PredniSONE and miracle drug

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!!!

I have had trouble with eczema/psoriasis for several years and it has spread to most of my body. Hands, arms, elbows, back, chest and stomach, hips, back-side of my thighs, knees, bottoms of my feet, scalp, inside my ears, forehead, what haven't I mentioned? So far, Prednisone is the only medication I can take that clears it up. Trouble is, the doc won't let me take it long enough to completely clear the rash before I'm tapered off. After reading some of the other posts, I've got to say that I've never noticed any adverse reaction. My appetite is up a little, but my energy level is also up and I burn off any extra calories. I sleep better (no itching) and for longer periods, wake feeling better, have a better outlook for the day and am ready to go. I'm a salesman, so my mental attitude is important, and my wife and family all agree that I'm less moody and in a generally better frame of mind while taking Prednisone. I've noticed no stomach or bowel distress except for being a little less regular than normal. But no constipation and no diarrhea. I'm 61 so a few muscular aches and pains and joint stiffness are to be expected, but I've noticed no unusual incidents. While I don't advocate taking large doses (define large doses???) for long periods, I've read that taking Prednisone on an every-other-day basis can be effective while greatly reducing the risk of side-effects. I think Prednisone has been a real "miracle drug" for me and just wish there was something as effective without the side-effects.

Prednisone is a miracle drug that is saving my life. I realize that the side effects can happen and do. I've experienced them too: pockets of fat on my face even though I've lost 25 pounds; loss of hair; Thrush in the mouth and other yeast infections; hyperactivity; insomnia; blurry vision; the shakes; reduction in muscle tone; and secondary infections because of compromised immune system. I have pulmonary fibrosis and waiting for a lung transplant. There is no known cause, cure, or treatment of this terminal disease and most patients die in 1-5 years. Prednisone is the only drug that will at least slow the disease down until I receive that transplant call. I realize that most people on this post are not terminally ill and you can say, "no" to this drug; but just wanted you to know that for some of us it's a miracle drug.
Di

In January I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis). I was put on 60 mg prednisone and an array of other meds to help with pain, inflammation, water retention, and stomach problems from everything. I've lost some vision from the TA. I've experienced the weight gain, the moon face, stomach problems, depression, fatigue, muscle weakness, lack of memory and concentration, and generally feel miserable. The brain fog is awful! I don't trust myself doing much of anything these days!

When I was first put on the prednisone it completely took away all my TA and PMR symptoms. I could walk and get up and down again, didn't have the headaches, and didn't hurt all over.
My doctor tried to taper my dosage about 6 weeks ago and all my symptoms returned and increased as I went down on the prednisone. He upped me back to 60. That time the symptoms didn't go away. They lessened but were still there.

He's trying to taper again, and I'm down to 30 mg now and feel worse and worse. My sed rate has been normal, so the doctor thinks it's from the prednisone. Does it mimic all the TA and PMR symptoms? I also am having a lot of hand and feet cramping.

Does anyone else have these two illnesses? I would be interested in your experience. I want off these meds! Anyone found an alternative approach that's helped?

God bless!

I'm in a living hell because of prednisone withdrawral. Was on the other coast of USA and my knee gave out (have severe OA with no cartilage left). Had cortisone injection but didn't work after one week. Went back to dr. and got prednisone injection and prescribed 60mg / day. I had a schedule for tapering off, but as soon as I went from 60 to 30, pain came back with a vengence. I was in So. California and had to drive back to upstate, NY, so i had to go back to 60mg. I returned to NY with only 4 pills left. Went down to 30mg/day in Georgia, then 20 in N. carolina. I feel like death warmed over.

I am now taking 10mg / day and i'm having full body muscle spasms daily which are excrutiating. I gained weight and diabetes is difficult to control to under 250. My dr. said he will not give me refill, but I see him tomorrow and will tell him what it's been like. I can't sleep unless taking 20mg vicodin and 1050mg. carisoprodol and 5 benedryls. then only sleep 3-4 hours and wake up to cramps unbelievable.

When on the 60 per day and the IM injection, the pain in knee almost disappeared. Now, it is back plus every side effect from the prednisone. If this is hell, I feel as if I'm in it. Can't be cool, can't be warm. Either sweating bullets or chills. Definitely not the "miracle drug" it's touted to be. Good luck to my fellow sufferers. Keep the faith, believe this too shall pass. -Jay

After the second day of taking Prednisone I noticed a dramatic difference. I was not in pain anymore from the inflammation. I thought it was a miracle drug, but with-in a week I started to gain weight, even though I eat a very healthy diet. I have been on Prednisone for almost 5 months and I cannot believe the amount of weight I have gained. I am now weaning myself off of it due to Doctor's instructions, and am experiencing anxiety and depression and the pain is coming back, almost immediately. Although it helped me tremendously in the beginning, I would definitely try another remedy before I ever take Prednisone again. They call it the "nasty drug" for a reason.

I have alopecia universal which is total hair loss. A doctor put me on presidone 40 mil a day for 8 months. My hair came back i could not believe what a miracle drug it was, but then the side affects started and 2 years later my right hip clapsed and i need a total hip replacement. I was only 27 years old with a year old son. This is just to let you know don't take that drug to grow hair its not worth it. That was a stupid thing for me to do. The doctor told me that happened because I took presidone with a healthy body. Now I am 40 years old still trying to get my hair back but my husband and family love me for what I am.
Take care everyone

I have ulcerative colitis. Had a very bad first flare up and was put on 40mg prednisone. three days later not feeling better , was increased to 60. within two days all my symptoms vanished. i was on it for three months and experienced lots of energy and sleepless nights . facial hair growth . could not stop eating. gained 20 lbs. it cured me for 7 months and now i'm having a minor flare up again and back on the miracle drug again. the drug helped me get better , i can deal with the hair growth and the weight gain . i felt normal for seven months and thankful for that.

I've been on and off Prednisone for 11 years now. Highest dosage was 100mg, but I rarely need to get that high anymore. Although this is a particularly bad flare (Lupus) and I'm taking 80mg now. They say it's the miracle drug that kills. It saves my life now, but will destroy my body over the long run. I'm hoping someone comes up with an alternate solution. My side effects are: weight gain (but with lots of exercise and paying attention to what I'm eating, I can maintain), puffy face, for the first few days - very hyper (MUST CLEAN - strange), then low lows. Also, very important side effect to know about: mistaken feelings of being mistreated (my poor boyfriend had to get an "explain your behavior" lecture when he hadn't done anything wrong). One of the worst and most dreaded side effects is night terrors/hallucinations. I will have an AWFUL nightmare and wake up and I'm still seeing it (i.e. 4 ft spider dangling above my head).. takes 5 minutes awake for me to talk myself into realizing it's not real. I have also lost control of my bladder in the middle of the night before. These only happen on high doses (>40mg). I also get flushed and hot when the med is wearing off and I know I need to take another dose. If I'm taking >40mg/day I will space it out every couple of hours. Every body is different. I don't have the acne... but there's always time! lol... Good luck, everyone... Know your body...

After looking at the listed side effects for Pred. i can say that my wife has expierenced all of them. She has Chrons and was on Pred. for about 9 months. Just so you all dont feel like your crazy, ill post what this "miracle drug" had done for our family. INSOMENIA, she would sleep for about 3 hours a day, man was my house clean! MOOD SWINGS, she would flip out for no reason. She even wanted a devorce! For no particular reason, she " just wanted me out of the house ". WEIGHT GAIN, she went from a size 3 to a size 13.*note* she lost weight in the first month, went down to a size 2. MOON FACE, she kept saying she looked like a jack-o-lantern. BURNING SENSATION, she would just break out in a sweat, and complain of "feeling" hot. ACNE, neck, back, and chest. FATIGUE, she just couldnt move, always felt "drained". EATING LIKE A LINE BACKER, she would polish off a full sized bag of cheese curls, and look for more. DEPRESSION, would just break down and cry, for no reason. I would ask, whats worng, and get " i dont know ...." BACK PAIN, she would wake up with major back pain. We contributed this to the added weight, pressing on her back while asleep. SNORING, agian, do to he added weight.

My question is this, my wife has been off the Pred for almost 50 days now, and she has lost little weight. It kills me that she looks in the mirror and cries now because she still has the added weight. She has lost a little in the face, and in the ankle area, but had yet to loose a majority of the weight gain. Her Dr. told her that it will take another 2 - 3 months to loose her weight and get back to "normal". If some one can varify this; the long gradual weight loss, it would make my wife feel so much better, knowing that there is a light at the end of the tunnel.

Thanks in advance,

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