After 11 years...finally beginning Promacta tonight

I was diagnosed in 2007 with ITP. I have tried to make a difference with food and natural health but nothing was ever consistent. I can't recall how many times something seemed to make a difference, only to fail after 2 or 3 weeks. I am thankful I've mostly stayed above 20,000 over the years and my hematologist has been great about it. Up until the second half of last year I only had to take steroids before a medical procedure. Now I've done a 4 day dose of dex 3 times since last summer/fall. I've tried with all of my heart to avoid meds but after reading on this group for several hours one day it put a lot of my fears at ease. I got all signed up with the company to receive promacta but then had a week of 47,000 counts and the next week 38,000. Those are high numbers for me so they said just hold onto the promacta and we'll wait til I go below 30,000. Well the next week after those 2 good ones was 21,000. I really hope promacta eventually helps me to level out somewhat. I don't know anything about discussion groups and actually thought I posted on here 3 1/2 weeks ago but it looks like it never made it to anybody's eyes but mine. Lol. Did this as new topic rather than posting on someone else's topic so maybe this will work. I need to watch a YouTube video on discussion forums but that's a different subject! Anyway, I think the support and wisdom on here is invaluable. Starting promacta in the middle of the night.

Glad you find this forum. My son is just on this journey for the last 5 months. So we are still new here, but we learned a lot. For Promacta, sometimes it just takes time to be effective. Don't be disappointed if you don't see the result immediately. It could take many weeks before you see the increase.

Becounted wrote: I was diagnosed in 2007 with ITP. I have tried to make a difference with food and natural health but nothing was ever consistent. I can't recall how many times something seemed to make a difference, only to fail after 2 or 3 weeks...

Greetings.
Have you ever tried either NAC supplement or Artemisia supplement? Both of those are supposed to be effective for Epstein Barr virus - which is a known trigger for ITP.

I have not!?

I also take Promacta in the "middle of the night"--because of its eating restrictions! I've been on it since mid-November, but am also undergoing a very slow prednisone taper to wean me off the pred. Although I know my high counts won't last once I get off the pred, my platelets have been normal ever since I started the Promacta. I take it every other day (night) and am currently on 6.5 mg of pred alternating with 6 mg.

I did pred taper plus promacta. Took quite a while to sort my promacta dose out.

I've never taken prednisone long term. Only for medical procedures and, in recent months, a couple of 4 day doses to bring me up. How long have you been taking it?

So I got all cleared for Promacta and received my first bottle, and then my platelets went unusually high for a couple weeks on their own. My hematologist came up with the plan that I'd go ahead and start the Promacta if my count went below 30k. It did the next week. 21k. So started the meds last Wednesday. My count on Monday was 26,000. I'm glad I found the discussion group beforehand as it prepared me about how slowly the medicine may work. I'm on 50mg but if it hasn't gone up significantly by next Monday they want to up the dose to 75mg. Since a high count and subsequent clots are a risk I'm thankful things are going slowly.

75mg is a lot. With a start count of 21 and a steroid responder, my guess is it won't be necessary. Probably get to 25 before you know it.

Cheers to Promacta.

Hopefully you're a prophet!!!

LOL, if you're trying to be a statistical outlier, someone special, I can't stop you.

Becounted, I've been on prednisone for most of the past 18/1/2 years. I was a poster child for pred until last summer, when it apparently turned on me!

Oh noooo! When does the tapering end? It'll be interesting to see the change in platelet count with just the Promacta.

No, no...don't want to be special. Want to fit into a column on a graph! ; )

At the rate of my very slow taper (1/2 mg of pred a month), I won't be off it for another year! And that's if I pass the 5-mg period okay. I too am interested in what my platelet count will be as my prednisone drops. When I started Promacta at 50 mg/day (and was on 7.5 mg of pred/day), my platelets were 561K. Now, alternating 25 mg/day for Promacta and alternating 6.5 and 6 mg/day for prednisone, I’m down to 174K.

I suspect that is more likely due to the reduction in Promacta dose than tapering the pred.
It's a pain tapering pred and jiggling around with Promacta dose I've been at it for almost 2 years. Down to 2mg pred & promacta 37.5mg a day now.
The target count on Promacta is 50 so 174 is quite high actually. As long as you are asymptomatic I wouldn't worry too much about counts.

Yes, I figure I'll eventually get down to 50K, but I'm enjoying being nosebleed-free and being able to take NSAIDs!