My 16 year old ITP story

Hi my name is Brock and I was diagnosed with ITP when I was 8 years old and am now a 23 year old. I have been aware of these message boards but have never posted and I feel the need to share my story. I don't really remember the initially being diagnosed, but the docs thought that it would be an acute episode and would go away. Unfortunately it decided to come back. During my teens my ITP episodes would come in cycles. I would have normal counts for about 6 months and suddenly my counts would crash below 10,000. It was treated with steroids and IVIG. However, I always hated the way the steroids made me feel and severely impacted my self esteem. The doctors and I decided to try Rituxamb and see if that would make a difference. I received my first round of Rituxamb when I was 15. The results were great. I had normal counts for about a year and half and then they would crash again. So about every year and an half I would receive another Rituxamb treatment. However, after my last dose of Rituxamb in 2012 I became very sick after the treatment. I was netropenic and had zero white cells. I fought a very serious infection for a week in the hospital as a result of this. The netorpenia continued throughout 2013 and we were worried that I may have other issues besides the ITP. We flirted with the idea of a splectomony, but I had a really strange reaction to the vaccinations that were given to me. After further investigating it was determined that I also have common variable immune deficiency and my antibody levels were at zero. So I am no currently receiving IVIG transfusions to maintain my IVG levels. It has been working so good so far and hopefully this will keep the platelets at a stable level too. This is basically a brief summary of my medical history, but I don't feel like describing every detail lol.

I guess the hardest part about this condition is how it mentally effects me. I was not able to participate in many things that my friends were doing and I also found it hard to trust people. The best thing that has helped was discovering the game of golf. I am very competitive and I could put my energy into a wonderful lifetime game. It honestly probably saved my life.

Thanks for reading,

Brock

Hi my name is Valerie. I am 28 and was diagnosed at 27.my counts are at 2 It is an emotional rollercoaster ride. I initially responded to IVIGs (4 times). Tried low dose Nplate with. Minimal success , steroids ( no success )and Rituxin ( which I failed) the doctor said the only thing l have left to do is splenectomy. Well after being on here and being well informed I knew I had other options. I saw a specialist who tried me on high dose Nplate and wa la my counts were in the 100's and stable. However I was very achy. My doc recommended Promacta and I have no side effects and my counts are between 55-115, which is great to me. This drug helps me feel a little more normal. It's great that golf has saved your life. For me it's my dogs. They have been there with me through thick and thin. I'm now helping rescue dogs find homes which has been very rewarding.

Hi, there are a few of us here with immune deficiencies as well as ITP so welcome to our small but exclusive club!