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PredniSONE and mood swings

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200 Side Effects posted for PredniSONE

November 16th
2009
10:13 AM

Where do I begin. I've been on prednisone for about 3 months now, and I feel like it has ruined my life. After having my son in February of this year I went for my 6 week check up and found out that I had high blood pressure and my kidney function was low. Before this I was pretty healthy. So, I was put on 30mg of prednisone in hopes that it would reduce or erase the inflammation. It reduced it for a while, then it went back up. While on the darn drug, Ive experienced moon face, weight gain, Im always hungry, acne, shortness of breath, and paining in my legs and back. The worse side effect has been the mood swings and anxiety, probably because it took something terrible happening to realize that they were really happening. My boyfriend told me that the drugs were making me act different, but I just thought he was picking on me as he did with my weight gain. Turns out, I have read everyone elses post and realized that many people experience what he says I've been going through. As a result of my mood swings and being so mean and demanding, my relationship may be over. I wish that he would understand that it's not me, it's the medication, but I can't convince him. Thats weird, especially since he pointed it out to me months ago. So now, I hate this drug. It's not making me better and it was a contributor in ruining my relationship. I want to just stop taking it, but Im scared I will get even sicker. There is no hope here.

-- By jeresmom | Reply | Private Message me

November 5th
2009
6:00 PM

Prednisone has messed up my head. I had Bells Palsy (which is paralysis of one half of the face) and can be very scary. I have had some depression before but this stuff made me fall off the face of the earth. I went from someone in control and quite happy to the absolute pits. The depression was quite severe and sudden and I had no ability to stop the downward spiral. It has played havoc with my life. In its defense, it cleared the Bell's Palsy up very quickly but the grief it has caused me through my altered mind state wasn't worth it. Insomnia (eg - no sleep for 6 nights straight) was a trigger and then the mood swings took over and then bang....full blown depression and an inability to focus, work properly or function. I am now on the road to recovery but it has been a pretty turbulent 2 months. Be very careful with this drug....very, very careful.

-- By roger12 | Reply | (1) replies | Private Message me

October 10th
2009
12:45 AM

I was prescribed medrol by my GP due to an ongoing rash that needed to get under control. I believe I had the 40mg dose/wein pack. The first two days I felt as though I were on speed. Day 2 at the grocery store I stopped to take my blood pressure because I was sure my heart was racing out of my chest. Thankfully, it wasn't and happened to be palpitations that I was having. I had hot flashes where my face and chest would get red like a sunburn. There were the sweats and the leg weakness/soreness. I did have sporadic headaches but, nothing a Tylenol wouldn't alleviate thank goodness. I've read here that numerous people had very bad headaches. My last day on the meds I started to experience the fatigue. Today is my first full day off and I certainly felt flu like. Sporadic lightheadedness, weakness and fatigue that would all come and go throughout my workday along with sporadic energy. I'm glad that I found this site so at least I know that this is normal and will subside in a few days. Other side effects I experienced were worsening of my post nasal drip along with a funny taste in my mouth, mood swings, insomnia, hyperactivity and muscle aches.

-- By kerijean | Reply | (1) replies | Private Message me

October 6th
2009
8:52 AM

iv been diagnosed with crohns 2months ago iv now been on prednisone for 4weeks i started on 40mg and now down 2 15 the last week my ankles have swelled up and now my right ankle is so painful to touch and walk on, and nothing is making it better, pain killers don't work, massaging it doesn't work, putting deep heat on it so to night i iced it for 15 mins and put a heat pack on it several times the pain went away for 10mins and came back its so painful im almost in tears, im down 2 15mg now so im not eating as muchas i was b4 i wasn't getting full i just keeped eating, my mood swings arnt as bad iv got moon face as they call it and i hate it as theirs no shape at all 2 my face, im getting pimples as will iv retained all this fluid and i feel like a marshmallow can someone please tell me that this pain will go away or is their something i can take 2 make it go away this is the worst medication in the whole world when i get off the prednisone and i have another flar up id rather have the runs and stomach cramps then all this drama iv been having in the last 3weeks iv also changes my whole diet and its made a huge difference 2 how i feel

-- By nes09 | Reply | (2) replies | Private Message me

September 24th
2009
11:56 AM

I am so relieved to have found this site... i have been miserable for almost 2 weeks, i broke out with hives last week and never found the cause but with that and some breathing problems they put me on prednisone. I have been miserable since, i couldn't eat drink sleep or do anything else at all pretty much and i have had diarrhea, and a ton of other symptoms... i feel bloated acid reflex muscle aches headaches dizziness chest pain & pressure very weak feeling mood swings and depression the jitters and heart racing and from what i read and researched this is all from the steroid prednisone.... thankfully the doctor ended my dosage sooner than it was prescribed and last night i took my last pill... i now am just wondering when or how long will it be till i feel myself again and can have a good nights rest?? I will never use this medicine again!! I am just soo relieved to have found some answers on here.

-- By carlie81790 | Reply | (1) replies | Private Message me

August 17th
2009
5:04 PM

I am 48 years old. I have been asthmatic since I was 10. Never in my history of having chronic asthma, have I had to take prednisone.I started with 10 mg for the first 8 days. After a trip to the emergency, my Dr. found it necessary to up my dose to 40mg. I took this dose for 17 days. My face is round, I have had the worse acid reflux in my life, I have had mood swings..was up all night for 2 weeks and I still can't breath that good. I am weaning myself off of this prednisone and I am looking for another doctor. I am down to 10mg and I plan never to have to take this awful medicine again. I guess It would be okay if I was breathing like a champ, but I'm not. So there is no use in having all these bad side effects if I am still having trouble breathing. It's just seems that even a Pulmonary Dr. would want to take the fast way out. There are other safer meds to use.

-- By tootsie61 | Reply | Private Message me

August 12th
2009
3:32 AM

I'm a 35 yr old stay-at-home mom of two who was diagnosed with mixed connective tissue disorder over three yrs ago. But since I was 18, I've had scleroderma & rheumatoid arthritis when I was 23. I never took any drugs for either one up until May 2008. Although the worst things I've gone thru over the yrs were weight loss, stiffness and limited flexibility. The most dramatic change was my facial features. I've had old friends from high school ask me if I had plastic surgery! Other than that, I was able to get pregnant twice and have two beautiful boys. When my rheumatologist diagnosed me with MCTD in 2006, two yrs after my first child, it was very upsetting to know that lupus and sjogren's syndrome was added to the mix, literally. She wanted me to take prednisone and plaquenil. I said no way. I told her I wanted to try for another child and didn't want any drugs to ruin my chances. She assured me that I could take both even while I breastfeed! So I left and ended up with my second boy in 2007. But admittedly, both pregnancies took a toll on my body, the first one with MCTD and then the second one, I had gestional diabetes. A few months after birth, I felt the arthritic flares and the fatigue and sluggishness coming on strong. Without doing any research about either drug, I did consider taking it after I stopped nursing my second child and thought okay, two children are it for me and now it's time to take care of me. I was given prednisone at 5mg daily May 2008 for that entire month. I was very scared but I did it. I just didn't do it consistently. I would skip a day or two..or three...or four days at times before I would take it again. The rheumatologist didn't give me any warnings about side effects, skipping the dosage or tapering off. After I ran out, I decided I couldn't go back on anymore. It did ease the stiffness in my joints and gave me more energy but the mood swings, faster heartbeat and more than normal anxiety did not help. In the next two months, I experienced serious cases of heartburn and acid reflux and a series of episodes when I would gag on a bite of food and had to jump a few times to get it down. I felt a rush of such fear every time it happened that I knew it was the absolute worse feeling I ever experienced in my life. Then the worst happened last August when I fell asleep one one night after having a chocolate chip cookie. I woke up and couldn't swallow. I started drinking water but it was coming back up and out of my mouth. I panicked and screamed for my husband to do the Heimlich on me but it wasn't working. We called 911 and I started downing another glass of water. By the time they got there, I felt the cookie go down. It was something I never wanted to go through ever again. I saw a holistic chiropractor who specialized in kinesiology and other little rituals. He discovered a problem with my adrenal glands and digestive system. Soon after, I saw a gastroenterologist, had an endoscopy and Barium swallow and the diagnosis was esophagitis. It significanty showed how thin it was getting and why I had trouble swallowing. As of last November I was scheduled to have a three hour endoscopy to have a tube go down my esophagus to widen it enough to be able to swallow again. I was too scared and so it didn't happen to this day. You see I like to go the natural route but it is an expensive one at that. It really is my gut instinct that tells me that drugs like prednisone are killing more people than helping people live. But I look back to the fact that I still didn't know anything about it, not like I do now, thanks to the internet and websites like this. Then here's an absolute doozy for you! I was fine for a few months, up until a few months ago in February. My knees were in pain and stiff as a board, my arms were not happy as well. I couldn't take it anymore so I actually went back to my very first rheumatologist in March, who I saw when I was 25 yrs old. He did x-rays and then pushed for the prednisone. I broke down and decided to take it again. This time at 10mg a day. Now I know this is nothing and so was the 5mg from last yr but being only 102 lbs at the time, my body was telling me that it couldn't handle it anymore. I took it consistently this time and for almost two months. The last two weeks though I started to skip again. I also decided that the RA was too old school for me so I went to see yet another RA at the end of April, the one who diagnosed me w/MCTD three yrs ago. I figured the first one never changed so maybe she got better this time around. She took me by surprise when I told her I was taking pred and that she wants me to stop!! She specifically said, "it's an immunosuppressant, that wouldn't work for you."! What a joke!! So she just said to finish it off and start on plaquenil, another drug I dreaded to take. Again, no explanations about side effects or tapering off, I had like three pills left and just stopped. As for the plaq, talk about short-lived. I took maybe three or four and that was it too! I was angry by all the RAs and how they operate. Just take this and don't worry about nothing else. I'll see you in a few months. Then you go home and forget about it. It is highly unlikely with what came next for lil ol me. The first week of May, a pain started in my right ankle. It was more like an annoying sore pain so I tolerated it. By the end of May, I was hobbling on a cane and watched my foot go from normal every morning to an inverted position, w/ the sole facing my left foot. It was swollen, painful and I couldn't put any weight on it. After thinking I was going through an arthritic flare, I said to myself that this was no ordinary flare I've had in the past. I thought of prednisone and how it started after I stopped taking it. The plaq was not in the picture since it takes months for it to take effect. THAT'S WHEN I FINALLY SAT MY ASS DOWN AND STARTED SURFING. After a good three sleepless nights of reading pages and pages of info about withdrawal symptoms, tapering off and stories much like the ones I've read here, I flipped out and went on a mental rampage. I put two and two together about the link between my esophagus and stopping the pred last yr. I have no doubt that the pred f'd it up! Now after seeing one orthopedist (who didn't deal w/the foot/ankle but didn't know), having an MRI which showed torn tendons and ligaments and then being sent to a podiatrist surgeon (BIGGEST MISTAKE TURNED INTO A BLESSING), who decided to take the conservative approach by having my foot casted in a straight position. It was a procedure that I had to be knocked out for since I couldn't bear the pain of anyone moving my foot. That was June going into July. Removal day was the 23rd and lo and behold, hello inverted foot again. Not only did the cast feel loose but I felt my foot turning in it! The blessing was that I didn't have surgery and I didn't have it w/ this damn doctor! He then felt I needed to see a neurologist to rule out whether I may have lesions elsewhere in my body that could be the cause of my foot inversion. I said sure I will see one but I'm not coming back to you! I went to see the doctor I was supposed to see in the first place, an ortho surgeon who specializes in the foot & ankle. But boy he threw me for a loop! Not only did he roll his eyes at the idea that prednisone was involved in this injury, but that MRI don't tell the truth and so I don't have anything torn!! Based on my autoimmune history, he wants me to see a rheumatologist to rule out arthritis as the culprit. He also thinks seeing a neurologist will be a waste of time. He also mentioned the possibility having RSD/CRPS. Google it, it's not GOOD! I honestly hope that's not the case since I'm not in any pain other than the stiffness and non weight bearing pain I'm already used to. This ortho is supposed to be one of the best in the nation and I don't know if I can trust him either! All I know is the prednisone should be BANNED. BLACK BOX THIS BITCH!!! If I had the power and money to go after the makers of this drug, I would run them down for every dollar. I have my 22 month old who was just diagnosed w/PDD recently and I get angry w/the memory of that RA trying to get me to take the pred and plaq before I got pregnant again! My almost five yr old is wondering why I have to walk around in crutches every day and that I can't go outside to play with them anymore. It's been almost three months of this ordeal and it's starting to really depress me, my husband is trying his best to take care of me and the boys as well as my mother and mother-in-law. I have a great support system but I still long for leisurely walks by myself and taking the boys out on my own. I can only go outside in a wheelchair after my husband carries me down three flights of stairs in a no elevator apt. bldg. Life has changed drastically! I'm trying to stay sane everyday for my boys' sake and for my husband's. I do want to mention one last and most IMPORTANT THING. A website: ****** I started taking it two months ago and it has helped me tremendously so far, regardless of my situation. I developed an enlarged thyroid nodule back in February which needed a sono guided biopsy to see if it was cancerous and it turned out to be benign with normal thyroid function as of last month. As for my foot, I don't know what I may have if it's not arthritis related but I hope that LDN is working on it as of right now. For all autoimmune disorders and some cancers, anyone here should take a look at the website and read more about it. Thank you for letting me share my story :-).

-- By ajd102 | Reply | Private Message me

August 1th
2009
7:41 PM

Please someone help. I've been on prednisone for a year and a half. told I had Adrenal Insufficiency and as I was weaned off complained to my doctor about mood swings and not being able to sleep. Now down to low dose and experiencing free fall feeling in chest,shortness of breath and worst of all rage. Want to break things and just die.My mood swings escalated and they want to up my prednisone and told me to see a psychiatrist! My eye sight has changed this past year for the worse. Need new glasses and if they up it I'll go blind! I want my life back. I use to be the most level headed, peacemaking person and now I don't know who I am. Please someone HELP I need advice how to get out of this vicious cycle.
Thanks in advance

-- By kuccikoo | Reply | (1) replies | Private Message me

June 17th
2009
3:46 PM

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

-- By db1993 | Reply | (12) replies | Private Message me

June 16th
2009
2:26 AM

22 years old i have had Coltis for 5 years,flair ups pretty much the whole time, i have been on Prednisone a lot this last time has been the WORSE!!! All i can say is i hate it!! i was put in hospital the 4th time steroid thou the iv for 5 days sent home got worse again back to hospital then to try Cyclosporin thou the iv and also the steroid thou the iv. Ten days later they sent me home on prednisone coming off the iv was hard the pain in my legs was unbelievable!!! finally i was sent home on prednisone,coliform anemas,salfak anemas,and salfak granuls,i thought the worst was over but it was far from it... I turned in to a complete loony,crazy women i don't even know myself anymore my poor partner and kids. Having to deal with the pain and everything eles that comes with having a flair up but then also going though the side effects of the prednisone and the coliform was unbearable, i just wanted to die! My flair up was not getting much better and i hated myself as i felt i did not know myself with the mood swings, the crazy flip outs,crying all the time.My partner has been great having to pick me up off the ground and turn the crying reck into someone half normal. I hate the moon face,weight gain, im hungry ALL the time,night sweats,sleepless nights sore teeth,I have come off it now its been 4 days, so now all i need to stop its the coliform then i will be steroid FREE!!!!! i cannot wait!! For my face to go down and to be normal and back to the good old me! I forget what shes like... Coming off the Prednisone has been hard with the leg pain,muscle aches,head aches,mood swings,nausea. Its just hard as no one around me understands what im going though or what it feels like so i just sound like a sookie cry baby or a raving loony. does anyone know how long it takes for moon face to go away??? I wish everyone luck with there battles with Prednisone, its one of the hardest things i have had to deal with. =) your not alone. stay strong and be positive even throu your lowest times.

-- By roxy8_7 | Reply | (2) replies | Private Message me

June 3th
2009
2:17 PM

I'm sitting here in tears reading all of your posts because I've also been on prednisone and have horrible side effects. I was diagnosed with metastatic breast cancer in my lungs in June of 2002 and, after starting at 60 mg/day then, I have been on 20 mg/day for years now. The very first posting that I read mentioned problems with the femur bone. Besides all of the other problems associated with this devastating drug, in December, 2007, I broke a bone in my left foot with no known cause for it. Then I started experiencing pain standing or walking in my left leg and was diagnosed with a fractured femur bone and after several months of trying to get it to heal (including an ultrasonic bone healing system), it just kept getting worse until an orthopedic surgeon recommended that I have a 16 inch rod put into my leg which I did and it ended up to be one of the worst decisions that I have ever made. After experiencing all of the prednisone side effects for almost seven years including depression, severe fatigue, weight gain, moon face, thin skin, cataract surgery on both eyes, hump on my back, mood swings, etc., the pain and suffering that were caused by that operation brought me to seriously consider suicide. I was also diagnosed with chemical neuropathy in both of my legs also which makes my legs so weak that I have to crawl up any steps and have trouble just standing. I actually have an appointment for this evening to have an x-ray done to see what is wrong with my knees and did not realize that this also is yet another side effect. I never make it through the night without waking up in pain and getting a pain pill and then getting up in the morning is almost unbearable with that "burning" pain. I am now on Cymbalta for depression, Xanax for anxiety, Percocet for pain, and of course 20 mg of Prednisone. I was told that I would have to remain on Prednisone for the rest of my life because of the lung scarring and COPD. After reading all of your comments, I have decided that I would rather put up with any breathing problems (and I don't even know how slight they may be at this point) than to remain on the Prednisone. I have tried weaning off several times but get so fatigued that I can't move and that's dropping one mg every week. I'm affected by the decrease but it gets out of hand when I get to 14 mg and I get so frustrated and depressed at not being able to do anything that I just go back up to the 20 mg/day. If you have been able to wean off of it, would you please let me know how you did it and what you had to go through? I'm 65 years old now but I have two wonderful granddaughters (ages 4 and 6) who I can't do any normal "Grammy" things with anymore at this point and I have to change this condition for them and for me. Obviously, the doctors don't recognize the severity of the drug because they just keep prescribing it and out of a regular doctor, an oncologist, an orthopedic surgeon and a neurologist, they can't seem to get together to come up with a solution. I have to say that I haven't considered suicide lately but I do wish that I would just die and be out of this pain. My family and definitely my granddaughters and wanting to see them grow up are the only things that keep me going. There are probably things that I'm forgetting but I'm sure that one of you have covered it in our posting. Although my family is so supportive, no one and I really mean not one of them, realizes knows what we all go through because of this drug. How could they know that something that is supposed to help you could cause these problems? My life is a living hell, all because a pulmonary doctor prescribed prednisone seven years ago and I trusted him to only do what was right without informing me of what was to come. I more than sympathasize with all of you. I sincerely appreciate the time that you took to post to this site and so thankful to know now that this knee pain is not something new that I have but another side effect of the prednisone. I wouldn't have known that if it wasn't for this site because I'd be willing to bet that after I would have had this x-ray done, one of my doctors would have just prescribed another medication to take. Please feel free to contact me directly with any comments or especially any help that you can give me. I know that all of you are going through the same thing so if I can do anything for you, even just listen and understand, please contact me also. Sometimes that's the only thing that people can do is to listen and someone who is in the same situation can always understand. I'm here for anyone who needs a hug for the day.

-- By karen122275 | Reply | (2) replies | Private Message me

May 21th
2009
2:48 PM

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.

-- By magdalla | Reply | Private Message me

May 20th
2009
2:51 PM

They think that I have either crohns or ulcerative colitis. I have tried antibiotics, lialda, mesalamine enemas, with no improvement. After another colonoscopy they put me on prednisone at 40mgs, 30, 20, 10, then 5 decreasing weekly. Well the first week was okay. I had some of the side affects, insomnia, extreme hunger, and crazy. I could deal with that. But then when I decreased down to 30mg, my body flipped. I awoke from the middle of the night with burning pain in the knees. So bad I took 4 ibuprofen and threw myself in the tub with epsom salt. I thought okay that was weird because I have never had a joint pain in my life. I saw the gastroenterologist that day bc I was still having abdominal pain. He totally blew off the knee pain and said he had no idea what that was. I thought okay maybe it will go away. A few days went by and nothing. 3 days later and I awoke one morning crying in pain because of my legs. I called the on call doctor who also said he had no idea and go to the er. So I went crying hysterically for 4 hours. Even after 3 rounds of dilaudid I was still in pain. They suggested a Rheumatologist. So I went to one a week later who said I was going through steroid withdrawals. And there is nothing we can do but treat the symptoms of pain. I am now down to 10mgs have been out of work for 2 weeks and am absolutely miserable with severe leg pain, muscle weakness and fatigue. He also adjusted the drop down increments to 5 instead of 10. Anyway I will never take this drug again and I think they rushed to this one. Just wanted to share. I am glad I found this website because I went from a fully functioning physically fit 28 year old to a crippled crying crazy person. I think I was scaring my husband, honestly, until we both read some of your postings which were similar.

-- By sbl315 | Reply | (6) replies | Private Message me

May 19th
2009
11:21 PM

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!

-- By rowrow | Reply | (6) replies | Private Message me

May 15th
2009
7:59 PM

my boyfriend has been on prednisone for 4 years and he is terribly snappy and aggravated all the time and short tempered and does not think that he is... i love him so i deal with it but its getting harder because he dosnt feel this is correct every time i ask him something he bites my head off and almost everything i do irritates him gets on his nerves the mood swings are out of this world sometimes and he totally thinks im being a lala in his words...will someone respond to this so i can show him and he will know im not just saying these things
all this

-- By kyliefaye | Reply | (2) replies | Private Message me

April 30th
2009
12:12 AM

I was on prednisone in 2005 first time ever. It completely ruined my life. I was before the prednisone (for just 10 days) a very calm happy person. After seven days I started having terrible mood swings, blurred and darkened vision, savage anxiety all the time, and the deepest depression i have ever known. I lost a business, a marriage, half my family, my sanity, composure, and ability to work. The doctor better hope to hell I never catch her out and about. Anyway after four years of pure hell I am finally able to work again and feel pretty normal most of the time. This drug does much more harm than good. I had a simple yet severe allergic reaction and was prescribed this terrible drug. Words cannot describe the personal hell I have been through. I think that most if not all doctors should be put out of their misery. I for one have started a movement to take out the doctors before they take us out. This is war and Im not going away that easy. If your life has been destroyed by prednisone do not do anything drastic. Just remember that just because your doctor poisoned you that it does not last forever. You will eventually feel better. It might be after your sanity has been tested to the limits and you lose everything you ever worked for but eventually you will come around. As for me I am starting my plan very soon. I absolutely believe that their is a movement in this country to take out or cripple as many trusting people as they can. The fda, cdc, ama, and others are evil.

-- By flugey3804 | Reply | (1) replies | Private Message me

April 26th
2009
11:39 AM

I had a kidney transplant feb08. I was put on prednisone as a rejection med. So far, i have gained 50 lbs, my hair has fallen out, had mood swings when first put on it. Haven't noticed them lately, have little bumps under my skin, not acne, have started noticing slight breathing problems, when trying to walk to lose the weight. Yesterday I was diagnosed with cataract. Eye doctor said that it is another side effect of the med. I am under the impression that, I am on this for rest of my life. Whats next?

-- By motransplantee08 | Reply | (1) replies | Private Message me

April 19th
2009
9:23 PM

Hi everyone, I have just read all thirty pages of posts to try to find some answers to my crazy reaction to prednisone. My thoughts are with you all since I have had an usually severe reaction to prednisone. I was on prednisone for 1 week in October 2008 at 60 mg/day for a sinus surgery. I am still having the following side effects at full force:

Axiety to the point I can't socialize
mood swings
hot/sweating even in freezing weather
whole body shakes
severe migraines
tooth sensitivity
muscle pains
extreme thirst (I drink almost 2 gallons/day)
hungry all the time
moon face
water retention around waist
acne
hair loss
rapid heart rate
dizziness
nightmares
night sweats
high blood pressure
high hear rate

I'm not exaggerating, my parent's can contend to that. I do have a history of having sever reactions to medication and I've had all the gland and blood tests which all check out. I never had a single one of these before the prednisone - I was a healthy 22 year old.

I was wondering if any could tell me when this hell will end - my job and well-being depends on it!

-- By ames | Reply | (6) replies | Private Message me

April 14th
2009
12:11 AM

I am 16 years old and i have an orbital inflamatory psedotumor myositis, which causes me to see double. It is a condition the doctors are kind of just playing a gussing game in how long i will have to take the steroids. Everyone is different., i have been to many doctors and they have described it to me as an autoimmune disease within my eye and not my whole body. I was put on 60mg of prednisone. I have been taking it for over 3 weeks now. I was sapost to be symptom free within 2 days, but it took me 9 days before i noticed a difference in my vision. I am going on my fourth week now and still see double but not as bad. The prednisone has been absolutely awful. i handled it farley well the first 2 weeks and since then it has been pure hell. I do get bad mood swings,and i really don't mean to act the way i do. People i was once really close to don;t want to be around me anymore. Mostly i think i am frustrated with the acne it has given me. I am completely plastered now all over my face neck and chest. It is really embarrassing. I just wish other people realized how frustrating it is. Its like i wake up every morning and take an UGLY pill. I am really self conscious to begin with and was actually feeling pretty good about the way i looked until i had to start this medication. It really does suck. I can't even imagine what some of you are going through right now after reading everyones stories. My heart really does go out to everyone who has to deal with this, and i will pray for all of you. If any one has the same diagnosis as i do or knows anything about it and how long it takes to be treated please let me know. I am begging to worry because i don't think the prednisone is going to work for me. the doctors are thinking about putting me on methotrexate which i am also concerned about but it is not sapost to make you break out which is really all i am worried about right now. I have already back down from prom after working my but off to pay for my dress,and i really don't want my summer to be ruined. i wake up every day and want to hide in a whole were no one can see me. going to school is really hard to. The girls love to make fun of me and the guys are just kind of turned off from how i look.
How long does it take for the acne to go away after getting off the prednisone.and does it go away as you taper the drug down? also how long does it take before most people develop a moon face? i have a range of being on prednisone anywhere form 2 months to a year. There is a possibility that i will never be able to be off of it.

-- By boots110685 | Reply | Private Message me

April 11th
2009
6:12 PM

I have been on Prednisone for 3 months for PMR (polymyalgia rheumatica)and so far the pros have far outweighed the cons. PMR is an extremely painful condition that affects the shoulders and hips especially at night and early morning, I spent all of December and January sitting upright in a chair trying to sleep, untill I was diagnosed and prescribed Prednisone and oxycodone. I started at 25 mg and I'm now down to 15mg. The side effects that I do have are weight gain (about 10 pounds), mild mood swings and insomnia.I am an avid bicycle rider (25-35 training miles per day on week days a lot more over the weekend),I am 60 years old and now back on the bike. The strange thing is after about one month back in training I am much stronger this year than last even with the added weight. Last year, a solo, 30 mile hard ride I would average about 17 mph this week I went out on my same training ride at 19.4 mph, over 2 mph faster. Everything I read about Prednisone says that it wastes muscles,but I have become stronger. Is it possible that it's the Prednisone?

-- By andycolnago | Reply | (5) replies | Private Message me

March 7th
2009
8:02 PM

I'm 16 years old, and in November of 2008 i was diagnosed with nephrotic syndrome, or FSGS. i started taking the preds starting at 60mg, and last month i started weaning off. i'm at 20 mg right now. i noticed that i started getting the common moon face right after i started taking the meds. and i hate it so much. also, i've had so much trouble falling asleep at night, but then when i do, i sleep for so long. i've also had the dreadful hair growth, REALLY bad mood swings, headaches, and for sure, increase in appetite. i've gained 30lbs since ive been on the preds and even when i exercise daily, i still cant loose a single pound. normally im a really fit girl, i ran track and i was a dancer. im just really worried that all this "fat" wont go away. i really hope it does. it just feels like prednisone really ruined my sophomore year of high school. and i just don't feel like doing anything anymore. i just wanna wear swearpants, curl up in a ball and lay in my bed and wait until this nightmare is over. But im just glad to know that there are a lot of other people out there that know how i feel.

-- By ashleyyy | Reply | (1) replies | Private Message me

March 4th
2009
3:56 PM

Just started taking Prednisone 60mg today for an allergic reaction to penicillin supposedly. Since taking it today--I feel hot one minute then cold the next! I have also had this funny tingling sensation all over my body & I feel rather sluggish! I have three more days then hopefully I will feel better!

-- By honorage78 | Reply | (1) replies | Private Message me

February 27th
2009
12:43 PM

I was involved in a MVA about 4 years ago. I was prescribed oral prednisone for my back and neck pain. I took the recommended pack but about 3 days into the regimen I began having EXTREME pain in my joints- especially knees, hips, and ankles. I was not even able to walk by myself. My doctor never even suggested that it could be a side effect of the prednisone and told me that I had to finish the rx or it would be possible for me to have major reactions such as heart failure, etc. I was so scared that I finished the rx. My side effects included weight gain, mood swings, increased appetite, etc. but the worst was the joint pain. I survived the treatment and swore that I would never take the drug again. Well, never say never. My back pain continued and I went to a pain management doctor who recommended spinal injections. He said that the prednisone injections should not have the same side effects as the oral med so I received the injections. He said that he used a reduced amount of the prednisone during the procedure. I had great results with a reduction in my back pain for several months. I just this week had another injection and now I am in experiencing the same horrible pain in my joints as I had the first time with my oral rx. Is this normal? I have contacted my dr for pain med but I know that I am just covering up the side effects. Any one else have similar situation? What do you do when the treatment is worse than the ailment?

-- By a_mom91 | Reply | (2) replies | Private Message me

February 3th
2009
3:56 AM

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.

-- By erikalynn916 | Reply | Private Message me

January 15th
2009
2:54 PM

I have been weaning off Prednisone for sometime, from 50mg down to 5mg in two week steps, 5mg at a time. I've had quite a few of the physical side effects of Prednisone, though none so severe that I would have considered not taking the drug, as it is helping the neuropathy that it was described for. When I hit the 5mg dose, I really seemed to be having trouble with my mental state. I seemed to switch back and forth from knowing what was going on to wondering if I was starting to go insane or losing touch with reality. Hard one to explain. It seems to occur later in the day when I am fairly tired. Back on 10 mg for the last three days and seem to be tired but not so mentally confused. Don't know if this is all from the Prednisone, though. Has anyone out there had any seemingly similar mental things happen on this drug. Thanks in advance for answering if you have had these experiences, they are scary and am hoping that it is the drug and not something else.

-- By roberto | Reply | (4) replies | Private Message me

December 22th
2008
5:56 PM

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.

-- By luppy | Reply | (1) replies | Private Message me

November 3th
2008
9:54 PM

I was admitted through the ER in sept. i had previously taken Bactrim for a bug bite on my foot three months prior. I had been severely bruising and had some lab work done. I got a call from my Dr. around midnight to go to ER immediately. My platelet count was at 11,000 a normal being 100,000-400,000. I went to ER and was admitted for 5 days. After running test after test there was no conclusion to what had caused this low platelet count but I was diagnosed with ITP. From here they put me on 50 mg/day of Prednisone for 1 month. I have now started to taper 40/ 2 weeks. 30/2 weeks. But then the side- effects started to come so fast. At first it was just sweating, minor anxiety, mood swings, and slight increase of appetite. Now that I had tapered my adrenal gland is suppressed much more and I am going through withdrawal. I am 21 years old I am 5'7" and I weighed 118 two weeks ago, since I have gained 12lbs of water weight. I am working out daily and eating healthy, although it is more than I used to eat. I have some family friends that work at Stanford University and they are ITP specialists. They told me their regimen for Prednisone is a 5mg/wk taper instead of 10/ 2 weeks. So the past two weeks I have been going down by 5. Today was my second day at 20 mg. I have gone through all of the mentioned side- effects except the back hump. I am hoping and praying that these symptoms will clear asap. And to everyone else out there your not alone.

-- By lgillette | Reply | Private Message me

October 24th
2008
11:24 AM

Crohn's Disease. I took 80 - 100 mg of this double-edged sword of a drug for over a year. I never noticed the side-effects (moon face, mood swings, permanent fat tissue swelling). I was so very ill from the Crohn's that nothing else existed.

Prednisone worked wonders in the short term, but trying to get off of it was an entirely different story. This drug plays an integral role in the body and touches critical systems and weaning off of it is awful. In the past 10 years, it seems that doctors are more careful about prescribing it, but too often I think people find themselves on the other side of it and seeing how the long-term effects and side-effects have severe impacts on their life.

If you haven't started taking prednisone, make sure you read and research it before you do. It took me at least a year to get used to living without it, and I needed surgery to remove the fat-tissue under my eyes because it was so swollen.

-- By kakareka | Reply | Private Message me

October 8th
2008
9:11 AM

i have been an asthmatic since the age of 2 years old i am now 24 years old. preds as i call it has been a part of my life since then. i have a number of reactions to it from gaining 30 lbs in les than 6 months to almost definitely hallucinating. i urinate frequently,my hubby says that i'm a leaking tap. i cry and grumble at times for no reason: yes mood swings like rain in spring time. i even threw away my wallet after a dose of preds three months ago. i laugh uncontrollably. i get depressed. sleep for long hours one time and then become insomniac for days. i am super hyper. i am creative and expressive and get even better for a few hours after taking preds. also i appear to have an attention disorder at times. i have acute hearing i.e i hear like a fox really well and then some day si behave like an 89 year old with a hearing aid. i get rashes on allergic reactions to things i've been using all my life like band-aid.i don't like it in fact when the doctor gives me 8 to be taken 3 times daily for a week, i take two and feel better without all the side effects. i am so fat its a shame. i was tall and lean and sexy now i am tall heavy and my hubby still says sexy. we all hate it don't we?!

-- By hyper5 | Reply | (1) replies | Private Message me

October 6th
2008
6:24 PM

Hello everyone! I just want to thank each and every one of you for your postings. On more than one occasion I would come to this site because without all of you I probably would have truly lost my mind. I just want to give a brief history of what's been going on with me because if it can help one other person then it's all worth it. In 2005, I go vaccinated for chickenpox, I work in health care, never had them, and wanted to start having children since I'm 36. A month after the vaccine I broke out in a horrific rash ALL OVER and had it until April of 2008. I went to the hospital where I had the vaccine, 5 dermatologists, 3 Infectious Disease, various medical doctors and no one knew what it was. This April, I was admitted to the hospital with Autoimmune Hemolytic Anemia. After 3 hematologists, the last one feels the vaccine threw my immune system into a tizzy. I started with 60mg of Prednisone and eventually got down to 2.5mg. The hemolysis(body produces antibodies that attacks it own body) started again so I went to a new Hematologist and was put back up to 30mg and just got put down to 10mg today. Right now my biggest concern is the hair loss. I use to have such thick hair and now I cry almost daily because I loose so much. I am going to try the Ensure like someone posted just to see if that helps. I drink protein shakes, take Silica, multivitamins (Solgar) that have biotin, and going to try Nioxin shampoo. I have terrible mood swings and now I feel like I am going through withdrawal. It's almost like I want to take more just to feel better. I know that sounds crazy. The big fat moon face, my joints feel like they pop out, confused easily, can't sleep, and just can't really leave my house and live a normal life since April. I HATE IT!!! The only thing that helps me feel better when the daily prednisone "kicks in" is walking and exercising. I feel so bad for everyone this drug is just awful. I get angry because not one person told me what life was going to be like on prednisone. I think that is just mean. That's why these postings are so important. I know this is entirely to long but I feel so much better getting my story out there. Did everyone's hair eventually grow back. I don't know if I will have any left next month. Thank you all so much.
GG

-- By italian | Reply | (1) replies | Private Message me

October 2th
2008
2:27 PM

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!

-- By jovan | Reply | Private Message me

October 2th
2008
2:25 PM

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!

-- By jovan | Reply | Private Message me

September 25th
2008
9:07 PM

I was prescribed the 4mg methylprednisolone pack along with 50 mg tramadol for acute tendinitis in my wrist. I took the first 3 days of the prednisone and only 2 doses of the tramadol over the three days. For a total of 60 mg of prednisone.

The first day I had hot flashes and insomnia but attributed it to the tramadol because I had never taken it before and had taken the prednisone several years ago for poison ivy with no adverse reactions. I didn't take the tramadol the second night and then took it again last night along with my daily dose of prednisone. I had extreme difficulty falling asleep, heart burn, hot flashes; and tossed and turned all night trying to fall asleep. At around 2am, I began to have difficulty breathing, tightening in my chest, confusion, and racing thoughts. It felt as though my throat was closing up on me. My anxiety progressed to the point that I was pacing back and forth. I woke my husband up and told him to prepare to take me to the ER. After calling my insurance's 24 hour help line, it was recommended that I go to the ER. I had an x-ray, blood work, urine drug screen, and echocardiogram. Luckily, everything was negative. The ER doctor told me that I likely had a reaction to the prednisone and commented that some people will experience these symptoms when taking it. He stated that he had a similar reaction when he took it and it felt like he was climbing the walls, which is an accurate description of my experience that night. He recommended that I either stop taking it altogether or call my primary care provider and cut it down. He prescribed me xanax and administered some to me at the ER which greatly helped. The next day I stopped taking the pred but am still having dizziness, chest tightness, hot flashes, and mental dullness. I have decided to never take this medication again. Fortunately, I don't have any of the physical sx that some have experienced, and my heart goes out to you. I think the mental symptoms were traumatic enough for me and can't imagine having both as I would be a basket case. I have mood swings, some melancholia, and am very fatigued.

I think it is imperative to research any medication that is prescribed to you before you take it. Many providers will say that side effects are rare, but my experience is that side effects are more common than rare. My prayers go out to those of you who are going through what I am going through. I hope that it clears our systems quickly because this is no way to live. I'd rather put up with the pain of tendinitis or carpel tunnel than to have these symptoms.

-- By elise1966 | Reply | (5) replies | Private Message me

September 18th
2008
11:04 PM

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.

-- By col71387 | Reply | (7) replies | Private Message me

September 11th
2008
10:36 PM

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)

-- By lastrup | Reply | (2) replies | Private Message me

August 31th
2008
1:43 PM

I was prescribed prednisone (prednisone burst) for my endolymphatic hydrops (inner ear disorder). My initial dose was 80 mg for 4 days and then tapered down over the next 2 weeks. I took my last 5 mg today. I to have experienced the mood swings, along with extra energy, anxiety, fatigue, stiff neck muscles, sore leg muscles, weak leg muscles, nausea, sweaty palms and feet. I decided to go on prednisone after my doctor said it would help rule out autoimmune disease. I will never go on this drug again unless it is life threatening situation. It is a very nasty drug and my family has had to live with me during this difficult time. I'm leaving my condition up to the Great Physician!

-- By twinkles | Reply | Private Message me

August 8th
2008
10:49 PM

My husband initially took Prednisone after getting strange lesions, severe joint pain, severe fatigue and severe stomach cramps/nausea. It worked great he was tapered off and no problems for about 18 months. Then he go sick again (2/08) and has been up and down on Prednisone for 7 months- currently taking 60 mg. daily. Some doctors think he has Wegener's, but testing is inconclusive (Wegener's starts with upper respiratory stuff, which he also had). His mood swings are severe and he's a different person, twitching, hand trembling, muscle spams, malaise, anxiety/depression, very fatigued, insomnia, severe stomach cramps/vomiting. How do you tell which symptoms are the Prednisone and which are the disease process? They want to taper him to make him sick enough to get some test results that show organ damage or something, but everyone chickens out and he ends up getting increased. How long should he be on Prednisone and not be put on something stronger?

-- By sonjajazz | Reply | (3) replies | Private Message me

August 4th
2008
2:38 PM

hi all. thanks for writing your comments here. it has helped me today, another HORRIBLE day of prednisone hell. i have been seriously ill for 8 months been told ever other week I'm likely going to die from lung disease (i'm 35) and after a painful lung biopsy have been told my lung problems are almost all reversible... after a year on high dose prednisone. i was on 40mg a day for a month a while back and was so out of control from rage and crying and insomnia and panic/suicidality, ravenous appetite, that they lowered me to 30. then after biopsy they said i should be on 100mg to cure me, we settled at 60mg. it's been 24 days. The moon face started about one week in. i've gained 8 lbs. i am an emotional wreck. i have at least one rage filled attack per day where i am screaming and want to kill somebody or destroy something. some days i am so filled with hopelessness and worry i just want to die. my body changes (after just losing 30 lbs and being a work out fanatic my shortness of breath makes it impossible to walk up 2 flights of stairs without resting) face changes, acne, excess body hair (oh my god please make it stop i'm like a chia pet and i'm so afraid it is going to get worse) double chin, puffy eyes and cheeks, absolutely uncontrollable emotions and mood swings, inability to be logical or reasonable. i don't want to leave the house, i'm panicked and scared all the time. i never sleep. ambian gives me minimal relief (just started taking it) i feel like i'm losing everything, except my lung functioning is returning and i'm not going to die from this illness (they assure me THIS week) i understand light at the end of the tunnel, but living like this is unbearable most days, almost impossible the rest of the time. am i alone with the severity of this? or are all the others like me too busy hiding the sharps and crying in a corner to write on this board? thanks for listening :)

figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.
figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.

-- By sobbinghulk | Reply | (8) replies | Private Message me

July 29th
2008
6:11 PM

Thank you so much for your website. I cannot begin to tell you what this drug has done to ruin my life.

I had been on it for over 4 years on a misdiagnoses (Never should have been on it) and was told
“It was no worse than Tylenol.” Ok I thought as I was suffering from a few swollen joints every
now and then but was fine otherwise.

Then one day I was working and someone noticed my face was swelling. I looked in the mirror and
low and behold my face was rubbing my glasses. I asked my doctor and he said “it will go away soon.”
I am very athletic so I continued to run and work out as I slowly went from a 30” waist to a 50” inch waist!!
People at my office thought I was on a food binge like no other. My wife was stunned on how fast this
happened as was my family. Now the problem had gotten much worse. Constant body aches and swollen ankles.
After a year I went from jogging, to walking, to using a cane to using a walker…how sad my family felt
for me and no friends insight. my company then laid me off as I used the walls as a walker and simply could
“perform up to par.”

Next came the extremely high sugar, blood pressure, Glaucoma and I suddenly noticed I was having problems
seeing. Went to the eye doctor and was told I was getting cataracts but it would take a couple of years to form.
90 days later I could not drive and could barely see in both eyes, now I was almost blind.
Now 80lbs overweight almost blind with Glaucoma, high blood pressure, diabetes and cataracts. not to mention severe depression and mood swings that were unbearable, and yes still using a walker from severe muscle pain.

Well the time came where I lost my health insurance and was unemployed. I was out of Prednisone
one day and called my doctor. He said come in for $320.00. I said I didn’t have it and pleaded for them to call
in a 30 day supply, I was told that they “weren’t a charity” and “go to the emergency room” click!! My wonderful
doc was gone. Well I went to the emergency room the next day and was told “they don’t give refills.” I had been
off prednisone for a day and as some people know if you stop that high of dose for that long you may die from
adrenal crisis. So I stood in the emergency room for 12 hours waiting to go into this crisis! Finally a nurse convinced
a doctor to see me for 30 seconds, gave me a refill and a list of welfare clinics and booted me out the door. They
hated my appearance and hated me for no cash.

One day I decided to end this nonsense and tread everything I could from sources I hadn’t read that were very old
regarding what was wrong with me. I went on self imposed diet of 1000 calories a day and lost 60 lbs…yes!!
I stated weaning from the Prednisone and took a ton of supplements I had read about. I got down to 7.5mg every
other day. Yes, suffering tremendous total body aches, severe mood swings, dizziness, severe hunger and
confusion but I plowed though. By the way I don’t recommend this but I couldn’t get a refill for a prescription from anyone
because I ‘had made to much money.” So I turned to the Internet for everything. I bought 500 5mgs for $23.00 screw the doctors I don’t need their prescriptions. I am now totally off for 6 weeks I do have some bad stiffness, muscle aches and mood swings but after 4 years of pure hell I am truly thankful to be off this dangerous drug, it ruined my life.

So I went to a new Doctor finally and my diagnoses was a food allergy and simply had a small stint of bursitis a total mis- diagnoses from my first Doctor! Doctors aren’t gods so take it from me trust yourself first and do your research.

My prayers to all who suffer from this drug. Damn the incompetent doctors who wrongly prescribe it!

Dan

PS Does anyone know how long these severe body aches last after completely stopping. Its been 6 weeks and its just a little better. My doctor told me to fight it out or get back on pred. NO WAY!!

-- By ddeboer | Reply | (2) replies | Private Message me

July 29th
2008
6:08 PM

Thank you so much for your website. I cannot begin to tell you what this drug has done to ruin my life.

I had been on it for over 4 years on a misdiagnoses (Never should have been on it) and was told
“It was no worse than Tylenol.” Ok I thought as I was suffering from a few swollen joints every
now and then but was fine otherwise.

Then one day I was working and someone noticed my face was swelling. I looked in the mirror and
low and behold my face was rubbing my glasses. I asked my doctor and he said “it will go away soon.”
I am very athletic so I continued to run and work out as I slowly went from a 30” waist to a 50” inch waist!!
People at my office thought I was on a food binge like no other. My wife was stunned on how fast this
happened as was my family. Now the problem had gotten much worse. Constant body aches and swollen ankles.
After a year I went from jogging, to walking, to using a cane to using a walker…how sad my family felt
for me and no friends insight. my company then laid me off as I used the walls as a walker and simply could
“perform up to par.”

Next came the extremely high sugar, blood pressure, Glaucoma and I suddenly noticed I was having problems
seeing. Went to the eye doctor and was told I was getting cataracts but it would take a couple of years to form.
90 days later I could not drive and could barely see in both eyes, now I was almost blind.
Now 80lbs overweight almost blind with Glaucoma, high blood pressure, diabetes and cataracts. not to mention severe depression and mood swings that were unbearable, and yes still using a walker from severe muscle pain.

Well the time came where I lost my health insurance and was unemployed. I was out of Prednisone
one day and called my doctor. He said come in for $320.00. I said I didn’t have it and pleaded for them to call
in a 30 day supply, I was told that they “weren’t a charity” and “go to the emergency room” click!! My wonderful
doc was gone. Well I went to the emergency room the next day and was told “they don’t give refills.” I had been
off prednisone for a day and as some people know if you stop that high of dose for that long you may die from
adrenal crisis. So I stood in the emergency room for 12 hours waiting to go into this crisis! Finally a nurse convinced
a doctor to see me for 30 seconds, gave me a refill and a list of welfare clinics and booted me out the door. They
hated my appearance and hated me for no cash.

One day I decided to end this nonsense and tread everything I could from sources I hadn’t read that were very old
regarding what was wrong with me. I went on self imposed diet of 1000 calories a day and lost 60 lbs…yes!!
I stated weaning from the Prednisone and took a ton of supplements I had read about. I got down to 7.5mg every
other day. Yes, suffering tremendous total body aches, severe mood swings, dizziness, severe hunger and
confusion but I plowed though. By the way I don’t recommend this but I couldn’t get a refill for a prescription from anyone
because I ‘had made to much money.” So I turned to the Internet for everything. I bought 500 5mgs for $23.00 screw the doctors I don’t need their prescriptions. I am now totally off for 6 weeks I do have some bad stiffness, muscle aches and mood swings but after 4 years of pure hell I am truly thankful to be off this dangerous drug, it ruined my life.

So I went to a new Doctor finally and my diagnoses was a food allergy and simply had a small stint of bursitis a total mis- diagnoses from my first Doctor! Doctors aren’t gods so take it from me trust yourself first and do your research.

My prayers to all who suffer from this drug. Damn the incompetent doctors who wrongly prescribe it!

Dan V

-- By ddeboer | Reply | Private Message me

July 22th
2008
1:21 PM

Hi all. I would just like to agree that PredniSone sucks but it is the best out there for these diseases especially the auto-immune diseases. Drug companies do not make any money on prednisone because it is generic and there is no patent. I know I picked up 98 10mg prednisones yesterday for $5.00. Believe me when there is a better steroid that works as well and has less side effects it will be available to us all. It will cost tons but it will be sold. Researchers have been working for so many years trying to find an alternative, some have been found but do not work well enough. As bad as the prednisone makes us feel it does work on the diseases. You always have the choice to say no - that is why we should all have a health care power of attorney - just remember that when you decide not to take the prednisone you are agreeing that the disease may worsen and may be life threatening. I hate to sound so morbid but patients must be informed. When you are at the physician ask about the side effects, ask if they can give you something to counteract any mood swings, ask what lotion is best for the itchy skin (AmLactin works well for me and is over the counter). Also, my physician advised me yesterday that the side effects are worse on women due to our precarious hormones. I have told my husband to just stay out of the way and don't piss me off because I am not sure how this next 7-8 weeks is going to fare for him. I am 4ft 10in 110lbs and he is 6ft 1in 200lbs and believe me he is scared for his life. I am using prednisone for my ulcerative colitis so now that I am feeling better physicially I can return to exercise and that has definitely helped. So has turning up the music really loud and dancing and singing poorly. Yelling at the tv helps me whether it be politicians, soap operas or idiots on game shows who get the wrong answers. I also have been keeping a journal of all the rage I have and what kinds of things I could do to people who keep getting in my way at the store, on the road, in line at the pharmacy - I guess I need to put that in a safe place so it can't be used for evidence :}

-- By maryrn | Reply | (7) replies | Private Message me

July 12th
2008
3:56 AM

im a 20 year old male who was given prednisone to reduce the inflammation around my spinal cord in my neck from a herniated disk. 60MG in the morning for 4 days and 40MG in the morning for 3 days...... no real weening process which im seeing probably should have been administered. while i was on it the mood swings were nuts and i noticed feeling muscle weakness and joint pain along with the occasional burning or tingling. ive been off it for 6 days and now the muscles in my legs and feet twitch and im still crazy in the head with little sleep and sinus headaches that don't quit. how long does this shit go on?

-- By chocloasauras | Reply | Private Message me

June 30th
2008
10:42 PM

My Dad is 75 years old has been in and out of the hospital because of exasperations brought on by COPD. He is fine when he gets out of the hospital with 40mg of Prednisone then like many others tapers to 30mg, 20mg then 10mg until he isn't taking any. Then the exasperations start he's back in the hospital and the Prednisone cycle begins again. I have notice he has mood swings as he has become very irritable. He also use to work out with light weights ever morning, he no longer has the desire. He also use to go for walks, in the park treadmill etc. he no longer does those activities either. I also notice his eyes look different. I realize this drug is keeping him alive, but he has become a different person.

-- By confusedson | Reply | (1) replies | Private Message me

June 4th
2008
9:53 PM

I had been on a prednisone dose pack (not too strong??) about a month ago for a neck injury to take away some inflammation. No side effects to mention and my neck felt tons better. Yesterday I went back to my dentist after 5 days of pain from a root canal. He put me on a prednisone dose pack saying there was some inflammation in the bone, very common, and the prednisone should take care of it. I took my dose yesterday, didn't sleep well (common side effect it seems) but then today my heart is racing and feels like it skips a beat. I have read this happening to folks on much higher doses, anyone have this kind of side effect with 20 mg/day?

-- By jamse123 | Reply | (4) replies | Private Message me

June 2th
2008
10:58 AM

im 22. was diagnosed with dermatologist in November. its an auto immune disease...inflammation of the skin and muscles..been dealing with this for like 8 months now. been on prednisone through all of this the whole time. seems like it might have made my muscles better but does nothing for my rash really. i hate being on steroids. i never know how im gonna feel everyday. major mood mood swings. i was on 60mg ive moved down to 20mg a day now. i still have all the stupid side effects. hair on side of face, arms and back..swollen face..acne..and i now have stretch marks..i hate it and cant wait to get off of it. wish i was never on it.

-- By cattyo8 | Reply | Private Message me

May 8th
2008
3:27 PM

I started prednisone last week because of an allergic reaction I had to I dunno what (yet). I started with a solumedrol shot, followed 12 hrs later by a kenalog shot, followed 12 hrs after that by oral prednisone q 24 hrs. The 'fog' is fucking horrible; I can't think straight. I'm at the end of a medic class and have finals this weekend - and I'm scared that I'll be in the middle of a fog during the exams and will fail miserably.

It's unlike anything else I've experienced. It's not a drunk or stoned feeling, it's literally like I've lost cognitive ability and cannot process information. For instance: I wanted to make some tea and forgot how to turn on the kettle.

Does anyone else experience wild mood swings? I'm not normally a tearful person, but the past few days have seen me crying uncontrollably for no reason whatsoever - and this morning, I started laughing whilst I was crying and just couldn't stop. My family think I'm losing my mind, and were I not taking prednisone, monteluklast and fexofenadine I'd agree with them. As it is, I feel somewhat reassured that it's the medications that are causing these symptoms, but holy cats, is it ever weird to feel this way.

I feel so bad for you folks who are faced with the prospect of long-term cortico-steroid therapy. If any of you would like to talk, please contact me at ****** .

Good luck, y'all!

-- By dharmagirl69 | Reply | (1) replies | Private Message me

April 23th
2008
11:27 AM

I have been diagnosed with Crohn's. I have been on Prednisone since 1992. I have the shakes, excessive sweating, moon face, exhaustion, teeth falling out, mood swings. This ' wonder drug' must not be prescribed arbitrarily and doctors must sit down and council patients properly when they have to take this drug over a long term.

-- By andreowilliams | Reply | Private Message me

April 16th
2008
1:33 PM

I have taken Prednisone several times for allergic reactions.The main side effects I have encountered are 1.Shakiness 2. mood swings 3. anxiety-mild depression 4.upset stomach 5 rapid heartbeat.6.insominia. To counteract the anxiety, moodines, insomnia I take benadryl. I talked to my pharmacist and she said Benadryl is ok to take with Prednisone- you should still talk to your Doctor or Pharmacist. The Benadryl takes some of the edge off of the prednisone. As for the upset stomach I just make sure I eat before I take the Prednisone.

-- By jefferyf | Reply | Private Message me

April 14th
2008
2:59 AM

I was put on Prednisonsone for Uveitis, inflammation of the eye. He started me on 20mg at 9 pills a day, then each week it was lowered to 6 pills then now i'm on 3 pills and then next week it will be 1 1/2 pill and i'll be off. I got the puffy face, my feet swelled, everytime i hate my stomach bloated and hurt, my face and neck turns red, i stayed hungry although i fought the temptation of eating for not wanting to gain a lot of weight, which I don't think I've gained any. But now I wake up in the middle of the night and severe knee pain, it feels like my knees they are in some kind of device that is crushing my bones they hurt so bad. i caught a bad cough and it's been around now for about 2 weeks and won't go away, i told the nurse about it and she says, i probably just got what everyone else has gotten, just a bad cough, well what's if it's some kind of infection? I look like a chipmunk, my face is so puffy. When i get off these prednisone in another week I WON'T BE going back on them, no matter what the case. I'm in more pain being on them and have more side effects while on them than the problem i was having with uveitis. I think some co workers thank I'm over reacting, but they're not here they don't see all the pain and frustration i'm going through while on this drug. The leg pain just started this weekend and i Know i can't deal with waking up everynight like this in severe pain. Everyone just makes me feel like i'm over reactin and it's nice to know that somebody out there is going through the same thing. Any comments will be great.

-- By tonyas | Reply | (13) replies | Private Message me

April 13th
2008
5:48 PM

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!!

-- By vanygirl | Reply | (5) replies | Private Message me


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