Imbruvica side effects

[brooklyn7672]

I started 420mg Imbruvica June of 2019 and lasted 2 months because of bad side effects. Dr lowered to 280mg Oct 2019 and lasted 7 months, with some side effects diminishing. Dr now lowered it to 140 because my spleen was good along with other tests, however; my platelets and WBC are too low. I am still getting some of the worst side effects, mostly bruising and the red splotches on my skin.

Is anyone else experiencing this and if so, what are you doing to relieve these two side effects.

Thanks - - - Rosa

[Nickos66]

Hi Rosa,I've been on ibrutinib(imbruvica) for almost 12 months now,I started on 2/3 dosage and built up to full dosage after 6 weeks,it was too much for me,I have experienced the bruising,septic spots,extreme pain in joints and the ends of my fingers and thumbs,nausea and quite a few more to be honest,I was taken off it completely for 2 weeks and restarted on 1/3 dosage building upto 2/3 dosage,my side effects settled abit but some come and go and are on the whole manageable.My bloods are all stable and my Onc is happy to keep me ticking along on 2/3 dosage.Drinking plenty of water and having a good balanced diet is vital to go along with taking this medication.I didn't really take anything for your 2 side effects but I'm sure folk on here will give you the correct advice on treating them.All I can say is stick in with the treatment,side effects will subside and taking a pill a day is so so better than sitting having chemotherapy coursing thru your veins. 🥰

[lankisterguy Volunteer]

I didn't do well with Ibrutinib/Imbruvica-painful skin rash and rising ALC at 9 months, so my CLL expert doc put me on Venetoclax/Venclexta

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Started June 2016, and I have had no side effects and nearly perfect CR - Complete Remission ever since.

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You may want to get a 2nd opinion here: cllsociety.org/cll-society-...

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Len

[chuckh]

Rosa.. I have been on Imbruvica for close to 5 years I think. Bruising/bleeding was among the very first side effects on me. I also had a fair amount of muscle/joint pain... and they reduced the dose down to 280. They still have to give me Percocet or I don't feel like moving around much. I have noticed that any somewhat strenuous activity... I pay for the next day still.. even with reduced dosage. So for breakfast I have Imbruvica and Percocet every day. Some of the bruising I get is massive and looks horrid. But for the most part I do not feel it. Strangely as it may seem my platelet count is ok... yet still my arms are in technicolor! I recently had an event where the muscles in my left arm seemed to be bleeding out under the skin... almost like a giant blood blister. My forearm and hand swelled up like Popeye's. If all you are having is a fair amount of bruising I do not think it is something to worry that much about. I might recommend taking some Iron tablets to avoid getting anemic... but of course run it by your doctor first. Oh and a cautionary note. If you are going to have any surgery or whatnot... they recommend you stop the Imbruvica 5-7 days before. Just my 2 cents here.. hope that helped.

[Canuck901 in reply to chuckh]

What are your markers ? Mutated ? Unmutated, 17p or tp53?

[chuckh in reply to Canuck901]

from what I can discern 13Q is Abnormal. Strangely... there are 2 test 24 hours apart.. one saying TP53 normal.. The next day it said Mutated. So flip a coin on that one. I just got informed yesterday that I can quit taking the Imbruvica because it is not going to work for me any more. Something related to some marker not really plain to me... BTK c481s. (I already knew it was not working right). Hopefully my bleeding issue will go away. But I recall having this bruising for years.. arms constantly in gorgeous shades of purple, red, and blue. I bruised other areas too.. but arms seem to take the brunt of it.

I do wish you best of luck and keep me posted.