pneumonia and shingles appearing in a higher amount of patients than expected. I am not on the Flair trial but as soon as I heard this I demanded Septrin and Aciclovir, and I was given. So it’s good your Consultant is aware, but might be worth asking about Aciclovir as well, unless you are going to have the Shingrex vaccine.
Colette
I didn't also know about the Aciclovir!
I demanded it because I had a previous mild case of shingles. It’s often caused by stress, so how laid back are you ?Forgot to say that like Paula I started getting itchy skin and also stopped.
Colette
I was on ibrutinib until recently. I had received no such recommendation. This article is from a couple of years ago, but you might find it informative. mdedge.com/hematology-oncol...
Hi Robert, Lots of people on Ibrutinib are prescribed Septrin as a prophylactic, and have been for some time.
Four years ago when I started Ibrutinib, I wasn't given any prophylactics. Then a year or so later they told me they were now being given, so I was prescribed Septrin (cotrimoxazole). However, I soon developed persistent nasty rashes. As this can be a side effect of Septrin, I was advised to stop it. After that, the rashes soon faded away.
Paula
When I was on Fludarbine back in 2001 I developed a nasty rash from Septrin, hence when on FRC I had Pentamadine.
Hi I am on ibrutinib, 3.5 years now. I am on septrin which I believe became mandatory just prior to me starting on the trial. It is to prevent infection and has worked well for me. Ann
Yes it seems to be part of the Flair protocol to prescribe prophylactic antibiotics and I’ve been on co-trimoxazole throughout. They’re also given as an alternative to IVIG and have been positive in preventing respiratory infections for me. Sadly however, I also suspect they’ve caused gastric issues and I wouldn’t like to imagine what my gut biome looks like!
Newdawn
Same for me Newdawn. I try not to think about it.An
I’m on ibrutinib and valacyclovir. Dr Wierda at MDA has never mentioned a prophylactic antibiotic.
I was on Bactrim while I was on chemo years ago though.
Hi RobertCLL,
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The use of prophylactics to prevent both bacterial and fungal pneumonias is a continuing debate. If you have a history of frequent respiratory infections or a low CD-4 T cell count then a conservative prophylactic might be recommended by a CLL expert doctor. Fortunately Bactrim DS / Septra/ Co trimoxazole / Sulfatrim (trimethoprim, sulfamethoxazole) is used to prevent both bacterial and fungal lung infections.
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Here are links to both sides of the debate:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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Len
Yes. I reacted badly to Septrin. I had an awful itch, which turned into a white pimply rash then a red spotty rash all over my body. The rash eventually went, but the whole-body itch, for which I am still receiving treatment, remains over two years later. I hope you avoid that - I don’t recommend it!
My septrin reaction was not as bad as yours. From memory only lasted a few months.
There is an alternative called Atovaquone- a weird looking bright yellow liquid webmd.com/drugs/2/drug-6077... Len
Yes indeed. I was put onto pentamidine by nebuliser as an alternative too. All a bit of a fuss, but it did the job.
Hello.I don’t know if this relevant, but when Paul had FCR in 2015 he was prescribed cotrimoxazole and it caused him to have incredibly itchy skin… I don’t mean just a bit… it was astonishing… all over his body… it was pretty miserable, so they stopped it and he had to go into a room each month and have inhaled pentamidine instead.
He is currently on the Venetoclax ramp up journey.
He also takes Aciclovir daily, because he had severe shingles a few years back.
I hope that helps.
Stay safe, Fran 😷
Hi. I have been taking Co-Trimoxazole along with IB since i started on it around two years ago. I take two 480mg tablets twice a day two days a week.
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