Promacta rollercoaster

My daughter on Promacta - started at 1,000 platelets 6/9/11. After a few increases in the dosage, she has been in a safe range since then. Two weeks ago, she was at 81,000, then Tuesday 6,000. We are waiting to receive the 75 mg in the mail and will increase to that dosage. In the meantime, they are putting her on 50 mg prednisone for 4 days, then 30 mg hopefully to give her a boost. She when you think you can finally take a deep breath ..... This is really hard, she has this to deal with along with all the college stress tool. Hopefully Monday when she gets checked again, we'll see some good results.

P.S. It is also stressful for the parents....

Gay K

hi gayk4 i have been on prednisone for four months have to choose an alternative like promacta, what are side effects you experienced?
Did you try infusions? I was told four treatments of rituxan (spelt wrong) the anti bodies are destroyed, giving the platelets a boost.
I was diagnosed in August 2011 with ITP so am still researching this disorder.
Thanks to PDSA who have given me so much help with this unknown disorder.
Promacta is supposed to grow platelets so what is happening? My prayers are for you. brob

Gay, we have seen this before with both Promacta and Nplate. It can take several months to get stable and then after a while the dose can be lowered again and the stability remains. For me on Nplate it took 6 months to get to that stage so don't give up yet.

They also wanted me to do steroids when my counts fell but after the first time of that I refused to play that game and just rode it out.

We probably would have waited it out except it was the day before Thanksgiving and by the time the doctor's office got to the pharmacy, it was too late to mail out for Friday delivery. Now we won't get until Monday or Tuesday - almost a week. So the prednisone was the best option. Hope we don't have to do this again.

Promacta is great in that she has had no side effects and gets to lead a more "normal" life without the prednisone up's and down's.

Gay K

I'm about the same age as your daughter and I've been on Promacta since August. When I was on 50 mg my levels went between about 5 and 20, but since I've started 75 mg they've been going back and forth from about 100 to 200. From talking to my doctor, I think I've gathered that it's normal to see some vacillation in count, and it's okay that this happens as long as you're staying in a safe range. I hope your daughter's levels get up to a decent range soon.

Everyone is different.
When I started Promacta, a 50mg dosage only took me from 4k to around 13k.
Bumped it up to 75mg for a year....achieved 67k at the highest.
After one year at 75mg, we reduced dosage back to 50mg, and the count stayed around 40k-50k.
Been stable like that for the past year. Since there really isn't much difference between an average count in the 50's and one in the 60's, I've stayed on the 50mg dosage.

.

In waiting to receive the 75 mg Promacta, they put her on 4 days of 50 mg prednisone, then dropped to 30 mg. Her platelets jumped to 76,000 after 6 days. Thank heavens! Now back to weaning off the prednisone and getting her stable.