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!

HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO

More
13 years 1 day ago #28766 by kym
HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO was created by kym
hi every1 todays count was 105 highest its been since being diagnosed a month ago i did an ivig everyday this week mon- fri .i know its only a band aid but the prednisone and dex didnt work taper n myself off the pred was at 100mg. since wed i been taking 90mg will go dwn 10mg a week till the dr stops me but i want off i stay in the single digits 9 and under while on 100mg not working. i feel a little normal again after a month of spontaneous bleeding, dont bump ur head, dont blow your nose to hard,just thank n GOD first and foremost and the PDSA family.counts again wed hope they hang above 30 every1 enjoy there weekend.
More
12 years 11 months ago #28975 by kym
Replied by kym on topic HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO
went for labs friday a week after the IVIG counts dropped to 27 wont complain cause the PDSA informed me to expect it and with all thats happening on the east coast how dare i complain hope they hold steady the dr wants me to do labs in another week and see him on the 14th of nov, I am back on edge since I have been in single digits since being diagnosed 6 weeks ago.wiped my nose seen a trickle of blood and that stopped me from leaving the house today taper n me off the pred dwn to 80 mg that is one treatment I want to quit asap its not working far as counts I need to research more on it maybe its helping with the bleeding.Has any1 heard that ITP is related to food allergies and it could be something you always eat? UGH its primary for me
More
12 years 11 months ago #29166 by Larry
Replied by Larry on topic HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO
Hang in there Kym! Have you talked with your hematologist about a treatment plan (one that doesn't include a splenectomy). It sounds like your treatments are jumping around as much as your counts. I know I felt better once there was a clear plan and something that felt sequential in place.

Am I the only one on here that thinks there should be a "Hands off my spleen!" t-shirt in the products section?
I'd wear one to every appt! :laugh:
The following user(s) said Thank You: kym
More
12 years 11 months ago #29189 by apalombit
Replied by apalombit on topic HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO
Hi, Kym. I am kind of in the same boat. I had a platelet count of 3 and put on 60 mg of Prednisone. The next day my count was still 3. I took another 60 mg of Prednisone and my counts went down to 2. So immediately I get an infusion of IVIG. That (along with my daily 60 mg of Prednisone) brought my count up to 20. Then after my second round of IVIG it was 35... and after my third it was 110. I went in today for a CBC after not having an infusion since Thursday, but still taking my 60 mg of Pred. I hope that it doesn't go down too much!! The waiting is awful. I have my cell phone just sitting next to me waiting for it to ring. :)

I am not sure about food allergies, but I am doing a lot of research on diet for ITP and for when I am on Prednisone. When I say research, I mean Google. :)

Good luck to you!!!
The following user(s) said Thank You: kym
More
12 years 11 months ago #29203 by SMorton1973
Replied by SMorton1973 on topic HIGHEST COUNT SINCE BEING DIAGNOSED A MONTH AGO

Larry wrote: Hang in there Kym! Have you talked with your hematologist about a treatment plan (one that doesn't include a splenectomy). It sounds like your treatments are jumping around as much as your counts. I know I felt better once there was a clear plan and something that felt sequential in place.

Am I the only one on here that thinks there should be a "Hands off my spleen!" t-shirt in the products section?
I'd wear one to every appt! :laugh:


I am very much agreeing with the t-shirt idea ! I made it very clear that they will not remove my daughters spleen. Ever. :angry:
The following user(s) said Thank You: kym
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