I also have ITP, and there are several others of us in the area who have ITP. There is a great online resource – the Platelet Disorder Support Association – www.pdsa.org. It will help explain more about what can cause low platelets, the various treatments and how well they seem to work, and will inform you of support group meetings. We just had a support group meeting in September…so sorry the timing was off for you. What questions do you have?
My playlets count runs between 20K to 30K and that is after 8 rounds of IV Rituxan infusions, before that my playlets count would go down to 14K. Still it very hard to keep it above 20K, last week I was at 22K and going down again. My MD is taking about taking my spleen out!! Is any one out here had good results after splenectomy, I am 59 and fully employed physical therapist.
I’m sorry Rituxan didn’t work for you. I responded well, and have been in partial remission for about 7 years. My platelets are still somewhat low, 130K, but they are stable. From everything that I have read about splenectomies in adults, I would use that as my last resort. It seems to help for a while, but eventually, the liver takes on the task of destroying the platelets, so it doesn’t last more than a few years. You might go to the PDSA (Platelet Disorder Support Association) website and read some of their articles. They have research articles and patient input, so you get both ends of the spectrum. Good luck!