Promacta

My daughter started taking Promacta today. My guess is that her platelet counts will respond to it (fingers crossed) she responded to other treatments but her counts quickly afterwards.

There was a little bit of a delay in starting because they were hoping that she would be able to participate in a study about whether Promacta helped improve the "quality of life" symtoms associated with ITP. The doctors had asked her if she would be willing to do it when we decided to treat with Promacta and she agreed. I was getting a little annoyed because when we received the medication and I called the doctors office for instructions, they told me I had to wait to sign the consent and get the protocols. I called 3 times last week without getting a response and was getting annoyed. They called me yesterday and told me she was not eligible to participate in the study because she is 18 (it is a pediatric study) and I realized that this was the cause of the delay, not just an improper response from doctors office. It is funny, her counts have been down low again for 2 months (<5 in April and 8 at the end of May). For the most part I would not have thought they were that low. She had her senior prom last Thursday and went away with some friends last weekend and I was hoping that she would make it through without any issues. As it got closer I was feeling pretty confident because other than bruising she seemed so much better than she was last winter. She made it through and had a great time, but it is like she has crashed now. More bruising, mild nose bleeding and once again pronounced fatigue. Her symptoms are still not as bad as this past winter, no petechiae not the amount of gum bleeding and the bruises are not as deep and severe but the difference between last week and this week is really noticeable. My biggest concern is that the Promacta will not help the fatigue and autoimmune issues, but we are hoping for a good response and feeling better!

Terri:

Usually once the counts go up, fatigue gets better unless it is caused by another reason. Hopefully, she will do better once Promacta kicks in.