My name is Loretta Brody and I am 73 years old and I live in Tucson, Arizona. My first experience with TTP was March 8, 2012. I was out shopping with my husband when I started feeling strange, my speech was slurred and I seemed disoriented. He sat me down and called the paramedics, but by the time they got to me, I felt fine and decided I didn’t need to go to the hospital.
However, I did follow up the experience by going to my cardiologist. He took a battery of tests and told me they all appeared normal, but he put me on Plavix anyway. After only one week on Plavix (one pill a day), I passed out while I was at home. I was taken to the hospital and given a CAT scan, but again everything seemed normal. Luckily, the doctor in the ER noticed petechiae (blood spots) on my legs and that I was looking jaundice. They drew blood, which revealed my platelets at 6,000.
I was started on Plasmapheresis and spent 10 days in the hospital. When I was released, I was put on prednisone and received 2 additional weeks of Plasmapheresis as an outpatient. The doctors hypothesized that it was the Plavix that caused the TTP and I assumed that the treatment had succeeded and I was once again healthy. That was the case for only 14 months until I relapsed.
Again, I thought I had a mini stroke and was checked out by the paramedics. This time, I went straight to the hospital, where my blood work showed my platelet count was 9,000. I was immediately put on Prednisone and received Plasmapheresis again. I was only in the hospital for 7 days during my relapse but, like my first episode, I received 2 weeks of outpatient treatment. During my relapse my doctor (a haematologist) also gave me 4 infusions (once a week) of retuxin. I was kept on Prednisone for a few months before being weaned off.
I am happy to say that my hair is starting to come back, and while I have muscle aches, I’m otherwise feeling ok. I am always afraid that the TTP will return again because the doctors cannot definitely say how or why I got it, which is very scary. I have ruled out Plavix as the cause of my initial TTP diagnosis because I was not taking it before my relapse. Prior to March 2012, I had never heard of TTP and hope to never relapse again.
I was happy to find the Answering TTP Foundation. I joined the Foundation’s Patient Connect Program and have been able to gather more information about TTP, while also hearing other patient’s stories. Perhaps with more research, there will be an answer to TTP.