We have created this Guestbook to allow our website visitors to ask questions and express their opinions. These comments are a valuable source of information about platelet disorders. We may respond to some of the inquiries when it is appropriate, but we will not respond to most questions or comments. The Guestbook cannot be a source for medical advice; patients must get their medical advice from their doctor.
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|Post 21 - By: Madhu - Post Date: 1/22/2012|
I am 50 year old female from Houston, TX. I was diagnosed with TTP on February 3, 2011, hospitalized for couple weeks, underwent plasmaperesis treatment and was on Prednasone. I got a relapse during my remission on September 28, 2011 and was treated again with Prednasone and Plasmaperesis treatment. This time with an infusion of Rituximab was added. I still feel tired and I'm still on 2.5 mg of Prednasone.
Are there any patients who have had TTP again even after the Rituximab treatment. Please advise me. I don't want to have anymore of this.
|Post 22 - By: Margie Gelbach - Post Date: 1/7/2012|
|My nephew, Nichael McKee was diagnosed with TTP five years ago and suffered renal failure. He was never followed up with blood testing and has recently been under going very radical changes in his personality. Sometimes he is very angry and verbally abusive to others around him. he will mix7-up with pickle juice and put a candy cane in it. Totally off the wall.
Is there a possibility there could be a connection to the TTP or is this something else alogether. We can not get any information from the University of Columbia, Columbia, Missouri.
Any chance of getting an opinion from one of your physicians?mansmine
|Post 23 - By: elizabeth grissom - Post Date: 12/28/2011|
|my daughter nikki is in doc georges study group ,,,nikki does well at times she is always in pain,,,stomache problems and major headaches,,,,she gets weak,,,and sometimes she rabbles and cant remember things,,,i know that this is part of her TTP,,,,she refuses to give in,,
|Post 24 - By: elizabeth Schwartz - Post Date: 12/24/2011|
|As a person with del20q myelodysplastic syndrome, and platelet counts below 50K for a year now, I am obsessed with learning about platelets. Will you be including my platelet disorder in your studies in the ner future, also?
|Post 25 - By: Leslie Amsberry - Post Date: 11/16/2011|
|thank you for this very informative website. I was diagnosed with TTP in 1995, treated at a Kaiser facility in California. 39 plasma exchanges, Steroids and vincristine knocked it down over a 6 month period and never returned, until January, 2011. I recognized the symptoms and went to the ER immediately, spent two weeks in the hospital, received 6 plasma exchanges, steroids again, but counts went up and held, so I was released. I get my blood checked every 3-4 weeks now, and feel very lucky that the relapse, after 15 years, was mild in comparison to the first episode. I feel great now, but get occasional headaches that can last a couple of days, even though all blood counts are normal. That seems to be the only affect I am aware of, other than the thought that TTP can return. D you have any information on flu shots and TTP? I don't want to upset what appears to be working, as i take no medications of any kind, but some material suggests a relapse can occur
following the flu. Is the vaccine to prevent the flu a greater risk than actually getting the flu for someone like me?
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