I have been on prednisone since November 2007 for minimal change ...

Hey i too was also diagnosed with Minimal Change Disease, my post is acutally 2 posts down from yours. As far as my experience wiht MCD and prednisone was i began on 80mg and took me around 9 months for my therapy to become complete. I had a host of side effects the most serious being strech marks because my skin lost its elasticity as well as my teeth became extremely sensitive, moon face, depressed, etc. The list is really long i dont want to bore you but if your interested though you can read my posts its kinda long unforuntately :/ . Anyways iv been off the steroid for 2 days now and as far as side effects im still experiening them. My doctor told me that it would take anywhere from 2 weeks to 2 months to get back to completely normal. This is because iv been on the steroid for so long or else if prednisone therapy is short term people usually say about 10mg a day they loose most of their side effects if not all. So my asnwesr to your question would be just to hang in there it wil get better its just a matter of time nothing you can really do about it. I wish you the best of luck.

-MrS0me0ne

By the way i was 18 when i got diagnosed how old were you?

Thanks for the info....I will look for your posts. I am 45 and the Dr. has no explanation as to why I have this disease, at first they thought it was from flying because of the edema after a flight. It wasn't until I ended up in the emergency room with pleurysy that they figured it out. How low a dosage did you get to on the prednisone when you were able to stop? Please keep me informed on how long it takes for the side effects to go away. I am anxious about how long it will take. I am tired of looking like a freak!!!!

gg

Hi looboo, I have only been on prednisone for 2.5 months, but I am experiencing the same symptoms as you now that I am tapering. I started off at 50 mg daily on May 2 and started tapering a few weeks ago. I am now at 15 mgs daily and I'm starting to feel stuff again. I have the heavy chest, trouble breathing, swollen stomach, shakes, night sweats etc. A few days ago I noticed the moon face starting to go away, maybe 10-20%, but today it's very hot and humid where I live and my face has swelled back up :( I am soooooo sick of the moon face, and I feel like a freak some days to. I can't wait to have my 'real face' back again lol. I started a new job recently and I don't feel that my personal information is any of my coworkers business, so I haven't really said anything. They must REALLY wonder WTH is going on with me, but I don't care. I am not a superficial person, but looking this way is not easy, but I agree that the prednisone is necessary and it really has helped to make me feel more alive. I was in bad shape when I started the daily regiment of it.

I have been sick with some sort of immune disorder for the past 8 months, and my team of doctors and specialists have not been able to diagnos it. Taking pred has really scewed my blood results so sometimes they look completely normal and other times high, plus I have had really high IGE, which doesn't fit into the picture so it's thrown them off even more. It all started last fall when I got a really had cold that advanced into pneumonia really quickly and I finally checked into the hospital when I was unable to breath on my own.I tried 3 rounds of antibiotics and none of them worked and I only got worse. I was there for 9 days, HIGH AS A KITE on 250 mgs of intravenous prednisone (which I had no idea I was even getting) and had a very bad reaction and more or less had a meltdown. I realized then how nasty this drug is, but it did clear my pneumonia and ultimiately saved my life. I am sure the nurses and doctors to this day are still talking about me. I tried to leave the hospital and even pulled my IV out of my arm lol. I don't remember doing this at all. It's a VERY strong drug!!! I can't wait to get of it but I fear that my symptoms will return and will have to go back on it. II haven't gained too much weight but have the freakish moon face and my stomach is very swollen. Needless to say, this has been the worse year of my life. I seriously cannot believe that they give this drug to people with minor things like poison ivy!!!! Good luck :)

I have been on prednisone for the past year. Started at 80 mg, then am now down to 5mg. I have hair loss, moon face, weight gain, when I eat or drink anything can barely breathe....I have a husband that doesn't get it and blames it all on my age and what I eat (rather don't eat as I can't eat most food).

I know what you are going through...I have gained a lot of weight, namely, around my middle. I am extremely uncomfortable and am trying to deal with the overwhelmingly fatigue I have. It's difficult for anyone to understand what you are going through unless they themselves have been put on steroids. When they do, they have an idea of what it's like. Either take them and live and deal with all of the side effects, or don't take them and get sick and possibly die. It's a hard road to travel. I feel for you. I try to keep positive. It isn't always easy when I don't have the support system I wish I had. Neverthless, I keep positive and move forward.

Hang in there...keep positive...and let me know how you are doing. I understand big time.

Laura