richellefleischer, congrats on being discharged. Convalescing in the hospital with a new condition that you know little about can be scary. The ER and subsequent hospital admission seems like such a confused mess. Multiple nurses, PAs, hospitalists, and nothing moves quickly. So easy for important information to get missed during patient handoffs. Many on this forum, including me, have been down the this path. Reading other's posts has helped me think about treatment options and that what works for one may not work another.
The past 6 weeks have been a real battle for me. It began when I noticed the purpura in my mouth, some on my arms, neck, and back. I knew my platelets were low and went to the ER. Count was 2K. 5 days of Ivig and dexamethasone, counts got up to 232K. The day after discharge I had a severe reaction with intense pain in my back and around my ribs, splitting headache. I thought I was dying. Back to the ER and another night in the hospital. First time I peed in the ER is was the color of coffee. Kidney tests were normal thankfully. The never determined what caused the pain and blood in the urine but I believe it was the mega dose of IVIG administered at the fastest rate from day 3-5. IV fluids and some dex and began to feel better that evening. 10 days later I had a followup with my doctor, counts were back down to 22K. Started 80mg of prednisone per my doc. 2 weeks later my count was 64K. I tapered to 60mg for 4 days. Counts dropped to 47K. This past Thursday my counts were 16K. It appears the prednisone isn't workin anymore which may be a blessing in disguise. I don't want to be on it anymore. Told my doctor I wanted to try a TPO and suggested NPlate but I found out it isn't covered by my insurance but Promacta is so that's my next step. I think my counts have dropped further since Thursday as just earlier today I noticed a single blood spot on the inside of my cheek. I am always looking for them now. I don't want to go back to the ER/hospital again just to repeat the same protocol that was only a temporary fix. I'd rather wait for the Promacta prescription and start down that road as soon as possible. My target count is 50K although at this point I'd be happy with 20K I think. I am asymptomatic when counts are > 10K from what I've experienced. I'm concerned about side effects from Promacta but I hope to start on as low a dose as possible then ramp up if needed to get to 50K.