PredniSONE and weakness

I have been on 50 mg. of prednisone for about 6 weeks. After 2 weeks, I became very dizzy, weak and have blurred vision. I am now tapering off by 5 mg. every 3 days. I am still experiencing dizziness, weakness and blurred vision. My doctor said by the time I'm down to 15mg. per day, I should start to feel better - not soon enough for me. It is one of the worst experiences I have every had. I have IBD and the prednisone did not help one bit.

My husband was diagnosed with an autoimmune disease that was attacking his shoulders, hips and knees, last February. The cause was unknown, perhaps a drug reaction to Amitriptylene, perhaps PMR, they still don't know. The doctors put him on prednisone. 15 mgs seemed to control the symptoms and he started to feel better right away. Weeks went by and he occasionally said, I seem to be losing weight. Then it was, I've lost 10 pounds. Next month it was five more. And he started getting weak. His muscles were just weakening and atrophying. He was thin to begin with and by September he had lost 26 pounds. He no longer had the strength to work and was put on temporary disability. We felt it was the prednisone because it all started happening together and we convinced the doctors to let him try to taper off of it. They put him on plaquenil and Immuran and let that build up in his system before they would let him begin to taper off the prednisone. He is finally off prednisone completely and he has finally started to gain a little weight back and feel a little stronger. The hardest part was convincing the doubting doctors. They all said, Oh no, prednisone makes people gain weight. Yet there he was standing in front of them. He certainly hadn't gained weight. But if a side effect is "typical" then they seem to insist that you have the typical side effects or you must be making it up. Of course, they could see he wasn't making up the weight loss, so they did a million tests looking for some other cause; cancer, etc. All were negative. He did go to the Mayo clinic who ran a bunch more tests and they did find one interesting thing: a super low testosterone level. They felt this might explain the muscle loss and weakness. So they started giving him testosterone. However, I say, which is the cause and which is the effect. He didn't have this low testosterone before he started taking the prednisone. That awful stuff messes with all kinds of things in your body--basic things like the hormone balances. When we got down to 2 mg per day we stopped cold turkey. Things are better now. It appears that he still has the underlying auto immune problem because the pain is coming back in his hips and shoulders. But he will not go back on prednisone for anything. That stuff was killing him.

My husband has been diagnosed with Ulcerative Colitis. He is only 37 years old and has lived a very healthy life so far. Two weeks ago he started showing colitis symptoms and between Monday, Jan. 29 to Wed. Feb. 7 (9 days!) he lost 28 pounds! He was given a shot of Prednisone in the ER and prescribed a short regime for it with a gradual decline to ween him off of it as soon as possible. He seems to have the worst and oddest side effects. Has anyone ever experienced this with Prednisone...He slurrs his speech, drools almost constantly, has trouble swallowing, and his face from the upper lip down looks like his face is hanging there. (I had his doctor check for stroke and there was none.) That on top of the nausea, vomitting, dizziness, weakness, and being constantly sleepy. I know it all sounds real bad but he has actually improved since taking the prednisone. At least he's alive and getting better. Hope this helps.

I have been taking prednisone for dermatomyositis for the past 4 months. I am on 30 mg a day. When I try to taper, my rash and muscle pain/weakness come back so we are trying 1mg lower every 5 days now to see what happens. Other than thirst and a rapid heartbeat if I drink cafeine during the day.....no side effects at all. I have not gained weight (but I have been on weight watchers 5 years and have maintaned my goal weight through that and as much as exericise as my disease allows) nor have I had gotten the moon face, etc. However, my best friend who is on only 20mg daily for the past 12 months is now diabetic, gained 45 pounds, got the moon face and rash. I would not know if I had the rash or not as my DM causes a very nasty rash. I know this medication has many horrible side effects and can be devastating ... but without it I would not be swollowing, teaching my special ed classes daily, hugging my grandchildren, or taking care of my own needs right now. I am 54.
cheryl

I was on Prednisone for three months for a bowel obstruction
Of the iluem of small intestine, I didn't have to have surgery
for now, I was tapered off the prednisone and I have had terrible body aches, weakness, my legs have always been
strong and they feel like I have weights on them. Can this be
a side effect of being on the prednisone? I started out on 40mg a day for five weeks,then 20mg for a few weeks, to 10mg every other day. I am so tired of feeling tired. When I first got out of the hospital on the higher dosage I had so much energy and I felt good, the moment that the dosage was
reduced I started going down hill. I have been more depressed but I think it's because I feel so bad.

I have been taking prednisone for six years now. I have not missed a day during that time. I had a transplant and suffered rejection. I have every side effect you can think of. Blurred vision, out of control blood sugar, pain, weakness, mood swings,thrush,acid stomach,just to name a few. I really dont even know what to do,because it seems as though my life depends on it. I think my family is getting tired of having to deal with me as I am always complaining,

I started taking prednisone in September at 90 mgs a day and I gained 30 lbs in three weeks and was hospitalized for five days. The weight, which was all fluid, came off leaving nice stretch marks on my stomach and my dose was reduced to 50 mg a day. I'm now taking 30 mg a day and will be down to 20mg/day in 9 days. As you can tell, i'm counting the days until I no longer have to take this stuff. My side effects include hair loss (legs), hair gain (face), swollen face, legs & feet, headaches, muscle pain/weakness, increased appetite, hand tremor, rapid heatbeat/pulse, and acne. I think that's everything. That's enough. I use to suffer from insominia but my doctor told me to take my prednisone in the morning rather than the evening and it seems to be helping.

ALS

There is nothing found on Prednisone causing ALS. They say it is only known the cause 10% of the time and that it could happen to anyone, anytime!
For those who don't know what ALS is: ALS is a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A likely first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech swallowing or walking difficulty.
God Bless,
Gypsi

I don't know if this is a side effect or not, but I have been on 40 mg. of Prednisone a day for about a month. About 10 days ago, I started having neckaches, headaches, and off and on weakness in the right arm. The doctor said it's probably a bad disk in my neck. I really don't buy that. Is this the evil drug doing this to me?
Mark

I have Ms and was hospitalized to r/o stroke. I had something else, but was put on solumedrol and then 60 mg of prednisone. I took this med for a month and stopped, as directed by a neurologist, and I felt fatique more than ever before, headache, and weakness. Is this normal and well the weakness subside?

My daughter has been taking prednisone for 1 year for a musle weakness. She started at 35mg every morning she is now down to 8mg. I have noticed that she is still gaining weight and her swelling face is stiil there. I dont know if this is a normal side affect. I thought that by lowering her prednisone she would start to loose weight and her face would not be as puffy. I would apreciate it if anybody had information that I can use to help my daughter.

severe indigestion, and very bad heart burn, mental confusion, shortened memory-lose train of thought often. irregular heart beat, quickened heart rate. overall weakness and lack of energy.

MY HUSBAND WAS RETAINING ALOT OF WATER IN HIS LEGS AND VERY WEAK. THE DOCTOR HAD DONE A NUMBER OF TESTS ON HIM TO FIND OUT THAT HE HAS NEPHRITIS AND WAS LOSING 8,500 MG OF PROTEIN IN URINE A DAY (NORMAL IS 100-200 MG PER DAY), AND COLESTEROL WAS AT 400. HE WAS PUT ON PREDNIZONE AND ALSO HAD A KIDNEY BIOPSY. WE WERE MARRIED 1 WEEK PROIR TO HIM BEING PUT ON PREDNIZONE AND IT HAS BEEN PRETTY TOUGH TO DEAL WITH. HE WOULD COMPLAIN OF ALL THE SAME SYMPTONS, WEAKNESS, BACK PAIN, NAUSEA, BLACK OUTS, MAJOR WEIGHT GAIN, AND CRAMPS THAT WOULD KNOCK HIM ON THE GROUND. I NEVER REALIZED PREDNIZONE WAS SO BAD. I FEEL ALOT OF GUILT BECAUSE I WOULD SAY OH, IT CAN'T BE THAT BAD. I FEEL HORRIBLE NOW READING ALL OF THE OTHER COMPLAINTS. HE HAS ABOUT 1 MONTH TO GO WITH 60 MG OF PREDNIZONE A DAY AND WATER PILLS.

Dosage of Prednizone was only 40 mg once a day for 3 days, and tappered off everly 3 days down to one tablet. This was prescribed for needed LUNG EXPANSION DUE TO BREATHING PROBLEMS. The following side effects manifested; I felt like superwomen the second day, thought this stuff is magic...however, by the third morning, Thrush infection appeared in my throat and mouth, had extreme, sharp pains when swallowing, dizziness, general weakness from the Thrush like early flu - this Thrush looks like white spots or white coating & SPREADS WITHOUT THE AIDE OF anti-fungal mouth tablet to irradicate. IMMUNE SYSTEMS WEAKENED BY PREDNIZONE. Insomnia also experienced to the point of only three hrs. sleep a night. I stopped taking the predizone immediately and continued the anti-fungal mouth table of clotrimazole (10 mg) to clear up the Thrush infection and finally got back to normal. No more for me!!!!

After another afternoon of feeling downright lousey, I began reading all of these testimonials. I cannot wait until this medicine is gone and out of my system. I just don't feel right and until I started reading what other people had to say, I thought I would lose my mind. I have been taking Prednisone for Sudden Hearing Loss as of the 18th of March, 2005. The doc started me out on 60mg daily for the first 5 days, then down to 40mg for the next 7 days, then 20mg for the next 7 days, then 10mg for the next 7 days, then 5mg a day until the pills are gone. I swear, I will never take this crap again!!! I have the incredible appetite, mood swings, weakness in my shoulders and legs to the point that working has really been a struggle. I sometimes just sit at my desk and wonder what I'm doing there. I will admit, the sleeping problem that I had the first week has gotten much better. I now can sleep through the night but usually wake to a feeling in my stomach and throat that I just swallowed a piece of glass. Then I have to jump out of bed and get down to the kitchen to quick get something to eat so that feeling will go away. What a way to live. I'll take the deafness over these feelings any day!!!!!!! And by the way, I still cannot hear out of my right ear.

It's scary in here...lol..Mixed Connective Tissue Disease, Primary Biliary Cirrhosis,Pulmonary Fibrosis, Sjogrens. Yes, it makes you feel better, especially at the beginning when the side effects aren't there. But MAN, does any body else feel like SCREAMING? LOL. I look like an entirely different person. Been on it for one year. Not even a large dose. My weight has just kept on coming. I think there is an alian in my stomach. And I think someone has inflated my upper body with something. Swollen, bloated,uncomfortable, fatigue, weakness, etc,. Do you eat like it's your last meal on earth sometimes????? Like some primative instinct separate from common sense. Some days I feel like it's the end of the world. But we'll make it. All of us.

My 16 year old son has been on prednisone for 7 years for Hashimoto's Thyroiditis, Asthma, and Idiopathic Angio-Edema (deep tissue swelling/hives) with Chronic Uriticaria (Hives). He started on massive doses but in the last year decreased to 10mg every other day. 3 weeks ago we discovered he has developed scoliosis due to the long term use of prednisone. They tapered him off in 2 weeks. Now 1 week later he is having a type of withdrawl from it... weakness and no energy, nausea and headaches. He is never allowed to take prednisone again, and now the doctors are talking about putting him on cyclosporine. Has anyone experienced this too?

I was hospitalized in March of 2004 with pneumonia caused from household cleaning products. They put me on "mega doses of Prednisone" intraveneously. When I returned home I was taking 40 mg a day for approximately two weeks. I woke up one morning, unable to walk because my knees hurt so bad when I put pressure on my legs. I recently, after episodes of pain, weakness and inability to walk without crutches, have been diagnosed with osteonecrosis, death of bone tissue. I am confident in saying it was the Predisone that caused it. The moon face, weight gain, and muscle and joint pain was also a factor. The osteonecrosis is a lifetime disease. I cannot work or function in the way I did before being put on this steroid. I asked the doctor about side effects and he told me not to worry. If I had known I would have said no. I think this drug should be taken off the market. I will be effected negatively for the rest of my life now. I would have preferred to take my chance without the Prednisone to heal my pneumonia. I should have been informed and as I read this webpage about the side effects I believe many of us should have been told the many side effects and allowed to make a decision rather or not we wanted to take it. Quality of life is most important!

i was on 240mm of iv steriods and 80mm of pred, + 1m perd eye drops overa period of 2months for a mutli system autoimmune disease, which was tapered to 40mm pred + 200mm ive steriods to only 40 in 4 days. this caused me to believe for 2 days that someone or something would seriouly harm me to the point that i could not leave the room i was in. i also experienced fits, floating type feeling ( like my legs where over my head when i was lying on a bed) to the point that i was bed ridden for 3 days, blackouts, confusion, serious depression and musclue weakness ( again to the point that i was bed riden for a number a days.
i have since found out that i was withdrawn to quickly from the 200m dose but i have also found out that you can get these probs if you withdraw from any high dose to quickly. am happy to say 2 weeks later and alot of these have gone but still on 40mm oral pred so some of it could be due to that as well! i guess we all just have to stay as postive as we can and remeber its not us, its the medication we have to take that is causing this prob or that and remember we are all superstars as there will never be anyone evere just like you!

I am so glad I found this site. Now I know that I am not crazy or imagining things. I took 40 mg daily for 14 days for what turned out to be arthritis in my elbow, then was to taper to 20 mg. Two days after tapering to 20 mg I was totally out of control/non-functional/suicidal. I can barely walk/talk/think, and am so depressed that I don't know how I can go on from minute to minute. Brain fog, weakness, insomnia, paranoia, huge buzzing in my head, went from eating everything in sight to not eating, dizziness, general hatefulness. I had to see a doctor and was tapered off (last day was Saturday June 26) and still I am totally useless. I just want to run and hide and scream and scream. NO ONE SHOULD TAKE THIS MEDICINE UNLESS IT IS USED FOR A LIFE THREATENING CONDITION!!!!! Can anyone tell me how long it takes for this stuff to leave your body? I can't go on like this. I can't believe how lightly the medical profession prescribes this medication.

I have been on pred for 2 years off and on for Temporal Arteritis that the doctors at long last have decided that I don't have. They started me out on 60 mm and now they are taking me off at 1mm every other week. I am down to 11mm now. I have experienced all the side effects except the acne and problems with periods. I gained 40 pounds and have such bad pains in my lower back that I can't stay on my feet for long. And I'm always hungry though I try to control it. My main withdrawal symptom is extreme itching from my neck to my wrists and thighs. especially where there is any pressure on the body such as waist bands etc. I tried to get off it once but it was at a faster rate and that is when the itching started. I will gladly put up with the itching as long as I can get off this "Satans curse" of a medicine. I also have jerking in my hands and a general feeling of shakiness. I was glad to read that someone else had painful sensitive teeth I didn't know it was connected to the pred. I too wonder if I will be able to lose all this weight after I'm off the pred. I do know that the moon face goes away because it did the one time I came off the pred then had to get back on it. I also have weakness in my thighs and arms. and my arms are always getting big ugly bruises or torn skin on them to the point that I have to wear long sleeves in hot weather.feel free to email me with your story. Especially if you are off of it so I can have some idea what might happen to me

I experience insomnia, fatigue, snoring due to increased neck fat, moon face, painful abdominal bloating, 10 lb weight gain, increasing blurred vision, purple rash on stomach, thin skin and easy brusing,hair loss, facial hair growth, night and day sweating. I started to decrease prednisone 2 1/2 mgs. per week alternate days in early December. Everything was going well and I could see slow improvement in my condition until mid February. Since then I have had more weakness in my hands, arms legs, and increased blurred vision. Since I may have to be on a low? dose of prednisone for a long time I have some questions.
1. How low a dose is necessary for side effects to diminish?
2. Does all your hair fall out to necessitate a wig? When does it start to grow back.
3. Does the weight go back to normal without dieting? Does your shape go back to pre prednisone?
4. Will the weakness, control, and pre prednisone vision come back to allow normal functioning?

weakness in left hand and fingers, severe muscle spasms of neck, moon face, weight gain, occasional espisodes of very fast heart rate (170 beats per minute), joint pain

mood swings!! weight gain, weakness, appetite increase, headaches, hair loss and gain, tiredness