your symptoms are identical to mine when I decided to see the doc: blisters in the mouth, pin prick dots on my legs. And then same as you, I was called into the ER and ended up there for a week. Everything disappeared and started with the prednisone.
I was freakin out.
But I decided not to let it interfere with my life.
I went home, and immediately got back into my routine of work and exercise and all of that.
I get a good solid work out 6 days a week and have been eating REALLY well, like no processed foods, very very little sodium. I strive for 0 sodium, but that will never happen and you NEED sodium, but it's in an abundance in all our food and impossible not to ingest here and there so to strive for that is good. Also that will prevent you from getting really bloated from the prednisone.
I gave up coffee, caffiene, soda, carbonated drinks, red meat, cheese, and enriched (white) pasta and bread completely from my diet. Fast food of any kind and candy is COMPLETELY out of the question. I drink water ALL DAY LONG and lots of fresh (not canned) fruits and veggies. I eat salmon, chicken, pork loin or other fish every night for dinner and small similar meals every 2 hours.
Now there are a lot of people who say that diet and exercise doesn't affect the side effects of prednisone. But I challenge that theory as the people who tell me this, never really exercised or really watched what they ate.
I never got depressed. Never gained weight (in fact I am getting leaner and my workouts are getting stronger than pre-ITP!), and I feel great.
I am tapering off the Prednisone now. My platelet count was 300 last week when I was on 15mg of prednisone. That was my highest count since 2005 (in 2005 I had a CBC as a part of a routine physical and my platelets were at 205, I was not diagnosed with ITP until just a few months ago). My count was just 5 when I went in initially. My platelets have been strong so far.
So I am not a doctor, but from my experience, a healthy, active, lots of fresh air lifestyle has helped me a lot I think. Whether or not my theory is legitimate, I don't know. But I can promise you it doesn't hurt to try. I am healthier than all of my friends who DON'T have ITP. If my counts plummet again and I have to seek new treatment, I will do that. But I don't feel this is the end of the world. It's all what you make of it. I am healthier post-diagnosis than I was pre-diagnosis.
Most of the people who post here are new to ITP, scared, and we all go through it. The people who are used to having it are out living their normal lives and probably don't even think to come here and post about how good everything is.
Take it one step at a time! Don't obsess over it like I was doing at first. I still kind of obsess over my platelet counts and will probably do so for the rest of my life, but I DONT let it keep me from doing things I love.
I'm not cured or in remission or anything like that. I have no idea what's gonna happen when they finally take me off Prednisone completely (right now I take 15mg every other day and nothing on the days in between). I still have a lot of uncertainty ahead of me. I could even have to get a splenectomy, who knows! But I will just take it one step at a time and no matter what, I plan on using this to improve myself as a whole, mentally and physically.
As for tapering, so far no withdrawal effects. Mind you I am at 15 every other day. It's when you get to 5 that things start to get freaky. But most people start feeling symptoms when they miss a day. I have not. I think that the fact that I exert myself every day with a long, hard run, or a fast commute on my bike or a solid session at the gym, I am also exercising my adrenal glands, even though I am on Prednisone. Once again, this is a theory with no medical backing. Just my own hunch. I will let you know if I wake up achy and gloomy! ha! Then I will eat my words!
I love this forum, but if there's anything I have learned from it - don't obsess about other people's gloomy stories, especially about the prednisone. Mind over matter, get out there and have fun.
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