Promacta

Hello,
I have not been on this site in a long time. I have had ITP for over 30 years and 13 years ago my platelets stated to drop steadily. They went as low as 4,000. I was on steroids; which made me crazy.
I did ritxuan for a year and then failed on that. I did IVIG for another year and was sick non stop on that severe headaches and flu like symptoms.

I enrolled in a study for NPlate; which was AMGEN 531. I was on the actual drug and did very well on this for about 4 years and then the study stopped and I couldn't afford the medication. I was able to go on Promacta 50 mgs and have been on this for about 2 years. I have done very well on this. My platelets have been on an average 145,000.

I just saw my hematologist yesterday for a routine check up and he told me my hemoglobin is steadily dropping and I could have Evan's syndrome.

Does anyone know if Promacta can cause this? He did not seem to know and is checking into it. Mean while I am waiting for results of more extensive blood work; which my take until next week.

I am a little nervous.
Thsnk-you

Well, I don't think Promacta could cause Evans Syndrome because Evans involves antibodies much like ITP. You'd need to be tested for Coombs antibodies which is probably what he was talking about with more extensive blood work.

I would think though that Promacta could cause problems with the bone marrow in producing red blood cells which could also make them drop. If you are not Coombs positive, that may be the next possibility. If that's the case, stopping the drug may reverse that.

Try not to worry until you know more. It may be a fluke that could just correct itself in time.

Thank-you, I have been trying to let it go for now. Will probably know more next week.