Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

3 month check-up - Promacta

  • Topic Author
15 years 1 month ago #7821 by
3 month check-up - Promacta was created by
I only go in every three months now to get my counts checked. No real need for me to have it checked more often, since I know what to look for as far as low count indicators.
Yesterday my count had made it to 77k ! I have not had a count that high in at least six years. If this trend continues through November, I get to reduce the dosage. Apparently, 75mg/day of Promacta is working just fine for me.
No, I am NOT one of those whose count soared into the 400's after 3 days on Promacta....but I'll take what I can get!

My 8 month Promacta history:
01-15-10 - 4k (50mg)
01-22-10 - 14k (50mg)
03-04-10 - 32k (75mg)
03-25-10 - 52k (75mg)
05-20-10 - 47k (75mg)
06-07-10 - 40k (75mg)
08-30-10 - 77k (75mg)
  • server
  • Offline
  • newcreationchangingdaily
More
15 years 1 month ago #7825 by server
Replied by server on topic Re:3 month check-up - Promacta
Yeah! Glad to see it seems to be working for you Jack. How you doing with side effects of Promacta, if any?
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
More
15 years 1 month ago #7833 by kmcadams
Replied by kmcadams on topic Re:3 month check-up - Promacta
Do u have any side effects with promacta?
More
15 years 1 month ago #7854 by hairball01
Replied by hairball01 on topic Re: 3 month check-up - Promacta
W-Jack: I was supposed to re-start my Promacta regimen on 8/23 but the count was too high as I was still tapering-off the Prednisone. Last week I was down to 15mg Pred and the count was 311k.I am now at 10mg with my next CBC on 9/6. My Hemo Doc and I are begining to wonder just what is goint on.... these large unexpected increases in the count are not discussed in GSK's liturature...... maybe they got a hot-line that I don't know about. On the other hand, your data shows you are at the other end of the response spectrum, but at least your now in the 'comfort zone'. GSK et.al., conducts all the clinical trials but I think we are the ones that are generating the realistic empirical data.
  • Topic Author
15 years 1 month ago #7859 by
Replied by on topic Re:3 month check-up - Promacta
Yes, we are the ones supplying real-world data to GKS and the docs.
It will be interesting to see how GKS revises their literature over the next few years, as more patient data flows in.

Side effects? Yep. Although it seems that everyone varies on this. I've listed mine here a few times in 8 months:
* it messes with my stomach, so I take it at 1:00-2:00am.
* some appetite loss (I've lost about 20 pounds in 8 months without trying)
* creepy-crawlies (tiny spiders doing Riverdance under my skin)
* I'm a bit tired always
* I am quite HEAT sensitive now; good for about an hour in the sun

However, Promacta is infinitely easier to live on than any of the other treatments I've tried. I heartily recommend it. :)
More
15 years 1 month ago #7864 by SteveC
Replied by SteveC on topic Re:3 month check-up - Promacta
Perhaps it's not spiders but happy platelets doing Disco.

Are you in the U.S. cuz I thought Promacta was withdrawn by the FDA due to safety issues?

Thanks for sharing
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
  • Topic Author
15 years 1 month ago #7893 by
Replied by on topic Re:3 month check-up - Promacta

Perhaps it's not spiders but happy platelets doing Disco.

Please no.....after singing 'Stayin Alive', 'Boogie Oogie Oogie', and most other top-100 disco hits every night for several years in the disco era, I want no more of disco.

Are you in the U.S. cuz I thought Promacta was withdrawn by the FDA due to safety issues?

It was? Hmmmmm.....someone needs to tell the USA this.
Considering the pharmacy at 'The James' is delivering my new Promacta script today, it doesn't seem like it has been withdrawn in the USA. Maybe it has and they aren't telling me? Oh no, now I'm paranoid. :dry:
Perhaps you are thinking of the 'ELEVATE' study? That was for treating chronic liver disease with Promacta. That study has been terminated due to clotting risks. But that is not the Promacta program for ITP treatment (as designed).
Unless I am in for a shock today when the delivery truck arrives?
.
More
15 years 1 month ago #7927 by SteveC
Replied by SteveC on topic Re:3 month check-up - Promacta
I didn't understand the Liver disease distinction but upon rereading you are correct re the ELEVATE study. Hope I didn't cause to much angst and your delivery truck arrived right on schedule.
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
More
15 years 3 weeks ago #8038 by hairball01
Replied by hairball01 on topic Re:3 month check-up - Promacta
W-Jack.... I am not sure where I stand on restarting the Promacta regimen. My last 50mg Promacta pill was in June '10. Over the last 5 weeks I've tapered off Pred but the Platelet count had increased. As of 9/7 I was at 10mg Pred and the count went up to 577k. I am now at 5mg Pred for a couple of weeks to see if some sort of pattern exists. My Hemo doc and I sorta expected the count drop below 50k so we can restart Promacta. Nothin's going as planned but after years of trials, I guess it's to be expected.
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use