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!

Fostamatinib, Nplate prednisone, imuran and dapsone

More
7 years 3 months ago #63873 by AnneMarie P
Fostamatinib, Nplate prednisone, imuran and dapsone was created by AnneMarie P
Hi,
Wondering if anybody has recently added Fostamatinib to their cocktail regimen. I am currently on max nplate, 100 Imuran, 2.5 prednisone and 25mg dapsone with numbers fluctuating between 15 and 30. I will be trying to eliminate the nplate if fostamatinib happens to work for me. I think its getting out of hand to be on so many different medications but my fabulous and famous hematologist is of the opinion that they are keeping my head above water.
I have agreed to add Fostamatinib starting soon. Has anyone else had success?
Thanks!
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 3 months ago - 7 years 3 months ago #63875 by Hal9000
Replied by Hal9000 on topic Fostamatinib, Nplate prednisone, imuran and dapsone
The max Nplate dose amount seems to vary from doctor to doctor. Would that be a 6, 8, or 10 (micro gram per kg) dose? 'jasondema' is currently blazing a Fostamatinib path.

Odd, probably irrelevant, question for you. Since you've been on 75mg Promacta, or high dose Nplate, have you taken 10 or more mg of Pred simultaneously? How long?
ITP Types and Treatments by HAL
More
7 years 3 months ago #63876 by AnneMarie P
Replied by AnneMarie P on topic Fostamatinib, Nplate prednisone, imuran and dapsone
Yes. While I was taking Promacta I was on at least 10 mg of prednisone at the same time for the better part of 1.5 years. Since switching to Nplate 14 months ago I have only taken 10 mg or more when I went below 15 and only for a few days. I have spent all of 2018 tapering slowly from 7.5 to where I am now at 2.5. Recent testing shows adrenal insufficiency so not sure if I will get off completely but still hopeful.
Nplate dose is actually above 10 by about 10%.
Thanks for your reply, I'll read up on jasondema
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 3 months ago #63879 by Hal9000
Replied by Hal9000 on topic Fostamatinib, Nplate prednisone, imuran and dapsone
Ah, you definitely know your p's and q's.
With that high of a Nplate dose, if I were you, I'd sign up with Fostamatinib as soon as possible. I wonder if Imuran and/or Dapsone is helping much. But, apparently your doc thinks so. Would it be correct to say you haven't taken either MMF/Cellcept or Cyclosporine before?

In reading through old posts, it sounded like you started off row 2a in my ITP treatments table. Promacta and Pred is a good combination with that - hence my question. Now, with the higher Npate, it seems like row 4 is in play.
ITP Types and Treatments by HAL
More
7 years 3 months ago #63880 by AnneMarie P
Replied by AnneMarie P on topic Fostamatinib, Nplate prednisone, imuran and dapsone
No, I tried Cellcept last year for a month but it made me very ill. I have never taken Cyclosporine. I tried to stop the Dapsone once but had bleeding on day 2 so I went back on it. I might try again. The Imuran hasn't been a problem and the other auto immune mysteries in play seem to have quieted down from it. I recently reduced the Nplate by 10% but my count dropped down to 15 so I went right back to the higher dose.
Thanks for the advice. I'll ask about the treatments table status.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 3 months ago #63884 by Hal9000
Replied by Hal9000 on topic Fostamatinib, Nplate prednisone, imuran and dapsone
Marie, I hope I've helped.
LOL, my ITP table is my own creation. It is based on PDSA forum member reports that I've read here on what does and does not work. As you know Fostamatinib is very new. Hopefully, as success and failure reports come in, we'll all have a better understanding. Both you and Jason may respond well to it. Steroid, IVIG, and Nplate responses going in seem to be mostly similar. The exception being he has a 1 week IVIG response (as I recall), and I assume you continue to have no useful IVIG response. If you end up trying Fostamatinib it will be interesting to see if that difference translates into a Fostamatinib response difference.
ITP Types and Treatments by HAL
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