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Scared! [02 Sep 2007|12:18pm]

Starting today I am back to trying to wean off Prednisone.

I am happy and terrified about it.

Happy because I hate hate hate prednisone and the side effects.

Terrified because every time we've tried to wean off prednisone prior, I have a relapse and then the current treatment never works again and we have to step it up to the next step.

The next step for me is surgery :(
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[15 Jul 2007|05:11am]

its after 5 am and i have yet to sleep tonight. gotta love the insomnia prednisone brings!
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Prednisone [24 Jun 2007|10:10pm]

So, I am on my third round of prednisone. I am 35 years old. When I was 32, my doctor did a physical and told me I was extremely healthy...ahhhh, how fast a little white pill can change things.

First time for asthma in October 2005 (10 for a week, 5 for a week) Little did I know...it stopped a chronic cough of 17 years though, so I thought it was the WONDER drug and couldn't understand why the doctors were reluctant to prescribe it to me a second time when the cough came back before the asthma medicines got it under control.

January 2006 - I got this weird rash/sores on my legs, hospitalized until they came up with a diagnoses - Vasculitis (the disease). 40 mg prednisone for about 9 months. I disagree with the diagnoses and by then figured out how bad prednisone was, tapered off down to zero, illness never came back. Really bad moon face, hairy face, prednisone hump, not too bad on the weight gain, I walked and exercised my little heart out. Though I did get high blood pressure from the prednisone and became very hard to draw blood from.

March 2007 - Hopsitalized again, this time with a Hemglobin count of 6. I'd had some issues for a couple of months before this (dirrehea, blood in my stool) but thought it was probably IBS and no big deal...because I still had the diagnoses of Vasculitis from the previous year, the doctors had warned me if I got ill (had the flu) that I'd get really sick...back on 40 mg of prednisone and with a new diagnoses of Ulcerative Colitis (turns out the vasculitis was a symptom, not the separate disease). This time, I have not been able to taper off, every time we try to lower my dose of prednisone, the internal bleeding starts up again.

Now I have the moon face again, but even worse in my opinion is I've developed type 2 diabetes from being on prednisone...has anyone else developed diabestes from pred?
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I'm Jenni, hello. [29 Sep 2006|02:30am]

Hi everyone! Please excuse me for not taking three paragraphs to introduce myself and my history; I have rheumatoid arthritis and my hands are flaring quite badly tonight. So, long story short. I was diagnosed with RA as a child and put on prednisone not long afterwards by a quack doctor who needs to be sued, but that's beside the point. I have been on what is apparently a medium dose (between 10mg and 20mg) every single day for over twelve years now. I've had two total hip replacements and one shoulder, and DEXA scans show my bones to be comparable to that of a 70 yr old woman's. In short, prednisone has RUINED MY LIFE and I've decided this is enough. It has to end now. My current team of doctors have supported my efforts to taper off the prednisone for five years now but it seems dropping below 10mg kicks me into an unimaginable flare-up. Well, so what? I am disabled and live at home, and I have nowhere to be for the next few months, so bring it on. After a month I'm now down to 9mg daily and at about the same pain level I was at 15mg, so I'm continuing to drop 1mg a month.

My question is: Is there anyone here who's been taking such a large pred dose for anywhere near this long? Or is there anyone who has tapered after having taken more than 10mg for more than six months? In specific I'm wondering "how low I have to go" before I start seeing the physical side effects drop away. I want to rid myself of the horrible fat ugly moonface while I'm still young enough to be pretty underneath. I want to stop having to fucking shave my face like a man. Yeah, yeah, I know -- all of the horrible scary things prednisone does and I'm here to ask about cosmetic issues. Who else here has moonface? How much pred were you taking when it developed? Has anyone here ever successfully LOST the moonface after tapering? How long did it take?

EDIT:  Well.  I first posted this over six years ago, and I still get comments and replies on a regular basis.  I haven't logged into LJ in ages, but I've just went thru and unscreened a lot of comments so that everyone who sees this can read what dozens of others have to say about the curse that is prednisone.

The bad news?  Yeah, six years later, I'm still on the stuff.  Fuck.  I've also had a lovely bilateral knee replacement to match the hips and shoulder, and it's likely I'll be having my last remaining "major" joint -- my right shoulder -- ripped out and replaced by plastic and titanium within the next few years.  If this keeps up I'm well on my way to becoming an actual Cyberman... but the doctors I get to deal with are pretty worthless.

The good news, and this is very good news for anyone interested in my original post: YES, it is possible to go back to looking normal even if you've been on high-dose pred for twenty years.  I'm back at around 12mg right now, but it's mostly due to an accidental injury a few weeks ago. This is actually the first time in years I've gone higher than 10mg.  I made it as low as 4mg at a couple of different points, and found out that below around 5 - 6 mg daily, my moonface starts to fade away.  It never disappeared entirely, but I believe it would have if I'd been able to stay at the lower dose for more than a few months.  It takes a very long time to start seeing the effects fade away; I was below 5mg for six months before my face noticably slimmed down.

It's difficult to pinpoint exactly what the magic dose is because it also seems tied in to my weight in general.  Unlike most of you, I've never gotten fat from the prednisone.  Yeah, let's not fuck around with "bigger-abled people" or whatever.  Face it, prednisone makes people fat along with our moonfaces and our lush female beards and mustaches.  I don't know how I avoided that curse, though I suspect it has to do with the fact that I've pretty much been nauseated since I was 12 years old and I don't eat enough to sustain a bird.  I'm five feet tall and weigh around 105 now.  I've been up to 120 before, that's probably my heaviest, and I look a wee bit pudgy at that size but still fit into my jeans.  The pred seems to concentrate all my fat into my face and stomach, how attractive, and I'm absolutely forbidden from doing crunches\sit-ups because they're afraid I'll crack my spine and end up a paraplegic due to wanting a flat stomach. Probably not worth it.  Probably. 

I wish I could end with something positive, but my life pretty much sucks. I'm 31 years old and severely disabled, live with my parents, no driving license, fat face, pronounced limp, body hair of a gorilla. I haven't had sex in 10 years and will probably hate my life a little more each year until I finally die sick and alone.  That's what prednisone has done to me.  If there's anyone out there who isn't quite as badly off yet, I beg of you, stop taking the drug.  Even if it means being hospitalized for a goddamn year.  Your older self will thank you for it.  Prednisone WILL ruin your life and make you regret ever having lived to adulthood.
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Intro and question [13 Sep 2006|11:15am]

Hey, I'm Ro. I've on the pretty pretty white pill for about...um...5 years now, for Lupus. It sucked then and it sucks now.

Question: What would you do in the scenerio: you haven't taken your pred and have no way whatsoever to get any for the next 8 hours. Do you have a backup med that you might take instead?

For the record, I usually stave off my symptoms (joint swelling, plursey, muscle aches, etc.) with Alleve if I've missed my pred dose. Just curious if anybody else here has done something similar.
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[02 Sep 2006|12:39am]

i've been put back on prednisone for my lungs, and now i can't sleep. i'm just waiting for the other side effects to show up. i'm on so many meds now that my system is going to lash out at any moment, i'm sure of it.
what do you do when you can't sleep?
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Good Mood Swings??? [25 Oct 2005|03:49am]

Ok, so you know how prednisone can put you in the crappiest of moods. Almost to a point where people around wished you were on your period, because then the mood swings would go away in a matter of days...

Yea, So when my doctor started lowering my prednisone I was soooooo not ready for them. But, I don' tknow what the hell is going on and I'm not complaining at all, I'm just confused.

I'm having extremely GOOD mood swings. Nothing is bothering me. Like, my vaccuum broke and I was like ehhh whatever. Had this happened another time, I probably would have thrown it off the porch or something.

And, I feel like cooking for some reason? When mostly I don't feel like doing cahcah. And my house is clean, whenever I'm lowering my doses my house looks like a tornado hit it.

And I have energy? Ok. Ya, Do you see how I'm confused.

But, like I said I'm not going to complain. I hope this lasts.

Good Moods to all,
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info [13 Aug 2005|03:51pm]

[ mood | cranky ]

Some people say take some extra pantothenic acid supplement will help the withdrawal effect of cutting prednisone. It is part of the B complex of vitamins.
I also try to take as much Vitamin C before it gives you diarrhea. Vitamin C has anti inflammatory effects.
Also drink lots of water. Pred take calcium out of your bones. water flushes your kidneys and reduce the chance of making kindey stones.

The rest is just luck.

This might help : http://www.gnc.com/health_notes/healthnotes.aspx?ContentID=1233001&lang=en

tchau, Alan

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[12 Aug 2005|01:36pm]

hello, I just found this community and I wish I had found it sooner! anyways, I have been on prednisone on 2 separate occasions. The first time was because I had mono....the 2nd time was just this past spring. I went to the Dr. because I was having lower abdominal pain. They took my blood, and, to make a long story shorter, turns out I have a very low platelet count. I had to see a specialist at the Oncology/Hematology clinic...and I was pissed when he Rx prednisone.

The first time I was on it it made my head hurt and I had awful mood swings. I was a total bitch. Anyway, I had to take the PFH (pills from hell) for about 2 mos...I have been off them now for about a month and a half.

I guess my main reason for posting is because I have a question about my menstrual cycle. I haven't had one since the middle of June...I am not pregnant so therefore I have been a little worried. Is this normal? I read on another post that this has happened before but it makes no sense to me and I don't want to go to the doctor because I'm afraid they'll just charge me a bunch of money and give me some other PFH. Help?
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[28 Jul 2005|05:53pm]
is it alright to drink beer while on pred?
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[27 Jul 2005|01:30pm]
hi everyone, i have just recently come down with what seems to be posion ivy all over my face. i'm just about to leave for the doctors and people have been telling me that i will most likely be put on prednisone. i'm wondering if about a weeks use of this drug to clear up my poison ivy will leave me with some of the terrible side effects it has, or make me gain weight?
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Forgot one [02 Jun 2005|03:41pm]

[ mood | pessimistic ]

I forgot one side effect, The cartilage inside my nose is totally dissolved. From about a half inch up my nostril to the bone of my skull my nostrils connect. All the cartilage is gone. It started about 4 year into the drug.
I can do a few trick of putting say a pea in one side and blowing it out the other. Great at parties. Ha Ha. I do worry that some day my nose is just going to cave into my face.

But it has not happened yet.


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Hi [01 Jun 2005|06:45pm]

[ mood | gloomy ]

JRA 28 years, on prednisone for all but 18 months.

I have never been on more than 30 mg's

I have had most if the side effects, hence my name

osteoporosis, that gave me kidney stones cause that is were the calcium is deposited.
I have had both eye done for cataract's.
High blood pressure,
impair immure system, any cough and I catch the cold and have toe nail fungus infection.
skin rashes,
moon face,
hump on the back of neck,
excessive hair growth,
weight gain, bad for my prosthetics, hips & knees.
major mood swings.

I hate the stuff but it was the only thing that lets me get out of bed.

more another time.


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New girl! [31 May 2005|01:26pm]

[ mood | sore ]

Hi I just found this community. I am 24 and I have RA (Rheumatoid Arthritis). I have been on prednisone for about 9 months now. It seems to be the only thing that has helped me at all so far. While we search for a drug that works for me, pred is my only option. And I hate it. I have never weighed so much in my whole life, and Ive had 2 children o_0. I have brand new strech marks on my arms and stomach. It makes me fat, angry, hairy, sick to my stomache, pimply and giving me higher blood preasure than is normal for me.. And that is just what it I can see. I have no idea what other horrid things it is doing to my bones and such. Its driving me insane and I wish to god I could stop taking it. But without it, I can barely move. Thanks for listening to me rant :) Oh yeah, I usually take 15 to 20 mil a day. Ive tried to step it down more than that and 15 is the least I can take with any result.

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ugh... [11 May 2005|04:14am]

i'm on 60mg's a pred now and i can't stop eatinggggggggggggggggggggggggggggggggggggggggggg
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New member [19 Feb 2005|12:41am]

im glad i found this group..my name is Donna im 21 and i have been on prednisone for 9 years due to asthma..the highest dose ive been on is 120mg..right now im on 30mg..it saved my life but the side affects are not worth it sometimes..i have the bones of an 80 year old,weight gain and moon face of course and my eye sight is awful..prednisone has also given me terrible body pains,change in my moods and pain in my teeth..i take lots of other asthma meds but i still end up in intensive care every year sometimes more than once..i hope none of you have to be on it this long..and i hope a substitute comes along for us soon
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[20 Dec 2004|08:00pm]

gross personal question about my menses.Collapse )
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[01 Dec 2004|09:49am]

So how long did it take for everyone to get side effects? Has everyone had them?
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[30 Nov 2004|10:53pm]

and fyi for the ones who cannot sleep...(not sure if this will change though) I take 50mg of trazadone (the generic name for dezarol-however it is spelled) it is a low dose anti-depressant that helps me sleep-which helps my moods most of the time...maybe it will work for others (and no nasty side effects-my mom has taken it for 12 years no problem-and it is cheap-for cash payers like myself.)
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[30 Nov 2004|10:46pm]

Ok so it has finally happened-I began 20mg prednisone this morning....scared-yes I am. So other than that I am also very frustrated-I guess my antibody tier is 1 to 320-I read that anything over 1 to 60 is Lupus. Half of my doctors know it is Lupus-the other two are being skeptical because the other blood and urine tests that were done are ok for now (I was not in a flare I believe)-but I am assuming there is only so much that can be checked thru that to see where the Lupus if attacking. So help me-what tests should I be asking for (while I have it financially covered-it won't be for long)....the doctor yesterday said it is obvious something is going on with that tier so high-it has to be systemic. So am I right in assuming they need to check more areas? I am losing my mind....I go back to one of the docs Monday-HELP!!!!!

BTW-out of nowhere I got so sick today-weird coincidence I hope-stuffy, sneezing all day-which made my head and chest hurt...watery eyes-took a Alavert-and it did not do anything-and of course had to work all day:P

You are all in my thoughts and prayers
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