Promacta time

Last week started having symptoms again. Went in for a CBC and was down to 10 on Monday. Tuesday got some IVIG. Today count was only 17. Hemp handed my a trial bottle of Promacta. I am going to take it for a week and see him again Tuesday next week.

Best time to take this stuff morning or night?..

2am ish then you can avoid the dietary restrictions. Initially I started taking it a 10pm but got fed up with watching what I ate from 6pm so swapped to 2 am.
I generally wake up just before the alarm and go straight back to sleep after taking it.

Sorry to hear D Mann. I guess the trial bottle is only enough for a week? Are they 50mg? I wonder if your great IVIG response is going to translate to a good Promacta response too.

They are 50mg but he told me to cut them in 1/2. 25mg a day for a week, looks like enough for 2 weeks give or take.

www.pdsa.org/forum-sp-534/7-treatment-general/28329-cutting-promacta-pills.html

7 days on 25g Promacta and I have gone from 17 to the dizzying count of 136. Hemo wants to try Rituxin again in a month or so. He feels that it may be beneficial. For now I am keeping up the 25g and rest easy for a bit.

I don't think I'd do rituximab if my count was as good as that.

Oh my D Mann. That is quite a response. About 4 times better than I expected. LOL, are you sure you're not cutting 100 mg Promacta tablets in half instead of 50 in half?

I can only restate what happened to Zomzombie - who had a poor steroid response, strong IVIG response, and strong Promacta response. He achieved remission in one week when Promacta and Danazol were combined.
pdsa.org/discussion-group/search.html?searchuser=Zomzombie&searchdate=all&order=inc&childforums=1

If your doc is thinking of retrying Rituxan it would make me wonder if he wants to try it because a similar situation worked for a previous patient. Perhaps someone took Rituxan while on Promacta (and had a strong Promacta response) and it threw them into remission on the first one or two infusions. Something like that?

My ITP train destination is Promacta with Danazol.

Incredibly nice count. Good luck D Mann.

Hal my doc thinks I was showing a mild reaction to the Rituxin before the flu and wrong meds caused my crash in February. He said someone that has a mild reaction can sometimes have a great reaction with a second go around. He said Promacta long term is not a good option because of the cost. If nothing else works so be it, but if something else works then that's the way to go.
He keeps bringing up the spleen as a good option and wants me to consider that if the Rituxin doesn't work. I am debating my next move for sure.

Well 10 weeks on 25mg Promacta. Counts are not holding at all.
Week 1 - 132 had a single IVIG treatment the same day I started Promacta
Week 6 - 64
Week 8 - 42
Week 10- 19
Bumping up to 50mg and seriously considering spleen surgery.
Bummed today for sure.

I know it seems discouraging, but you've been in perfect target range until this last count. See what happens the next time and go from there. It can take time to get the dosage right.

Anything else that may've dropped your count? I only have to get a slight hint of a cold and my count drops.

I am not feeling ill at all. I do have some minor low count symptoms, I do not bruise or have any bleeding unless I am below 10.

Below 10 I'm so jealous, Bruises below 30 for me

Would Nplate be on the table to try if Promacta fails?

Jay in Chicago has a fantastic response to NPlate and never responded to Promacta.

My doc has raised my Promacta to 50mg daily. I am beginning the process for surgery although I am not 100% sure I will do it. Surgeon wants to see the size of the spleen and talk with the Hemo about my current count (19). I would say that anything is on the table to try and stabilize my counts. I have reservations with both Promacta and NPlate.
1. Cost per month
2. With NPlate having to go to the doc for each injection
3. Side affects of both and continued ITP symptoms
4. Not being able to do some normal "Well Care" due to low counts
All of these are what is making me consider surgery. I know it is not 100% successful but literature and both doctors say ~70%.