Hi All! My niece was just recently (last week) diagnosed w/ Idopathic Thrombocytopenia. She was hospitalized for 4 days and was given Immunoglobulin IV 4 times. At the time of her hospitalization her platelet count was 3,000 (normal is 140,000). After the doses of Immunoglobulin her count went to 5,000 then 8,000 then 24,000 and she was released to go home. Wednesday she had labs done and her Dr. told her yesterday (Thurs) that her count was back down to 9,000. After leaving the hospital she was put on prednisone and now has zithromax added to it. My niece is 20 years old and is in really good health and shape (relatively speaking of course). I was just wondering if there is anyone on this board that knows anything about this disease, how you were treated and if and/or how long it took for you to be cured. Thanks for listening!!

Hello,

I have had ITP for about 25 years now. The way the doctor explained it to me way back then is that my body has too many antibodies and so it is attacking my platlets. For some reason, my antibodies think that my platelets are bad for me and is attacking them.

I lost over 90,000 in three days once. Mine got down to 2,000 and they wanted to take out my spleen, but I said no.

I wasn't given any medication. The doctor just said no contact sports, asprin, and don't get in a car accident or I'd bleed to death.

I still get the tiny red spots (petechie), but my platelets returned to normal on their own.

On the other hand, my Uncle and it, along with a brain tumor and died from hemmoraging. I don't think that will happen though.

Take care,
Gingerly :angel:

sdampier,

Sorry to hear about your niece. I was DX'ed with ITP about 7 years ago when I was about 20 years old and in great shape. My platelet count dropped to 2,000. I was hospitalized for about three weeks and put on prednisone. I was given IGIV, but it did not seem to work well for me. I think the only thing that helped was the prednisone and time. I don't think they really now what causes it (hence idiopathic), but they know how to treat it....although I think treatments work on some people better than others. As for a cure, from my research and discussions with hemotologists, it is a disease that can come back 5, 10, 20 years down the road, or never show up again.

I would be more than happy to answer any more questions you or your niece have. There is also some very good information on this board as well if you look around a little.

Best wishes to you and your niece!
-jakedog

My husband was diagnosed with ITP approx. 6 weeks ago. His platelets dropped down as low as 4,000. They gave him 2 bags of real platelets, which had no affect at all. Then he received the immune globulin for 5 days along with mega doses (iv) of predinsone. He was released from the hospital, had to go each week for blood tests, and each week the count continued dropping. He had to go back to the hospital as an outpatient and receive more of the immune globulin for 5 days straight. His count got up to 340,000 (highest ever) but after a week dropped back down to 120,000 and he is STILL taking 2 1/2 pills of prednisone daily. It doesn't seem as if the pred. by itself is keeping his platelets up. We aren't sure about the side effects of so much prednisone, and don't know if they remove his spleen, what if the platelets STILL drop? Any suggestions or if any of you have had your spleen removed....did it work for you?

My 3 year old neice had this years ago. (she's 19 now). She was put on Prednisone only, and within a few months was back to normal. I don't know if children do better with this..? I hope it never returns. I never knew so many adults get this too. Another one of those strange autoimmune diseases...
Deda

I'm new to this board...

In 2000, my mother, 48, was diagnosed with Hodgkin's Disease. After rounds of chemo and radiation for 2 years, she had a stem-cell transplant which put her in remission for the past 3 years. However, she then developed ITP, which may or may not have been a result of the transplant. Needless to say, she was perfectly healthy aside from this "thorn in her side". Her platelets dropped in Feb 2005, and she was hospitalized for a few days and give immuno globulin IV which brought her counts back up. Since, she was on prednizone. As she was weaned off the steroids a couple of months ago, her counts began to drop once again (down to 3000), and she was again hospitalized on May 31, 2005. Her doctors decided that she needed to have her spleen removed on Monday, June 6th. We were all with her on Sunday night, and she was totally fine. At 3am on Monday morning, just 8 hours before her scheduled surgery, she woke with a terrible headache, loss of sight, and within 10 minutes, was in a comotose state. She had started bleeding in her brain, and because of the low platelet count, the bleeding could not be stopped. She had surgery to drain the blood in the hopes of survival with minimal brain damage, but she passed away on Tuesday, June 7th at about 4:30am at the young age of 53. I, her first born, 27 yr old daughter, miss her so much.

I'm not trying to depress anyone, but to make you aware that this is a much more serious problem than patients are led to believe. Please take this blood disorder seriously because if you don't, you or your loved one could be part of that "very rare possibility" of something terrible happening.

Good luck to all of you, and thank for listening.

I was diagnosed a year ago with ITP. I wasn't responding to treatments so we opted for spleen removal. So far so good, but I don't consider this a cure. There is no cure, only treatments that may or may not work or work for a while and stop. I'm just glad I'm treatment free for a while, but I worry all the time about getting a virus or infection, because there's no spleen and I have two other autoimmune diseases my immune system is pretty much shot. Many people live normal lives with ITP, and consider it a pain in the neck more then anything. There's a very good site about this with a lot of great information, just search PDSA.ORG :)