Danazol symptoms and conditions

I have AIHA and am doing better since getting off the Prednisone.
I posted back in Oct. 2008. I finally got off the Prednisone in Nov. and surely don't want to be on it again, ever, (hopefully). I'm still using Danazol but was at 400 mg a day, am down to 200 mg hopefully will go in remission, if not it's spleen surgery time. All the fat pockets do go away, it just takes time. I would advise anyone using Prednisone to take good daily vitamins and minerals ( got mine from the health food store), also Calcium with Vitamin D (Citracal caplets w/ D maximum dose). Prednisone depletes minerals, stay on a regime. I also have to take prescription folic acid. Eat and orange EVERY day for extra vitamin C, DR. advised me. I eat 3 good square meals a day and made sure breakfast was a main meal. Eat a small container of plain yogurt daily to ward off fungus, such as thrush, and to keep the intestinal track clean, plain is nasty, just wolf it down (Dannon makes a small container) A lot of people taking Prednisone have problems with acne. Wash your face daily then using cotton balls apply "Topical Hydrogen Peroxide" to the facial skin and let dry, then a moisturizer, face and body (Gold Bond is very rich for body). I use to turn on the fan and let the air blow in my face because it seemed to take for-ever for the peroxide to dry and the smell of it will gag you too! My skin stayed very clear while I was on the Prednisone for 9 months. My skin was the softest ever while I was on the high doses and I felt soooo good then also, but my mind was so foggy and feeling of being heavily medicated was hard, plus all the muscular shaking. I use to get mad getting behind people in traffic that drove like the little old lady wearing coke bottle glasses. Then I became that little old lady when I was on the high dose Prednisone. I told myself I would NEVER complain about any one going to slow in traffic again!!!! I still have joint problems after 4 months off but also heard it takes 2 months recovery for every 1 month on Prednisone. hopefully I will be better within the next year. I had a lot of nausea after getting down towards the lower doses, hated to get up in the morning, was like having morning sickness and bouts through out the day also. I would just go home after work and lay down and also on the weekends. I feel for anyone with small kids who have to keep up with work, daily family life and trying to cope with illness and drug life. I'm just glad my kids are grown while I'm going through this mess. My daughters have been very supportive and helpful. Lower doses for me were the worst though. My Dr. wouldn't give me anything lower than 2.5mg. I was having a hard time and cut those little suckers in 4 pieces and took them a week every day and then every other day till I could stop. It's hard at first going off but once off, didn't go back again. I haven't found anything yet to help the joint pain but they say time cures all. I still have racing thoughts at times and some concentration issues also. Sometimes I think I'm a little old lady with ADD!!!! ha ha Had some issues with anger, wanting to slap co workers into next week at times. A lot of problems with taking Prednisone is because the adrenals shut down and it affects what is called the HPA axis. The Hypothalamus in the brain controls numerous things in the body and I think that's why the body balance becomes disrupted, it effects hunger,taste, smell, weight, on and on and on. Everything at first tasted to salty or sugary. Some foods I didn't want to eat because they tasted awful. Maybe that helped me also with not gaining to much weight. The pituitary and hypoThalamus try to balance everything and with out the adrenals not working a person becomes screwy bodily and mentally. I did a lot of reading online while I was off work for 2 months, especially with trying to take care of my self physically. If you have problems with being hungry eat something protein, it will stick with you longer and eat small snacks between meals, like bananas or avocados, raw veggies too. I would make a pot of beans once a week, because of lower calorie intake and they are high in protein, any kind of legumes are good. For awhile I craved liver maybe needed the iron and B12. Try to take a short walk everyday, even if it's 2 blocks. Maybe this will help someone out there cause the Prednisone is crazy stuff. Take care of your selves and you will be better, it may not seem that way but you will get better in time, just don't GIVE UP!!! L. from Kansas

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!!!