Antibiotics added to Ibrutinib as result of o... - CLL Support

CLL Support

22,512 members38,666 posts

Antibiotics added to Ibrutinib as result of of Idealisib problems

romarin profile image
6 Replies

On FLAIR trial. Having stopped Ibrutinib for a week due to side effects of extreme muscle pain, I began again with low dose of 1 pill. After 12 days (fingers and toes crossed) I seem to be OK. Feeling much better. Now we move up to 2 a day. Dr thinks I will not go back to full dosage. General opinion that maybe the high dose was effective, worth the pain... WBC went from 196 to 44 and now to 48.

Anyway the main point of this post is that as a result of the Idealisib trial problems with infections they have immediately added antibiotics and anti fungal medication to the Ibrutinib I am taking. To be taken with the IB as a precaution.

Written by
romarin profile image
romarin
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Justasheet1 profile image
Justasheet1

Romarin,

Two completely different animals with their own completely different maladies. Did your doctor do this because the FLAIR protocol changed?

Jeff

romarin profile image
romarin in reply to Justasheet1

They said it was because of concerns over infection with Idealisib and worth taking the precaution. And had I been on FCR arm of FLAIR I would have had antibiotics anyway. So dont know if FLAIR protocol has changed but I thought I should alert folk.

terryI_uk profile image
terryI_uk

Hi romarin, I go back to clinic early April to have bloods and collect next batch of ibrutinib, I'll see if they give me antibiotics, I'm already on antiviral pills, Terry

romarin profile image
romarin

Hi Terry, Nice to hear from you. Interesting you are already on the anti virals. Hope you are feeling OK. I hope I will be better on lower dose...

R

splashsplash profile image
splashsplash

I was put on anti virals from day 1 of Ibrutinib but after a month I didn't get the anti virals and virtually immediately got my third case of shingles. I'm back on the anti virals now and hope to stay on them as long as I'm on the Ibrutinib - I couldn't stand a 4th bout of shingles. Does anyone have experience of any side effects from long term use of anti virals?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to splashsplash

Antivirals for herpes are very well targeted to the zoster virus... a few people I know are on them long term or until their CD4+ T cells recover...

These T cells keep the virus from reactivating... you might want to have those levels measured..

~chris

You may also like...

Starting on Ibrutinib after Idealisib complications.

My husband was on Idealisib for 8 months with very good results, but in that 8th month he developed...

Ibrutinib and antibiotics

If I get an infection and need to take antibiotics, must I first go off Ibrutinib? Are there any...

After Ibrutinib failure, lymphocytes up again. Maybe another trial with Idealisib

stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle...

Ibrutinib & nail problems. Anyone else had this problem.

low down & ridges & I notice from the side effects of Ibrutinib this is a common so I would be...

low dose antibiotics/life after Ibrutinib?

mentioned that it was possible to be on low dose antibiotics for a long time without becoming...