Promacta: Stopping

Has anyone stopped Promacta? I have been on it since February 2012. It worked great (kept me between 24 and 70) except I did have side effects. Cataracts, which I have had surgery for and now have great vision, one good thing I guess. But just this week my billirubin has gone up for the first time ever and I am jaundiced. (I also have Hep C so HepC and ITP is not a great combo when taking Promacta). I am not going to take my 75mg pill for the next 2 days and go in for CBC Monday at my Hematologist. Does anyone know how long it takes to get out of your system entirely? Did you have a huge drop in your platelet count. Thanks for any input.

hi curly- I'm sorry to hear about the side effects with Promacta. What were your symptoms with the cataracts? Hope the liver issues resolve quick!

I stopped taking Promacta 3 times. I guess some people have a platelet crash but that was not my experience. Each time my platelets drifted down slowly. Maybe took 3-4 weeks to go from 50K to 10K the first time. Recently I was forced to quit due to lack of funding. My plates were at 14K and it took about a week for them to drop to 7K.

I don't know how long it stays in the body. I was having some side effects; brain fog, memory lapses. My thinking cleared in about 24 hrs after I quit taking the pills. I was amazed- I had forgotten what normal felt like.

Cataract thing was crazy. I just noticed one day I couldn't see that well was kind of cloudy. I could not see in the distance, night time driving was horrible. I went to eye doctor last April I think it was and was told both eyes had cataracts but they were not ready to come out, which I'll never understand but anyway...I went to take my drivers test and didn't pass the eye. I couldn't even see one of the boxes. Went to a different eye doctor and set up to have both eyes done. They put a lens (Toric sp?) in to replace that is 20/20 and I have NEVER been 20/20 so it is a positive outcome for that part. I just freaked out over the jaundice, as you can imagine. I had a CT Scan and blood work and scan was ok. It has been over 24 hours since I took my last promacta so I guess time will tell. Thanks for you input! I remember I was on the study for Promacta in 2009 and when I stopped, I just stopped. I didn't pay very much attention, of course I didn't know much about it then. I understand your funding issue it was hell getting it initially. Do you know if there are any treatments out there for ITP that does not effect the liver? I have had it since about the age of 10 and never took anything until a brain bleed in Feb 2012 so that has me freaked out a bit as well. Anyway thanks for letting me ramble.

The other newer drug, Nplate, does not have liver problems as a listed side effect.

I went in to my Hematologist on Monday (3/10) and my platelets were 56. Double my normal. I am sure they will be going down but trying to eat all the right things and see if I can go drug free. My liver tests came back today and my Billirubin is back to normal. May have had nothing to do with the promacta but after cataracts in both eyes and then liver functions going awry, I'm not so sure. Back to the doctor weekly for platelet check for a while.

Back to Hematologist. 2 weeks in and 54 for platelets and Liver enzymes back to normal, first time in years and years. I am done with Promacta and happy my blood work reflects a positive turn!

Husband getting off Promacta after 18 months. Found this old message from you. How are you doing?