Last summer I had an extended period of being SOB with wheezing and non-productive coughing. My pulmo put me on a burst of prednisone and it helped my breathing quite a bit. The problem was that I experienced negative side effects beginning on the first day. I couldn't sleep that night and went all night without a "bladder break." These breaks typically occur two to four times a night. The next morning, my weight was up three pounds (I weigh every morning and really needed to lose 20 pounds) and I was ravenously hungry. Eating didn't seem to relieve the hunger so I just kept on eating. In a week I had gained seven pounds so now I needed to lose 27 pounds. Throughout the burst I was jittery and irritable, sleeping poorly and had gotten enough of the "chipmunk syndrome" that people were commenting on it. After the burst, it took nearly eight weeks to lose the seven pounds I had gained in one week.  I know from the postings here that what happened to me is not unusual with prednisone.
Just before Thanksgiving I had the same symptoms again. I was really depressed about the prospect of going back on prednisone and tried a little home remedy first. I bought a bottle of Tussin (Wal-Mart's brand of guaifenesin syrup) and took a dose of it. Would you believe that with two doses the wheezing and coughing were gone?
I know this is anecdotal but it has worked for me two more times. Needless
to say, I keep a full bottle of Tussin ahead now.  Dick Brown <rlbrown@BIG-RIVER.NET>

Nothing helps me breathe as well during an extra bad time as Prednisone.  If the extra sob is due to heart, then of course it doesn't help.  When I really am so very short of breath I am most happy to take it tho I hate the side effects.  I get the moon face, I grow hair where I don't want it and lose hair where I do want it.  I can only sleep l5 mins at a time all thru the night.  The first time I ever took it I hallucinated while dozing at night.  I would wake up to find I had levitated above the bed and my body had come apart at the waist.  I would wake up a bit more, get myself all settled down, doze again and the same thing would happen.  One time I thought my brain was inside my dog's head.  The very confused time happened only the first time I took Pred.  About three weeks time is the most I have taken it at one time and so far I don't seem to have any long lasting side effects - YET - THAT INOW ABOUT.  Mary in Pa <MPrice166@aol.com>

The very first time I took prednisone, I ended up calling 911 because I could hardly breathe at all. This was in November, 1998. Since then, around July, 2001, I took a relative of prednisone and I nearly had to go to ER that time.  In short, I stay completely away from it and it's relatives! "John Walker-NV" <jpwteach@lvcablemodem.com>

My first experience with prednisone was wonderful.  I had had a very bad sinus infection, and the 12 day burst cleared it up within hours.  A miracle.  Few side effects.  This was 16 years ago.  Since then I have been on it (bursts only) for lung infections (bhronciectasis) 4 to 6 times a year, prescribed by my pulmonologist.  The last year I decided that many of my physical problems were mainly "side effects" and determined (with Dr. permission) to stay off both as long as I could.  That lasted 5 months before a really bad infection set in.  Same results, cleared up infection, but felt awful from side effects, i.e. sleeplessness, bloating, excessive appetite with weight gain, increase in heartburn (GERDS) and just generally feeling ill while tapering off.  Some of this could also have been from the Cipro and Levaquin that I was taking at the same time.  In August I again had an infection (I now insist on sputums) and tried taking the antibiotic and prednisone in tandem (in that order) to see if the side effects would be fewer, and they were.  My own feeling is that I will try to avoid using both as much as I can, but rather than face the hospital, I will take what is necessary.  I have not been hospitalized for COPD in over 19 years, I have had it since 1980, and probably before.  Lynn Anderson, Florida.  <Laurolyn@aol.com>

In my limited experience (three and a half years), I've only had two experiences with prednisone.  Both negative. I've had three exascerbations, one through ignorance and two through carelessness.  I was sent home with a prednisone burst prescribed each time.  Twice I followed "doctor's orders;"  once I ignored the pred and went only with the antibiotic. While the net result (recovery) was about the same in each instance, only the prednisone produced edema (the first time so severe I had to buy larger boots), itching and bruisied skin, insomnia, and, in one case, a night of halucinations and paranoid delusion. These last were terrifying enough as it were, but had I not read of the experience of others on the List, I wonder how I would have coped.  I intend to avoid it in the future, consider it over prescribed...and like the athlete's performance-enhancing steroids...just a "feel good" drug for us. Sometimes the one feeling better is the physician who thinks he/she has done the best thing for us. Just my personal opinion, of course. I do not wish to draw down upon myself the wrath of those who believe M.D. stands for Medical Diety.  MJ in VT <mjnolde@sover.net>

I have been on pred since 6/29/99.....Dosage goes up and down depending on my condition.
Pros....for me.....
1. Keeps my pain in the back and elsewhere at a minimum.
2. Helps with my breathing so much, I don't know what I would do without it.
3. Keeps the inflamation in my Right ear down and  sinuses under control.
4. Takes away most of the skin rash I have.
5. Makes me feel good and I have more energy.
Cons......
1. I gain weight when on it.
2. I eat like a little pig.
3. Always hungry.
4. Changes the RX of my glasses a little bit.  Not enough to change them.
5. Moon face.
. So far no sign of Diabetes. Thank God
Right now I am down to 9 mg.  trying to slowly get off it. Char <cmwerblun@webtv.net>

I first began Prednisone as a maintenance medicine in 1991.  I have been on it daily ever since.  I received a double lung tx 4 years ago last month.  My maintenance level is 15mg daily.  I have the typical "moon face" and the extended stomach.  I usually want to eat all but the "cow's Moo."  It is so difficult trying to lose any weight while on Prednisone.  I weighed 176 lbs. at the time of transplant on 1/23/98 and I currently weigh 208 lbs. 
 John Vernon <jvernon@satx.rr.com>
Bilateral Tx
1/23/98
Barnes-Jewish 

I have been on Prednisone since 1992. I started on Methylprednisolone or Medrol but switched to Prednisone when I changed doctors around 1993 or 1994. As a result of being on Prednisone for so many years, I am considered steroid-dependent. I have a lot of side effects. Diabetes, Osteoporosis or beginning Osteoporosis, aggravated symptoms of my original back problems which are considered  "Severe" at this point. Recently, I got an  infection which I believe is related to either Prednisone or my acquired Diabetes. The treatment for this, among other things, is steroids. A merry-go-round of nonsense.  I also have hair  growth all over where hair should not grow. My nails grow quite fast. And when I try to stop the Prednisone, even the 5 mg. I take daily, I get sick and can't function.  I get all sort of additional problems when on Solumedrol during an exacerbation. And lots of muscle cramps when tapering down. My current doctor doesn't 'taper;' if I am on high doses for less than 2 weeks, I 'taper' down by 5 mg. per day until I am down to my 5 mg. This keeps some of the side effects down.  However, if it wasn't for the Prednisone, I would not be here. In the beginning, it used to make me high and gave me a chance to catch up on chores I couldn't do when I was ill and not able to breathe. Now it only stabilizes my condition and helps me get over an infection and inflammation of my lungs. I do wish they would find something that was not as dangerous as Prednisone but for now, I have learned to deal with it.*Did you know that the man who invented Prednisone committed suicide when he found out all the side effects? This is documented in the book  about Prednisone and its good and bad sides.*
Other side effects are blurry eyes and cataracts, high blood pressure, bone disorders, muscle cramps and pain, and a lot more that come and go with the use of steroids over the years.  However: one must take the bad along with the good. Until something better comes along, I will stick with the Prednisone and use it accordingly and with judgment and common sense. I tend to take care of my own needs and requirements rather than stick to doctor rules. If you have COPD for a number of years, you usually learn how to  deal with your own individual needs. Prednisone, as any medication, must be used with caution and common sense. This is my opinion. I would much prefer using something other than Prednisone but there isn't anythingto compare with  reducing the inflammation and shortness of breath at this point. Each of us are different with our COPD/chronic bronchitis/emphysema, and I have asthma, too, along with allergies.  I can deal with the side-effects at this stage of my illness as I am accustomed to them. I don't know if I could deal with another type of medication or regimen at this point and don't wish to try.  In order to survive and function adequately with my specific conditions, I need Prednisone, despite the side-effects.  Luckily, my condition seems to have stabilized and my exacerbations and hospitalizations are far apart and few. I have not had a hospitalization for well over a year and when I get sick, it is taken care of quickly with antibiotics and Prednisone. Of course, other infections do occur, like right now, but with the advice of a specialist are managed easily.  My severe COPD remains severe, with a breathing capacity below 40%, and I don't want to know anything else about numbers; if I can breathe adequately and do what I have to do with a smile, I am happy ... Prednisone or no Prednisone.  Sheila [VA Beach] <gremlin39@prodigy.net>

I originally started taking Prednisone for a stress rash that I have had for 12 years now.  I did not know what the steroids would do until after I had used many large dosages.  It was then too late.  I had to used a burst (large) of prednisone last November when I had a really bad breathing time and ended up in the hospital.  I did not want the steroids in me at all, but when you can't catch your breath and you are paniced then you let people do whatever they can to help.  They started pumping the steroids in the ambulance.  They make me very hyper, nervous, cry a lot, and a little crazy sometimes.  I would prefer to never have them, but if it means that I can breath without having to get a ventilator surgically put in me then I will take the steroids.  Not being able  to get another breath is the scariest thing in the world to me, and I will do whatever to relieve that horrible panic.  Pat in NC  <PatCor@aol.com>

I have had only 2 experiences with prednisone and they were both short 12-day and 6-day packs. Have been lucky so far.  usage of prednizone packs was satisfactory.  They worked as wanted - allowed easy breathing till infection was removed.  Only noticeable side effect was increased appetite.  Howard in MB <hoobmb@gte.net>

Haven't taken it but 4 or 5 times and it was one of the packages where each day it is spelled out how many you take over a very short period of time, maybe a week or 10 days, I forget it has been so long ago.  It worked beautifully for me the times I took it. "Anita" <abjones@nfbb.com>

My first pulmologist had me on 150 mgs. a day, then slowly lowered the dose. Choose your doctor carefully;  Most of us do not need prednisone for long lengths of time or in such high doses.  I have bone loss, ulcers, GERD and very fragile skin from taking too many large doses over the past 5 years.  Mimi Bird - WI <mimiybird@yahoo.com>

My thoughts and experience of being on prednisone are: I get  very hyper active, don't sleep,
have mood swings, become weepy for no reason.  My husband hates it when I am on the stuff!!! 
  He has learned to keep well clear by going off to the the golf club when I'm having a bad day!
Of course there are all the other side effects, which most of us have - weight gain, easy bruising, & the gravelly (sexy!) telephone voice.  However, in a nutshell, it is all we have at the moment, and whilst the cure is worse than the condition, we do have to be thankful for the good it does do! Yvonne Bedson <yvonnebed@optusnet.com.au>

I had been on Prednisone for 1 1/2 years.  They gave it to me in the hospital and I came home with it.  I started out on 40 mg...then down to 20 ,10 for a long time and finally 5mg for months then slowly tapered off as of 10/8/2001.  This drug was good for me as far as helping me breathe.  But it made me very hiper, ate all the time, could not sleep.  Caused my feet to swell...and I always felt like I was in a different world--kind of out of it--or it was really not me but someone else..anyway I did not like thefeeling.  Oh, also my skin got very thin and bruised all the time or just started peeling back like you would peel a banana.  It also played games with my eyes--things were blurry or looked real light--it was strange.  So needless to say I am so happy I could get off of it.  It did help when I needed it--but enough already.  Probably if I land in the hospital again, again I will be put on prednisone...but until then, I like feeling like myself..........."Sherrie" <tweetysp@tampabay.rr.com>

My decision to take oral steroids on a daily basis was not difficult to make.  I was diagnosed with severe copd 5 years ago at age 51 with severe components of asthma, chronic bhronchitis and the big E. Even at my sickest my 02 levels remained in the 90's, which is a bit unusual.  After all the standard tests my pulmonary doctor determined that my airways were severely damaged-inflamed and highly reactive.  When I was out of the hospital and not on Solumedrol my daily dose of oral steroids started at 60mg.  Over the 5 years we have tried different variations of meds to find the combination that works best for me.  20mg daily was my standard for 3 years until we tried Advair 500/50 (Flovent 220 with Seravent didn't work as well for me).  I am now down to 15mg oral steroid, the inhaled steroid in Advair and a nasal spray steroid, along with the other usual meds.  We have tried dropping from 15mg to 14mg, hoping to wean on down, but I always ended up sick again, and usually in the hospital.  To date, it has been 16 months since I was in the hospital with a breathing problem.  A real record for me.  My pulmonary doctor made me and my husband very well aware of the many side effects of steroids.  He made it absolutely clear it was like making a deal with the devil.  And he insists on seeing me at least every 6 weeks, mainly to monitor for side effects.  And I have had some.  The bruising on the arms, fluid retention, acne, round face, weight shift and some gain (always hungry, but work hard to control that).  The more serious side effects have included fractured ribs (he then changed me to Actonel along with my calcium supplements and my bone mass is increasing), a GI bleed, which brought a stay in the hospital and was checked out by my gastro doctor and treated, and an elevated white blood cell count.  I understand fully that steroids will not add one day to my life, but that in my case it enhances each day.  I have far more good days than bad and my husband and I are able to do many of the things we've always enjoyed. The prednisone does not give me ' extra energy' nor does it keep me awake at night.  Guess I'm lucky that way, though I wouldn't mind the extra energy!  But who knows-I might not be able to get out of bed without it.  I feel strongly that anyone considering using this drug long term fully understand their medical condition to start with and have an excellent working relationship with their doctor.  I am lucky in that my pcp and pulmonary doctor work closely with each other and they both look out for me.  Steroids are powerful drugs, no matter how you use them.  The steroid nasal spray caused me awful nose bleeds at first, until that was treated and brought under control.  But, I really believe without this drug I would not be here.  My body no longer has the ability to get air into my airways and get it to my lungs.  I always have a mild case of bronchitis-the steroids keep it mild.  My pulmonary doctor has told me that faith and fear cannot reside in the same body.  I have learned what he means by that.  I have faith in his decisions and he backs up all his decisions with frequent testing which he shows us and explains to us in detail.  My fear of this drug has been overcome by his teaching me about my particular medical problems. So please, do not consider this a blanket statement saying that all COPD patients should be on steroids.  This is my experience only.  Nancy Harris <bnharris@airmail.net>

I HAVE USED PREDNISONE TWICE FOR POISON IVY, PRIOR TO BEING PUT ON IT FOR COPD. I HAD NO IDEA WHAT THE SIDE EFFECTS WERE THOUGH!  FIRST IT GAVE ME SUCH AN APPETITE,WHICH ACCOUNTS FOR MY WEIGHT GAIN. MY FACE PUFFED OUT AND MY STOMACH LOOKS LIKE I AM PREGNANT!!  I HAVE A BIG DOUBLE CHIN. IT HAS NOT EFFECTED MY SLEEP THOUGH.  MY DOCTOR IS TRYING TO GET ME DOWN FROM 20MG BY DECREASING 1MG EVERY 21 DAYS. I HOPE IT WORKS. Betty Oppy <boppy@mail.win.org>

My story on pred is, Im 36 , now and from the age of 26, I took it 20 ml a day for 7 years straight.  I had the normal weight gain , and moon face , hair growing every where , you dont want it !  Mood swings badly , mostly depression . I have now been off it for 3 years and Im  told that the pred weakened my bones , I have 2 disks in lower back that have ruptured for no reason meaning I have not lifted any thing heavy or had any accident , also I have one inbetween my sholder area thats just bulgeing . I dont think I should have even been on this drug for so long.  And no one told me this might happen either . So in my opinion , I dont like them and will not take them unless I really needthem . Im waiting on a double lung transplant and there will be a day when I  will have to take them,
for me to live .  Linda Sumrow in NM<lungssumrow@yahoo.com>

Prednisone has probably helped me stay out of hospitals and ERs during exacerbations of my asthma/emphysema, so I'm grateful for that--I've take it for short bursts of days or weeks under doctor's orders when my lung function fallen very low & rapidly.  It does cause me to be very "hyper," moody, and bruise very easily, as well as insomnia.  I have only had bursts of prednisone (20-80mg/day, usually mostly 20mg), so those are the major side effects I've noticed, and they have all always cleared up shortly after I finish my burst and taper, fortunately.  I'm not sure, but possibly it has also been at least partly responsible for incresed uterine bleeding (two to three periods a month rather than the usual one).  My OB/GYN wasn't sure & I haven't yet found a new OB/GYN, which I will do soon!
Good luck & hope this is helpful.  Please post your page on YOUNGLUNG with Becki--we'd love to see it!
Aloha,
Starion--thriving in HI  <chang@lava.net>

Ugh!  what a drug!!!! 
That drug saved my life, yet it destroyed it at the same time.  I am 16 years old, and I weigh 80 and 5'1.  I was on the drug about a year, I went up to 110 pounds.  I was out of school a lot because of my asthma and when I went back to school there were tons of stares and questions.  My self esteem plummeted.  I think the drug is necessary but should be used with caution.  I have never been fat; always the skinniest person ever. For that 6 months I wasn't.  That was the least of my problems though,  I now havehypokalemia because of it. I have to be very cautious of my potassium level it gets depleted very easily.  the whole last summer I had to watch my blood sugar because of it.  It was 220 at one point, that's high for a 16 year old. The drug is a life saver though, I can honestly tell you I would not be here without it!  I guess everything has good and bad sides to it, and medicine is not an exception.
Annie <SHORTY6600@aol.com>

When I was transplanted nine and a half years ago I was not told the side affects of prednisone or any other drug. ( I don't know of any of my friends were told either unless the Doctors have changed their attitude, even when I was putting on weight the Doctors wouldn't admit it was due to the steroids) There is no choice!.  I have all of the 9 symptoms you have pointed out.  Three drugs are essential to stay alive and must be taken every 12 hours. They are prednisone, azathioprine, cyclosporan. Steroids are a bad drug as they do so much damage to the body, yet at other times they do a lot of good.  It's pretty much 50-50 depending on what disease you have, dosage and length of time one is on them. .If they keep you alive they are worth taking!  P.S In Australia when one has a transplant they are not told of how the
drugs will affect them now or in the future. I'd be interested to find a transplant patient who has been told in advance, as it's not an easy road as some people think. I refer to transplantation due to the last comments made in your statement.  <yvettes@smartchat.net.au>

I use 6 mg Medrol every day which is methyl prednisolone. They are all steroids. I have taken as much as 24 mg per day for short periods. I try to get along on as little as possible. It works but the side effects are brutal. I have plastic lens insert in both eyes due to cataracts. My skin is very sensitive to bruises. I have purple blotches all over my arms and legs. Before Medrol wounds would heal very fast; now it takes several weeks. I am hoping that Spiriva, when it finally gets approved by the FDA, will allow me to quit using this stuff. Again, as I said, it is very effective in reducing the inflammation in the bronchia but the side effects are very, very bad.  Fred in Indy <FREDKOOSE@aol.com>

Right now I am on a low dose of prednisone. So I'm not really affected by these side affects. 
Well that and I've been on prednisone for so long I've become immune to theses side affects. 
Although it does help me out with the breathing part. I hope I could help some what with my pros and cons.  Lori Dufresne <tiggern8@cox.net>

Prednisone,  when I was frist started on it was last part of 1980's and then in the 1990's the doctors had me living on it.  If dosage was high I got very hateful.  I did get a fat face and still do, if I have to take a lot of Steroids.   I do have lots of bone pains but I got use to it, I get a sick stomach sometime.  I got worse with the Prednisone .  Now I take Medrol, It is not that bad now with my medrol . but  I either breath so I live on one 4 meg of medrol a day and on very bad times I up it , but my doctor and I are ok with it.  I have been on my meds so long that I take care my slef but I go to my doctor every
3 to 4 weeks . I  had bbecome Steroid dependent in the early 90's. When I am in the hospital I do have to take sulmedrol.  Now we wacth my suger level constantly.  I'm in trouble if it gets too high or too low.  I thank God for the steroid.   I couldnt live with out them.   I don't have fluid problems any more, but, I seem to be loosing weightt agian. Just a few years back I had to live on fluid pills.  but, I learned to wacth my salt intake, now I do eat some salt agan, I have low blood presser now, so I have to wacth it.  I take a pill to lower my heart rate. It lower the blood presser also. It isn't hard to learn to watch what you eat, but it is hard to learn not to be hateful on them  Try and be nice about asking your loves one to back off when yor dosage is high enough to make you a grouch.  Warn them you had to up your steroid dosage and that you do bite.and (hopefully) in time they will understand. I am 44 now and I have thyroid playing games on me due to the steroid's we do wacth it all the time so far it just playing games no medications needed for it yet.  I won't let my self get depressed or feel sorry for myself.  I try to stay doing things as much as can.  The wheezing and coughing never goes always, it lives there inside waiting to jumpout.   I also have multiple chemical sensitivity (MCS),  If I get arould perfumes or smells or walk to far or get moved around. so I drink lots of hot very
weak coffee.  Which seems to help me. COPD/Emphysema, intrinsic asthmatic, bhronchitis, and MCS, along with allergies and Vocal Cord Dysfunction.  After going to National Jewish Center in Dever col, I lern don't go runing after rainbows if your doctor arould you can't help you most time the best docs in world can't, unles you get a new lung.  I will not be getting one of them,  I might only get sicker but so far I am  blessed, I am not dieing,  I am only sick, but my faith in God, and freedom to share God's love with others has helped me.  As in all cases some day I will die and COPD will win.   Until then, make the best of life that you can, I do have o2 only to help me get breathing agan if I need it.  hugs and prayers   ICQ number  7341931
"Darla Arnold" <darlaarnold@cableone.net>

Just got out of the hospital and, of course, had prednisone in the form of solu medrol and then in pill form and am taking it now, at home.  My face is round and full and I have "ducky fuzz" on it.  My belly is big and I am overweight.  I feel terribly ugly.  I may have heart trouble -- they're not sure yet.  I have pseudomonas and will have a picc line put in tomorrow.  Prednisone -- what's the difference?  I was intubated -- I'm still alive!  I want to be alive.  I can't make the drug the bad guy it's the disease that is sucking the life out of me.  I've gotten thru crazy wheelchairs and son-in-laws that don't want me around -- prednisone is a breeze -- it just puts me into depression.  Rosemary Dillon   GrandmomBubble@webtv.net

Prednisone - The drug you love to hate. I am down to 2mg per day.  If all goes well in another week I will be down to 1mg for two weeks and then maybe off it.  Haven't been able to get off it in over two years.  The withdrawal (for me anyway) is absolutely awful.  I spent yesterday on the couch with a blanket and pain killers every three to four hours.  My joints feel like the worst flu I have ever had.  My left wrist is so bad I can't even pick up a half gallon of milk.  If I manage to finally get off it, it will take a lot to ever get me back on it again.  The hugh weight gain may never go away (pred makes me want to eat everything I see).  I have lost about 8 lbs since I have started the withdrawal but I think that is due to diet change and more exercise than anything else.  I hope they come up with something that deals with inflamation but without all the horrible side effects of predisone. Jim Allen <jimallenck@hotmail.com>

My own experience with prednisone has been limited and has had only positive results (except for gaining 10 lbs).  I think used only for exacerbations, it is a good drug.  However, I ran across something I wrote (I think to you) about 6 months ago.  I want to reproduce what I wrote then, as the emotion was running high and my feelings were very close to the surface.  Here it is. They buried my cousin last week.  I truly believe she died from prednisone every bit as much as from her lung disease.  She was on prednisone for years.  It helped her breathe better so the doctor gave it to her.  He was stupid and so was she.  A year ago, she was told she needed a lung transplant.  UCSD turned her down because she was on so much pred.  USC turned her down because her osteoporosis was so advanced.  She spent most of the last year in tremendous pain, even with the morphine.  She once had 17 spinal fractures in a 2-month period.  She was in a body brace and bedridden.  Her death was truly a blessing.  Prednisone is a valuable drug when dealing with lung disease.  But the potential for misuse through ignorance of the total picture is tremendous.  Beth Kern <bbbkern@cts.com>

In addition everything Karen mentioned (btw, great post Karen)  I'd like to add another less 
common (but very well documented) adverse reaction to prednisone.  Avascular Necrosis
(AVN), also known as Osteonecrosis, can be caused when the body reacts to heavy
corticosteroid use by reducing or shutting down the blood supply to one or more weight
bearing joints.  Usually this will eventually require the artificial replacement of that
joint...such as total hip replacement.
Len Geiger <lengeiger@CHARTER.NET>