Platelet Disorder Support Association

Join Us:

Membership Matters

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!

Myelofibrosis--lowering platelets even more

  • karenr
  • Topic Author
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
More
5 years 2 months ago #70279 by karenr
Myelofibrosis--lowering platelets even more was created by karenr
Does anyone have any experience with this bone marrow disease? If so, I'd appreciate any comments you have. I know the condition is rare, so I'm not expecting much feedback.
My myelofibrosis may or may not have been caused by the Promacta I've taken for a couple of years. If I'm lucky, it is the cause, and it will eventually reverse itself. It's possible, however, that the disease is primary.
Although I am now on 30 mg of pred/day plus Tavalisse, my platelets are very low (18K yesterday), apparently because the disease lowers platelets too. This is very discouraging.

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
5 years 2 months ago #70281 by mrsb04
Replied by mrsb04 on topic Myelofibrosis--lowering platelets even more
Karen my heart goes out to you.
My understanding is that generally stopping Eltrombopag should reduce myelofibrosis.
Stopping Eltrombopag abruptly would cause a crash of counts. Hopefully they will rise on that much Pred. I tried Fostamatinib unfortunately it did not do a thing for me

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

© Copyright 1997 - 2026, Platelet Disorder Support Association. All rights reserved.

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.