question

Hi my name is Keli I was diagnosed with ITP when I was 17 years old, I am now 24. I was in remission for two years and 9/26 found myself back in the hospital adter a horrible period found out i had 1,000 platelets and lost an extreme amount of blood. I was released from the hospital on 10/10 after 4 blood transfusions 3 IVIG and 6 Platelt transfusions at 8,000 platelets and got put on promacta on leaving I went to the dr two days ago I was at 5,000 and yesterday at 4,000 so promacta does not seem to be working after 5 days yet has anyone been on promacta? and how long did it take? Steroids do not work on me i am allergic to rituxan I have already had a spleenectomy? whin ro u cant use if u have no spleen. Can anyone tell me any other treatments they have tried? I already lost my job because of two weeks in the hospital I just want to get better and get back to my lifeeee any ideas??? thanks so much I thought maybe this would help talking to fellow ITP people....

Hi Keli,

Welcome to the forum. This is a good place to find many different experiences. It sounds like you've been through nearly every treatment, though I think there may be a few you haven't yet tried (I'm thinking Imuran or Decadron, though I don't know much about either). It was my daughter who had ITP, diagnosed when she was 12. She is now 19 and has had normal platelets for over 6 years now, since I found a good homeopathic remedy for her. It took her counts from 11k to 411k in 4 days, besides making many other profound changes in her overall health and behavior. You can read her story and more about homeopathic treatment in the Original Forum, under Natural Treatments, and in the thread called "Homeopathic Doctor" discuss.pdsa.org/topic.asp?TOPIC_ID=23985

More and more ITP patients are choosing this route, as there are no side effects, it's relatively inexpensive, and mostly because it is very effective. Of course to be effective, the right remedy must be found for you, as a remedy must be chosen accurately, and that takes some skill. It may take a few months to figure out just the right one, and just the right potency. Anyway, it's an option that you might want to look into.

Best of luck,
April

got put on promacta on leaving I went to the dr two days ago I was at 5,000 and yesterday at 4,000 so promacta does not seem to be working after 5 days yet has anyone been on promacta? and how long did it take?

I have been on Promacta for 9 months. Started taking it after immune suppressants quit working for me.
Relax, it can be slow to kick-in for some folks.....I am one. IMO, the benefits are worth the delay.
I started on 50mg/day dosage. Hovered in the 4k-8k range for the first week. I was then bumped to the maximum dosage of 75mg/day. My count started on a slow upward climb. By the second week, I'd made it to 14k.
Then it took a couple of months to get into the mid-30k's.
From month 4 through month 6, I hovered in the 40k-50k range.
My most recent check was on August 30th, it has made it to 77k !!!
I have not seen that high of a count in years.
Now we are hoping to be able to reduce the dosage back to 50mg/day in November.
Promacta works for me (right now), it just took time to kick-in.
.