Has anyone taken promacta?

I am currently on steroid taper, diagnosed 5 weeks ago. My doctor wants to put me on promacta if I tank in platelets. has anyone taken promacta? What was your experience with it? I am wondering if any Medicare D's will pay for it in Indiana.

Roberta, I would look into this really good. I just started on Medicare, but currently only take one med. I think Promacta is a specialty drug and might be very expensive. Some of our medicare doctor's don't know what medicare pays for--so you need to do some researching. You might have a special plan through your previous employer that pays more than other medicare insurances (or Kaiser might also pay more).

Just thought I'd mention this as I was trying to check out some of these drugs as I was signing up with a plan.

My husband called Aetna. It is not classified as an experimental drug now. It is covered. We have to pay $3,000 max for our prescriptions under medicare per year. I think we could get to that with my husband's diabetic prescriptions alone. So it's all good there. The thing is that you pay the $3,000 over the first three months and then there is no charge.

I am just wondering about people's experiences with it. My doctor wanted to put me on it immediately. He ordered it and it came, costing us just $50 for the first month under our current insurance. It is still in my drawer because I started responding to the steroids and the doctors said not to start the promacta.

We have a lot of ITP patients that have tried Promacta. I think Weird Jack on this forum was on it, but, he, too, had an insurance problem issue and had to go off of it. For myself, I will never take Promacta or N-Plate. We have bone marrow issues in my family (father and brother died of related blood diseases). I was told not to go on either of these drugs at the ITP conference.

I know a lot of others have good luck with Promacta. Maybe you will hear from them.

I have not been on Promacta, but am on Nplate. They have a drug assistance program, so I am only paying $25.00 a shot which is more reasonable than the 350 bucks a shot that they charge for it. The hema said Promacta is a lot harder to get assistance for.

Everyone is different, for me Promacta has been the best treatment I have done in the past 10 years.
I was on it for 3 years, side effects were minimal, and it kept me in the 50k range nicely.
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have you had to get bone marrow biopsies frequently? I wonder why it can't do better than 50K. What side effects have you had?

It can do better than 50k, but it's usually dosed to keep it at the lowest possible dose to hit 50k, which is a safe number. If counts go too high, the risk of blood clots goes up. Most people don't need counts higher than that unless they have a risky job or lifestyle.

I've been on it for about 9 months. I had really mild heartburn the first week, then no side effects at all. You do need to take on an empty stomach and avoid calcium for 4 hours. My thyroid meds have the same protocol, so I didn't have any issues with it.

I asked the same questions about the bone marrow and they said no, that the blood tests would provide any indications of issues. I went over 200K, so we reduced the dose and I'm hold at about 100 which my hemo is good with.

Sounds like there have been a lot of success stories with Promacta. I'm not sure if there is more success with Promacta or N-Plate. I think Promacta is a little easier to take--taken as a pill whereas N-plate is a shot.

have you had to get bone marrow biopsies frequently? I wonder why it can't do better than 50K.

My platelet production has always been great, no bone marrow is check necessary. I'm making big fat fresh sticky platelets, which work very well. For 10 years I have tried to keep the number of non-necessary procedures that I participate in to zero.
They are more concerned with liver function when you are on Promacta. That gets monitored through your blood work. But it's the same with Cellcept, so no biggie.
As Sandi said, Promacta can probably do better than 50k. I got to 70 on 75mg/day. However, since 50k is the range that Promacta was designed for, and 50mg/day kept me there, I was a classic 'Promacta poster-boy'. GSK states the 50k range in their literature. Same with Nplate.

Note: The main side effect I had on Promacta that I miss was 'weight loss'. I lost 30 pounds in 3 years without changing anything else. My own theory is this is due to dramatically increased platelet production burning more calories;
basically the old Heinlein TANSTAAFL effect.
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How are you doing now with Cellcept? Hope you are holding well with your platelets. I didn't realize that you had ITP for 10 years. Did you have a remission for quite a few years?

Sometimes, the years do fly by; this summer it will be 7 years for me

Dee Dee

DeeDee Marie wrote: How are you doing now with Cellcept? Hope you are holding well with your platelets. I didn't realize that you had ITP for 10 years. Did you have a remission for quite a few years?

Yup DeeDee....diagnosed when I turned 49, but I ignored the doctor for about a year. Dumb on my part.
Never had a remission. I've never known a count above 93. It was only that high at diagnosis, dropped rapidly from there. Can't recall a count over 75k in 10 years now. Been sub-4k so often that it ceased to alarm me...it just 'is'. I believe I spent half of 2012 in the 4k-10k range. I do miss juggling chainsaws though.
Cellcept is okay. I much prefer Promacta. I did drop to 14k last week, odd that. I feel fine, low counts are 'my normal'.
My hema asked me to stop by LapCorp today on my way home to get a CBC. I use Labcorp now because it only costs me $8.16 per CBC, 'The James' costs me around $400 for the same blood work.
No biggie though....life goes on....sunrise sunset....wax on wax off......etc etc etc.
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It's amazing how much the blood work and CBC's have gone up. I guess just like everything else.
Your body is probably adjusting to the low platelets. Mine did that a few years ago when I was at about 12,000. I stopped getting much symptoms and really didn't feel that bad.

So you finally stopped those horrible Decadron pulses I don't think I will every do that many again in my life!! There's another ITP member who is between 20-30 and she decided not to treat any longer and she has been doing just fine. Holding at about 20 most of the time.

Well, I'm glad you are doing good; maybe one day you can go back on Promacta again. Good luck to you and stay healthy!

Dee Dee

I found a place today called Lab Tests NoW! Never noticed it before. $25 for a CBC, no appt, no doctor order needed. Results the next day. Open at 7 am. Pretty convenient.