Promacta & Me :-)

Hey Everyone ( anyone)

I was diagnosed with ITP April 2010 and have had an up and down experience with it. Ive been on steriods, rituxan and now they want to start me on Promacta. I wanted to know if anyone had any complications with this drug and maybe suggest something else. I am trying to avoid a splenectomy because the out come isnt guaranteed and i dont want the long term care ( shots and etc) associated with it. I am fairly young 27

I just want to be in remission...lol. (Like majority of us)

I've only been on it about 75 days at 50mg. Went from a count of 6 and have gradually climbed to 240K yesterday. Since protocal says if you're over 200, you should cut the dose, I'm dropping to 25mg until I see the doc in 2 weeks.

I went through all the materials here on the site, printed them out and talked it through with my hemos office. Since I'm their first patient on it, we're learning together. They have been using NPlate for most of thier patients but the amount of travel I do doesn't make the weekly shots feasible for me.

We asked the drug rep if there was a need for a baseline bone marrow and the answer was no. Instead they indicated other blood components to monitor closely for a while. I did weekly draws for a month, then every other week and will probably do fairly frequently until I get to a stable level.

The biggest headache for me was that my prescription coverage makes me go through the specialty pharmacy to get it and that took some coordination with the doc's office. It does take some planning since you have to take on an empty stomach (1 hour before meal or 2 after) and avoid calcium (dairy, etc) and vitamins for 4 hours after taking. Not a big deal, since my thyroid meds have the same instructions, I was already in that mode.

It's a journey for all of us and it has it's ups and downs. I was diagnosed over 16 years ago and didn't have to treat for many years, then dropped to 6, used Winrho every 8-12 weeks for a year and then held for 12 months. Unfortunately then the Winrho only lasted 3 weeks, so we moved to the Promatca.

My Hemo is requesting weekly cbc for a month, i may be on it for a month. Are there any side effects not listed that happened to you? I went through prednisone and i started to notice my hair loss and that was never listed in side effects. I know the ups and downs can get depressing at times but im learning to cope with it