Aiha symptoms and conditions

I have Autoimmune Hemolytic Anemia (AIHA), was diagnosed in Feb. 2008. Have been ill for several years and finally it came to a head in Feb. I had a blood transfusion and then in the hospital 6 days later with a hgb of 4.0. I was so toxic and my blood so screwed up I nearly died. I was given another transfusion then (total of 5 pints of packed red blood cells) and started on Prednisone. For 3 days given liquid Pred injections, starting at 1000mg, tapering down to 250mg., then on the pill form at 100mg. Sweat poured off of me dosing down. I was off work for 2 months. I am still tapering but am now at 1mg. DR. added another drug, Danazol, after getting to about 10mg because my blood started going crazy again. My side affects with Prednisone have been, Euphoria, no depression, LOTS of hyper brain activity, thoughts running a 100 miles an hour but body at slow speed.Visual problems and a feeling of being highly drugged. 2 to 3 hours of sleep each night, compulsive behaviors and a lot of pacing back and forth. Couldn't hold my concentration because my mind wandered so much. Extreme Tremors in my back, hands and head. Wanted to talk constantly, if no one was around I talked to my Chihuahua or the TV. My cheeks puffed up and became hard and had a fat pocket puffed up on left side of my neck. My dog thought I was crazy, she was tired of the lights being on at 3 or 4 in the morning. Legs looked skinny but didn't gain weight until I got to about 60mg. Gained 25 lbs total. Tapering caused bad spasms in my calves, feet and hands. Thigh muscles would get extremely weak each time I went down a dose. At 50mg I started getting sleepy and could hardly stay awake. Went back to work at 35mg and couldn't remember how to sign on to my computer. Some memory problems since I was in the hospital, couldn't remember how to spell words I knew as a young girl. Started having hip pain about 3 months into the Pred, that hasn't stopped. At 10mg feet, knees, shoulders hurt deep in the sockets, muscles below my neck knot up, may take a while to totally get off this. Read on a couple of blogs where people cut a 1mg tab into 4 pieces to taper off the Pred. because of side effects. Had thrush in the beginning and break outs of shingles. I hope to God I never have to get back on this drug again, it is so HARD on the body but it did do what it was given for, to repress my immune systems. My next step is Spleen surgery, hope this is a cure for me, am sick and tired of being sick and tired. Wouldn't advise anyone to take Pred unless it's a life or death situation. It's prescribed too liberally and people have multiple problems, worse than I have experienced. I've probably forgotten some things, but there's enough I've mentioned to give you an Idea it's not good, but if Pred is all you have then you do what you gotta do!! My puffy cheeks have went down though, now my hair has become curly but at least I have hair and my chihuahua stills loves me!!!

Hello everyone! I just want to thank each and every one of you for your postings. On more than one occasion I would come to this site because without all of you I probably would have truly lost my mind. I just want to give a brief history of what's been going on with me because if it can help one other person then it's all worth it. In 2005, I go vaccinated for chickenpox, I work in health care, never had them, and wanted to start having children since I'm 36. A month after the vaccine I broke out in a horrific rash ALL OVER and had it until April of 2008. I went to the hospital where I had the vaccine, 5 dermatologists, 3 Infectious Disease, various medical doctors and no one knew what it was. This April, I was admitted to the hospital with Autoimmune Hemolytic Anemia. After 3 hematologists, the last one feels the vaccine threw my immune system into a tizzy. I started with 60mg of Prednisone and eventually got down to 2.5mg. The hemolysis(body produces antibodies that attacks it own body) started again so I went to a new Hematologist and was put back up to 30mg and just got put down to 10mg today. Right now my biggest concern is the hair loss. I use to have such thick hair and now I cry almost daily because I loose so much. I am going to try the Ensure like someone posted just to see if that helps. I drink protein shakes, take Silica, multivitamins (Solgar) that have biotin, and going to try Nioxin shampoo. I have terrible mood swings and now I feel like I am going through withdrawal. It's almost like I want to take more just to feel better. I know that sounds crazy. The big fat moon face, my joints feel like they pop out, confused easily, can't sleep, and just can't really leave my house and live a normal life since April. I HATE IT!!! The only thing that helps me feel better when the daily prednisone "kicks in" is walking and exercising. I feel so bad for everyone this drug is just awful. I get angry because not one person told me what life was going to be like on prednisone. I think that is just mean. That's why these postings are so important. I know this is entirely to long but I feel so much better getting my story out there. Did everyone's hair eventually grow back. I don't know if I will have any left next month. Thank you all so much.
GG