Promacta

I have ITP for 32 years now. I could fill a book with my story but I'm sure we all have our own to tell. Anyway I'm down to the final options unless my immune systems just wears itself out trying to kill me off. Right now I'm living on
AminoCapr while we wait to see if the Promacta kicks in. So my question is or anyone starting from sub 10,00 counts how long did it take to see any kind of initial response frome a Promacta protocl or a N-plate injection. Unfortunately I'm the kind of ITP patient that either has close to zero or more then I need so I swing from the edge of death to a full life every few years or so. Right now I'm hanging on by a thread and information on the subject is thin at best and actually practically non-existant.

I reacted within 2 weeks with N-plate. It has been 8 weeks now. Last read was 250K, and he cut the dose to .25

I hope to give you more data later this coming week after I visit my Hemo Doc. But to answer your question: I don't recall were the platelet count started, but after taking 50mg Promacta for 7 days the count jumped to 221k. Then hit 411k in 14 days. I stopped the Promacta at the 14th day but the count contiuned upward to peak at 595k at the 18th day. All this occured about June 2010 so some of the followup data is a little confused to report. I did a 3 week Promacta regimen at 25mg starting August 2011 and the count went from 112k to over 300k. Some of us seem to be exceptionally responsive and other struggle at 75mg and never reach 100k. I hope it works for you....................

I've been taking Promacta for nearly two years now. I've done several other treatments over the past 8 years though. Each one had stopped working for me within a year or two.
I started on Promacta treatment with a count of 4k, after a week's course of 40mgs/day Dexamthasone to try to bring the count up (after Cyclosporine treatment stopped working for me).

My initial Promacta dosage was 50mgs/day. Platelet count only increased to around 14k over the first two weeks....then the dosage was raised to the max of 75mgs/day. It still took about a month for my counts to get into the 50k range on 75mgs/day. So it took awhile to kick-in for me.

After a year on 75mgs/day dosage, I was able to reduce to 50mgs/day and have maintained a count between 40k and 50k for the past year. I now only need to visit my hematologist every six months. I know what my symptoms are when my counts drop below 10k and have his cell number just in case. But Promacta has given me the most 'normal' life of treatments I've tried so far. It sure beats the constant visits and tests I did in years prior to Promacta.

Everyone is different, so this may not be the typical response...in other words; YMMV.

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My daughter's platelets were at 1,000 6/9/11 when she was started on a 100 mg pulse of prednisone for 4 days and Promacta 25 mg. She bounced up pretty fast and then we finally have her on 50 mg Promacta with no prednisone and she looks like she will be staying in the 100,000 area with the platelets. I agree, this gives her the most "normal" life of any of the other treatments. Let's hope it continues. She is on blood work every 2 weeks, which is a good thing.

Gay K

Follow-up; I did see my Hemo Doc and the count was 171k. I have also been taking 20mg/day of Prednisone for several weeks. My Doc seems to favor the Prednisone to maintain the count in a safe area and only use the Promacta when the count declines. I am almost 70 and the long term effect of the continued use of Prednisone may not be a significant factor in my overall well-being. I currently have neurological issues that now take presidence. Keep us advised on your Promacta decision.

My Doc seems to favor the Prednisone to maintain the count in a safe area and only use the Promacta when the count declines.

Hairball, most interesting treatment. Although, it seems to me to be exactly opposite of Glaxo's intended purpose. Promacta was designed to be a maintenance drug, not a booster.
I'm jealous though.....171k....Cool. I've never been above 65k with any kind of treatment.

GAYK4, You will most likely find that her every-2-weeks count tests will be dramatically reduced after everything has stabilized and the dosage is determined.
At first, I got counts every other day, then once a week, then every 2 weeks....etc. After a year and a half of stable counts and dosage, it's every 6 months now. But then, after all these years, I can tell when my counts drop below 20k....so I would be aware if the count dropped radically after say 3 months..then I'd call my hematologist.
Anyway, one of the benefits of Promacta (for me) is NOT being a human pin-cushion.

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Actually she gets tested 11/16 which will be 3 weeks in between blood tests. That alone is a help with the stress.

Wierdjack: Somewhere along all the treatment procedures, I don't seem to fit the expectations. My first 4-week Rituxan treatment was a success and stabilized the count for many months. The 2nd Rituxan treatment was a failure with no change in the count. The N-Plate program produced a lot a unpredictable counts and was not reliable. The Promacta is extremely effective but the results are outside the expectations. I have been seeing the same Hemo Doc since '04. We read the available data and tend to make joint decisions on what to do next. I am a retired engineer and tend to make objective decisions. The Doc is a little more subjective.

Tested today, platelets at 81,000. Life is good. They will check again in two weeks.

Gay K

I am 65 and have had ITP for 40 years. Have tried all things including a recent trial which did not work. Counts are usually <4k with no drugs which is where I have been for a good while. I tried Promacta for the last 15 days - the 12.5 dosage - my cost $200/month. Counts have not gone up at all. The more I read about it the more afraid I am to take it - so I stopped. HOWEVER, many of the stories on this site seem to be very positive. My doc heard about it from another doc. The cancer center doesn't seem very familiar with it. One patient is on it and is doing well. I have asked questions (very generic) about her/his results but they plead HIPPA won't let them disclose anything. These are all hemo docs but don't seem very comfortable. Don't know what to do. Will take a break for a while and keep the amicar close by if needed.

Your dose of 12.5mg is way too low. The directions say to start at 50mg except for those of East Asian ancestry who should start at 25mg. And if that doesn't give good effect to higher the dose to 75mg per day.

If your haematologists aren't familiar with the most up to date treatments, why not get another opinion?

What was the trial drug you used?

Thanks so much for your response. Trial I started in January was for "Humanized Anti-CD20 Antibody IMMU-106" whatever all that means!!! Was to replace rituxan which I declined. 1 injection per week for 4 weeks...then follow up for a year. No increase at all - actually went from 10 to 2 for a few weeks and now at 4.

I used dexamethasone as needed when I am having a problem. Hate the drug BUT works within a few hours. Of course, doesn't last long after I stop taking. My reasoning is I make LOTS of platelets but my immune system kills them so what is the purpose of making more platelets when I'm just going to keep killing them...seems like you need something to shut down immune system like the steroids do.

They talked me into the amicar to use instead of the dex so I will try that. I will look into more info on the promacta for sure since most of the comments I have seen have been positive...same thing though - you stop they drop....

I will keep looking and checking with the docs.

Rosie:

ITP can also cause problems with production for a lot of people, and I think especially the people who have a hard time responding to most treatments geared toward stopping destruction. There is no way to know if you are making lots of platelets. You might very well respond to Promacta with the correct dose.