Natalie,
I've only tried prednisone so far on this round of ITP. I've always stuck with prednisone and since my hema says I seem to tolerate it will, we have stayed with it. She did discuss other treatments in case the pred stopped working.
I've been off the pred for a month now and my platelets are at 354k. Whew!!! I get blood tests every other week until I see my doctor this June and if they are still normal then we will go to every 3-6 months.
I just want to let everyone know though, esp the ones that are newly diagnosed, to hang in there. During the first month, after my ITP resurfaced, my counts went up and down a lot even when I had Dex and Prednisone and I was getting very fraustrated. My hema advised me to just wait it out a while, give my immune system time to calm down and heal. So I stayed on a high dose of pred for weeks before I even considered a taper.
When my hema was ready to try and taper, my platelets were in the 200k range, I felt I was not ready and told her that so we waited some more. Right around the time she told me I absolutely have to start the taper, my platelets suddenly went up to 450k and we tapered very slowly this time (10 mg/week) and my counts have stayed in the 350-400 range since.
Hopefully, it will stay there for a very very long time
Again, our bodies all behave differently and react to meds differently too but letting our immune system calm down and waiting it out on pred seems to be worth a try. I had anxiety attacks, food cravings, headaches, acne, the hump on my back, the moon face, falling hair, sleeplessness etc on pred too but after one very bad anxiety attack and a letting it out on a rant here on the PDSA forum, I finally decided to get a grip of myself and decided to focus on healing and on the positive.
Blessings to all of you out there!!!
Pawee
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