PredniSONE and water retention

A year ago I was diagnosed with Sarcoidosis and began taking 50mg Prednisone per day. The worst side effects in the beginning were weight gain, moon face, facial hair, hump-back neck, bruising (for example, just by my knees being together while I sleep,) excruciating joint pain and water retention to the point I felt my skin would split open. And poor vision which could have led to glaucoma, but an eye specialist put me on eye drops to reduce the pressure to normal levels. I've felt horrified and embarrassed by the change in my appearance but relieved that my sarcoid was being treated.
I feel confident in my case that Prednisone was the necessary treatment. My pulmonologist, opthamologist and regular doctor all agreed on a course of treatment. But I really advise people to get a second or third opinion before they take it. A friend of mine was prescribed a weeks course of Prednisone for a severe sinus infection. Luckily she didn't have any side effects but I really question if it was necessary. I'd also like to stress that if you're on Prednisone and experience worsening vision, please see an opthamologist who is a glaucoma specialist because it can lead to blindness if not treated.
And lastly, sorry this became a novel! I have been tapering off and I'm down to 20mg. But recently I've noticed my hair is thinning so much. I lose a ton when I brush it and it clogs the drain when I shower. Also my skin is shedding. When I shower and use a loofah sponge like I've always done and I lose layers of skin like a snake. I would really like to know if my hair will start to grow back when I'm finally off the Prednisone or am I going to lose it completely??

I have gained 40 pounds, I have blurred vision, I am loosing my hair especially in the groin it is almost all gone, legs it is all gone and under arms it is all gone, mood swings crying and broken heart over every little thing, craving salt, water retention and more.

I was diagnosed with Rheumatoid arthritis at the end of 2007 and have been on prednisone since then. I started on about 105mg a week and am currently trying to reduce it but it is really hard as the moment the dosage goes down I lose all mobility and cannot even get out of bed. I am only 23 years old and really feeling the disease to the extent that I cannot even cope with my life. The prednisone has really taken its toll on me and the side effects are crazy! I just want to go back to my old self as I am finding it sooo hard to get through a single day. My side effects include:

Insomnia, tooth sensitivity, depression, anxiety, mood swings, moon face (my face is so swollen that I cant stand looking in the mirror anymore, dizziness, temper, feelings of uselessness, nightmares, night sweats, water retention, and to top it all off the arthritis is getting worse and I am in constant pain. Is there anything anyone can suggest then please help me!

I was diagnosed with SLE (lupus) when I was 14, I'm 21 now, and I've had to be on prednisone all this while. The dosages alternate between 60mg (the highest) and 2.5mg (the lowest), I just went for a routine check up today and found out that my protein level in my urine is at an all time high. So the doctor is pushing me back up to 30mg of prednisone. Its 2 am, and I am sitting in bed crying because I don't want to have to go through everything again; the weight gain, the moon-face, everything. I know I may sound shallow, because ultimately, the medicine is keeping me alive, but the side effects are terrible. Very few people understand that its not fat that you're gaining, and the remarks that I know I am going to get are enough to drive me insane.Is there anyway the water retention or the weight gain can be stopped or decreased?

I was diagnosed with Ulcerative Colitis when I was 20. (i'm now 26) I was on 80mg of prednisone for about 2 years. I again about 45 lbs, between water retention and just an increase of appetite and extra calories. I developed moon face and all the other horrible side effects. I was sweaty, bitchy and fat. Needless to say I was miserable. My doc put me on Remicade as an experimental drug, and it seemed to work well. We were able to wean myself off the prednisone and within 6 months the weight came off with the help of some Weight Watchers. 6 years later I'm back on the prednisone, but only 40mg this time, and hopefully for only a couple weeks. It's only been a week and I have insomnia, night sweats, mood swings (my poor boyfriend) rapid heart rate, and weird dizzy/nausea spells in the afternoon. My face seems a little bit fuller, but I think I'm being overly critical since several people have told me I look like I've lost weight in the last week. (it could be due to my flare up making me lose weight) My suggestion is that although this drug is horrible and makes you think you are losing your mind, it does help. Try and breath through the mood swings and remember it's not you. Ask your doctor for a tranquilizer if you have too. (The first time I was on prednisone, my dr. prescribed Xanax because I was so bad. It helped a lot) As for the weight gain, it's hard, and I'm trying to snack on carrot sticks and fruits instead of a whole bag of cookies. One good side effect I have noticed is that my complexion if the clearest it's every been. It's really incredible to be honest. Please know you aren't alone, and although you might not look like how you used to, your loved ones (hopefully) understand that this is a side effect and see you for how you've always been. It sounds sappy but sometimes we need to be reminded of that. I know I do. Good luck to you.

hello, im 25 and was diagnosed with lupus nephritis 4 years ago, among other meds i was taking 60mg of pred for about 8 months with chemo for my damaged kidneys. in three years my dose went up and down between 60mg and 15mg. the side effects i had were at first extreme water retention, my skin was like play doe, swollen vulva, swollen leaky breasts, hamster cheeks, extra chin, i had extreme hunger cravings , wanted to eat every thing in sight but my husband helped me to maintain a proper diet and i did not gain any weight except for my face and breasts and water retention for around 5 months after diagnosis. i also had all the other effects like racing heart, chest pain , breathlessness, tiredness, excitement, bad mood swings. now after 5 years i have CAREFULLY weaned MYSELF down to 5mgs a days the moon face has gone down but i have the fatty deposit at the top of my back at my neck that happens with long term use, but only i can really notice it, i get nose bleeds cause skin is thin up my nose, i use glycolic moisturiser and have glycolic peels on my face to help with skin renewal keeping ageing at bay and also have factor 50 sunscreen on prescription, take zinc for my hair loss (prescription 220mgs) has helped a lot with hair loss, use pure glycerin on my body to keep the skin soft and less delicate( glycerin can be quite gloopy and stickes on the skin for a good hour before soaking in but does wonders and is in most mosturising creams, use mouth wash for gum desies to keep the bleeding at bay and keep the teeth strong, i buy probiotic yogurt dring and pills for digestive system to get rid of the gas bloating and constipation/diarrhea, take meds to prevent bone problems, drink a pint of full fat milk with some nesquick mixed in every day, i get bad headaches after eating sweet things sometimes that can last all day, i just live with them. don't take pain killers, they just go after ive slept
im constantly finding new ways to cope with the preds, and am now 3 and half months pregnant with my first baby, doc told me 4 days ago that he wants to start putting up my steroids to protect baby and me, so im panicking a bit about the moon man coming back, and hair loss has started again big time also cause of pregnancy. once ive had the baby im going to start back on my routine. perdnisolone is a nasty drug but also a life line for many people who cant get off it and need if for the foreseeable future until something can take its place, so im jus trying to stay 1 step ahead of the drug, the only thing i struggle with is exercise , starting to loose my memory more often, and eye sight is playing up, keep going cross eyed!!! gonna try that mangasteen stuff, worth a shot...
thanks for reading, sorry bout spelling.
love l.

Interesting earlier post about hearing pulse in ear.
I heard my blood squirting through my veins in/around my ear yesterday.
Didn't start prednisone until today. Figure that one out?

Hi All,

I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be less than 215) and I was barely mobile, huge amounts of weight loss, alopecia, Raynaud's, etc. That was 11 years ago and I am now almost 100% better. Prednisone saved my life, but the side-effects were TERRIBLE! Especially for a girl going through puberty. Kids at school don't understand you're sick, and they can be extremely cruel. Luckily for me a large number of my family members are in the medical profession all over the world and my parents were able to pool knowledge to find the best treatment for me without all the horrible side effects. An uncle in Germany suggested I take a Prednisone alternative widely available in Europe called Diflazacort. This medicine is not available in the states apparently because the FDA thought it was exactly like Prednisone so was unnecessary. I'm sure this is some pharmaceutical company lobbying to preserve Prednisone's monopoly on inflammatory diseases, but regardless it makes finding Diflazacort difficult for Americans. This is a HUGE shame since this medicine gave me ALL of the benefits of Prednisone with NONE of the side effects. My mood swings, water retention, increased appetite, hazy brain, thinning skin, etc etc etc ALL stopped with Diflazacort. This wasn't only true for me either. A family friend had been diagnosed with Crohn's at the time and he was put on Diflazacort from the beginning of his treatment after seeing how I reacted to it and NEVER had any of the negative side effects I had to deal with. Really this drug was like a miracle for me. Prednisone prevented my sure death, but Diflazacort gave me my life back in its entirety. I've now been off of any steroid for 7 years and my muscles are fully back to normal. Some of the fat deposits Predinose caused still linger, but to most people's eyes I'm totally back to normal. I wish I could find everyone having problems with Prednisone side-effects and tell them about Diflazacort. Even though it isn't available in the states (although I heard recently they are trying to get it approved again since a number of studies showed Diflazacort is much more effective treating Crohn's than Prednisone is) you can get it on the internet or if you have doctor friends abroad as I did. I'm always wary of buying drugs over the internet since there's no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!

Hi All,

I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be s no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!

Hi everyone,

i need to tell you about what just happened to me, because it seems most people are definitely not informed of all the possible side effects of prednisone - not only just relating to the dose of prednisone you take but also for how long.

I have been using prednisone for almost 14 years now, the doctors all tell me i'm unlikely to ever get off prednisone now because i've been on it too long. I know all about it's usual side effects (water retention, mood swings, thinning of all tissues including blood, acne, anemia, etc etc).

One side effect i was not advised of, not even in any educational material about prednisone either, was that long-term dependence can lead to Acute Adrenal Crisis. Which is deadly if not diagnosed and treated promptly. Thus i nearly died two weeks ago. I became rapidly ill with vague symptoms that i now know are symptoms of acute adrenal crisis. *THE ONLY REASON THE ACUTE ADRENAL CRISIS OCCURRED WAS BECAUSE OF LONG-TERM USE OF PREDNISONE*. Not many doctors will warn patients in advance of this. It is however, very very important that people are aware that long-term use of prednisone needs to be very carefully weighed with the benefits of using prednisone (i was started on prednisone in 1995 to treat severe Crohn's Disease).

Acute adrenal crisis can happen over weeks, months or years - in other words, it can come on so slowly that by the time you know there's something wrong you're already very very ill and in great danger.

I am very glad to have found this website and i hope you will all refer anyone who has any experience with prednisone to this site - education and knowledge is power - the power to stay alive.

(by the way, the treatment for acute adrenal crisis is to load up on prednisone - seems i'll probably never be free of this drug unless i can get my adrenal glands to begin working again (as prednisone "takes over" for the adrenal glands and they effectively go to sleep, and this is especially true for long-term use)).

My sympathies to everyone who has to go through the many nasty experiences with prednisone, especially the young children (I had to start it when i was 16). It really does mess with your body and mind, and in my case, became lethal.

Please pass on all your information relating to use of prednisone to everyone you can - it really is that important and seems to be the only way to avoid most of the disasters related to prednisone use.

take care everyone,
Linda
(Australia)

MY FATHER WAS DIAGNOSED WITH TEMPORAL ARTHRITIS. HE HAS BEEN ON PREDNISONE FOR ABOUT 5 MONTHS NOW, STARTING FROM 80MG/DAY. HE HAS TAPERED DOWN TO 40 MG/DAY,,BUT TH SIDE EFFECTS ARE STARTING TO BECOME UNBEARABLE.
WATER RETENTION,,SWELLING, MUSCLE PAIN,,WEAKNESS.
HE IS 80 YEARS OLD,,AND IT IS REALLY TAKING A TOLL ON HIM. IF ANYONE CAN GIVE ME ANY HELP OR INFO TO COUNTER SOME OF THE SIDE EFFECTS(MUSCLE PAIN AND WEAKNESS MOST IMPORTANT) IT WOULD BE GREATLY APPRECIATED.
THANK YOU.

I was prescribed prednisone for an allergic response to crab. I had been given it before for out of control asthmatic bronchitis and had experienced the usual, muscle pain, strange metallic taste in mouth, water retention, insomnia and elevated BP. But after the crab allergy I was given it IV all at once. The next morning my fingers were all tingly and that pins and needles thing began to travel up my arm, also I was anxious, really anxious and I felt like my eyes weren't focusing right. I took some benadryl and felt a bit better. For the next six weeks I was in hell. I felt absolutely insane. I had panic disorder and only felt OK at home, so I avoided going out at all costs. A visit to my doctor yielded a diagnosis of steroid reaction and prescriptions for zyrtec and klonopin. At 7 weeks out, one morning, I was just fine again, no panic BP normal.

Undaunted, I took 20 mgs one day a few months later, had to drive 12 hours on inflamed back and thought the anti-inflammatory action would be worth it. 7 more weeks of insanity resulted. Never again. I now know what crazy feels like.

My mother was put on Prednisone 3 weeks ago because of severe muscle pain (15 mg at first and increased to 60 mg). After she starting taking it she began to have weakness in her muscles/joints and was unable to walk by the end of the week. She also had severe water retention and could not catch her breath. Most of all she was very weak all the time and could not seem to sleep at all. She wound up in the hospital and was classified with a type of Congestive Heart Failure due to the excessive dosage given by a pain doctor. She had to be admitted to a Rehabilitation Center where they have now cut her down to 10 mg a day and she is trying to take Physical Therapy to walk again. She is fighting with depression and overwhelming feelings of anxiety. She still cannot sleep and wonders if she will ever by back to normal again. Just a month ago she was living a normal life and because of the pain, was given this medication. I wonder if the benefits outweigh the horrible side effects she has experienced. After reading some of the responses above I see others are having similar side effects.
Any encouragement from someone with a positive long term outcome would be beneficial at this time to her. She feels very helpless in her situation.

I agree, for me this is a horrible drug! This is the 2nd time my allergist prescribed it to me (last time was this past summer and I had severe panic attacks and thought I was losing my mind) this resulted in me returning back to my GP and him putting me back on Paxil (which I had been off of for a year). I was extremely reluctant to use this again but thought i might be able to manage it this time (with the help of Paxil).

My allergist prescribed Prednisone to me 2 weeks ago (5mg 3x's day for 3 days then, 2 2x's day then 1 for 5 days) I made up until the last 3 pills. I had severe brain fog and felt like I was floating through space. I couldn't even remember driving to work and parking my car! Extremely fatigued (I have diabetes (which is under control, but I had to keep checking my bg because I thought my sugar was dropping to low). Now, within the last week of taking the Prednisone I have experienced aching in my kidneys and I think I have a kidney infection.

Can Prednisone do this to you??

I am calling the doctor tomorrow. Today is the first day without Prednisone and I feel like I am totally out of it - really spaced out, dizzy, panicky and a bit nausea.

How long does it take for you to get Prednisone out of your system?

Survivors Of Prednisone
Type: Common Interest - Health & Wellness
Description: Many of those with auto-immune diseases such as Crohn's Disease are forced to go on a prescribed steroid known as Prednisone. The effects of Prednisone are terrible. Prednisone creates water retention (puffiness) in your face and torso. It causes severe mood swings. It also causes your hair to fall out. And that is just going on the Prednisone. Once you get off the Prednisone, you then have to deal with the adrenal insufficiency as Prednisone can shut down your adrenal glands.

There seems to be little support for people who have been on Prednisone. They seem to be left alone to deal with the side effects and the confusion and fear that it causes.

This is what this group aims to do:
***
Provide awareness of how Prednisone can and has affected lives.

So if you are feeling down or suffering from crazy mood swings or can't handle looking in the mirror anymore then come and let it all out !

I was diagnosed with Crohn's disease in July. I had my colonoscopy/endoscopy the day before 4th of July. Got sick with what I thought was the flu on June 26th. That's when I first landed in the hospital (dehydrated & sick). After the diagnosis I was first put on Entocort and Pentasa (Pentasa is supposed to be a remission drug - keep you from having flare-ups). Entocort didn't work so they switched me to Prednisone. I've been on Prednisone for about 6 months now. Going from 20 mg to 40 mg and then I'm finally weaned down to 5 mg. I get to go completely off of it Jan. 13th. Scared of what other side effects might occur from coming off the drug. While on it I've had emotional problems, acne(never had a problem with it before), moon face, gained 30 pounds, joint pain (I was in therapy for as long as insurance covered. - I recommend water therapy, it helps for some people as it did me), trouble sleeping (haven't slept a full night since I got sick), certain days I'm really really thirsty, I've had sort of what I'd call restless leg (I had this before I was on this medicine but it has gotten significantly worse - mostly at night or when lying down), and dry skin.I have to say though that the WORST side effect is the FOG. It's horrible. I enjoy learning and using my brain and when I'm on this I can't think, I mix up words, and it feels like my brain is covered in cobwebs.I had to drop a calc 2 class and that got me off the track I'd set with my academics. My inflammation rate is down where it's supposed to be as of the last blood test a couple weeks ago. So I guess the Prednisone and Remicade are doing what they are supposed to - but I still don't feel as if the pain (not associated with Prednisone - caused by the disease) has gone completely away even if the inflammation has gone down. And Prednisone's effects are just horrible. Some nights I feel depressed and just want to cry and cry. The past months have been trying because of several hospital stays, switching to many different doctors (gastrointernologists, nephrologist, urologist (kidney stones), primary doctor - and they think maybe I should see a rheumatologist), and Pentasa (it began shutting my kidneys down). I just hope that when I come off the Prednisone the side effects will fade (hopefully quickly but lets be realistic - ill just be happy if they go away sometime in the next few months) and I won't flare up again. Anyone know the best way to get rid of the weight? I'm already drinking lots of water and I go walking and do exercises everyday.

QUESTION: When tapering Prednisone does anyone have a place(s) on their stomach that are sunken in and feels dry compared to the skin around it?

Anyways, I hope that everyone overcomes their difficulties, whatever they might be or concern. It's hard to have a life when you are constantly fighting your own body to stay healthy.There are plenty of situations in life that are already hard enough to deal with without medical issues of your own. Best of luck to all!

I was given prednisone for the second time this year having never taken it.
1st time was for an allergic reaction to sulfa,
thought I was having a heart attack a couple of hours after it kicked in.
(I am 28)
Lost so much strength, used to go out & do 10-15 chin-ups, couldn't get to 1.
Grouchy, weepy.
That was in August.
I November (1 week before thanksgiving) I got sick with upper respiratory, same cold as rest of my family, but it knocked me out. Doctor figured it was cause of the 5-8 cigarettes i smoked at the time,
prescribed antibiotic.
Flash to 2 weeks before Christmas:
Laying on couch, unable to breath, went to doc, given antibiotic, inhaler, and Prednisone:
2 pills 2x's a day for 1st three days, then 2 pills 1x a day next three days.
I think they where 20 mg?
I was in very bad shape,
But NOW
I had tried to give up those last few cigarettes I had held on to, since I had gotten so sick.
I had insomnia, nausia, insatiable appetite, sweating, fuzzy upper lip ( i am female)
gained 15 pounds, depression, couldn't even shower unless I dragged myself through it, quit quitting smoking to try to alleviate the depression, but this is unlike anything I have ever felt.
Oh, and the reason I am up so late,
my right thigh feels like it is dying from the inside out.
It started the day after starting the meds, that was December 21st. It is now January 3, and it won't stop. I am so worn out from it.
I can't sleep.
It's like a cramp that never ever ends, but it's down in the bone.
My 3 yr old daughter put her weight against it and I screamed.
It seems like it is walnut sized, with pain radiating out from it.
I thought I might have a blood clot, my husband brought me Aspirin tonight in bed, and now I just cannot sleep,
it doesn't just hurt, it is hurting to distraction.
I feel out of my mind,
and so old.
My stomach had been solid abs a few months ago, I worked so hard on them, now, I do not have the strength to lift a jug of milk, and my tummy looks more like pizza dough.
I am 5'6" and went from 118 lbs to 135, right now back down to 127 as I cannot eat even though I am starving, I just can't.
But I am really scared about this leg pain.
I swear there is something in there, and at night I fear it coming loose in my sleep and killing me. Mind you, I am not sitting here imagining it, i am feeling this pain in what little sleep I am getting, and the dreams start.
I was on it a short time, but it was 2 times this year, within 6 months, do you guys think it is the reason?
any thing you think would help. Thanks

I was just wondering...I've been weened off Prednisone the last month or so and today is my last pill. YEAH!!!!!!!!!!!!!!!!! AMEN!!!!!!!!!!!!!!!!!!!!!.
However, I've noticed that my joints hurt and my feet oh the pain. Is this normal. I feel like my muscles are weak. walking up a flight of stairs is painful. Anyone know how long this will last or if this is something I will have to live with.

I was prescribed 42 pills (20 days) of 10 mg Prednisone which I am to take beginning with 4 pills for four days and steadily decreasing every four days down to four 1/2 pill the last four days. I took my first dose yesterday and was told to drink lots of water. I do not wish to gain weight nor have a moon face. My doctor does not feel this will affect me in that way, but may have water retention (swelling). I am 73, and this regiment of Prednisone was prescribed to decrease inflammation due to a possible siatic nerve problem, which is causing extreme pain in my left leg. The pain is excruciating when I get up in the morning but eases down by mid morning with some pain all day and some nights if I move just the wrong way.Does anyone have a suggestion for the best foods to eat and what to avoid? I read that grapefruit juice may be beneficial.

I am a 34 year old male. I have been on 80mg of Prednisone 7 days a week for 2 months now. I will be getting my dosage lowered to 60mg tomorrow but am having a difficult time dealing with the Moon face, eye bags, acne, and sleepless nights. I go to the gym 4 times a week and am in shape other than this freak fake head it looks like I have now. Has anyone been able to find a way to make the effects not so noticable..as in diurex or diet pills. I would like to try anything but want to be safe at the same time. Thanks for any help and god bless. David

I've took a very high dosage of prednisone for 6 years, from the age of ten years old. 17 years later, i still have an extreme moon face. The only thing that has ever helped me was a facial exerciser (a microcurrent devise), but those results can be hard an expensive to maintain. As anyone else ever had a moon face that wouldnt go away even after stopping their prednisone usage after a long period of time? Does anyone have any advice for me, on how i can finally get rid of this horrible extreme moonface? my face and all my facial features are swollen, including my eyelids, this has been goin on for years. I also have suffered for years from severe chronic diarrhea from an illeostomy reversal. Please help me.

I am a 19-year-old female pre-med student who has been taking this nasty drug for exacly 1 year now.... The amount I am on continues to change, for my disease keeps returning and leaving remission. I finally get down to 10mg from 40mg, and have to go back up when symptoms return!!! This is SO discouraging. The worst part is, no one understands the physical and emotional agony this drug brings on. I'm 19 and feel like I'm 90. My body aches, my weight is constantly fluctuating, I bruise from simply being poked (being a clumsy person, I look like I am beat!!), my bones feel as if they are about to break, and I am SEVERELY despressed. Being in college and taking rigorous classes, this is just too much for me to handle anymore... My 5-year relationship with the love of my life/best friend is falling apart because of my horrible mood swings.. don't blame him for leaving. I feel as if this drug has ruined my life more than the disease itself...Does ANYONE know if one's body and mind returns to "normal" after FINALLY being off this drug??? I pray to God the answer is yes... I would appreciate someone's reply and/or insight, because my Dr. fails to tell me about ANY side effects until I mention something. PLEASE REPLY!!!

If ever you are prescribed PREDNISONE, please research your dosege, your condition,and your prescribing MD......wish I had.

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 am a 59 yo Male diagnosed with MG Myasthenia Gravis). MG is an autoimmune disease affecting the muscles. At it's worst I couldn't keep my eyes open, my speech was constantly slurred, I had double vision, and I had a hard time walking because my hip muscle sometimes would give out. I was on 60 mg of prednisone/day for 4 months and am on the "weaning off" cycle (decreasing the every other day dosage by -10mg at 3 week intervals then by -10 on the other day when the cycle gets to 60mg/0mg). The side effects are as previously mentioned: The good: My arms are like steel! My MG symptoms are pretty much gone. The bad: My Blood Sugar is so eratic and I have to take diabetes drugs to combat that. I am taking fosimax to combat osteoporosis (just in case as my Dr. says). My feet have swollen up really bad, my hands are swollen, my legs weep from all the edima (water retention), and I have a voratious appetite! The Ugly: My face looks like an Orangutan, My weight sored at least 50 lbs, I am moody as hell but the longer that I am on this drug the more tolerable it seems (by other people's obversations). I am having a hard time walking. I had to have a BiPAP machine so I could sleep at night. My memory is erratic and I hate that part.

Hope this helps someone.

I have a kidney disease - minimal change disease - which was diagnosed in 2000. Started out on 60 mg of prednisone every day, got close to completely tapering off and the disease symptoms returned. Increased the dosage, tapered again, and finally was off the medication about 10 months later. Had all the same symptoms that everyone has shared. It was horrible. Thankfully I went into remission for 5 years. In September 2005, the disease reared its ugly head again. I started taking 120 mg of prednisone every other day for one month, then 100 mg for one month, then 60 mg for a month. Now I'm taking 40 mg for a month and the taper will hopefully continue. I still have some side effects, gained 15 lbs., moon face, a little difficulty sleeping, water retention in my hands and legs but it seems like it's manageable this time around. Maybe taking the prednisone every other day is the difference.

I was diagnosed with Crohn's Disease over thirty-one years ago. I have taken Predisone many times over the period of my illness. My Crohn's Disease has been very aggressive and I have lost all but 250 cm of my bowel. Prednisone has been the only drug that has been able to help but at great cost to me. I am now disabled from the disease and the side effects of the drug. The most devestating side effect is the weight gain. I am now 80lbs heavier than when I was diagnosed. The moon face is very difficult to deal with. Everyone says they know it's from the meds but that doesn't help when I look in the mirror. The fat deposits in my abdomen are very embrassing to me as well.
The sweats, blurred vision, nervousness, hyperactivity, exhaustion, acne, slepplessness, shaking, joint pain (so bad I can hardly walk when I am on the meds), mood swings, depression, swelling (water retention so bad I can hardly bend my legs), the muscle wasting in my thighs, the conective tissue damage making it hard to heal from surgery, difficulty concentrating, bone weakness ( I break ribs very easily) and so many more...all this is too much to pay to control a disease.
They really need to find better drugs now. If you can try something else instead of Prenisone I strongly recomend that you do. It should always be a last resort.

I was diagnosed with a quirky little disease called "Minimal Change Disease" - my kidneys decided that my body did not need any protein, and without any protein in my system, I gained 55 pounds of water weight, along with few other nasty side effects like having cholesterol in the 800's and blood clots in my lungs. At this point, I have been on the drug for a little over three months - 70 mgs for the first 6 weeks, the point at which the disease went into remission. The last 6 weeks, I've been tapering off - and will be off Prednisone by the end of this week. Ironicly, I had been taking a drug that causes water retention to fight a disease that causes water retension. Fortunately, after losing the 50 pound of water weight in less than three days, I didn't see any of the massive weight gain some have reported. I have gained about 8 pounds in the past 6 weeks that I've been tapering off the drug. The only other side effect I had was this euphoric, ethereal feeling I would have about mid-morning where my concentration was that of a 2 year old (I have experience in that because I have a 2 year old), and by mid-afternoon, I would race around the office in a flurry of activity - and get absolutely nothing accomplished. It was a weird sensation - kind of fun, but disconcerting - of being giddy as though I was drunk. I had to really sit down at my desk and force myself to behave and do my work. I also had quite a few nights in which I would wake up in the wee hours of the morning and to force myself to read the dictionary just to fall back asleep. Sure the drug has some nasty side-effects, and can really mess with your head, but so can being a 200 pound albino blueberry. And there were no Oompa Loompas around to take me down to the juicer. As to the side effects, I realized that the euphoria wasn't permanent, and I had to have a bit of fun with it when I could, and as to the weight gain, five pounds is nothing - though, there is much in my closet right now that I can't wear.

hi everyone!
trailblazen, it's interesting you asked angela about shingles. i had shingles and the urgent care doctor put me on prednisone for them along with some valtrex. then when i saw the opthamologist, he said i NEVER should have been put on prednisone in the first place! but i had to keep taking it until my prescription was used up. so basically i had all this prednisone junk for nothing.

As far as the Diurex... I wasn't sure it was doing a lot of good although my moon face has decreased. I haven't taken the Diurex for a few days and my ankles were really swollen! So i guess it did help a lot with water retention...

sanndiego

Hi everyone and Angela...
Diurex (that kindly Gypsi recommended) is a diuretic and helps combat water retention. I found it by the Midol in the feminine products section of the drugstore. I think they offered 2 different kinds... one for menstrual cramps and the other just regular. I got the regular. I still have some moon face but it is decreasing. Woo-hoooo! I only tried it after I was off prednisone so don't know if it interacts. I definitely had insomnia while on prednisone. When I did finally fall asleep, it wasn't for long... maybe 20 minutes or an hour at a time. I would wake up and be sweating like crazy on my chest... and for some reason I always seemed to wake up at 4am like clockwork!

Good luck kicking the Dr. Pepper habit. I was a Diet Coke addict... it was to me what coffee is to other people. Couldn't make it through the day without having one first thing in the morning... and then many more throughout the day. It will get easier. Besides the sugar, don't sodas have a lot of salt, too?

I am battling weight gain, too and I was only on the darn stuff for 3 weeks. I have been eating like a garbage disposal... all kinds of junk I would never even touch before. Today is my day to get back on track and stay there!

I am certainly no expert on any of this... just passing along my experiences. This is a wonderful website. Gypsi has helped me so much.

Best wishes!
sanndiego

To Gypsi--
Thank you so much for your advice about Diurex helping with moon face!!! I stopped taking prednisone on Sept. 9th. I have to go on business trips and meet a lot of new people at work... and I was dreading it, feeling & looking the way I do. I am terminally on a diet so constantly watch carbs/fats/calories. Will be even more strict now!

One question... I thought I read on here that we should drink a LOT of water to combat side effects? But I also know water retention is a problem. So I am confused what to do about water intake? Again, MANY THANKS. Sanndiego

hello again gypsi!
I also had alot of water retention. I was very swollen and I still had solid weight on me. I cut out all sugar and had very low carbs in my diet. I got more physically active, on the days I felt good. For me, caffeine is a great diuretic. It has helped me alot with the water retention and being swollen. I really can't explain about how fast it has been. I just happen to have had a bad experience with pred. and now that I'm off of it I seem to lose weight faster than I ever have in my whole life. After I lose the rest, and I feel this will certainly takes its good old time, I'll have to watch the sugar and carbs more. I have days when I get on the scales and see 2 or 3 lbs. come back on and then in a day two it's gone again. Weird. Don't panic gypsi. I have three sizes of clothes in my closets and sometimes none of them fit! Other times I can go to a smaller size. It's going to be a while before I feel normal again. Who know, maybe never ha ha
Today has been a better day for my blood pressure. I know this problem has come from being on pred. so long and being told to quit cold turkey. It's been three months now off of pred. U r in my prayers gypsi. I know how u feel. I promise it will get better with the weight. I've still got a year or so of pred. withdrawal. I'm tough. We'll make it.... nice talking to ya keep in touch trailblazen....................

hey gypsi, I, for one, am sorry for not responding to the weight gain issue. I know very well about the weight gain problem. After stopping pred. on June 10th, I've lost so far, 32 lbs. I've got about 25 to go. I'm glad that the problem for u was water retention. I'm still struggling with blood pressure problems but today is a good since last Friday when this all started. I still have alot of the withdrawal effects but have noticed I'm calming down alot which may help my blood pressure. Still don't sleep much but able to tolerate it better. For those who r going thru this, U R NOT ALONE. I wish that the doctors would do indepth research on this demon drug before putting us on it. I pray for all of u. If u have family members or a spouse that doesn't understand, print out some of these posts and show them. I've been blessed that my family and friends know and understand. My husband works all day so I get alot of frustration out during my time alone. If u can't sleep try benadryl or something otc. It will take a while for me to feel "normal" again. Thanx for listening

Update on Weight-loss....

I left a post a few days ago about my struggle w/losing weight. I was so frustrated about this and since nobody wrote anything on this matter, I went to see my Doctor. She said that after Prednisone some people develop Diabetes and a sign of this disease is retention of liquids in a cellular level. She prescribed me water pills and in fact I lost 2 lbs in 2 days, my belly and arms are noticeably deflating and I'm glad to now it was water retention...however, it remains to be seen if I have diabetes 'til next week when the results come back. Gosh, it seems that the struggle never ends! I was worried about weight and now I have to worry about something even worse, that may change my life for the rest of my days!! The irony is that I was one of the healthiest living things on this planet and look what this crap of medicine has done, is doing and will probably will do to me in the future!

God bless everyone,
Gypsi

Well for you thinking it's all in the mind, 10mg is NOTHING! Try being on 60 for 4 Months... yeah, then you would defenitely see it's not "all in the mind". Ignorance isn't always bliss, now is it? A 25lb weight gain, emotional changes, water retention, a moon face, those are just to name a few.

Hi all,

I'm glad I stumbled on this website, as I'm in the process of lowering my dosage of prednisone. Prednisone has caused me to have severe acne, moon face, depression, water retention, yeast infections, you name it, I've had it... I have been on Prednisone for 3 years now. I was put on it because I suffer from Rheumetoid Arthritis. I also have Pulmonary Lung Fibrosis which I got from the RA and the drug methodrexate and last year I had surgery for Kidney Cancer. Which I'm sure I got from all the drugs and stress that I was put under. So you can imagine at 38 years of age I have been the the mill and back. But, I have good news - I no longer have RA and my Fibrosis has been reversed. Why and how you must be asking? I just returned back from India. I spent 4 weeks at a Ayurvedic Health Retreat, they were able to treat my RA and lung Fibrosis and my Doctor in the US is ready to take me off 2 of my drugs. Enbrel and sulfasalazine. He's now also ready to tapper me off my Prednisone. So if anyone is interested in alternative medicine and wants to learn about Ayurvedic Treatment, please feel free to e-mail me at ****** Good luck all, you don't have to settle with drugs that damage your organs anymore....

Was on 20mg for 7 days, and then supposed to be on 10mg for 7 days to decrease inflammation in my sinuses. I am quitting today day 12. Prior to going on Prednisone, I had just lost 10 lbs. Now I think I have gained it back, and I don't think that I was eatting alot, although I was hungry alot of the time. Hopefully this is water retention and bloating. Does anyone know how long it takes to have the weight come off after going off the drug?
What really make me mad is that I think the doctor prescribed this as a "catch-all" just in case med. I don't think it was indicated at all. My ailment was sudden loss of taste and smell following a flu-like virus. The reading that I have done about this, indicates to me that there is no known remedy for viral damage to the olfactory gland. Prednisone would be indicated for sinusitus or something of that nature, but for nerve damage, there will be either spontaneous regeneration.....or not. So now I can't smell or taste and I have to go on a diet besides. great. Please let me know if the weight is water retention.....given that I wasn't eatting like a pig.

been on prednisone for 16 yrs

to answer some questions
i have never heard of all of someone's hair falling out from it :) relax

mid section - shoulder.neck areas seems to add width - not water retention as much as a fatty layer build up

moon face - mood swings - weight gain - all normal

for your own body to begin making cortisone again you have to reduce dosage to 5 mg's - this is where you will see the most relapses and symptoms appearing from problems

makes one want to stay on prednisone

BUT the long term affects on your other organs etc are not worth long term use - trust me

cataracts are also common so if eye probs after extended use get your eyes checked - but if only using short term (under a yr) should be no long term probs

I just started on prednisone recently for ulcerative colitis. I'm a 20-year-old female college student. The prednisone seems to be working great for the ulcerative colitis. I've been kind of nauseous. My question is this:

I've heard that one of the side effects of prednisone is weight gain. However, I've been so nauseous that I've lost weight. The strange thing is that event though I've lost (a small amount of) weight, I *look* fatter, especially in the waist. And it's not all just oversensitive-young-woman's body obsessiveness; even my pants fit kind of tight in the waist What's going on? Is this water retention? Is there anything I can do about it?

I am a postmenopausal woman. After 4 months of 10mg Prednisone a day I started vaginal bleeding in addition to weight gain, moon face, water retention, mood swings, abnormal hair growth etc. I wonder if any other woman (post- or pre-menopausal) expierienced abnormal vaginal bleeding or spotting while on Prednisone.

I have been on prednisone taper for about five months, starting at 40 mg for six weeks, and then tapering to 30 mg for six weeks, 20 for six weeks, and I am now down to 15 mg for macrodantin induced pulmonary fibrosis. I have had weight gain, bloating moon face, muscle cramping, hair loss, and mood swings. I will be glad to get off this drug, although it has helped me a lot. I also have hypersensitivity pneumonitis, and it does not help much for that. I will just have to move out of the area because I am very allergic to something and cannot find out what it is. The water retention and the moof face are the hardest to take. I also have had back pain since being on this, and I don't know for sure this is a side effect or not. I have heard of others who have had this and when they stopped the prednisone, their back pain went away. I will let you know when I am off in April.

I have severe Eczema and allergys, taking prednisone was exactly the releaf I needed, For two months I was free of any ailments. Soon after stopping use all my problems returned ten-fold! I felt like some cruel joke had been played on me, Allowing me to feel what its like to feel normal...then taking it away. The only side affect I expierienced was water retention and very dry mouth, is there a safe dose for long term use? or is any dose harmfull?