Promacta suggested

People usually stay on Promacta until it looks like they achieved remission (like the patient in the 400's on one pill). That can take months or years. It's a good way to manage ITP for most. There are few side effects.

Well the honeymoon is really over, back down to 15. Going to dr's office on Thursday for ivig, Promact being delivered Wed, she is still on the prednisone but tapered down to 40mg a day from initial dose of 60mg. So she was given 2 bags of platelets and one bag of ivig on 7/8, came home on 60mg pred went from 2 to , then 2 more bags of platelets and one bag of ivig on 7/15 and went from 2 to 76, on pred 60, tapered to 50 count at 186 on 7/31, 50 mg pred tapered to 40 on 7/7, down to 15 on 7/7.

I hope Promacta works for her. That's a lot of side effects and treatments that don't seem to be doing much.

Well it seems that the Promacta is not working yet. Her counts have been mostly single digits for over a month now, and her dosage has been increased to 75 mg and another round of Prednisone. IVIG only got her up to 16 from 1 and only lasted a week. She has been on it for 3 months now, 25 mg month one 50 mg month 2, then 100 mg for a few days after she missed one pill and the hemo said that could have dropped her from 145 to 16. Last week had scary numbness in arms and legs, several nose bleeds and landed at the ER for evaluation. Sent home and increased to 75 mg. Tapering the prednisone now down to 40mg for a week. Blood draw tomorrow but I can already tell she is still low, breaking out in nasty bruises and nosebleeds and during her period she went through two night time pads in an hour. She is bloated and feels like crap, however they did give her Adivan to help offset the Prednisone zombie, Thank God! The Dr keeps blaming her for missing a single dose and not taking it in the same hour every day, I'm not buying it and Novartis offered to call him and explain how the drug works, but I declined at this time because he would be insulted (his office has told me several times that a hosp closer to us now has a full time hemo)

That's a shame. It has such a good success rate for so many people. Maybe she'd have better luck with N-Plate?

It's not very nice of her doctor to blame her for her low counts. I'm sure she feels bad enough with everything she is going through.

Back up to 153! This roller coaster is exhausting...I lost my father Tuesday night so I am hoping her emotions don't affect her count, when we lost our horse on Easter weekend her decline started.

I'm sorry to hear about your father. It's possible that it won't affect her counts, but sometimes stress on the body can affect ITP.

Well she is really holding her own! Three funerals in three weeks and her platelets are holding. Up to 445, tapered off the prednisone blood work next week then hopefully lowering the Promacta from 75mg. She has also has a resp infection that has not seemed to change her count, I was worried because my sister missed our dad's funeral from being in the hospital with pneumonia, her 4 grandchildren all had it, and my cousin was admitted with the flu that went to pneumonia and she passed away. This strain seems really bad.

I'm sorry about all of the funerals. That must be very hard on your family. Your daughter's counts are a little high for Promacta. Hopefully they come down to a safer level soon (I am glad to hear that it's working though)!

He does expect them to come down without the prednisone, but did not want to lower the dose until he knew what being off the prednisone will do so he will be able to isolate any changes to the drug removed or changed. That made sense to me, so we will see next week.