Wegener symptoms and conditions

I agree that this drug is of evil. My mother was treated for 3 years on and off long term use for Wegener's Disease. She just tapered off her last dose, the docs are telling her she is done with it, thank the good Lord. She has told her doctor of all of her symptoms, manic episodes, severe depression, hallucinations and just recently the doctor suggested that it "may" be steroid psychosis. My mother inquired if there was some meds that could help b/c over time, it just seemed to get worse. She told her that she wasn't getting enough prednisone to cause this. Wasn't getting enough...when she was first diagnosed, she was given 3000 mg b/c she was near death, after that, each follow-up consisted of 40 plus mg, and I am talking 2 to 3 month stretches...but she wasn't getting enough to cause steroid psychosis??? My mother came to me one day and asked me not to leave my 3 year old daughter with her alone ever and of course I asked why. She told me that she had thoughts of harming those around her, that they would actually play out in her head. Through my tears, I asked my mother if she followed through with these thoughts, would that give her some relief, and she replied yes. At this point, I know it is bad. I have found a site that lists treatments for steroid psychosis and plan on not stopping until a physician agrees to help us. My prayers are with everyone that is experiencing these horrible drug interactions and side effects.

hi everyone, i'm a 36 y.o. male and have been on and off of prednisone for 25 yrs. my experience has always been more positive than negative with taking this drug. it has helped me to breath better and has made me to feel extra healthy and even physically stronger. but i have my suspicions about this drug also. it has given me a false since of good health and i feel like i want to keep taking it just to feel better. i have only taken the drug after an asthma attack for about 5-7 days. early on the only side effect was increased appetite and occasional insomnia. but the last time i took this drug the doctor increased the milligrams and a VERY UNUSUAL side effect occurred that never happened before. I HAD HALLUCINATIONS! i have never had these side effects before and on the leaflet of possible side effects that came from the pharmacist for the very first time i saw hallucinations listed as a possible side effect. the hallucinations were damn near demonic in nature. the experience went like this... i woke up in the middle of the night to use the bathroom and on my way to the bathroom i passed my dresser mirror and in the mirror was writing on the mirror in a mist! just like it would be when you get out of the shower and take your finger and write on the mirror. THERE WERE LEGIBLE WORDS ON MY MIRROR! mind you this is in my bedroom and the shower was off! at that point i refused to read what i saw in the mirror! it was weird enough what i saw i didn't need to read it. i refused to be fearful at that point cause i realized i was hallucinating and not getting a haunting. when i woke up later i went back to the mirror and of course no writing in the mirror. IF THERE IS ANYONE WHO HAS EXPERIENCED THIS PLEASE TELL ME YOUR STORY PERSONALLY! MY EMAIL IS ******! i would like to know that i'm not alone in this. to make it easier for me to see your response please type prednisone in the subject box on the email cause i receive a ton of emails and spam. and i would really like to hear other stories and experiences of taking this drug with very weird side effects!

My husband initially took Prednisone after getting strange lesions, severe joint pain, severe fatigue and severe stomach cramps/nausea. It worked great he was tapered off and no problems for about 18 months. Then he go sick again (2/08) and has been up and down on Prednisone for 7 months- currently taking 60 mg. daily. Some doctors think he has Wegener's, but testing is inconclusive (Wegener's starts with upper respiratory stuff, which he also had). His mood swings are severe and he's a different person, twitching, hand trembling, muscle spams, malaise, anxiety/depression, very fatigued, insomnia, severe stomach cramps/vomiting. How do you tell which symptoms are the Prednisone and which are the disease process? They want to taper him to make him sick enough to get some test results that show organ damage or something, but everyone chickens out and he ends up getting increased. How long should he be on Prednisone and not be put on something stronger?

if anyone has Wegener's Granulomatosis, please contact me. I don't know anyone else who has it.

Hi polkanow,
I read your message and I wanted to write to tell you that we all go through the feeling of not being ourselves. It's a shame that we need to go through this for the pills to work on our bodies. Keep reminding yourself that once you are off the medication you will be your old self again. I have been on prednisone for over a year, I started at 80 I think, and we were reducing the dosage like you're supposed to with my disease (Wegener's Granulomatosis), and after my lung surgery about 6 months ago I had a flare up of the disease and had to restart prednisone at an even higher dose, at 100mg. This second time on predisone is much tougher than the first. Somehow, I guess because I've been on it longer, I'm experiencing more side effects, more ups and downs, more round face, more dark hairs on my face and neck. It doesn't help us at all that it makes us so unattractive either!!!! Does anyone know if the hairyness goes away like the moon face is supposed to? (thanks for the encouragement, sanndiego). I am small boned, and yet I've gained so much chubbiness on my face and neck that I can't wear some of the necklaces that I used to.
Patience

wonder if anybody is experiencing problems with teeth. mine seem to be not really decaying but detorieting . same goes for my gums. was diagnosed with wegener's granulamatosis
november 2003 and been on 40 mg. predisone at first have reduced the dosage to 30 mg and now 20mg. don't know what kind of treatment is next if any.