Promacta ?

We started Austin on Promacta yesterday. Anyone had experience with it????

Many people have experience with Promacta. The Forum is usually quiet on weekends, so you might not get many responses right away. You can do a search though or read through the posts in the Treatments Section.

I've been on it since fall of 2014. I'm post splenectomy. Started with 50 mg then 75 mg then up to 100 mg.. I also use it in conjunction with 5-10 mg of prednisone and 300 mg of cyclosporine every day. It seems to be maintaining me pretty good. I've been in a "normal" range since January. I run anywhere from 100,000 to 300,000 platelet count with pretty big swings in count ranges (some times 50 - 75,000 change in a weeks time).

The bad news which could all be a coincidence, is that I had a blood clot in my lung and a couple in my legs. Also have been having issues with enlarged lymthnodes (biopsied - non cancerous).

I try not to think about it anymore unless I feel bad or notice any symptoms.

Ptschuma:

It is becoming known that ITP can be a thrombotic disorder, meaning that clots can occur even at low counts. One reason for this is platelet fragments, called microparticles. They can accumulate in number and cause clots.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.onclive.com/insights/immune-thrombocytopenia/Risk-of-Thrombosis-in-Patients-With-ITP

Having had a splenectomy also raises the clotting risk.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3674676/

Also, blood clots can be a side effect with the TPO's. Counts should not be normalized on the TPO's; the dose should be adjusted so that counts maintain around 50k.

I don't think it's a coincidence, I think all of the above factors could have come into play.

Ptshuma, have you been tested for low immunoglobulins? Mine are low and I have enlarged lymph nodes also. It is thought that it's just one of those things that happens with a poor immune system but my recent biopsy was inconclusive as in "some reactive cells but could not rule out lymphoma".. sigh, so am waiting for further discussion and tests. Might be worth testing IGs if you haven't already.

Sorry, I just saw this reply. I haven't checked in on the forum lately. I don't remember my doctors mentioning immunoglobulins. My monocytes are elevated around upper 20's (should be 1 - 11) and LDH has been running usually between 200 - 350. I had a biopsy of nodes under my left arm that came back non cancerous, but I had CT and PET scans that show enlarged nodes still under my arm in my sternum and behind my aorta. They said the one on aorta is about 1 cm and would be too risky to biopsy. We are going to check again in 3 months unless I start to feel bad.