Promacta

My daughter, age 20, has been on varying doses of prednisone since 10/10. We have been trying to taper the prednisone and all was going well. Two weeks ago, she went from 41,000 to 18,000. Then this week Tuesday, 1,000. It just so happens that we received our first shipment of Promacta on Tuesday, so started that and also bumped the prednisone from 5mg to 50 mg. We tested again on Thursday - still 1,000. Bumped prednisone up to 100 mg. Sure hope something kicks in soon. We test again on Monday. grrrrrrrrr.............

Hi Gay, Sorry to hear about your daughter, ITP is a roller coaster which has been said many times by members of this discussion group. As I have not been below 5o,ooo yet, over 2yrs so have no personal experience to share with you. I am sure it will not be too long before someone responds who has been there and is willing to share their experience. However what works for one person does not necessary work for another. All the best and wishing you good test results on Monday. Plse keep us up to date.
Benny.

When I was on Nplate and crashed to a count of 1 with bleeding, I took steroids but found that I then went so high that the dosing of the Nplate was messed up and we didn't know where I was. So next time I crashed I just upped the Nplate dose and waited. Since then I've been okay but mixing the two, Nplate and steroids was a nightmare and I would never go there again.

Just my experience.

Give it a few days. You didn't say what the Promacta dosage is, but it can take awhile to see anything happen.
When I started on Promacta, I took 50mg/day. It only bumped me from 4k to 14k over a 2-week period.
Then I switched to 75mg/day max dosage and went up to 52k over a couple more weeks. Still, the highest count I have had on Promacta was 67k. It normally keeps me around 40k-50k. That is what the stuff was designed to do.
Note: I have not had to take Prednisone at all with Promacta.
My hematologist reduced the dosage after a year back to 50mg/day, seems to be holding still at around 40k-50k. I only get checked now every 4 months....go in again on June 27th.
Oh yeah, quick history: diagnosed 9 years ago, ignored it all, ended up in the hospital, treated for the past 8 years with Prednisone, then a succession of various immune suppressants, then Promacta (after everything else stopped working).

Then again, like all ITP treatments, Promacta doesn't work the same for everyone.
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Sorry to hear what your Daughter is going through. Hope the Promacta kicks in and she can lower the Pred dose.

Great news, something kicked in! Platelets at 160,000 yesterday, Monday. They are reducing the prednisone from 100 mg to 25 mn. Gets tested again on Thursday. At least I can stop holding my breath! Now if we can just reduce the prednisone and hopefully Promacta will hold her. She is on the lowest dose - 25mg of Promacta. First tests: Liver panel and vitamin levels were all normal!

Gay

Great news. Hope the Promacta will hold and she can taper off Prednisone.

Hi Gayk4,
I haven't tried Promacta, but I am a 19 year old female, like your daughter. I look forward to seeing how her appointment goes on Thursday. I have an appointment that morning also. Last Thursday I was in the hospital with my platelets at 1,000. I received a platelet transfusion, IVIG, Rituximab, and two doses of methylprednisolone all within a 24hour period and went home on 40mg of prednisone. They started calling me Superwoman because trying to get the IV in three different times, my veins were too strong and the needle wouldn't penetrate, leaving massive bruising on my forearms, but they were able to get in through my hand. All in all I look forward to hearing how your appointment goes with your daughter on Thursday.

Platelets at 249,000 on hursday 6/17! She hasn't been this high since 6/09, Are reducing prednisone to 15 mg and Promacta everyother day. We see hemo on 6/20. I'll post what happens at this appointment. She has had no side effects of the Promacta.

Gay

Good to hear!!!

That's great...!!!

I love Promacta myself...been on it over 2 years now. I haven't heard of taking it every other day though...not a bad idea. My counts are typically 140-250K on it. Have been as high as 296K.

I'll have to ask the doc if I can do that...it'll save some $ too (kinda).

She took Promacta Wed, Fri, and Sun and prednisone down to 15 mg. Platelets today at 307,000! They are dropping the prednisone to 10 and she will probably be off by next week. Still keeping the Promacta every other day and test again on Thursday. Dr. says if platelets get above 400,000 they will stop Promacta. Wow! She still has had no side effects, except that the awful hunger with prednisone is gone.

Gay

promacta ever other day huh? I'm interested in hearing how that turns out. Glad it's working will so far!