Patient Comments: Thrombocytopenia - Describe Your Experience

Question:Please describe your experience with Thrombocytopenia.

Comment from: Rachel, 65-74 Female (Patient) Published: August 18

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: June 08

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: David C, 35-44 Male (Caregiver) Published: July 19

I was home for the weekend and had been feeling tired an it felt like the flu. So I told my girlfriend that I was going to go wash my truck-get out of the house and maybe feel better.Well I was washing it and my right arm went numb so I kept washing for a minute then my whole right side of body went numb.I said oh shit so I jumped in my truck and hauled ass as fast as I could to the hospital.w hen I got Their I couldn't feel my legs of feet so I made it in the hospital and couldn't even speak. I was having a stroke. They careflighted me to wichita falls,Tx, I was there about hour receiving blood transfusions,The doctor that saved my life was Dr chalagala she put through 34 fresh frozen plasma treatments an was in hospital 44 days as of now no problems yet.If anyone that helped me through that horrible experience thank u very much.

Comment from: ITP_patient, 25-34 Female (Patient) Published: June 25

I am diagnosed with low blood platelet count in month of JUL12. number of platelet were 75K, however one year before it was 298K. since after I am having regular blood check ups and platelet count is approximately 100, with no symptoms. Just I was having heavy menses. but perfectly healthy with no other symptom. Problem arises when I get pregnant. In first trimester, my platelet count drops to 50K but stable. one day, I have severe gastroenteritis infection, which led to drop my platelet level 25K, and then with in few days 9K. I was on transfusion once. but after that I started taking care of my diet very closely. now it is 70 and in 5th month of pregnancy. and taking 5mg of prednisolone. now i am feeling much better and energetic. those people with ITP are need to mange their lives closely. take care of your diet rich of folic acid and vitamin B12. take lean meat in their meal. do not just go on numbers. if you have no symptoms, generally it safe. but avoid any other medication which reduce blood platelet level.

Comment from: Coach, 45-54 Male (Patient) Published: April 08

I am a 49-year-old male and was first diagnosed with ITP in 1994. I became sick less than a month after the flu. After months of prednisone and intravenous immunoglobulin (IVIG), it went into remission. I had no more symptoms until 2012. In September of 2012 I went for my annual flu shot. A week later, I was covered with red dots. IVIG didn't work this time around. Rituxan has worked so far, but unlike the 1994 bout, my counts are low. I'd say worry about getting to 50k and then live the life you have been given. You could have a million things far more sinister. If they put you in oncology, you will understand.

Comment from: GammiSherry, 55-64 Female (Patient) Published: January 03

I was diagnosed with immune Thrombocytopenia many years ago. My platelet count averages in the 35,000 range. I do not experience bleeding, but usually have many bruises on my arms, legs, and body. I need gall bladder surgery and was sent to a hematologist. He will give me N-plate shots to increase my platelet levels before surgery. I teach school, but am feeling so fatigued, weak, and have muscle aches. The hematologist does not believe these symptoms are related to my ITP. He said, "You don't feel platelets." I disagree because once I was given platelets through an IV, and for several days, I had so much energy and felt so good. I am 55 years old and live a normal life. I just do not like the bruising and wish I felt better.

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Thrombocytopenia (Low Platelet Count) - Causes Question: What was the cause of your thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Symptoms Question: What were your symptoms associated with a low platelet count?
Thrombocytopenia (Low Platelet Count) - Diagnosis Question: What tests and exams did you receive that led to a diagnosis of thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Treatment Question: What kinds of treatment did you receive for thrombocytopenia?

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