Nothing is working - losing our patience...

So we are almost a year into our battle with ITP. My husband was diagnosed last winter and since then has tried steriods, rituxin, rhd, danazol and nplate. So far nothing has worked. We started to see a very slight improvement with the nplate but his body is continuing to destroy the platelets so he can't go more than 2 or 3 weeks now without IVIG.

His doc wants him to give Promacta a try. We are skeptical since we thought nplate and promacta were similiar and the nplate did nothing so why would the promacta but he seems to think it is worth a try since our next move will probably be a splenectomy.

We are both feeling so defeated though - 12 months of trying new things, getting our hopes up and then being disappointed. And both of our fears...what if the promacta doesn't work? then we do the splenectomy and that doesn't work? what if there is nothing that works?!?! Logically I keep telling myself we'll find something but after a year of this - I'm starting to lose that optimism and I'm getting scared he'll never find any relief.

Please share any info about promacta...we know about dietary restrictions. No calcium 4 hours before and after the pill?? Thanks in advance.

What is your husband's count?

Well he's been on a cycle - over the last few months he's been having IVIG regularly. So he'll have a round of IVIG that will bring him anywhere from 200-300k (depending on how much he gets) and then they'll drop almost 100k in a week...so about 2 or 3 weeks after his IVIG he'll be down to about 10-20k and they'll give him another round. We were doing this because he started the Danazol about 6 weeks ago so we were told it would take about that long to start working. So in the meantime while his counts dropped he was given the IVIG. But after almost 2 months it's clear the danazol isn't working. He starts to show symptoms (a couple of blood blisters, minor bruising) around 10-15k.

How long was he trying the Nplate? It took me a good 5 months to get stable on it.

Oh he's been on the nplate for months - we didn't see any reaction whatsoever until he got to the highest dosage - 10th level was what my doctor referred to. That was when we saw a huge jump after a round of IVIG which we all assumed was the Nplate working. It's been probably a couple of months since that and while we think the Nplate is responsible for such high counts after the IVIG (since he's not receiving that much) he has been unable to sustain his counts. Within a week he is down by 100k and then it just continues to drop.

I wouldn't be comfortable with that low of a count either. He is having a time of it isn't he. And if no treatment his count really goes down right?

His doc wants him to give Promacta a try. We are skeptical since we thought nplate and promacta were similiar and the nplate did nothing so why would the promacta

Well....the standard reply is; "everyone is different".
Nplate works for some folk, Promacta works for some folk, and sometimes neither works.....
While both drugs are designed to increase platelet production, people can react differently to each. So if one doesn't work for a person, the other one just might.
I've gone through a number of treatments over the years. A couple of years ago I was given the choice to try Nplate or Promacta. I opted for Promacta, because going to the hospital every week for an injection would have been a real hassle for me. Taking 2-3 pills every day is not a hassle.
Been on Promacta for nearly 2 years now. You get used to it. After awhile, it is no big deal. I take mine in the middle of the night to minimize side effects. Keeps my count in the 50k range and I only have to see my Hematologist every 6 months now.

But ....... everyone is different ...... your mileage may vary.

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