Reduced ibrutinib by 140 mg per day

[CCgroup]

I put in a post about four months ago about having uncomfortable side effects from my 3 capsules of 140 mg per day, so I reduced it to two capsules per day. My blood work was all fine, and my oncologist said to try it.

I was in for my every three months check up last week, and all the blood work was perfect. I have no more side effects at all, even the splitting fingernails have reduced to a minor annoyance from time to time. Obviously, I'll stay with the 2 per day.

Dan

[cllady01 Former Volunteer]

Happy to hear you are more comfortable without any negative changes in your levels. Long may that be so.

[CCgroup in reply to cllady01]

Thanks for the good wishes. May you also be doing well.

[Fran57]

That’s great news.

Stay safe,

Fran 😷

[CCgroup in reply to Fran57]

Thanks Fran. I hope you doing well also.

[PaulaS Volunteer]

Great news Dan. Thanks for sharing.

It's helpful for people to know that reducing doses of Ibrutinib can often be the right thing to do. Worked for me too - I've been on 140 mg for a few years now.

Paula

[dmmck]

so glad it’s working for you.

[CCgroup]

Thanks, Paula. I'm glad to hear it has worked for others as well.

[rubberlegs68]

I'm nearing five years on one capsule of 140 mg and thus far my numbers have remained steady.

[CCgroup]

That is really interesting. Did you start with higher doses and gradually reduce them?

[Northland]

That's interesting. My side effects are nominal but if I could eliminate my toenail fungus and minor acid reflux by reducing my ibrutinib intake from 3 to 2 pills a day I would. I will ask my hematologist next time I see.

[CCgroup in reply to Northland]

I had GERD some time ago, so for years have taken 20 mg of omeprazole daily., and haven't had any acid reflux since. I'd be interested in what you decide to do on the ibrutinib. In my case the third capsule per day was actually harmful.

[Audrey10]

That’s great! I reduced from 3 pills to 2 pills with my doctors ok two years ago. My bruising & other side effects are not as bad plus all blood is in line.

[CCgroup in reply to Audrey10]

Thanks Audrey - good to know. It seems we did the right thing - for us, anyhow.

[Rt2000]

Those of you that have reduced your dosage, I would be curious to know your weight. I have been on a full dose for over 5 years with little to no side effects. But I weigh 200 lbs. I know dosage can be adjusted due to weight. I still would consider trying a lower dose, if it has been successful for those that are heavier, just to cut the amount of meds I take.

[CCgroup in reply to Rt2000]

My current weight is 220 lb (100 Kg)