Promacta?????

Has anyone out there tried Promacta?
I have had my spleen removed, have tried N-Plate, done rituxin, tried axithriopine, and I am on steriods and get IVIG as needed.

I am looking to get off of the steroids and I am hoping to get on something that will get me stable.

Just wanted to see how anyone did or is doing on the Promacta?

Thank you. Jessica

Hi Jessica. As far as I can tell there are only 2 of us currently on Promacta. Myself and "weirdjack". He and I are the only ones who post about it anyway. I've only been on it for just short of a month now. It seems to be working. Last count done a week ago was 174! With that count the NP said I could come every 2 weeks for CBC, so we'll see where we're at next Monday. As for the medicine, I'm not experiencing any life altering side effects yet. My sleep isn't quite as sound and refreshing as it used to be, but I can handle that. I do have a constant dry mouth, but living with that as well! I've also noticed in the last week or so food and drink don't have much flavor, but that may be because of a cold, allergy thing I've got going on. Don't think it has anything to do with the Promacta. They cold/allergy thing I mean. I know Jack has been on it for over a year now. I bet he'll chime in here anytime now with his insight!

Yep.....been on Promacta since January of 2010 (14 months). It has kept me in the 50k range.
Prior to Promacta, on other treatments, I'd be anywhere from 4k to 30k....usually 20k or less. I started on Promacta with a count of 4k after various immune suppressants stopped working for me.
A few odd side effects, but far fewer than anything else I've used over the years. I have lost 30 pounds or so while on Promacta...not sure why though.
It's expensive at around $8,000 a month, however insurance picks up all but $60 for me.
It doesn't work for everyone....but it sure has been great from my perspective.
.

Thank you for your replies. I think I am going to talk to my doctor this Thursday.
I am at the office weekly and my goal is to be out of that office. If I can start getting counts every two weeks, that would be great!

If I loose some weight that would be okay too, two years on steroids and you know where that gets you!

I will let you know how it works for me. I am hoping it goes well, I responded great to the NPlate but I hated going weekly & if I missed a dose it was right back in the hospital, I would drop so dramatically!
I know Promacta is a bone marrow stimulant so hopefully I react well to this too.

Thank you!

I'm on Nplate and I only go to the hospital every four weeks. Why did you have to go every week? That would be intolerable.

When I was on NPlate I needed a shot every week, if I skipped a week I would drop really low and be put in the hospital. That is why I do not want to be on NPlate again. If I only needed it monthly that would be great!

As of now, I am getting off steroids and my doctor wants to see how I do with nothing!
He has never done this before, I am praying that this works and I can possibly be drug free for the first time in 2 1/2 years! If not, I will be trying the Promacta.

Oh sorry, I misunderstood. I self inject at home and just go in for a blood test.

It's unusual to be on steroids for so long so I hope you can get off it. Good luck with the Promacta if it becomes necessary to try it.

Ann,
How are you able to self inject the Nplate medication? I thought that was not allowed...I have been going every week since last september and it is driving me insane!! I am at the dr.'s office anywhere between 2-4 hours every tuesday. :0( I would love to switch to self injections but didnt think it was possible.

I too was at the dr every week for the NPlate shots and that is why I stopped.
It is a great drug, but being there was driving me nuts.
Ask your dr about Promacta, it is also a bone marrow stimulant but it is a pill.

I am currently going off all drugs and my dr is seeing how low I go, he has never done this.
If it doesn't go well, I will be trying Promacta.

Good Luck!

I also had to go to the hospital every week. It was an huge inconvenience. I see that Ann in from the UK, maybe things are different over there.