Just Saying Hi & Checking In

Hi Guys,

It's been a while since I checked in and just wanted to say "Hi." My family recently moved to Boise so that meant a new Hemo. Fortunately, he is on the same page as my last one - do nothing unless issues arise.

I've been diagnosed since about 2000, and my counts still average around 50K (the last one was in the high 40s). My lowest recorded was 6K, and I have probably dipped really low many times but it doesn't get measured. My history of ITP for over a decade, along with no real complications (apart from bruising, light bleeding issues if I cut myself), allows me to live normal and rarely see the Hemo. In the past, I had been put through the ringer with every possible test, but still have my spleen and haven't been on Prednisone for over 6 years. I now rarely think about ITP.

For me, having chronic recurring ITP is just my "normal." It's something I have to live with. I have learned to watch for issues, but largely put it out my mind. It may be the same for many of you.

Take care,
Todd

It's great to hear you're doing well with ITP. I'm also pleased to hear an encouraging experience with ITP from someone who's had it for quite a while.

Hey Todd. Good to hear from you! I'm happy that you have things under control with few problems.

Sounds like 2 good doctors and glad to hear your leading a normal life. Can I ask how often you get a count?

Todd I'm curious as to if you ever tried Rituxin? I avoided it for over a year but I need not have worried. Worked great for me. Guessing you have tried it given you were diagnosed 14 years ago.

Winnifred wrote: Sounds like 2 good doctors and glad to hear your leading a normal life. Can I ask how often you get a count?

For the past few years, it's only been about 2-3 times/year. Once at my hemo and then at my primary during checkups and physical. Before that it was weekly! While I've had dips, the long-term average is ~50k. The last two were 47 and 52. With my primary checkups, my hemo is happy to only see me yearly, unless the need arises. I guess that's a benefit of having ITP for 14+ years with no real issues to date.

russp wrote: Todd I'm curious as to if you ever tried Rituxin? I avoided it for over a year but I need not have worried. Worked great for me. Guessing you have tried it given you were diagnosed 14 years ago.

No. The only treatments I've had were prednisone and IVIG once. My original hemo wanted my spleen out and Rituxin, but I sought a second opinion. The next hemo saw no need for any treatment so long as I wasn't a bleeder and kept my average counts.