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!

hello

More
13 years 1 week ago #28544 by sal89
hello was created by sal89
hello, im a 23 year old student from the netherlands.
i was diagnosed with itp about 4 weeks ago. my platelets count was below 4 (so anywhere between 0 and 3) when i went to the hospital. my body didnt respond to prednisone and i soon started peeing blood. after a week i almost fainted from the pain in my kidneys so they started me on immunoglobine, unfortunetly this also had no effect.
I am now getting Nplate, i got my third dose yesterday and my platelets count is now 5.
Im wondering, with what platelet counts do you guys just go out. i have only been at home and at the hospital for almost 4 weeks now, but ive decided to do something outside next week.
More
13 years 1 week ago - 13 years 1 week ago #28546 by Ann
Replied by Ann on topic hello
I go out and go to work at any count. Most seem to do the same. Many children are never treated at all and just get on with life so I assumed that I could too.

I was diagnosed with a count of 4 and had shingles at the time for which my GP gave me a sick note for a week. After that my count was still below 5 but the shingles pain was better so I went back to work. Later I too had kidney and bladder problems with pain and bleeding. I've had it three times in all and always assumed it was caused by steroids but it may not have been.

I hope you feel better soon.
More
13 years 1 week ago #28548 by sal89
Replied by sal89 on topic hello
is there anything particular i should pay attention to when i go out, i know i shouldnt fall.
More
13 years 1 week ago #28552 by Ann
Replied by Ann on topic hello
I do remember to start with I felt a bit fragile but I got over that after a while. When I started Nplate I had to travel a few hours there and back on trains.. I was on a trial at a hospital away from home. My count at that time was going up and then crashing to 1 and 2 and I did feel that I didn't want to get in a crush with other travellers in the rush hour so I sort of hung back away from the crowds. But after a while I'd forget about it and do nothing different.
More
13 years 1 week ago #28554 by sal89
Replied by sal89 on topic hello
yeh i was thinking about this too, i have to travel by train to uni every day. so i guess i dont really have to avoid rush hour.
thats great to here, cant wait to get out of the house!
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 1 week ago #28566 by Sandi
Replied by Sandi on topic hello
I worked with counts below 5 too, but I did respond to Prednisone so they weren't low for a long time. I hope N-Plate starts to work for you soon!
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