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!

Promacta side-effects

  • 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
6 years 10 months ago #65388 by karenr
Promacta side-effects was created by karenr
I've only been on Promacta since November 19, and my body is still reeling from the almost 18 years on prednisone and its taper, so it's hard for me to know what symptoms are caused by what. I note that one of common side-effects for ITP treatment is stuffy nose and/or upper respiratory infections. I have allergies anyway, but an air purifier has helped with those. I can barely breathe, though, out of my nose since I began taking Promacta. Have others had this problem? Is it likely to continue, or will my body become adjusted to the drug and the problem decrease? A squirt of Afrin helps, but one shouldn't take that regularly. Any suggestions?
  • 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
6 years 10 months ago - 6 years 10 months ago #65392 by mrsb04
Replied by mrsb04 on topic Promacta side-effects
I never really had any side effects at all for over 14 months of messing about trying to find an appropriate dose whist tapering prednisolone. I commenced 50mg daily in April this year. Counts stabilised rapidly to low 40 for net 4 months then gradually climbed to over 90 for the last couple of months. However for the past few months I have noticed increasing bouts of insomnia with subsequent fatigue, and decline in my appetite, having to force myself to eat at times. I have lost a bit of weight.
I can draw 2 conclusions for this;- I cannot tolerate either a dose as high as 50mg a day or the level of extra megakaryocytic production. It may be one or the other or both.
I'm quite happy with a platelet count in the low 40s so am taking 37.5mg a day for a while to see what happens to my count and symptoms.
The following user(s) said Thank You: karenr
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