Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: numbers wont seem to go up

numbers wont seem to go up 8 years 9 months ago #6279

  • hunter1010
  • Offline
  • Posts: 3
  • Thank you received: 0
i am an adult with itp and i have had predisone rutuxin and nothing has worked my doctor wants me to try nplate but does antone know the side effects of this drug or has anyone takin it

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

Re:numbers wont seem to go up 8 years 9 months ago #6282

  • server
  • Offline
  • newcreationchangingdaily
  • Posts: 653
  • Thank you received: 16
Hello! :)
I started out with prednisone with no results also. I've had Rituxan and NPlate. The NPlate brought my numbers up quickly and very high. Try their website, www.nplate.com . You will find all kinds of info there. And just do a general google on NPlate, there's even more info! I finished the Rituxan about a month ago and am just now noticing a steady rise in my numbers. Whew!
In reply to your other post about joint pain, I don't think the pain is from the ITP, I believe it's from the meds. I know NPlate started my joint pain and the Rituxan only intensified it.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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

Re:numbers wont seem to go up 8 years 9 months ago #6346

  • Grammalinda1@msn.com
  • Offline
  • Posts: 9
  • Thank you received: 0
My son, age 30, was diagnosed with ITP 4 weeks ago. He has had many platelet infusions, ImmunoGlobulin infusions, and shots that temporarily raise his count to around 5,000. He was in UCSF for 2 weeks, and has now been home 8 days. His latest count was 2,000. He has intermittent nosebleeds and many petichaia on his face, arms, body, and legs. He has had a nosebleed constantly now for 3 days, and is passing black, tarry stools. He says his stomach hurts and cannot eat.He is very pale. His wife just took him to his local doctor, and perhaps he will have to return to UCSF. Nothing has worked for him, and now they are talking about a splenectomy. If that does not work, am I going to lose my son? His little boys are 2 years, and 3 weeks, old.

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

Re:numbers wont seem to go up 8 years 9 months ago #6347

  • youngjoan
  • Offline
  • I founded PDSA after recovering from ITP (7 failed treatments,zero count.) Read my story on the web site (search on 'success story.)Read more about me and my book, Wish by Spirit, at www.joanyoungwrites.com
  • Posts: 60
  • Thank you received: 4
It really sounds, from what you describe, that your son needs some immediate care. The pale face and black tarry stools are not a good sign. I know that Dr. Patrick Fogarty is an ITP specialist who works at UCSF, although I did hear a rumor that he left there. I agree that if the docs haven't tried NPlate or Promacta, that might be a good step. However, they take about a week to work and must be prescribed by someone in their programs. Besides, it sounds like he needs help NOW.

Joan

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

Re:numbers wont seem to go up 8 years 9 months ago #6354

  • Grammalinda1@msn.com
  • Offline
  • Posts: 9
  • Thank you received: 0
He is at his local doctor's office right now. He had Hodgkins Lymphoma 4 years ago, and has been in remission for 3 years. So the doctor he is seeing today is actually his oncologist. I think he has some experience with ITP with other former patients. He originally told my son, Neal, that the chemotherapy drugs and radiation used on him was not responsible for the ITP, and of course they checked to see if the Hodgkins had recurred. It has not. But I would certainly feel better if my son just went back to UCSF. The specialist you mention sounds familiar, and since he was only released from there 8 days ago, we probably met him. They also tried prednisone the first couple of weeks, but discontinued it. So far nothing seems to help much. Thank you for responding to my post. I have tried to remain optimistic, but it is getting more difficult. We may never know why he has ITP, but would certainly like some kind of prognosis.

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

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo