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Recent Entries

Post 86 - By: janie thrasher - Post Date: 11/29/2010
Itp.,it changed my life.45 years old. 2 kids in collage.I thought it was menopause.I was going in for an eblation,when they found it.The info on the web made my decisions for me.My oncogolist ran me threw the steroids.He put me in hospital right away.I've had the best of care.Nothing worked.they got me up to 50,ooo when I was down to 3000 and below.I had my eblation. then my spleen removed.I went back every week,then every two until I'm going for my six months.{they said for 2 years}last week I found a bruise that won't go away.on the inside of the calf of my leg. where I noticed them before but the other leg.We are praying its not come back.We are lu cky enough to have insurance,at this time.I know after a spleenectomy,it gets really expensive.They say the meds are worse than steroids.anyone who has been through this I'd love to hear from.Give me a heads -up if you can.
Post 87 - By: Nora G - Post Date: 11/20/2010
My daughter was dx w/ITP at age 15, not on any meds or sick at time. Platlet count 7000. Had 2 tx of IVIG with icrease to 125,000. Immediately dropped again and took 1 yr to reach 100,000 wo formal tx. She took 10,000mg of vitamin C everyday.I begged dr. to give Prednisone but wanted to see if she could recover on her own.Has been 100 or above for 2 yrs. When her count goes down she has headache,light headedness, epigastric pain. We see Dr. Sujit Sheth at Morgan Stanley Children's Hospital in Manhattan NY, Columbia Presbyterian, thank God we found him. Thought she may have Lupus,all tests negative for 5 yrs,and no symptoms of Lupus except ITP. Thanks for all you do.
Post 88 - By: Elijah Smiley - Post Date: 11/20/2010
Very Good Information for parents. My 8 year daughter diagnosed w/ itp. IVIG, Anti D, Rituximab, Spleennectomy have not been effective. Considering doing nothing except what is necessary to address bleeding. Been given option of Romipiostim, Mercaptopurine, Dapson, or Mycophenolate. Trying to learn as much as possible about these drugs.
Post 89 - By: Rita Martin - Post Date: 11/20/2010
As someone who has had ITP since 1998, I am interested in constantly learning about ITP. I am now on Promacta.
Post 90 - By: tara motowski - Post Date: 11/8/2010
Please help...i am afrais my friend, Chris, is running out of time! He is a 38yr old male and father of 3 great kids. 14 months post bone marrow transplant following leukemia diagnoses in My 2009. Currently in ICU at Karmanos in Detroit. Diagnosed with TTP. Kidneys have failed and now bleeding in his lungs. Attempted bronch but ended up on vent for 3 days.Continuous pheresis and dialysis...please respond if you can help the doctors at Karmanos who say they have neve seen a case this severe before. The family and doctors are open to any suggestions. Still coughing up blood but attempting another bronch is too risky. Thank you and God Bless you on your reseach!!

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