How are you managing Brukinsa side effects?

Posted by sveta25 @sveta25, Feb 6 12:35pm

My husband is taking Brukinsa for 3 weeks now and so far so good, no bad side affects, WBC is lower but so are platelets so minor bruising and also constipation.
Any comments on using it longer than that ?
TYIA

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Lori, Volunteer Mentor | @loribmt | Jun 11 9:31am

In reply to @stuluv "Hi my name is Stuart from Melbourne Australia and I have been taking Brukinsa for more..." + (show)

Hi Stuart. @stuluv Welcome to Connect! Thanks for joining the conversation with your experience using Brukinsa. Ugh the dreaded constipation from meds. That is a miserable feeling. Hopefully you’re finding relief with the Bisacodyl.

Now that you’re here, I’d like to ‘connect’ you with other members who share your similar health journey. If you don’t mind my asking, for what condition are you being treated with Brukinsa?

CaliforniaGal | @califirniagal | Jun 12 4:19pm

I have been on Brukinsa for 2 years and my side effects are mainly extremely easy bruising, petechiae on one leg & some swelling on that leg, unexplained rashes or tiny dark dots on my face which come and go, dry nails and skin.
I have not felt tired or had intestinal issues. my white blood cell count went from 441 to 20 and I no longer have swollen lymph glands.

CaliforniaGal | @califirniagal | Jun 12 4:23pm

P.S. oh, and I forgot to mention that I have had minor skin cancer, which is a side effect.

wigman50 | @wigman50 | Jun 22 3:07pm

I've been on it for a little over 2 year's. My only side affects is that it's made me light headed, which is one of the said side affects. I have Mantle cell lymphoma from Agent Orange in Vietnam. Wishing you all the best of luck in your journey.

Lori, Volunteer Mentor | @loribmt | Jun 23 8:23am

In reply to @wigman50 "I've been on it for a little over 2 year's. My only side affects is that..." + (show)

Welcome to Mayo Connect, @wigman50 There are so many members of our armed forces who are suffering the repercussions from Agent Orange. I’m sorry you’re one of them. I lost my brother many years ago from direct exposure to AO.
Thank you for sharing your experience with taking Brukinsa for your diagnosis of Mantle Cell Lymphoma. You mentioned taking Brukinsa for about 2 years. Has that been successful in keeping the condition under control for you?

wigman50 | @wigman50 | Jun 24 10:45am

@loribmt. Yes it has. The only side affects that I've had is light-headedness and some bruising.

briefml | @briefml | 17 hours ago

In reply to @minnesotajim "I’ve been on ZANUBRUTINIB (now Brukinsa) for almost nine years. Minimal side effects." + (show)

greetungs : why do U have to live w/Brukinsa for that long ? @minnesotajim

briefml | @briefml | 16 hours ago

Am on Brukunsa for about a year : constipation,bruising- a routine...feel better on the day when I am not taken one
overall, brukinsa helps to keep all blood parameters in check

minnesotajim | @minnesotajim | 15 hours ago

In reply to @briefml "greetungs : why do U have to live w/Brukinsa for that long ? @minnesotajim" + (show)

@briefml I started in 2017, clinical trial to determine efficacy and side effects. Trial has continued to see how long it keeps working and gauge long term side effects. BTK inhibitors are designed to be taken forever, as long as they continue to be effective and side effects are manageable.

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