Dr Guilherme Perini's study of PJP and fungal prophylaxis deduced that it is probably not needed in ibrutinib treated patients.
Prevalence was 3.4% in patients not receiving prophylaxis and 0% in those that were. Stated that 3.4% falls below the 5% threshold for prevalence in the susceptible population. Calculated that 42 patients need to be treated to prevent one case of PJP. Practice varies through different centers.
Thank you so much for all your recent information Jackie,
But to my untrained mind should I stop worrying about stopping Septrin because it appears ( jury still out ) to have been the cause of my itching. Hard call itching or pneumonia ⚖️ . Will be another worry to put on the back burner 🙂 hopefully.
It looks like you shouldn't have too much to worry about if you stop in terms of pneumonia but the itching is probably a real nuisance. Having said that PJP can be hard to treat .......
I am slightly concerned about stopping the Septrin but it seems strange that I still have the itching ( though slightly improved ) so long after stopping. Waiting for Dermatology referral to see if they have any bright ideas.
Yes had a fabulous time. Sorry not to meet up but I am a non driver, so reliant on others. Went to Aldeburgh, Southwold, the abbey in Leiston , Snape and found the most amazing pub called The Unruly Pig in Woodbridge.
I have never been given antibiotics to take along side Ibrutinib. I did ask the question and told not needed. The study confirms this but I still worry (I know).
My doctor was happy for me to stop the Septrin (when I got rashes), as I was considered "low risk" for PJP. My neutrophils were fine and lymphocytes were high.
For someone who has very low neuts and lymphs, and tolerates Septrin well, its a different scenario.
I had to ask why patients on Flair trial were and I was not ? I was especially keen to get the prophylactic dose of Aciclovir as I have had Shingles before.
Might be worth asking again if you have any concerns.
When I started Ibrutinib two years ago, I wasn't prescribed any antibiotics or antivirals. I was having Ibrutinib as a second treatment, not as part of a trial.
About 7 months later, one of the doctors noticed that I was NOT on Co-trimoxazole (Septrin) whereas people taking Ibrutinib on the FLAIR trial were. So he decided to prescribe Septrin for me.
Very soon I was getting rashes, so they said I could stop the Septrin. They said I was at low risk and probably didn’t need it anyway. (My neutrophils were fine and lymphocytes were high.)
So, that was my experience. It took several weeks for the rashes to clear up though. I hope your itching/rashes soon ease off too, Colette.
Like you, I would be more keen to have prophylactic Aciclovir (to ward off shingles). I did ask about it, but they didn’t want to give it me…
Jackie, Jm954 , thanks for sharing this article. It's very good to know that the risk of PJP isn’t such a risk, especially after the first year.
Like you I am on second treatment and for about 18 months now. It might always be worth asking again about the Aciclovir. Although luckily my Shingles was fairly mild I am reasonably sure it was caused by stress and as I get older I find I am more prone to stressing about small things ! 😕
Paula stress is awful, and I was reading an article that said it’s bad for your skin ageing as well 😕
Forget the three foot snakes in another post my two cats have been chasing a poor field mouse 🐁 around the living room ! I couldn’t catch any of them but did eventually get the cats out of the room ! That has stressed me worrying if the poor mouse is ok 🤔
Wish I could think of a way of dealing with my stress. Yoga just not my thing !
I'm glad you were able to save the mouse from your cats, Colette - at least for now. But I'd be stressed too, wondering whether the poor thing could get back outside again. I used to keep pet mice and rats, and they were great little characters. I became very fond of them.
I have a funny snake story too. Some years ago I was looking after a pet python while my snake-mad nephew was away on holiday. One day I went into his room and the snake tank was empty! It looked like l hadn't fastened the lid back properly after my last visit.
I searched the room and could see the two foot python curled up under the bed! The bed was heavy and I was by myself. Realising this was a three -person job, I called at the house next door (people I hardly knew), and asked if they could help me. My request was for two kind people to lift the bed so I could grab the snake, before it slithered off somewhere else.
Those wonderful neighbours rose to the occasion brilliantly. They came round, lifted the bed and I carefully picked up the snake and returned it to the tank. This time I was careful to put the lid on properly!
As for ways of dealing with stress these days... Yoga isn't my sort of thing either. When I have the energy, a good walk is usually a good relaxant - especially up a rocky hill. But other suggestions would be very welcome..
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Prophylaxis While on Ibrutinib 
