Viewer Comments: Thrombocytopenia - Experience

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Thrombocytopenia - Experience

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Comment from: MAMF, 45-54 Female (Patient) Published: November 10

I was diagnosed with ITP at age 27 (I am 45 now). I too was shocked because it appeared out of nowhere. All of a sudden my legs were covered with small red dots and I had no energy. By the time I went to the doctor and had a blood test, my platelets were at 9,000. I was admitted to the hospital that night. Luckily, all the other tests that were taken (including a bone marrow biopsy) were clean. I responded well to the prednisone but it took 5 years of taking this medication on and off before getting back to normal. I have not had any recurrences since. I hope the others on this post have the same results - don't get discouraged.

Comment from: 19-24 Female (Patient) Published: October 06

I am 20 years old. I was diagnosed with severe thrombocytopenia, and we are still trying to figure out the underlying cause. Basically, one day I just woke up one day feeling like I was hit by a truck. Two weeks later I am going in and out of the doctor's office complaining of severe pain, and he cannot figure out why so he sends me to the E.R. only to find out that I have a platelet count of less than 7,000 and my body is spontaneously bleeding just about everywhere, and in my brain. Another four hours (their guess) and I would have been dead. They did a transfusion, and kept me in reverse isolation for three days then sent me home. I have been on steroids ever since. They have still not figured out why that happened, only that every time they take me off a steroid pill, my platelet count drops by 100,000. And now, I 'm on my last pill. They are taking me off of it this week to "see how I do". Wish me luck...

Comment from: Rachel, 65-74 Female (Patient) Published: September 10

I feel like a guinea pig. I have blood draws regularly, but limited treatment. One hospitalization with high dosages of prednisone, then immune globulin, and suggested experimental drug with harmful side effects. Over a three year period my platelets hovered in the 70-90 range. Now they are 36 and I am on a short-term dexamethasone treatment with a possible consideration of another highly experimental therapy. My liver is starting to show some elevations, I recently had a lot of X rays and I think the x-rays may have lowered my platelets. Not enough research in this area. More needs to be done. Causal factors need to be found and treatments that are safe need to be found. Cortizone is not the answer either.

Comment from: Hopeful, 35-44 Female Published: September 10

I asked my doctor if I could have a blood test to check my vitamin levels. I was feeling tired, loved to eat ice. The results appeared to show that I had a severe case of anemia. I started taking Iron Supplement. Followed by another blood test all areas related to anemia appeared to look normal but my platelet counts went down to 14. Following another blood test 4 days later platelet count went down to 10. I wasn't experiencing any bleeding except for a strange (something) looks like plantar warts on one of my foot. I was advised to go into ER. ER doctor suggested optional platelet transfusion. A Hematologist speculated ITP or TTP. So I've started taking prednisone. I've been feeling perfectly fine. I'm just concern with 5 weeks of taking prednisone the side effects that I my experience.

Comment from: TTP survivor, Female (Patient) Published: January 10

I have TTP now. I was diagnosed when I was 27 years old and now I am 38 years old. I went to three different hospitals and my symptoms were: vomiting, big red bruises all over my body, seizures, bleeding from gums and ears, confusion, and in and out of consciousness. I was saved when I went to a teaching hospital and most of them never even seen anyone who had all these symptoms and still alive. I had a really low platelet count and even now, until they find a cure, I have to have plasma exchanges often, bone marrow testing, and transfusions, for the rest of my life.

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