You are so right, if i had to do it again i would not even have started ,and like you said it is so hard to get off the Prednisone people do need to educate themselfs to all the side effects of this drug

Unfortunately when I was started on prednisone I was in the hospital in a severe crisis and highly sedated. My husband (now ex) was informed of the side effects and risks and decided to allow them to put me on it to help save my life. I was very near death at the time. Cyclosporine had caused my body to have an adverse reaction and caused multiple strokes on both sides of my brain. I was on a ventilator and feeding tube. I had no input in the decision. If I had known how difficult it was to get off this drug I may not have allowed them to start it. That was seven years ago and I am just now down to 10 mg/eod from 100 mg/day. I have been up and down on the dosage over the years. I initially had lost close to 100 lbs. but put it back on very soon after starting the pred. I then lost 70 of those pounds but have put back on 20 of those. Because of the prednisone I have high blood pressure, high blood sugar (but not considered diabetic), ammenorhea, tooth loss (have to get dentures now - I am only 41), and it has caused my veins to shrink and they collapse whenever they try to get blood. I have a love/hate relationship with this drug. I love that it has kept me breathing but hate all the side effects. I think the decision to go on this drug is very individual and depends on the severity of your MG.

was put on pred because I have so many medical issues and my dr said she was going to put me on low dose 5mg and they have helped but I read about the symptons and have not really gained the weight yet but face feels odd and get dizzy but had the dizziness before that but as bad as it is .I can work now as to before she was going to have me quit my job but still going to go and see a cardiologist next month . hope they figure out what is going on . have IBS and fibroymalgia and wheat and dairy allergies and have had hysterectomy and spleem drained and gallbladder and appendix out all by the age of 35 now 38 and still seem to have problems .

[QUOTE=princess38;99328] have not really gained the weight yet but face feels odd QUOTE]

princess38, I know what you mean, I think. As I remember back, seems like my face felt odd, too, and looked odder. Everytime I looked in the mirror, it seemed to have swelled up even more. I came out of there with a full moon of a face.

I know this is an old thread... but I had Cushing's disease which is basically too much hydrocortisone. You can get it from taking steroids (then it is called Cushing's syndrome) but mine was caused by a pituitary tumor.
My tumor was discovered in 1992. I was not heavy then. But over the years, I came within 6 lbs of doubling my body weight (as well as other horrible symptoms). I had my tumor out in 2004. It did not cure me and I had to have my adrenals out in 2006. Adrenals are where cortisone is produced in the body. Now since I am cured, I have lost about 65-70lbs, but my muscles are... wasted. We thought it was from the Cushing's. Now I may have MG (had an abnormal EMG and waiting on other tests). My own body's overproduction of steroids may have been masking this?

The first thing out of my neuro's mouth was - oh well we can give you prednisone. NO WAY. I need to lose, not gain and not get any weaker. I just got my cheekbones back.

Old thread, but the problem never goes away, does it? Rumpled, there are other treatments they can give you, other than Pred. I would never again take a steroid! Have they tried you on Mestinon, which has been the old faithful of MG treatment for years? Other than my one disasterous foray into the world of steroids, I've never taken anything but Mestinon.
Hugs,

So far, nothing as not diagnosed. I started a new thread. I will ask for mestinon though if diagnosed. Thanks for the advise!

I have been on pred for almost 1 yr. now. Some side affects diminished after a few months. (nadea, upset stomach, lack of sleep and most sweats.) But I still have a swollen face and feet. My arms are always marked from bumping them and cut very easy. I have lost 10 pounds but my gut is 3 inches larger. Not sure if this is from pred or just lack of exersize because i've become so week. I am taking 120 mg every other day and I believe my neuro is going to try to reduce it when I see him in 3 days.. He want's me off of it.

I get IGIV 2 days a month and I take 300 mg of mestinon and 2000 mg of Cellcept a day.

I am feeling better most days and seem to be getting a little strength back.