Does Ibrutinib protect against severe reaction... - CLL Support

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Does Ibrutinib protect against severe reactions to amoxicillin/penicillin?

michaeledward profile image
10 Replies

I’ve been taking Ibrutinib for about 5 years. About 15 years ago, I had what appeared to be an allergic reaction to amoxicillin when I experienced a bout of severe itching after taking a dose. Until about 1 year ago, my doctors had be treating me with clyndamycin when I needed an antibiotic, until I had a very troubling reaction to the clyndamycin. Specifically, my hips (both of them) locked up on me which prevented me from sitting down. This lasted about 15 – 20 minutes before things returned to normal. Because of this reaction, my doctors quit prescribing clindamycin. In its place, they started prescribing doxycillin. Although I have yet to have an adverse reaction to doxycillin, the possible side effects of it listed in the doxycillin paperwork were quite troubling. For this reason, I sought out an allergy doctor to perform tests to determine with certainty whether I am truly allergic to amoxicillin/penicillin with the hope that the tests would establish that I’m not allergic to amoxicillin. I stopped taking Ibrutinib for the 5 days preceding the allergy tests. During the tests, everything was going along fine – all the skin tests showed no adverse reaction and then the allergy doctor gave me a low dose pill of penicillin and everything was fine for about 20 minutes. Then I experienced moderate itching followed by a slight feeling of my throat tightening up. The doctor had checked on me a few minutes before this reaction started and when asked, I told him I felt OK. And by the time he checked with me again, the itching and the tightening in my throat subsided, so again I told him I was OK. After the 90-minute test period with the penicillin pill, the doctor interviewed me and I informed him of the brief reactions I had during the test. He didn’t seemed concerned and at first I wasn’t concerned in that I really didn’t want to be allergic to amoxicillin/penicillin. But the more I thought about it later, I felt very fearful of the prospect of being prescribed amoxicillin again, thinking that if I have to take amoxicillin again, maybe I ought to take my first dose in the parking lot of an hospital Emergency Room. The next morning the allergy doctor telephoned me at home to see how I was. I was fine and I told him so, but I reiterated my concern about the brief reaction I had to the low penicillin dose the day before, and in response the allergy doctor told me that as long as I’m taking Ibrutinib, the Ibrutinib should protect me from any severe reactions to amoxicillin/penicillin. This is a long way of asking the question: Does Ibrutinib protect against a severe reaction to amoxicillin/penicillin?

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michaeledward
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10 Replies
cllady01 profile image
cllady01Former Volunteer

Welcome, It would be nice to know a bit more about you. And if you want more replies, locking your post would be helpful so peoples information can be shared without it being all over the internet through google.

Well, this study shows some promise of that, but it is a small cohort, so may not be an adequate sample to prove the point.

The suggestion that it might replace common antihistamine, says a lot for the understanding of what allergy containment would cost. The use of such a potent drug in otherwise healthy individuals needs to be in the mix also ---lots of study needs to be done.

news.feinberg.northwestern....

Experimentation stage, right now.

michaeledward profile image
michaeledward in reply tocllady01

I'm not sure what you mean by "locking" my post nor how I would do so.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

I don’t think that I would play around with penicillin antibiotics if you had a reaction, however slight. I would certainly want to see larger studies about the possibility that Ibrutinib could cause protection, before I risked having a worse reaction the next time.

Handley profile image
Handley

Very interesting mteany. I have always understood that I am allergic to penicillin V since a reaction as a small boy (rash?) but have no details in writing from that time. My Dr decided recently to have my blood tested (RAST) for antibodies and the result was < 0.35 kua/l for penicilloyl-V and G, whatever that means! So that was v encouraging - I was negative. Just to be sure, my Dr wants me to go to the allergy centre in Leeds and have a skin test plus low dose challenge dose under scrutiny, given my CLL situation. I am awaiting the call but it won't be for 8 weeks and I start treatment with I + V next week and my consultant has said that I must be regarded as allergic for now. She doesn't seem very enthusiastic about my going for the further tests once I start treatment and says there are plenty of antibiotics in the armoury...… Frankly, I'd be happier knowing if it is safe for me to use P as one just doesn't know what the future holds. Apparently, in the 'old days' penicillin was 'dirty' compared with modern products and oftentimes a reaction to an infection in small children was mistakenly taken as a reaction to the 'new' penicillin. I wonder if anyone else has any thoughts on this.....??

Cheers, Handley

michaeledward profile image
michaeledward in reply toHandley

The allergy tests your doctor proposed are the exact same tests my allergist put me through. I was required to stop taking Ibrutinib for the 5 days preceding the tests to ensure the test results are reliable. My allergist ordered blood tests before and after the allergy test, but didn't say what the purpose of the blood tests were. Good luck!

rangers54 profile image
rangers54

if i hav an infection my consultant will give me doxycycline i went 2 my gp for a infection an he gave me amoxicillen i said i dont get them but he said there fine my gps aint got a clue about cll they hav 2 look it up on there computer

michaeledward profile image
michaeledward

I have an appointment at NIH in July. They've been following me since I began taking Ibrutinib 5 years ago. I intend on asking them if Ibrutinib provides protection from an allergic reaction to Amoxcillin. They are the "experts" when it come to Ibrutinib. I'll post their answer.

J_88 profile image
J_88 in reply tomichaeledward

How has the ibrutinib been working for the past 5 years?

michaeledward profile image
michaeledward in reply toJ_88

Before I started taking Ibrutinib 5 years ago, my white blood count was approximately 300,000. After beginning treatment, It took about 9 months or so for my white bIood count to stabilize, but once it did, it has been ranging between 11,000 and 16,000. And my other blood counts have been normal or near normal.

Gman2 profile image
Gman2

The WBC numbers are v. good. Hope they are still good. Happy Thanksgiving!

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