Just wondering if anybody else has to have regular Pentamidine by nebuliser ? I have SLL, and have been taking Ibrutinib for 2.5 years. Unfortunately I am allergic to various medications including Septrin (cotrimoxazole), which is why I have to have the Pentamidine to prevent me getting infections. I’d be very interested to “compare notes”
Hi @Grannajan. Hoping somebody will be able to share their experiences with you
Hi @Grannajan no I am not but I am also allergic to Septrin or I was about 45yrs ago.
I have not heard of it for years and nurses have been known to have to look it up.
Take care and I hope others can help.
Yes I had pentamadine for a year. I was having FCR (for SLL) and became neutropenic. I was taken into hospital with a chest infection and then subsequently had the pentamadine monthly. It’s not the most pleasant experience but it’s very doable.
I’ve been having it for over 2 years now - with no end in sight. I think as long as I’m taking Ibrutinib I will have to keep having the pentamidine . As you say, it’s not the most pleasant experience, but as I haven’t had any infections at all (touching wood) I suppose it’s worth it
I had to have pentamidine monthly for 6 months after my stem cell transplant for acute myeloid leukaemia. I am also allergic to septrin, and thus the pentamidine by nebulizer while my neutrophils were low.
It doesn’t taste very nice - bitter on the tongue - and takes a lot of time to inhale. And then there’s all the lung capacity tests before and after, and the palava about being alone/in a special clinic to take it, because no one else must inhale residue. And I had to travel to a hospital 2 5 hours away to have it. Not my favourite drug/procedure! But I didn’t have any nasty side effects from it. Have you? I hope not. But I suppose just going through all that palava every month for an indeterminate amount of time is bad enough. I hope it isnt forever for you.
Funnily, every time a medic has asked me if I am allergic to anything, I have always parroted Septrin (I had a bad allergic reaction to it when I was 10) and they have often said, ‘That’s an old antibiotic - we rarely use it anymore, so don’t worry.’
Typical that I then get one of the few illnesses and need one of the few treatments (stem cell transplant) that require the use of Septrin! Sod’s law, eh? My transplant consultant actually spat a few choice Anglo Saxon words when I informed her. And she did say it would be a pain for me, because the only other option was the pentamidine by nebulizer.
Anyway, I hope the pentamidine is not making you ill. And I hope you are faring ok otherwise with the SLL.
All the best.
I am the same had Stem Cell transplant Jan 2021 and had to take Pentamidine as I am also allergic to cotrimoxazole it put me in resuscitation for 12 hours not pleasant.
I stopped it just before Christmas after having for almost a year.
Relatively simple procedure, agree on the test quite bitter and made my voice to talk for the next 12 hours a bit strange and my throat a bit sore but then all good. Improved my lunc capacity a lot, but towards the end my pre test and post test had little to no change.
Hope it’s going well for you.