PredniSONE and wean

Prednisone is a catabolic steroid, not anabolic which increases muscle, so people should know that continued use over time will literally break down and destroy muscle tissue. Without muscle, a person has no way of even standing more than a few seconds and could suffer many falls.....these falls are worse on the prednisone patient because prednisone also effects bone density and multiple disc fractures can result, leaving the person wheelchair bound.

How do I know? That's what happened to my mom. Also, if you are in a nursing home and contact scabies, forget about ever getting rid of them prednisone supresses the immune system so it can't kill them off, even with all the meds and treatments out there for scabies. Again, my mom.

My daughter has been on prednisone since October, 2006 -today is July 25, 2007. She is a 35 years old with asthma and allergies. Originally the pulmonologist thought she had ABPA (Allergic Bronchio Pulmonary Aspergelosis) and put her on 60 mg daily. This year has been a nightmare for her. That original diagnosis apparently was erronous, but she was kept on the high dose for breathing issues, with instructions to lower it as she could. As of today she is on 30 mg. daily. Side effects? So you know she is no "loser", she is a PhD in Biomechanical Engineering, has two patents to her credit, has spoken at numerous medical conferences (for vascular surgeons and cardiologists), and has had countless articles published in medical journals. Now she can't concentrate much less sit still, has not read a book in months (she used to read at least one book every week), she has two research publications that need to be finished but she can't focus on the work, is totally exhausted and needs to rest after only a couple of hours of mild activity, has a face she has described as looking like a mongoloid. Her beautiful, big, blue eyes are slits in her face. Clothes that fit yesterday wouldn't fit today - and those that fit today won't fit tomorrow. She craves food in the middle of the night and said she usually eats 2 bowls of cereal. She has terrible pain in her torso. Her esophagus has become so eroded she is on 6 different meds for that, and as a result cannot eat salads or raw fruits or anything that might irritate the lining of the esophagus. Her body is covered with huge dark bruises. The latest side effect made evident happened this past Saturday night. She fell striking her shins on a carpeted step. Her skin has become so thin that it actually burst open. She said it reminded her of when we'd blanch tomatoes in boiling water to peel them, and how the tomato skin would just burst open. That's how her leg was. That little fall cost a trip to the ER for stitches, tetanus shot, and antibiotics. Her husband is a career military, so since they married 1 1/2 years ago she's lived in 4 states, there's not much history among doctors. She lives now in Kansas and has started seeing specialists through the university there. We just wish she could go to Mayo Clinic for complete evaluation, but unfortunately military insurance doesn't seem to cover the best.

I'm a 34 year old petite 110 lb female and have been on Prednisone for 7 weeks now for a kidney disease (Focal Segmental Glomerulosclerosis). The treatment is supposed to be 3-4 months to see if I go into remission. If not, then I'm "steroid resistant" and they will have to move to a more aggressive treatment (a type of chemo). So I'm praying that this prednisone works!!

The first 2 weeks were a peice of case, then I developed many side effects, but the following being the most troublesome:

- 2 weeks - Edema. I got really bad fluid retention in my lower body and was put on a diuretic. A few days later my heart started pounding so hard I thought it would pop right out of my chest. Well turns out I was totally dehydrated from the diuretic so I'm off that now but the edema seems to be under control anyway (following a low-sodium/low carb diet). At the same time as the edema my skin dried right up too, and I need to put moisturizer on all the time. Even when I bend over I feel the skin on my back stretching.
- 2 weeks - Bloating. Really bad bloating. I'm bloated constantly now. Eating a low sodium diet helps, but not much. At night I weigh 5 lbs more than I do in the morning. I have terrible gas (burping mostly) all of the time. Sometimes it looks like I'm 6 months pregnant! And I'm sure people think I am because as I mentioned I'm normally thin and now I have to wear looser clothing to hide my belly, which doesn't really work and just looks obvious.
- 3 weeks - Sore knees. It feels like there's something growing in between my kneecaps that make it very difficult to climb stairs and it feels spongy when I walk. I can not put any pressure on my knees, I can't squat down, bend to pick something up, kneel, anything. And it gets worse at night.
- 4 week - Moonface. And my face has been blowing up like a balloon ever since. As I sit here and type I can actually feel it throbbing and growing still. I've got fat on my neck under my chin now that actually feels like it's choking me if I sit hunched over. I'm finding the moonface very difficult to cope with. I do not like to look in the mirror any more. I feel like a candy apple.
- 4 weeks - Cramps. Terrible terrible hand and feet cramps. Sometimes if I'm using my hands to chop vegetables or write or even use a fork, my hand cramps up like a lobster claw. I try to use the other hand then the same thing. And then almost every day, my feet. First one, then the other. Excruitiating cramps that seem to go in 15 minute intervals that make it impossible to walk, stand, sit, anything.
- 4 weeks - Very moody and aggitated. I am usually very easy going, now i have patience for nothing. I will be in a good mood one minute, the next I feel like I can kill someone. My boyfirend and our dogs are being very patient with me... I just hope they know it's the drugs not me! I just don't seem to have any control over my emotions.
- 5 weeks - Extreme fatigue. I used to have lots of energy, especially at the beginning of my Prednisone journey. But now I'm just wasted all of the time. I walk to and from work and the last couple weeks I want to just lay down on the side of the road and have a nap as I walk home. I used to do pilates (as much as possible with the sore knees) but it's too hard now. And forget about any elliptical training or cycling. It's enough just to get to and from work and I'm just exhausted.

There are more issues and I could go on forever, but those are the most troublesome. I just try so hard to stay positive but it's very hard sometimes. I pray that this is working, and that it is not all for not. I can't wait to be off these drugs, and my heart goes out to each and every one of you enduring the same thing and pray that it works for your too.

Good luck everyone.

:)J

I began taking prednisone in nov06 for TA. I started at 70mg daily. Side effect were minimal (moon face, problems sleeping, muscle weakness..) untill Feb07 when the weight gain averaged 2lb a day!!! and I had already began to wean off it. I started my own reduction plan because the Dr only had me going down 5mg every other week. I am on 5mg this week, 2.5 mg next week and I'm done, I hope I start to have more energy soon. I hope I never have to take this crap again! I am on methotrexate to replace the pred.
Good Luck to all!

I was diagnosed with a kidney disease when I was 14, and was put on prednisone on and off for a few years. After being free and clear for four years, my kidney problem is back, and I am back on the prednisone, 60 mg a day for the past month. My doctor said I can wean myself off and go to about 40 mg a day for the next two weeks, but this is when I used to have relapses in my condition. I am looking for ward to getting off of the prednisone though, my face is so swolen, and I feel like I look like a bobble-head. My cheeks are so full, and I have the worst double-chin. At first, the prednisone gave me so much energy, which was fine with two kids at home, but now I am just irritable and tired. I am starting to gain weight in my stomach now too. This time of year is the worst too, because the prednisone reall effects my immune system. I have to worst cold, and I had to get a flu and pneumonia shot.

The worst part of the prednisone is the swollen face though. There is no way to hide your face. The weight gain in m stomach can be hidden with a bigger shirt, but I can't seem to hide the ound cheeks. I wish I knew how to apply my make-up to hide it, but I can't It's awful!

Hi, I'm taking prednisone for 2 months already. I am not sure anymore if this pred is doing me more good than harm. I gained 20 pounds with a moon face filled with acne... It is so depressing because I never had problems with my skin and with my weight until I start taking pred for allergies. If I stop or wean down the dosage, then my allergies (hives) breaks out .Now, I feel so miserable and just want to stay home specially now that my students are noticing these horrible changes. I don't know how will I ever get back to normal again.

I have been on Prednisone for the past few months. I started off at 40 mg per day, and have tried to gradually wean down every few days. In doing so, I have developed excruciating rib cage muscle spasms, back spasms, shortness of breath, and leg weakness. Everytime I try to go down off this drug, I become so sick that I have no choice but to go back up. I have been told by my dr. that I will have to go down VERY gradually and it may take several months to do so. I am at 40 mg per day still trying to drop down by the week. Is this dangerous? I mean being on this drug for so long term? I already have osteoporosis from prednisone and have broken many ribs while on it. Would it be too dangerous for me to just go off of it all at one time and be done with it? I know I will be very ill if I choose to do it this way..but I don't want to put myself in a very dangerous situation either. Help! It's causing me panic attacks also. I just need to get off this medication! Any suggestions would be appreciated. Thanks!

I was on 80mg per day for 3-1/2 years for chrons disease and ankylosing spondylitis. I tried to wean off many times and could not,until i weaned slowly over a period of three months.Side effects: uncontrolled rages almost lead to divorce,huge weight gain, been off for a year and cant loose a pound,have any men had this problem? penis and testes have shrunk to very small size and this also has not returned to normal.This is also causing problems in the marriage.
G.N.

i have been on prednisone for over a year now for ITP. i started taking 150mg then 140 then 130 etc. i hate it so badly. i am not the same person. the doctors are trying to wean me off it but then something happens and i get bumped up to taking more again. at first my face swelled up like a balloon and i put on weight. i now go to the gym almost everyday and have lost it. i could not drive at night because i couldnt see properly. i had just given birth to my first child so i was extreemly emotional and cranky. i used to be a happy person now im irritable and have no patience. i used to get 'the wobblys' i couldnt walk straight and fell into walls. i experienced so many side effencts i cant remember them all. now they are apart of my life im so used to it. i dont even know whats real with my body and whats the pred. i hate it. but i cant be on it forever so if i dont get better real soon its chemotherapy for me. woo frickin hoo. good luck everyone.

I was given a prescrip for 60mg a day of pred from a hospital ER in NYC. No tapering instructions were given, either. 4 days in I developed severe joint pain in wrists, knees, shoulder, etc. Day 6 I stopped cold turkey. Saw an allergist specialtist on Day 10 because this all started as a reaction I had to something still unknown. Yesterday on day 12 with no decrease in joint pain I started the pred again at 10mg at the doc's request. Pain got better a few hours later but then started again in my wrist which had previously cleared up. Took another 10mg before bed last night. Still lots of wrist pain. Today it's unbearable. Doc says to only take 5mg next time in am and 10 at night. I can't stand this pain! Advil won't make it decrease at all. Seems like I got relief when I started up the pred again but seems like I have a reaction to taking it again.

I hate prednisone. I was given it in bursts for the last 10 years for asthma and for some reason I thought the Dr told me to stop at 10 mg and when I did my adrenal glands didn't kick in and I have been stuck on the stuff for the last 2 years since. I wean down to about 17 and then end up in the hosptial. this has happened multiple times. I was down at 17 a month ago and ended up in the er where they jacked me up to 40 and now I am at 23 but I am only able to wean at 1/4 a week at the most. I now am in menopause at 38 I have constant hot flashes rapid cycling mood swings. panic attacks. my heart races all the time I have cushings and possibly addisons now. I can't drive anymore my weight has gone up over 100 lbs my vision is constantly changing. I have pseudotumor cerebri and am now diabetic. This stuff is POISON> I also keep TONS OF FLUID ON face legs chest etc and now have to take lasix> I have tried to wean faster for the last 2 years but end up back up higher than before. I hate this drug. Don't let the Dr put you on it if you can avoid it. Also I would love to know if anyone knows of any type of inpatient facility to help with the weaning. My heart constantly skips and races on this stuff I am really afraid one day I will Die from being on prednisone. But I can't find a Dr to help me. This has ruined my life with my family if anyone can help please let me know

I don't think that 1 grapefruit per day can do the bladder infection; I was eating or drinking 3 grapefruit servings (juice or fruit) 3 days/day. I am using an Italian salad dressing with vinegar to try to offset drinking it!...but I did start the cranberry juice yesterday...good luck to all....

I just hope my 'new' doctor doesn't put me back on any steroids...it just seems that each of the (4) doctors I saw 'gave up' and put me back on them for lack of what else to do...the last one had me on prednisone for 2 weeks and then wean down on those and start on a low Decadron for 2 weeks to hopefully prevent the hives from returning...then this new doc took me off all of them ...I've been off a week now, just on antihistimines and Dixopen...so far just a little, bearably, itchy...

Was put on Intravenious prednisone for a severe allergic reaction on June 12th. Was in the hospital for five days. dosage was 20mg twice a day. Been on that for three weeks. Now weaning off 10mg twice a day for 7 days, then 10mg once a day for 7days and 5 mg a day for 7 days. Side effects have been moon face, puffy eyes, bloated stomach, leg cramps, tingling legs ,arms and hands. Headache and neck pain.insomina. I look in the mirror and don't know the person I'm looking at. The medicine worked to stop the severe reaction I had , a rash the entire body, face neck etc. Throat closed up due to drug allergy to zocor. The side effects are terrible, it totally changes your body functions and after reading these post , It is scary to think the negative side effects it poses. I hope out there , they may be an alternative drug available with less side effects in the future for eveyone who needs this for whatever disease they have. I wish all of you the best and hope that your symptons will get better in time as you wean off .

Tomorrow should be my last day of prednisone until I start weaning off it, so I will take my last batch of 8 tablets in the morning 5mg each and then wean off them. I forgot to take them this morning, I swear by this afternoon I was REALLY DIZZY, until I remembered to take them and about an hour later I was fine, that kinda scares me, your body shouldn't get hooked so quickly. Anyway I am going to see my homeopath on Wednesday and swopping over to herbal medicine. I like to put natural things into my body thank you :)

Bronchitis has gone YAY! but just a bit of a wheeze.

On Tuesday this week I will have stopped smoking for 2 whole weeks!! Best decision I have ever made!!
Will never touch another cigarette ever again.

Have a wonderful week everyone and remember that u are not alone if you are struggling with Prednisone. HEY who knew I was a poet!!

I'm 27 years old and last week caught acute Bronchitis. I managed to quit smoking the day before, I just decided that its not good for me anymore and I should quit now that I am young. So I suppose the combined effects of getting Bronchitis and getting rid of all the smoking stuff in my lungs made the Bronchitis worse. Anyway I went to my Doctor and he prescribed 40g Prednisone for 5 days taking all the 5g tablets (8 in total) in the morning. I have recently also lost 35kg's due to healthier eating and getting a healthier lifestyle took me a year to do it but now I am really scared that the Cortisone will make me gain the weight back. I went back to my Doctor today and he has put me onto a Nebulizer with more cortisone and prescribed another 5 days of the same Prednisone treatment as before. Then he said he would wean me off it?? Is it dangerous to just stop taking it? I am already on a course of antibiotics for the lung infection and on expoctorant medicine as well as vitamin tablets. Do I really need the Prednisone? Can someone maybe try and explain whether its a good idea to be on such a high dosage? Just feeling a bit scared about all of this, cause I don't like Cortisone side effects.

Hey Heather, I was wondering if they told you what kind of Nephritis it is because from the discreption, I think it's the same as me, I'm only 15 though, it's pretty tough, wining is apart of it because what else can you do, I stopped wining because theres not much anyone can do. Anyways I was on 60mg a day for abour three months instead of just one and I had a biopsy too, they ten weaned me down VERY SLOWLY, felt like forever, then I came down to 30mg every other day, it's been 8 months and I went back for another biopsy and they said its safe to go down to 25mg now, I hope it makes a difference, but You should tell your husband that he would be really lucky if they wean him off, and the moon face will come down faster than you think, they weght gain also, but he has to remember that some of the weight gain is due to the fluid that the prednisone makes you retain, and yes the duritics(waterpills) will make you feel less puffy but it doesn't do much, the most effective way to lose the fluid is by IV. Its a good idea that you be there for him, because you change so fast in such a small time, it'll take awhile for him to get his self esteem and confidence back, but it's all with time. Keep you head up.

--Selasie

Well I have MPGN Type 1(type of nephrotic (kidney) syndrome) and I've been on 60mg of Prednisone since October 21st. I really hate this drug, but it seems to be working. I have all the side affects minus the eye problems (thank God) My hands cramp up, they are always shaking, and I can barely write properly. I have the moon face, I aslo have the weight gain, I get sad a lot, just because I have this rare disease, I have the acne, I have the knee pains, it hurts so bad I can't walk properly, I can't even sleep because of it. I've never been to the hospital in my life, but now I find myself in there atleast twice a week. Predisone is an amazing drug. To me I think it is a bad drug, But who knows, it might save my life. I have had the increase in appetite, but I'm trying to minimize how much I eat. It really sucks for me. I'm only 15, it's hard to go to school...I just want to stay home because I feel everyone notices how much I have changed! But I have a good support system, My family, always saying things will be alright. My doctors just decided to slowly wean me off the predisone, hopefully it doesn't affect how it is helping my kidneys. I wish you all get better, it is hard, but if I had to chose with the side affects and living my life and getting my health back, and between my kidneys failing and possilbly death. I think I would go with the side affects.

If anyone wants to talk I'm up for it, I could always use a friend, not everyone understands when you tell them your on steriods and thats why you look and act this certain way!

Best wishes to you all, Have a Merry Christmas, and a Happy New Years, and always stay positive and keep your head up, yeah its hard, but you know try atleast ;)

Mother was on prednisone for temporal arteritis. Started with 120mg. Had severe abdominal cramps with vomiting. She had heart problems, on warfarin and many other drugs. Doctor was aware of all of this. Tried to wean off medication.
My dad found her in the bathroom after suffering another bout of severe pain. She left us on May 3rd. at the age of 76.
Please be careful. This drug kills.

My husband was put on 80 mg Prednison last Thursday - I was out of town for the weekend. When I returned on Sunday, he had shaved off his beard and was in a manic state. His MD is beginning to wean him - he is now on 40 mg/day, but he continues to be manic, sleeps only a couple hours/night, believes he and God are having non-stop conversations and God is telling him what to do, is organizing various committees in our community - and about twice a day, breaks into tears! How long will this last? Anybody have any idea?

I just started taking a vey low dosage 5mg 3xday. for severe
rheumatoid inflamation and pain. I was desperate to be pain free so took Dr.s advice. It has taken my pain away almost completely. Noticed irrability right away, stomach bloating, increase in apetitite, low sex drive. I feel like I'm in a terrible mood and depresssed. Although it did take pain away. Dr. wants to wean me off down to 0 for the next 5 days and see how I'm doing. I don't want the pain back but might be something else he can put me on.
If'm glad he feels that it's unsafe to stay on. Told me of all of the horrible side effects.