acalabrutinib and tegretol: Hi everyone My 7... - CLL Support

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acalabrutinib and tegretol

MelaniePet profile image
6 Replies

Hi everyone

My 70-year-old father had FCR five years ago, with great results. We’ve just been advised he needs to start treatment again, and they’ve chosen Acalabrutinib.

He has been advised he had to go off his medication for epilepsy, which is Tegretol. We’re obviously not thrilled about it but know he can’t take it with the Acalabrutinib.

So my question is, has this happened to anyone else, and did you take an alternative to Tegretol?

Thank you!

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MelaniePet
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6 Replies
Classicaljazz profile image
Classicaljazz

The physician who treats your father's epilepsy will need to determine how to safely transition him to a new seizure medication, to avoid breakthrough seizures and to avoid side effects. He might need to slowly taper off/withdraw Tegretol while adding and titrating the new medication over a specified time period that the physician orders, and be monitored for side effects during the tapering since the new drug may possibly interact with Tegretol. There are quite a few different types of anti-seizure medications that physicians may pick from, based upon the type of epileptic seizures an individual patient has, and what other health conditions or allergies the patient has.

It looks like Keppra ( levetiracetam ) is compatible with acalabrutinib, and so is Topamax (topiramate). You can check other anti-seizure medications compatibility at drugs.com/drug_interactions...

MelaniePet profile image
MelaniePet in reply to Classicaljazz

Thank you so much! Yes, Keppra has been mentioned as a possibility. Dad sees his physician tomorrow so we should have more information then. It’s good to know we have options, it was just a bit of a shock to hear he had to go off the anti-seizure medication.

AnneHill profile image
AnneHill in reply to MelaniePet

I take Ibrutinib and had to stop the Tegretol. I take 2 different tablets. I still take Lamotrigine and now Keppra instead of Tegretol. I havent had any Grand Mal fits but I have had daytime fits where I was confused. I was aware and didnt blackout but when I spoke it came out as gobbledy gook. The neurologist altered the doses and it has stopped. Hopefully the dose will be ok for your Dad but they will adjust it if not. I liked the Lamotrigine.

MelaniePet profile image
MelaniePet in reply to AnneHill

Thanks so much, Annie. We’ve been advised they will put him on Keppra instead. We’re very glad there’s an alternative 😊 Thank you so much for responding

Kingfish6 profile image
Kingfish6

gababapentin (Neurontin) is an alternative. I take it (not for seizures) w/ ibrutinib. I took Tegretol a long time ago & had a bad reaction. Only option then was Neurontin. There may be some newer drugs for seizures.

MelaniePet profile image
MelaniePet in reply to Kingfish6

Thank you so much, we’ve been advised he will move to Keppra and should be fine. He has taken the Tegretol for quite a long time so I am glad there are newer drugs to help.

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