I don't know what to do now...

So I was diagnosed with ITP at 17 years old in 2012.

I've tried Prednisone and that didn't really boost my counts that much, and I requested I stop it because I was getting so many of the side effects.

My doctor suggested a splenectomy or Rituxan and I decided to go with the Rituxan - which also didn't help.

I've been having IVIg treatments every month but now but for some reason my counts are taking longer to decline. First time I had it, my counts would drop in weeks; however now it would take a month and 2 weeks to reach danger zone (<20).

The doctor wants to see me in 2 weeks, I however am really against taking my spleen out. Especially since there isn't a high successful rate - 65 isnt high enough for me & complications of catching another autoimmune disease is not something I need lol.

After reading some messages, i've noticed these treatments;
WinRho
Nplate
Promacta


I did try holistically healing myself for a year, that did not help put me in remission - so i've somewhat given up on that. I was wondering from everyone's experiences here what I should try next. My doctor wants the spleenectomy done. I'm turning 20 this october, so I know my age also can contribute to reacting to certain treatments.

Just want to say it takes a lot of courage to handle a chronic illness, its tough making decisions. Sounds like you are doing a great job thinking for yourself and taking care of yourself! You have to live with whatever treatment you choose, not the doctor. Good job standing up for yourself. You can take your time deciding which way to go, it sounds like theres no hurry.

Just my opinion but it sounds very positive whats happening with Ivig. People do have remissions, perhaps that will happen with you. Thats another reason to not have your spleen out just yet. Your ITP could turn around and go into remission.

Do you have bleeding issues when counts are below 20K? My first doctor tried to keep my counts over 50K with too many drugs. He was way too domineering for me- he stressed me out. so I found another hemo who was very nice and listened. Now I know that I am fine in the lower numbers between 10K-20K so I can take lower doses of drugs. Its really live and learn.

I am taking Promacta now 25mg. Its a pill that I take in the middle of the night so it doesn't interact with any food esp calcium. Most people take 50mg and I may have to increase the dosage someday. The idea is to keep the dosage low enough that your counts stay around 50K. Its not designed to make your counts normal. My counts are around 20K and thats fine for me since I don't have bleeding issues.

I can't say whats right for you, except just trust your instinct. Something will come up that seems right. I've had ITP for 5+ years and if I could do it over, I would have taken smaller doses of fewer drugs. So far I've kept my spleen- I'm kind of attached to it!

- best of luck and good health!

Thanks! I really hope for remission, it's hard for all of us with ITP. When my counts are under 20 I only get petichae. Nothing too bloody but I suffer from major fatigue. I can feel my spleen enlarging sometimes and it worries me but I'm hoping to stay with a spleen