Rare eye disorder symptoms and conditions

Hello everyone,

My name is Tina and I am a mother of 5 children and I was diagnosed with a very rare disorder called "VKH" It is a rare eye disorder that only strikes like 1 in 1,000,000,000 people. I was put on Prednisone to help with this condition and to reduce the swelling in my eyes. I was put on 70mg initially and was tapered down to 40mg. then things did not go as well as to be expected and I was bumped back up to 60mg. I am so happy to read these stories but also saddened at the same time. I have been on Prednisone for 5 months and have gained 20 pounds and have the moon face, the acne, the hair growth and the horrible mood swings. My husband and I had our 10 year anniversary last week and I spent it all alone because of my moods.......
It has destroyed my relationships and my self esteem. I don't like leaving the house barely because I hate how I look and I am so depressed I am not the same person as before. I cry all the time because sometimes I wonder if taking this drug is worth it!!! What makes things worse is I wonder if things will ever go back to normal for me or my family again.................

I'm a 22 year old who was diagnosed with dermatologists a couple months ago. I've been on different doses of steroids ranging from 5mg to 60mg for 5 months now. i was on 60mg the longest and just went down to 40mg. i go down to 30 mg next month. so far my side effects are moon face, swollen areas around my neck and collar bone, weight gain like 15 lbs, always have to wake up in the middle of the night and pee, my knees get shooting pains sometimes at night, light hair by my ears like sideburns, tired, helps with my muscle weakness a little, my eyesight seems blurry sometimes, chest always feels tight. I'm also on Methotrexate, Bactrim, folic acid, and Fosamax. it might be a reaction form all these but i think its mainly from the Prednisone. i cant wait to get down to the lower doses. i look like a different person and even tho all my family and friends know its still embarrassing. i fell like a whole different person. i cant wait to be normal again.