PredniSONE and flare

I was on Prednisone a couple years ago and it gave me severe insomnia, I ended up tapering as quickly as possible, I was so wired I couldn't function. My son was started on it today, and I was a bit worried about letting him take it, he has asthma and is in the middle of a flare up that started 5 days ago and isn't getting much better. So we started the Prednisone tonight, and within an hour he almost had an accident with diarrhea which is not like him at all, he is a 30 minute on the toilet taking his time kind of boy. Now I'm worried it's going to be a long night, and worry that tomorrow nights dose will be worse?

I'm 28 years old woman...
I was prescribed Ulcerative Colitis 5 years ago. I have been on prednisone 4 or 5 times since then for periods of three to four months experiencing the typical symptoms and side effects. I had a new flare up and 2 weeks ago my doctor prescribe prednisone again, but this time he told me to take 40 mg a day for 7 days and then stop it, TOTALLY.
He said that it was safe and even better than the old strategy of reducing the dosage slowly over a 2-3 months period, so I accepted.
I've never felt so bad in my life, not even when I was a moody teenager.
These days I have felt so miserable, so depressed...I am an optimistic person, really positive and easygoing but these last three days I have changed completely: anguish, anxiety, panic, alienation, it's like living in someonelse's body,...
Yesterday morning I couldn't go to work, I just sat for breakfast and start crying in front of my boyfriend in a desperate way...I spent two hours crying because I couldn't establish a connection between my body and me, I felt that I was trapped in a strange body...
The funny thing is that my doctor doesn't really acknowledge these sensations, he thinks that the emotional distress is due to sth else and not prednisone!
Apart from that, my bones, muscles and joints hurt terribly...

If you feel depressed, prepare herbal tea. It cleans your body and your sprit. Good options are mint and lemon zest, orange zest and chamomile

Male 28. Was diagnosed a couple of months ago with Ulcerative Colitis and was prescribed Prednisone. A large dose to start with then tampered off for 4 weeks. The first week I felt great, better than great, fantastic. The only downside was difficulty sleeping. The following 3 weeks, without any exaggeration have been among the worst I have ever experienced. I think the lack of sleep finally caught up with me, so I was constantly tired and generically felt depressed, also knee ache, eye pain, inability to think clearly (quite a problem when you are an Engineer), lacked energy or strength – and the Acne. Never before have I had Acne like this, and I used to suffer quite bad during my teens. Its just so aggressive, every few hours there seems to be new ones appearing. It seems to occur when ever I step down the dose. I think having this bad skin has really added to my depression over the last few weeks, it has been especially difficult considering I have been in the process of starting a new job. To top all of that my UC seems to be worst than ever! I’m worried that when I go back to see the Doctor next week he is going to put me on some equally-annoying medication or maybe another course of Prednisone if I’m lucky.

Does anyone know of some natural alternatives that are good for UC, very reluctant to put anymore man-made chemicals into my body.

I'm 15 years old and i've been taking prednisone for a few months, and from what i've read i'm on a really high dose. i was diagnosed with rheumatoid arthritis and another autoimmune disorder concerning my muscles at the same time. my doctor told me prednisone was my only choice; it was either that or i would lose the ability to walk. he told me there'd be side effects, but i had no idea it'd turn out like this or i would have fought harder for another course of action. i started out on 30mg twice a day, and since then was weaned down to 20mg twice a day and now i'm down to 30mg once a day. i've been looking up a bunch of information trying to figure out if there's a way to lessen the side effects or any hope at all that they will get better. apparently there isn't much. after reading a bunch of these stories i gotta say i'm not feeling great about this. i totally understand everything everyone is going through. i'm sure you can imagine what it's like being smack in the middle of high school with a huge puffy face, acne so bad on my face, chest, back, neck, and shoulders that wearing a bra could put me in tears, and mood swings so bad i've lost friends over it. everyone knows how brutal high school can be, where appearance and attitude are everything. and i try to tell my doctor about it and he literally looks at me like i'm a whiny teenager and says "you're just going to have to deal with it." and people like my mom and my closest friends don't get it either. nobody understands how beyond frustrating it is. i'll get into the worst moods and not have a reason for it, but i'll stay angry for hours or burst into tears over someone looking at me the wrong way. it'll get to the point where i have to isolate myself from other people because the abrubt mood changes get so bad. as bad as i hate to admit it, the pain from the arthritis is gone now and supposedly my muscles are doing better too. developing arthritis caused me to have to quit cheerleading, something i've loved doing for 6 years, because the pain got to the point where i couldn't get my arms above my head or bend my knees. however, i'd almost rather deal with the horrible joint pain than deal with the side effects of prednisone. if your doctor gives you and alternative method, take it. i've always been confident in the way i look and really outgoing and happy and now i sometimes catch myself thinking about suicide. that's shocking to me because i've got so much going for me, but this medicine makes me miserable. and when i complain about it, anyone i'm talking to just looks at me like i'm being a cry baby. my mom does too, she'll say things like "you just have to do this. i know it's not what you want but to be honest i'm sick of hearing you bitch about it."
i feel a little better knowing other people feel the same way - like nobody gets whats going on with them. the prednisone does give me days of really great euphoria and days when i feel like i could run a marathon, but waking up in the morning to the acne and huge face puts me to tears every day. i have to pee all the time, usually getting up at 2 or 3 am. i don't sleep well anymore and i do sweat all the time. which also sucks being a teenage girl. i'm always hungry, and when i eat i never feel full so i don't know when to stop. my neck and face have put on so much weight that when people see me in the halls or out and about they ask me what happened. mind you these are people i don't talk to, just ones i know from classes or whatever. and it's pretty bad when teenage boys i've never really talked to ask what happened to your face. kind of a blow to the ego, or whatever is left of it at this point.
i'd like to know if, as my dosage gets lowered, the side effects will diminish and when i'm off the prednisone completely if they will disappear altogether. any help there?
or if there is any way to help the acne or puffy face

my doctor just put me on something called methotrexate or something like that to help wean me off the prednisone, and does anyone know what those side effects will do? or if they'll affect the prednisone side effects?
i'm constantly obsessing over gaining weight and what my skin looks like and what i eat and how heavy my face feels and the occasional pressure in my eyes to the point where i just want to be put out of my misery.
and after reading other people's stories i really don't understand why this drug is still given out as freely as it is. but maybe all doctors are like mine, they just don't get it.
best of luck to anyone who's on prednisone, my heart goes out to you; i'm right there with you
sorry this became like a book it wasn't meant to be this long

I have been on prednisone since I was two years old (I am now sixteen) because I have Autoimmune Hepatitis IIa. I would like to point out that there is still a life worth living being on prednisone, maybe I say this because I do not know life without it, but at least we're alive! Last year I had a flare up of the AIH and had to 6x my dose of prednisone. It sent me into a spiraling depression of constant sleep, crying, hopelessness etc....but I made it through. Just PLEASE keep hope that things would get better, because I know what it's like being on the dreaded drug better than most.

I was recently diagnosed with ulcerative colitis and was hospitalized in March 2008 for pancreatitis - a reaction I had to Asacol. A week later I was discharged then went back to the hospital a day later for a severe flare-up. There, they started me on antibiotics and prednisone through an IV. When I left the hospital I started taking 40mg. The initial side affects were severe sweaty palms, racing heartbeat and dizziness. Within 2 weeks I started experiencing insomnia, acne, hair loss, extreme mood swings, depression, anxiety, and was OCD on top of the sweating to where the skin on my palms was starting to peel. It suddenly got out of control fast. I became suicidal - nearly attempted suicide twice. I was paranoid, had severe lack of concentration to the point that I felt cognitively delayed, couldn't do anything on my own, lacked emotion, and felt that I WAS crazy. Luckily my family was very supportive. During the second suicidal attempt they begged me to stay at a psychiatric hospital. I did and was there for about three days. A week later I was finally completely tapered off prednisone. Within 2 weeks I was completely normal and back to myself. My three months of hell was finally over. I tell myself I will never take prednisone ever again but the truth is it might be the only thing down the line that can save my life. I hate this drug and I don't recommend anyone take it unless it's the last option you have.

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.

My 7 year old female Siberian Husky, Niceah is suffering with her second serious flare-up of IBD. She was taking 20 mgs. of prednisone every 12 hours for several days. We are now down to 12 mgs. daily and working towards 12mgs. every other day. She is lethargic and her body and belly have swollen frightfully to the point where it is difficult for her to lie down without grunting and sighing. She pants heavily. She drinks and eats constantly. Her nose is dry. Her tummy grumbles all day and night. I have been boiling chicken breast and mixing it with sweet potato and Enzymes & Probiotics. I am currently working with a holistic advisor concerning Niceah's diet once she has weened off the prednisone. The side effects of this drug are frightening and I am so worried that something more permanent and damaging will occur. Has anybody experienced this?? If so, I would appreciate any advise. Robin. copher370@aol.com

So far i am a 14 year old boy facing prednisone and have been on this drug over 4+ month periods at 10 mg first time and 100 second time. I have chrons's disease and it is hard to treat when it has a flare, so they have to put me on prednisone. I have experienced some of the worst side effects imaginable along with many other suffering victims of this drug, and they include: Headache, Severe Acne, Flu-Like Symptoms, High Blood Pressure, 50+ Pounds Gained, Moon face, Stomach Pains, and Much More. After i have been weened completely off i have notice these: SCARY Heart Palpitations, Out of Breathe, Feels like something is beating in my stomach, and feels like my heart drops to my stomach like pacing.

I have Autoimmune Hemolytic Anemia (AIHA), was diagnosed in Feb. 2008. Have been ill for several years and finally it came to a head in Feb. I had a blood transfusion and then in the hospital 6 days later with a hgb of 4.0. I was so toxic and my blood so screwed up I nearly died. I was given another transfusion then (total of 5 pints of packed red blood cells) and started on Prednisone. For 3 days given liquid Pred injections, starting at 1000mg, tapering down to 250mg., then on the pill form at 100mg. Sweat poured off of me dosing down. I was off work for 2 months. I am still tapering but am now at 1mg. DR. added another drug, Danazol, after getting to about 10mg because my blood started going crazy again. My side affects with Prednisone have been, Euphoria, no depression, LOTS of hyper brain activity, thoughts running a 100 miles an hour but body at slow speed.Visual problems and a feeling of being highly drugged. 2 to 3 hours of sleep each night, compulsive behaviors and a lot of pacing back and forth. Couldn't hold my concentration because my mind wandered so much. Extreme Tremors in my back, hands and head. Wanted to talk constantly, if no one was around I talked to my Chihuahua or the TV. My cheeks puffed up and became hard and had a fat pocket puffed up on left side of my neck. My dog thought I was crazy, she was tired of the lights being on at 3 or 4 in the morning. Legs looked skinny but didn't gain weight until I got to about 60mg. Gained 25 lbs total. Tapering caused bad spasms in my calves, feet and hands. Thigh muscles would get extremely weak each time I went down a dose. At 50mg I started getting sleepy and could hardly stay awake. Went back to work at 35mg and couldn't remember how to sign on to my computer. Some memory problems since I was in the hospital, couldn't remember how to spell words I knew as a young girl. Started having hip pain about 3 months into the Pred, that hasn't stopped. At 10mg feet, knees, shoulders hurt deep in the sockets, muscles below my neck knot up, may take a while to totally get off this. Read on a couple of blogs where people cut a 1mg tab into 4 pieces to taper off the Pred. because of side effects. Had thrush in the beginning and break outs of shingles. I hope to God I never have to get back on this drug again, it is so HARD on the body but it did do what it was given for, to repress my immune systems. My next step is Spleen surgery, hope this is a cure for me, am sick and tired of being sick and tired. Wouldn't advise anyone to take Pred unless it's a life or death situation. It's prescribed too liberally and people have multiple problems, worse than I have experienced. I've probably forgotten some things, but there's enough I've mentioned to give you an Idea it's not good, but if Pred is all you have then you do what you gotta do!! My puffy cheeks have went down though, now my hair has become curly but at least I have hair and my chihuahua stills loves me!!!

Started taking prednisone about 3 months ago for a serious flare-up of my Sciatica. My Sciatica was so bad that I couldn’t even stand up. After a couple days of prednisone, I was able to walk, but still had pain on my left side, from my back down to the tip of my big toe. Symptoms started getting better, but then the side effects started. Gain 40 lbs, can’t sleep, muscles are so weak it’s hard to walk, blurred vision… one day (laying on my bed) I noticed I couldn’t even see the clock on the cable box anymore. Lumps started appearing. One on my wrist and one big one on my upper arm. I cut my finger 5 days ago and it still hasn’t closed up completely yet. It even still bleeds. I know on the side of my pill bottle it says “This medicine may lower your ability to fight off infections”, but man! It sucks when you have a little cut that just won’t heal. Anyway, I’m sick of the side effects and they only seem to be getting worse. I’m stopping today! I would rather fight through the pain of my Sciatica than to deal with all these side effects. I just hope (and pray) that the side effects go away without doing (if not already) major damage.

I have Crohns and had a flare up so I'm back on 40mg of Prednisone. I've been on 40mg now for 3 weeks and I start to tapper off in another 3 weeks. Well every time I start the prednisone again I get new side effects. This time, my gum are bleeding all the time and the pain in my knees are horrible! I still get the regular side effects, ie: Mood swings, joint pain, sleeplessness, sweating, swelling of my legs and hands, wanting to eat everything under the sun, moon face and my hair falls out! I wish the drug manufactures could develop a drug that would not be so hard on our bodies. I have to struggle with the pros and cons with every flare up. Do I want the weight gain, mood swings and hair loss or do I want to look good and be very sick! I'm 37 and was 16 when I found out I had Crohns.

So far not too bad. I have a flare up of proctitis and my doctor prescribed prednisone (20 mg 3x a day). Side effects are occasionally feeling sickly, occasionally a very noticeable heartbeat, a bit more irritable and feeling rather thirsty. So not too bad, I am seeing my doctor again in 3 days time and will take it from there.

My daughter is 12 and just started taking Prednisone 5 days ago (40mg - she weighs 105lbs) .. I've been watching her salt intake - tonight she looks a little pale to me - is that a side effect? has anyone else experienced that? She has Ulcerative colitis (2 years this month) - started w/asacol, colazol, 6mp (gave her pancreatits) now is on methotrexate since Nov '07 - was put on prednisone because of a recent flare - to me none of these medications have put her into remisson - always goes 3-5 times a day - sometimes blood - sometimes not - don't know if prednisone will help - so afraid of the side effects -
Dr. said if it doesn't - Remicade will be the next option - after that surgery - only thing - my daughter has never complained of pain - except when she was on 6mp -
sorry for babbling - just so scared...

Hi All - I have been off prednisone for one week and I am not doing as well as I thought I would be at this stage. My symptoms are not flaring, which is a very good thing but I am so tired and feeling very depressed and low energy. I thought I'd feel great once I was off the evil prednisone but so far I am feeling almost as bad as when I was on it. My moon face has not started to go away, which sucks, but I guess I have to be patient. I am so tired of this situation as it feels never ending. Part of the problem is I have continued to work throughout my ordeal, and it's been very hard at times to carry on like a normal person who is not sick. I have been sick since last November (with an autoimmune disorder) and I had really hoped by this time that I'd be on my way to being better :( Prednisone saved my life but the side effects are horrendous, as are the after affects of it. Good luck to all who are taking it. I share your pain and frustration.

All that I can say is anyone taking this medication, be prepared. I am 24 years old and was diagnosed with Crohn's disease. I was in a severe flare up and was prescribe Prednisone. I looked like a balloon in the Macy's parade. Along with looking like I was 500 lbs in the face I was a woman on a rampage. I would blow up at the drop of a hat. I could not sleep, I was not the person to be around. Even after I was taken off of it, it took some serious time for me to be back to my normal self. This is an absolutely HORRIFIC drug and whomever invented it should be jailed for what it does to the people taking it.

I have had a skin rash called vasculitis; Have taken prednasone and my highest weight is 230lbs. I used to weigh 147lbs. I feel like jabba the hut!! If I don't take it I break out and feel like a lepper if I do take it I may still break out and gain more weight. It's enough to make you depressed and i have been. No one should live like this.

My husband has solumedrol IVs for 4 days-500mg every 8 hours due to a MS flare-He could not walk at all before he had the IVs. Now he is home and has used predisone to wean off the IVs. He has diabetes now with severe depression and he is in a fog a lot. I understand this is basically the only way he got through the MS flare, but now he is worse off due to the side effects. It is a shame that so many people have been hurt by this medicine that is suppose to help. My ex husband was so violent when he was on predisone for back pain that it caused us to end up divorcing because he would beat the crap out of me or become so mean, then depressed that it drove us apart after 20+ years of marriage.

Hi everyone,

I am a 25 year old female who was diagnosed with Crohn's disease one year ago. I stumbled on this website and wanted to share my experiences to let others know they are not alone and that their side effects due to Prednisone are completely normal.

In Nov of 2007, I was in the hospital for a Crohn's flare up and was put on prednisone through IV (240mg/day). After a three days I was released, but one week later, had another flare up and was back in the hospital in December of 2007. This time, I stayed for 6 days and was on 240mg/day again through IV, along with taking Flagyl and fluids for my flare up and infection.

At first, I lost about 10 lbs due to the flare up and all of the medication I was on. However, within 3 weeks time, I gained 28 lbs and was a complete mess. I looked different, felt different and was emotionally and mentally drained.

My side effects included: Severe moon face, buffalo hump, increased appetite, hair thinning and severe hair loss, night sweats where I would have to change pajamas 3-4x a night, OCD to the point where I would have to clean my entire apartment (even if it was already clean), restlessness, anxiety, no sleep and sometimes I would go days without sleeping, increased thirst and dehydration, swollen eyes and headaches, depression and mood swings, upper and lower abdomen swelling and weight gain (28 lbs in 3 weeks), suicidal thoughts, unbearable muscle and joint swelling and aching, forgetfulness and memory loss, blurred vision and dark hair growth on my face near my sideburns and underneath my chin and on the bottom portion of my face. Bottom line: it was unbearable and nobody warned me about the harsh side effects of the drug.

When I left the hospital, I was put on 60mg/day and eventually weaned off Prednisone over the course of 2 1/2 months and took my last 5mg dose in mid- February 2008.

It is now 2 months since I have been off Prednisone and as of now, I have only lost 7 lbs, but much of the moon face has gone away and I don't seem as swollen in my chest. My appetite returned to normal the day I stopped taking the drug and my mood swings subsided one week after stopping Prednisone. I still have the buffalo hump, but it stopped hurting and I am now able to sleep through the night. The fluid retention seems to have moved south towards my legs, arms, and lower abdomen. My doctors say that within about 6 months after stopping Prednisone, most of the fluid retention should go away and they recommend walking for 45-60 minutes/day to help with the fluid/weight gain.

Overall, prednisone helped to save my life and put my Crohn's into remission, but is one of the WORST drugs I have ever taken. My heart goes out to anyone who has had to take this drug and trust that you are not alone--and the side effects are real and they are harsh. I am slowly seeing that it takes time for the prednisone to leave your system and my doctors say that every day there is less and less in my body.

Stay positive, stay active & stay Healthy!!

I was on prednisone for four months. 40mg a day most of the time. i was taking it for an allergic reaction to a cosmetic tattoo that i had done. i miscarried a child while on prednisone. grew hair all over my body,which still almost two months later hasnt stopped. had trouble sleeping and chills. also have weird purple lines on my legs and severe muscle pain. Does the hair growth eventually stop?

I was on Prednisone for a year and weened myself off because of the side effects.I'm back on it now and can't wait to be off again.Not that i felt that much better off of it.They started giving it to me through my i.v. in the hospital about 2 weeks ago.I was admitted for a Crohn's Colitis flare up and dehydration.The first 3 days were ok but then i felt the Prednisone kick in.It wasn't that bad until i left the hospital and started 40 mgs by mouth.I couldnt really sleep at all.Really bad panic attacks.Crazy dreams, hearing voices.I'd wake up every 20 min. dripping with sweat.I'd panic all day and night.Now I'm being weened off and am taking 20 mgs.I'm really weak.Can hardly type this.Its hard to walk.My arms and legs feel so weird.I'm having a really hard time concentrating.I feel like I'm on drugs all the time.Really dizzy,every things funny looking.Its like a really bad panic attack that never goes away.I have 2 more days then I'm down to 10mgs.Then another 7 days then I'm off.Hopefully this will all pass and i can be normal again.I can't live like this.I don't even know if any of this is making sense.I hope all is well with everyone of you and will keep you in my prayers.Hopefully we'll all be normal again soon.God bless,Carl

Hi!
I have ulcerative Colitis. I had a bad flare up since Thanksgiving 07.I have been on Prednisone since the beginning of Dec.07. The first 3 days it was giving to me by IV every 6 hrs.I was hospitalized due to tremendous blood lost. After this my doctor put me on 60 MG a day. 6 pills of Asacol and I also was on ennama with Cortisone which totally almost killed me. The side effects were sooooooooooooo bad,let say I had them all.Right now I'm dealing with the side effects of the evil Pill " Prednisone" Moon face and this awful bloating in my upper abdomen, tiredness, no energies, heavy legs. It makes it really hard for me to get out & around.I hope my doctor will get me off this Prednisone. Not only messes it up your normal living no it also makes you look like a ugly bulldog! I hate it!

I was prescribed to take 30mg/day (Prednisone) to try to reduce the inflammation brought upon by Ulcerative Colitis. I have taken Prednisone before....up to 60mg/day, when I was first diagnosed with UC. I don't really remember all of the side effects I experienced, but I do remember my calves and feet swelling, a bit a of moon face and very little weight gain due to the UC. Does anyone have any suggestions to how/and when I should take the daily dose of Prednisone (early morning, with food...what kind of food)? Also, I would love to hear from anyone with Ulcerative Colitis and how they are coping with the disease. From their diet when in remission to during a flare-up! Thanks...

Severe hair loss/thinning. I've been on a low dose of prednisone for 11 years. My dose varies from 5/10 depending on the flare up. Before prednisoe, I had A LOT hair on my head.... thick, curly,healthy, shiny hair. I have about half the hair left on my head that I had before. It's now dry, brittle, lifeless, and damages very easy. It's hard to get any length on hair, because as it grows, it's breaks off...it's quite thin and has been ruined by prednisone.

Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)

Sue =)

i was on predisone twice within the last six months because of a flare with chrons disease. i got really sick and was put on 40mg of prednisone twice a day. it made me feel much better, but the side effects sucked.

i had extreme moodiness and overreact to everything. i found myself constantly crying over nothing and got depressed very easily. i had alot of trouble sleeping, got really bad leg cramps. my appitite was insane. im constantly hungry and just feel like i need to eat and eat. i gained 15 pounds both times i was on it. my face gets so puffy. the fat that i gained is in my stomach and a weird texture. i also gained weight in my legs and have strech marks at the top. it took me about 3 months to get back to my normal weight. and then i got sick again and am currently dealing with it all again.

i hate predisone and to anyone going on it i recomend caring ALOT about what you eat because gaining that much weight sucks. also drink alot of water.

drinking water after you go off prednisone is supposed to drain your system of it and make the side effects go away quicker.

I'm 17 years old, and I have Ulcerative Colitis. I was diagnosed at 15, and was put on Prednisone then for three months. I didn't gain much weight in my tummy that time, but my face swelled to huge proportions, and while ON the drug, my hair grew like crazy but was very dull and lifeless at the same time. The minute I stopped the drug, my hair started falling out. Within a month, I had lost 40% of my hair.

Well, I'm on it again, and this time it's worse. I started out at 40mg back in October, and am down to 20mg now, but it's just as bad as when I started. I'm VERY moody and snap at my best friends, who I am usually the calmest around. I often find myself just wanting to hit and yell at something. Before I started Pred, I weighed 138. I weighed myself yesterday... 150.2. This is very disheartening. I have a moon face, the makings of a double chin, unhealthy hair, I wake up about 5 times every night because I'm restless or I have to pee, I can't focus in school, my knees hurt, etcetera. I'm miserable.

I work out 6-7 times a week because I'm so concerned about my weight. I do 30-45 minutes of the treadmill and/or elliptical, and do all the happy little toning machines, in hopes that my tummy can be a bit more toned. But no. It's a useless blob. None of my favorite jeans or shirts fit me anymore, and this - not the drug itself, but the side effects - make me very, very unhappy.

I have ulcerative colitis and have been on and off Prednisone for 3 years. Usually about 40 milligrams and tapering. I always noticed sensitive teeth and leaky leg veins/ swelling and discolored. That was all really. Then in April this year, during a bad flare, was put on 120 milligrams (accident by Dr or Pharmacist) for two weeks then 80 mg for several weeks then 60 until I could get on Remicade and finally get off the stuff in August. I gained 30 lbs while on a strict no sugar, specific carb diet, from size 12-18, moon face, triple chin, hump on back, big stretchmarks under my arms, fallen uterus and bladder now needing surgery, lost my voice, glaucoma and cataracts, cholesterol went from 189 to 318, leg and hand cramps daily and nightly, now am experiencing intense joint pain in every joint of my body. My legs and ankles swelled up terribly and now I have to wear support hose constantly. Since getting off Prenisone in mid August til now mid October, my face and neck have been returning to normal, friends mentioned last night my face looked more normal (I was hating seeing myself in the mirror or a picture). My teeth are terribly sensitive, even room temperature wine (acid?), hot or cold.

I am 24 years old and have suffered from Irritable Bowel Disease for 22 years. I have taken prednisone 4 times in my life, but I always had to take high dosages for a very long period of time and then the weaning period lasted for months. In 2004 I had such a bad flare-up of Crohn's that I almost didn't make it. So I say Prednisone is my necessary EVIL.
I gained 40 pounds and was a MONSTER with my mood swings. The lasting side effects have been hard for me to handle.
The Prednisone cut off blood to some of my bones which now are dead and very painful as a result. I am having major knee surgery in a week and a half because of this (which is called Avascular Necrosis). I have AVN in both of my ankles, both knees, and most likely in both wrists. I will most likely need a Total Knee Replacement, but because I'm so young my doctors are trying every other type of treatment first (otherwise I would probably end up in a wheelchair by my 50s) I am in constant pain. I had never even heard of this as a side-effect until 2004 and after I was already on a high dose for a month.
I also have cataracts from taking steriods.
I feel MUCH older than I am. I have battled a disease for 22 years but the side effects of Prednisone are harder for me to deal with.
Although prednisone essentially saved my life, I wish I would have been more informed of ALL the possible side effects.

Hi polkanow,
I read your message and I wanted to write to tell you that we all go through the feeling of not being ourselves. It's a shame that we need to go through this for the pills to work on our bodies. Keep reminding yourself that once you are off the medication you will be your old self again. I have been on prednisone for over a year, I started at 80 I think, and we were reducing the dosage like you're supposed to with my disease (Wegener's Granulomatosis), and after my lung surgery about 6 months ago I had a flare up of the disease and had to restart prednisone at an even higher dose, at 100mg. This second time on predisone is much tougher than the first. Somehow, I guess because I've been on it longer, I'm experiencing more side effects, more ups and downs, more round face, more dark hairs on my face and neck. It doesn't help us at all that it makes us so unattractive either!!!! Does anyone know if the hairyness goes away like the moon face is supposed to? (thanks for the encouragement, sanndiego). I am small boned, and yet I've gained so much chubbiness on my face and neck that I can't wear some of the necklaces that I used to.
Patience

Dear Friends:

I have been off and on prednisone for thirty years. I am a chronic asthmatic, and things flare up easily. This past six months have been difficult, as my symptoms have exacerbated about every month.

Prednisone has taken its toll. My weight has been a problem even though I am careful what I eat. My muscle mass seems to have decreased, and I find that I do not have the strength I used to have. I am 67 years of age and otherwise in good health. I do have peripheral neuropathy in both feet and legs, and polycythemia vera. The Polycythemia is been under control for 7 months, with no phlebotomies required.

The worst side-effect of all is on my libido. I have always been sexually active, but the prednisone has made me dysfunctional. When I ask my doctor(s), the inevitible reply is, "Well, as we age, things are never what they used to be." They avoid the subject like the plague.

I need some information. Is it the prednisone which has caused erectile dysfunction and loss of libido? If so, what can be done about it?

Dave

Hi everyone..........
I have been on prednisone for aobut 6 months. I had a flare up of this skin itching I get and prednisone gets me over the flare up. The doctor also gave me 12 refills and the dosage is 30 mg. a day. The doctor that put me on it refuses to see me saying that I am "alright." I feel just as miserable as I was 6 months ago. (by the way, he also informed me that I have Lupus AND the blood works says not!) I have the moon face started and I "snap" easily at my housemate. Also the weight is coming on fast and furious. I have lost interest in doing the things I once enjoyed. I pulled out of church choir and I don't care to go to polka dances, which I have done for 39 years. I am just NOT ME! I bruise easily on my arms and am breaking out more with psoriasis. I don't want to go anywhere or do anything, I fell like crap! And I HATE feeling like this!

I began taking prednisone a week ago for a severe case of poison ivy. prior to taking it, i did a little research and heard all of the horror stories, so i was very anxious. the doctor prescribed 20 mg three times a day to start, with a taper-off beginning three days later. my wife, who is a nurse, was shocked at the high dose, consulted with a friend who is a nurse practitioner and we all agreed to cut the dosage by 60%. I began to take the drug, and relief was almost immediate. My hand was so swollen with the ivy, i couldn't make a fist. in 24 hours, the swelling had gone down, in a few days, the itching was gone and the ivy was drying up. In addition, i have had zero negative side effects. Contrary to what I have read, I actually have a decrease in appetite and a bit of weight loss. I have more energy and feel wide awake until about midnight every night. It takes a bit longer than usual to fall asleep, but I feel great upon waking up in the morning. All in all, I have had a very positive experience with prednisone, and that is a lot for me to say, as I despise pharmaceutical companies, and take no prescription drugs at all (well, except for an occasional prescription decongestant when allergies flare up.) But I shudder to think of what would have happened if I had started on the massive dose the doctor originally prescribed.

I myself am recovering from poison ivy. Wondered if the prednisone was causing the night sweats. Knew about the other side effects listed because I had a similar rash flare up last summer where prednisone was prescribed for one month. If the side effect was on the bottle, I had it. No more gardening for me. I'm on for ten days this time...but think I'm gonna give the doc a call because it seems to be reflaring now that I'm cutting back on the prednisone. Similar to you IvyGirl I only have about 2 days left and the poison ivy is resurfacing. Read somewhere online this evening that if you try taking your dosages earlier in the day it may ease the night sweats and possibly the insomnia too. Good Luck IvyGirl.

Even at 5 mg I have increased appetite, weight gain, insomnia. I have been on prednisone since 1997 for polymyalgia rheumatica. When I have a flare, I take 20 mg for a few days and titrate down to 5 mg which seems to be the dose I need for pain relief. I do not like the side effects at all. Are there any other medications without side effects?

I was diagnosed with rhuematoid Arthritis in 1986 so I've had it for 19 years, I was 27 years old at that time and I am currently taking methotrexate & Humira injections, but occasionaly I have a flare up and need to be on prednisone, But this time after coming off of it the side effects were horrible, My right leg feels so stiff and the knee is all swollen and both thighs hurt just to touch them, also my arms feel like I just worked out for the first time in my life, I got sores in my mouth and once they were gone the top of my mouth feels like I burnt it. It's smooth and hurts to brush my teeth, I don't know what is going on, I have never had symptoms like this before and In 19 years I have been on and off prednisone a dozen times but have never been in this much pain after coming off of it! Has anyone else had any of these symptoms before???? I am also very fatiged I feel like I have fibroymialga.

I have had psoriasis for 15 yrs and psoriatic arthritis for 5. After having a major flare up of psoriatic arthritis where my tendons and major joints swelled.My doctor finally decided to prescribe me something for the swelling after 4 months of not being able to walk most days. I first started with Sulfasalasine (500mg daily for 7 days, 500mg twice daily for 7 days, 500mg three times daily for 7 days, and 1000mg twice daily for 7 days). After a month my psoriasis started to flare and it looked as if i was having a rash so it was discontinued.

A week later i received a prescription for Plaquenil (200mg x2 for 14 days) and Prednisone (4x5mg) in the mail. It was a two week trial of plaquenil, and with the prednisone i was to decrease by half a pill every three days. By the end of the two weeks of plaquenil i was noticing a red blotchy rash on my chest. I contacted my doctor. 3 days later the rash had gone from my chest to my neck to my cheeks. By the 4th day i had swelling around my eyes and they were also red and blotchy, my hands were also swollen to the point where i couldnt bend them and I was having a fever and night sweats. My doctor finally contacted me on the fifth day after stopping the plaquenil, and told me to discontinue it. I went to the hospital on that day and told them i thought i was having a allergic reaction to plaquenil, they stood five feet away looked at me and said ok just keep taking the prednisone at 20 mgs for a few days. They didnt want to get involved due to the fact that i had psoriasis. But also failed to mention to me that it could be the prednisone causing this reaction also.

The next day i saw my dermatologist, she prescribed 1% hydrocorisone cream which helped with some of the dryness and pealing skin. The next day when i woke up i couldnt open my eyes, i was having shortness of breath ( im not sure if it was the panic from not being able to see) my throat felt as if i had strep throat,and the roof of my mouth felt as if i had burned it. My skin looked like a huge sunburn, the parts where i had psoriasis were very red,raw,and pealing excessively. I was admitted to the hospital for four hrs where they gave me a IV of benedryl and a steriod.My skin was so swollen they could just barely find a vein to put the IV in. After 50mg of benedry they realeased me and told me to keep taking 50mg every 4-6 hrs and they prescribed me 50mg of prednisone for 7 days. By the next day the swelling had gone down by 30% in my face, but i still looked like i had been in a fight, the pressure around my eyes was so much that i had to sleep sitting up. Of course i wasnt really able to sleep with the fear that if i closed them i wouldnt be able to open them again. They also leaking white stuff. My skin was pealing in very large sections. I was bathing in a luke warm bath with oil, which would help with the pealing of my skin but then when i came out i would be freezing cold. I would get hot flashes and then instantly cold 5 minutes later. I felt like i running a fever but my temperature was normal.

Two days later the swelling was gone in my face, but my legs, ankles and feet were abnormally swollen. My skin was still pealing and constantly itchy. My skin tone was all pink it was no longer red and blotchy, but after i would shower or bath my legs would have dark purple and blue spots on them that looked like bruises. I was unable to sleep for more then two hours straight, i would wake up feeling as if i was on fire. It took another six days for the swelling to go down fully in my legs, ankles and feet.

After taking 50mg of prednisone for 7 days I am taking 45mg for 7 days then decreasing by 1 pill every week. After taking 45 mg for 3 days my skin looks as if its a big rash, it feels grainy and tight. Its no longer pealing except for on my feet.

Im told i look as if i have a bad sunburn, my face is red and tight to the point where the skin around my eyes doesnt even stretch when i open them widely.The sides of my mouth keep cracking when i try to open it fully. I look as if i have really dry skin constantly, it is a fine dusty flakeness. I bathe in moisturizing bath oil but it doesnt even go past the first layer of skin it seems, and i moisturize with keri lotion 3 or 4 times a day but it doesnt seem to matter how much i do it 15 minutes later im just as dry.My skin is sensitive to light and feels like its on fire when exposed to any amount of sunlight. The skin around my armpits and breasts or anywhere that the skin has to strecth is red and sore. I still get hot flashes but most the time i am freezing cold. The skin on my hands is wrinkley and i have no sense of touch almost. My nails were so brittle they had to be cut all the way back.

I have numbing of the tongue, i cant even taste food anymore. I have dry mouth, and i feel as if im dehydrated constantly, i can drink bottle after bottle of water and still feel thirsty. I feel really hungry sometimes or not at all at others. Some days it feels like I IBS and then other days it can be fine. I am losing my hair. The roof of my mouth still feels as if ive burned it on something hot. My legs still look purple at times when im standing, and especially after being in the shower or bath. I am taking 1mg of both folic acid and zinc which my rheumatologist suggest to help slow the reproduction of my skin cells. I have blurred vision 90% of the time, and sometimes i see halos around letters. My mood swings are all over the place, some days i feel like just crawling into a ball and not moving, mostly because its too painful to move around and also because i hate how I look. And other days i just feel nothing at all. Im not exactly sure if when i was the 50mg of prednisone i was happy because of the drug or if i was happy in general because i realized what i could have lost. Not being able to see for 15 minutes really put things into perspective.

Im not sure how much worse it can get? I thought the swelling of my eyes was the worst part but from what i hear it can get much worse coming down off of prednisone. I was wondering if anyone else with psoriasis may have experienced any of these side effects while on prednisone? and roughly how long it took for them to go away.

Well, so far I have been lucky as my side effects have been bareable. I have had to take prednisone twice due to ulcerative colitis flares. The first time I started at 40 mg I.V. while in the hospital. Within 2 days I had gone from having 15-20 BM's a day, to 2 or 3 a day. Within 9 days my diarrhea had cleared up (and I was able to leave the hospital). I noticed after about 4 or 5 days of being on prednisoe that my appetite had gone through the roof. I was inhaling the tasteless hospital food like it was gourmet cuisine, and then I mooched food off the teenage in the bed beside me, and anyone else that had any. After loosing about 30 pounds in the previous few months from the colitis, the weight gain was actually a plus. Other effects from the prednisone were night sweats, insomnia, mood swings (I was really irritable), joint pain, and kind of a buzzy head feeling. The Doc tapered me quickly on the following schedule:

40mg 2 weeks
30mg 1 week
25mg 1 week
20mg 1 week

then dropping 2.5 mg's a week to 10, then 2.5 mg's per every 2 weeks until 5mg, then off.

I noticed the side effects diminished alot once I was under 20mgs.

The second time on prednisone after another colitis flare has been a lot easier to take. The only effects I noticed this time were appetite, buzzy head and joint/bone pain (especially in my neck). which again decrease alot when I got under 20mg.

Like I said, I feel lucky that my problems haven't been as bad as many who have posted on this site. If you are new to prednisone, don't get to scared by everything you here. If you are taking it, it is probably because you have little or no choice. Stay positive and maybe you will be lucky like me.

To taylorry and everyone on this lovely drug called Prednisone. I have Ulcerative colitis. Recent flare up last year March. Talked to dx, not take me seriously. Had colonoscopy it was bad. Statred 1st time 40mg, felt better next day. Night sweats, no sleep for a month on sleeping pills. I too looked forward to my next meal. I weaned myself off, I think I did it to fast, I could not take it anymore. When does your body stop hurting. My family/friends don't understand why I am so withdrawn. We have to help each other. Love the site.

Having my first flare-up in nine years of ulcerative colitis. Other meds aren't working and just started today with 40mg prednisone. I am also suffering from anxiety and depression. Very afraid of how this drup is going to make me feel. Even though I was on it before and had bearable side effects such as not sleeping, energized, and weight gain - I am now 11 years older and afraid of how I will react. I must say that because of this drug - I did not have to have surgery and still have my colon. Hope it works just as good this time.

I have crohn's disease. The first time I took prednisone was 4 years ago when I was first diagnosed. I started with a 40 mg dose and then gradually decreased it for 2 months. The only side effects I had then were a round face and acne which went away when I stopped the medicine.
Recently I had a serious flare, and the doctor put me on prednisone again. I will take 40 mg for 2 weeks and then decrease it by 5 mg weekly. This time I'm having very terrible heartburn and stomach ache. I also have a bad taste in my mouth and am always dazed and cannot concentarte. I started taking also Imuran , which my doctor says will help me and allow me to stop the prednisone in 2 months. I hate this medicine!

Prednisone for crohns, started at 40mg. i did experience some of the side effects, the muscle burning, hunger and irritation but was happy to live with it as it was actually making better. then a flare up before travelling to my in-laws in poland and took prednisone to control it. the anger, rage because of an icident there was amazing. my father in law wont even ackowledge me and my marriage is heading to the divorce courts. Someone said earlier" it's 2004 their must be better"..Absolutely

My husband has Crohns. He was treated at the emergency room two days ago for a flare up (we are on vacation). He has never taken prednisone before. He was given 80mg and told to cut to 60mg a day for three days and then stop. This sure doesn't sound like what other people are doing! His calf muscle has swollen and turned hard - like a persistent charlie horse - so bad that walking is difficult.

I have ulcerative colitis. Had a very bad first flare up and was put on 40mg prednisone. three days later not feeling better , was increased to 60. within two days all my symptoms vanished. i was on it for three months and experienced lots of energy and sleepless nights . facial hair growth . could not stop eating. gained 20 lbs. it cured me for 7 months and now i'm having a minor flare up again and back on the miracle drug again. the drug helped me get better , i can deal with the hair growth and the weight gain . i felt normal for seven months and thankful for that.

I've been on and off Prednisone for 11 years now. Highest dosage was 100mg, but I rarely need to get that high anymore. Although this is a particularly bad flare (Lupus) and I'm taking 80mg now. They say it's the miracle drug that kills. It saves my life now, but will destroy my body over the long run. I'm hoping someone comes up with an alternate solution. My side effects are: weight gain (but with lots of exercise and paying attention to what I'm eating, I can maintain), puffy face, for the first few days - very hyper (MUST CLEAN - strange), then low lows. Also, very important side effect to know about: mistaken feelings of being mistreated (my poor boyfriend had to get an "explain your behavior" lecture when he hadn't done anything wrong). One of the worst and most dreaded side effects is night terrors/hallucinations. I will have an AWFUL nightmare and wake up and I'm still seeing it (i.e. 4 ft spider dangling above my head).. takes 5 minutes awake for me to talk myself into realizing it's not real. I have also lost control of my bladder in the middle of the night before. These only happen on high doses (>40mg). I also get flushed and hot when the med is wearing off and I know I need to take another dose. If I'm taking >40mg/day I will space it out every couple of hours. Every body is different. I don't have the acne... but there's always time! lol... Good luck, everyone... Know your body...