Hello all, 2 years ago, the week before xmas 2011, I went to my dr for an annual blood test and my platelets were around 50k. I had no idea what that meant and of course went to dr google and scared myself to death with every possible illness. I found this forum and read every possible post I could. For one year I went on prednisone by order of my hematologist. He wanted a spleenectomy right away,but I decided to see how this would play out. I only needed approx 25-20 mg everyday to control my platelets, but the side effects were bad. I felt like I lived in a bubble for about a year. Kinda like a terrible head cold all the time. Dizzy, stupid, isolated.
Finally in Feb 2013 I went in for a spleenectomy, after about 3 weeks my platelets were up to a max of 800k. I was really happy finding out this news, and my platelets dropped back to a normal level of 200k in march 2013. I was on prednisone for over a year at this point and it took about 2 months to slowly ween off of them. In May 2013 I was off steroids and I was "fixed", but in July 2014 for my monthly checkup my numbers were at 30k. The dr's insisted I go back on 20mg a day, but I refused knowing how bad the side effects were. I told them 10mg was all I would do. A couple weeks later my numbers were back up over 100k, and I have since been able to keep my number above 100k with 2.5mg every other day of prednisone.
There are still options to try additional treatments, but I feel the dosage that I am on has minimal impact on my body and life. Trying nplate or rituxan is not needed for me at this time. Since I haven't mentioned it before, I am 31 years old now. I have never posted on this site, but have read many others stories to help comfort myself over the years and decided that I needed to post something to help give people different perspectives.
One weird thing that has happened to me since surgery was that I have been open to more autoimmune problems. In may 2013 I start itching like crazy. Hives and red skin.(dermographism) The dr's say that one autoimmune problem can indicate additional ones will manifest. Allegra controls my itching, but if I dont take it every 12 hrs I feel like I have to rip my skin off. Weird?
Anyway, I'm here to tell everyone who is newly diagnosed that every story is different and everyone handles treatment different. I have 2 lifelong friends that I never even knew had ITP till I did. It is controllable and your life will be happy and as normal as you allow it to be. I spent years worrying. (I stress over everything). Dont rush to surgery or crazy IVIG treatments until your comfortable. I had bad serum sickness when I had winrho and it didnt work for me. Everyone of us are different and respond to different treatments. Stay positive! It's not the end of the world, after 2 years I just stop thinking about it.
Every story is different, but everyone here will help you through it. Please contact me if you have questions
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