October 28th
2009
3:56 PM
Hi all, im so glad i found this site as many are too. Im 22 years old and was diagnosed with colitis at 14 and was put on 40 mg of prednisone to combat it. I can honestly say it generated the worst time in my life.. I went back to school and was overwhelmed with massive panic attacks feeling like my heart was gonna rip through my chest. Big moon face etc. I recently have had an attack and was put back on steroids its always my last last resort. I just feel very detached and anxious all the time constantly feel like im lost. I am now in the process of stopping them first day without 1 and I feel as explained. The worst thing is that no one seems to understand the effects, they cant understand why you'd rather be ill than go through with them. its not good for you on the whole. Good health is the unity and prosperity of all aspects; Body Mind Soul. Hope the best to all.
-- By subsypher | Reply | Private Message me
October 26th
2009
12:09 PM
Hello I am 40 yrs old and got a lung infection which cause swelling in my lungs so the put me on high doses of prednisone via IV for 21 days in the hospital. The drug saved my life and took it at the same time.
After I got out of hospital i was on 60 mg for 6 weeks the 30mg for 6 weeks then 20mg the 10mg. It has been a living HELL over the last 5 months or so.
I told my DR. i have very bad blurred vision and he said it because the med runs my sugar up but I check my sugar and limit my sugar and it around 100 all the time which is normal soits not sugar. Then he said well them you need to see an eye dr. cuz your eyes are going bad. I begged to differ with him and told him if there was something wrong w my eyes then why is is one day I see fine and the next day all blurred and then back to normal!? it this stupid steroid if you ask me plus on day my right eye is bad and next day my left uggh!
The WORST side effect it the brain fog as yall call it. OMG I feel like im loosing my mind and going crazy. The dr. says hes never heard of such with a wise remark and says you know where your at now right? I know where i am and what I say but I feel like its not really happening. Its like im dreaming it. I feel like Im trapped in my head and I lookout blurry eyes.
Before I was a very confident independent person but now I feel scared all the time i feel hopeless and ive went through 3 girl friends over the summer because of the extreme forward attitude the med gives me. I am not the same person I was. I some time just want to die. I'm extremely tire if i do any exercise at all.
Plus I have all the other typical side effect like the moon face and weight gain. I don't even look the same cuz my eyes have huge bags under them and a double chin I never had.
I feel for all of you because i know what your going through.
I saw one comforting post in here where someone said within 2 weeks of completely getting off the pred. he was his normal self.
I CAN TELL YOU HOW GLAD I WAS TO READ THAT!
Please if you have finished the med and have got back to normal don't forget about this post. Please let us know because we need any hope we can get to keep our chins up and not loose hope and go completely crazy or worse kill ourselves.
I have about 4 more months of this LIVING HELL and I will surely let you all know if it get better. If you have come off of it and are reading this PLEASE let us know if we get back normal at least w the brain fog. I can take all the side effect ok except for the crazy dream zone zombie feeling.
I WOULDN'T WISH THIS KINDA HELL ON THE DEVIL HIM SELF!!
Let's pray for each other that the Lord keep out minds strong until we get off the nightmare drug call Prednisone.
side effects:
brain fog, blurred vision, puffy eyes, depression, confusion, dizzy, moon face, buffalo neck hump neck, hopelessness
October 22th
2009
6:45 AM
Hey Guys,
I'm new to all this but just wanted to share my story with everyone so I feel like i'm not so alone! I'm 23 and was diagnosed with SLE 3 years ago.
It started in my joints and then moved to my kidney's real fast. I now have stage 4 nephritis, finished 6months of cyclophosphamide in Feb and have been on no less than 40-20mg of pred for about 2years. Just when things were starting to look better it has stared in my blood so they are trying to up my dose again. It has thinned my bones so I am on special meds for that now too.
I know taking the pred is something I need to do to live but it comes at a really high price. I don't even look like the same person I used too because of the moon face. I know it's shallow but at 23 it is almost as bad as having to live with this disease. I now have really low self esteem and get anxious all the time, which is affecting my job. As much as I want to come off I also worry that I would have to stop work again as the pred is what keeps me going. All I want to do is get off it though! Anyone know any alternatives? Also, just wondering if you guys are still drinking alcohol while taking pred?
Thanks for listening guys!
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
October 2th
2009
3:14 AM
I've been prescribed Prednisone since April and just recently experiencing hair loss (I'm Female)
-- By celinestuckey | Reply | (2) replies | Private Message me
September 24th
2009
7:02 PM
I have been taking prednisone for three years now and I love it. When I am off of it I cannot breath and I get fluid in my lungs and my arthritis comes back and I ache all over. I could not live without it. The only side effects I have is a little weight gain, sweating, and moon face but the side effects are better than the all over acheing and not being able to breath. This drug has been very good to me.
-- By foxylady628 | Reply | (2) replies | Private Message me
September 13th
2009
7:47 PM
I had a bulging disk and a pinched nerve and was put on PREDNISONE - 60mg for 5 days, then 40 mg for 5 days and then 20 for 5 days. I had a round face to begin with, which I always hated, but now, my face just looks like a balloon that someone painted a face onto. I have a huge face, a double chin, huge stomach, I look 5 months pregnant and I absolutely HATE myself on this drug. I've been off now for a week and nothing has subsided except the sweats -- very embarrassing! I work and in the middle of a meeting, I sweat so badly that it rolls off my giant red face in rivulets. I'm just miserable. Does anyone know how long it takes to get rid of the side effects of this demon-drug?? I want to stay in the house and hide.
-- By mare826 | Reply | (1) replies | Private Message me
August 3th
2009
12:37 PM
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.
-- By trucker | Reply | (4) replies | Private Message me
July 14th
2009
11:34 PM
I just learned that you can develop Cushing's Syndrome from taking prednisone, and that the doctor that has you on this should warn you that you could develop this. 10 mg a day usually worked for my pain, but I eventually got up to 20 mg a day, and that's when my problems really started. Of course I had already gained enough weight, which caused severe depression, but then I started gaining like crazy, and this is really weird, I was eating less, and had no appetite, but still gaining weight. I started feeling too tired to do anything, I have severe lower back pain, and get short of breath from any little bit of activity I do. I can't even take a shower without sitting on the side of the tub to rest. I also started having restless leg syndrome at night and would wake up several times. I sweat profusely without doing anything. I can just be sitting on the couch watching tv and sweat will start pouring down my face. I keep a towel with me at all times to wipe the sweat off. I definitely have moon face, and I also have sores all over my legs and face. I wish I would wake up and it was all a bad dream, but not so. I feel for everyone that has had these experiences. I am seeing an endocrinologist next week to see if I have Cushing's Syndrome. I don't even know if there is anything to do for it? Has anyone else who has used prednisone been diagnosed with Cushing's Sydrome?
-- By lawhear | Reply | (1) replies | Private Message me
July 13th
2009
11:13 AM
I have been on prednisone for 8 weeks, the first two at 40 mg., then 30. I have sarcoidosis and had a cough for several years, then shortness of breath, a fever for three weeks, very low energy, headaches every day, vision problems, mental fuzziness, fatigue, leg cramps, weight loss, a host of symptoms that were impacting my life. With the prednisone, I have had some jitteriness and occasional insomnia, though not bad. I have had increased energy, clearer mind, no cough, the sarcoid symptoms have almost disappeared. I do have increased appetite and have gained maybe 5 pounds. I occasionally have a day when I have low energy and am depressed, but most often, my energy is a lot better since taking the prednisone. So, for me, prednisone is most definitely NOT a devil drug. In fact, I believe that thinking of it this way is very harmful both to the person thinking that way and to others who come to this site looking for help. It is helpful to know that there are other people having similar problems to yours. But focusing on all the negatives without acknowleging the vast array of positives can only hurt. When I take the pills, I remind myself to be grateful that there is something that can help me fight the sarcoid. When I start being fearful of the side effects (from reading these internet sites), I remind myself of all the many people who have taken prednisone and gotten better and lived a long, good life as a result. My sister-in-law took it years ago for Crohns and loved it. My friend's daughter took it and had a few side effects, primarily the moon face, but it helped her and she now is as thin as ever and doing well. Focus on the positives, people! Where your mind goes, your body will follow. Be aware of the possible effects and work to offset them. Exercise, eat less, find reasons to laugh and be with people. It sucks to have any disease that would cause you to have to be on prednisone, but we are lucky to have medicine and people to help us. Be thankful for what is good in your lives.
-- By notsobadafterall | Reply | 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 5th
2009
1:18 PM
A year ago I was diagnosed with Sarcoidosis and began taking 50mg Prednisone per day. The worst side effects in the beginning were weight gain, moon face, facial hair, hump-back neck, bruising (for example, just by my knees being together while I sleep,) excruciating joint pain and water retention to the point I felt my skin would split open. And poor vision which could have led to glaucoma, but an eye specialist put me on eye drops to reduce the pressure to normal levels. I've felt horrified and embarrassed by the change in my appearance but relieved that my sarcoid was being treated.
I feel confident in my case that Prednisone was the necessary treatment. My pulmonologist, opthamologist and regular doctor all agreed on a course of treatment. But I really advise people to get a second or third opinion before they take it. A friend of mine was prescribed a weeks course of Prednisone for a severe sinus infection. Luckily she didn't have any side effects but I really question if it was necessary. I'd also like to stress that if you're on Prednisone and experience worsening vision, please see an opthamologist who is a glaucoma specialist because it can lead to blindness if not treated.
And lastly, sorry this became a novel! I have been tapering off and I'm down to 20mg. But recently I've noticed my hair is thinning so much. I lose a ton when I brush it and it clogs the drain when I shower. Also my skin is shedding. When I shower and use a loofah sponge like I've always done and I lose layers of skin like a snake. I would really like to know if my hair will start to grow back when I'm finally off the Prednisone or am I going to lose it completely??
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 31th
2009
8:48 PM
I have been on various doses of prednisone on and off for 9 years for a kidney disease. The doses have varied from 70mg to 5mg. I have just about had enough. I cannot describe how debilitating this drug is. Every side effect on here I think I have had except excessive energy. Here is a small list:
Moon Face
Buffalo Hump
shaking like Parkinson
body aches
EXTREME weakness
heart palpitations constantly
joint pain
something would go on with my knees in the morning....it felt like something was boiling. It would be my guess as to what the "Bends" must feel like....it feels like someone is stabbing you in the knees with a knife.
Sleeping at least 16 hours a day
I could barely make everyday at work. It was so miserable to not be able to wake up, I would push myself in 15 minute increments....
You cannot know what it is like to be bed ridden for weeks and to have no doctor understand or believe what is happening to you. You just seem fat and lazy.
I am emotionally scarred by this medicine, there is not a day that goes by that I'm not terrified of having to take a large dose of this again. I just can't.
There is no quality of life at all. You can't do anything.
On top of that, there is no one to talk to, not even a doctor that understands what you are going through.
God help anyone that has to go through this. I understand.
May 28th
2009
10:36 PM
I was diagnosed with Chrohn's in February. I am 25 years old. I was put on prednisone and asacol to control my systems. I was on 40mg then down to 20mg and finally last Friday 5/22 after weening off I was off the drug completely. I also had EN (a complication of Chrohn's) with severe pain, swelling and bruising in the feet and legs. In fact that was the only reason I went to the doctor, I was just dealing with everything for years. With Prednisone I experienced a slight moon face but also a huge bloated, pregnant like belly, it's awful. I have to hide it with baggy shirts. I also gained about 20 lbs, I have abdomen pain, hair on my upper lip, my ear clogs and clicks, insomnia, insane amount of energy. Oddly though people have been saying they are moody, the good thing the drug did was put me in an excellent mood all the time and took away my acne.
My Question: When do these side effects go away, I have been off for a week. Primarily the bloated stomach and weight gain. I know it takes a while, but how long???
-- By cxt6117 | Reply | (1) replies | Private Message me
May 27th
2009
5:12 PM
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.
-- By xxanonymousxx | Reply | (13) 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
April 22th
2009
11:36 PM
Lumps under the skin all over my body and severe pain that feels like it is under my skin--like I've been skinned and the skin just laid back down raw and bruised feeling. I have to take time-released morphine for this pain and no doctor can explain the lumps other than to say it might be a side effect of the prednisone. I have never heard of anyone else having these lumps and skin pain, though. One post I read said their tongue was sore, which mine also gets when I take it.
One thing I want to emphasize is that the last time I read the printout that comes with an unopened new bottle of prednisone and that the pharmacists don't give you unless you ask, it said that the newest research suggests that you take the prednisone only EVERY OTHER DAY. Some symptoms may become a bit worse on the day off, but unless you are dealing with a potentially lethal disease, this keeps your body on its regular rhythm of making its own form of prednisone and thus prevents many of the side effects. I have been back on prednisone for 3 months now with the new one day on, one day off schedule, prescribed by my pulmonologist, and have much less of the side effects--no ravenous appetite and thus no weight gain, no swelling, no "moon face" and my lungs are still functioning much much better.
Please ask your doc about this or get the info sheet from the pharmacist (it is the very long one on tissue paper, not the one-page info sheet they are now giving us with each Rx.)
April 22th
2009
11:27 PM
I started taking prednisone along with Cytoxan, a chemotherapy drug 15 years ago when I was diagnosed with an undifferentiated connective tissue disorder that led to symptoms like idiopathic pulmonary fibrosis. After a couple of years, the inflammation cooled off and I no longer had increasing scar tissue in my lungs (IPF is almost always terminal) so I was glad of that. However, sometime in that first year or so I developed hardish lumps under my skin and severe pain that felt like it was "under my skin" but not my muscles, as in fibromyalgia. The lumps are even more painful, and the skin feels as if someone tried to "skin" me and then just llay the skin back down.
I have had to be on timed-release morphine for years in order to function with this pain, as it is especially painful if I brush up against something or sitting or lying down pressure is intense. Also the skin on my tongue gets so tender I have to use kids' toothpaste or it burns terribly.
After 15 years some of the lumps have gone away, but I've recently had to go back on the prednisone for my lung inflammation.
The last time I got a new prescription for prednisone I read the tissue-paper printout (not the short one you get with every Rx, the one written for professionals which includes all the new data, tests, side effects, etc.) What I want to point out, as I've not read one person saying this, is that to avoid a lot of the side effects and the harm to the glands which produce our own natural steroids, is that they are now recommending that it is taken only EVERY OTHER DAY. They say there may be some slight increase in symptoms on the "off" day, but that this keeps the natural cycle in place in bodies subjected to this drug and therefore reduces symptoms.
This is what my last pulmonologist prescribed for me and so far I have had minimal side effects--no ravenous appetite and weight gain, no "moon face" and it has still helped my symptoms.
Please ask your pharmacist for the flyer that comes with the new package and read this for yourself and then take it to your doctor. It may not work for those in dire need of the prednisone but could perhaps be tapered to this once the first lethal symptoms die down. ASK YOUR DOC--I cannot believe I have not heard more about this as it's right on the flyer--but docs are so busy, it's understandable. I'm grateful my doctor is up on the new research because I don't mind taking the prednisone this time, and I used to HATE it!
Good living to all and I wish you all the healthiest life possible.
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
March 25th
2009
6:00 AM
Hi...Am 33 years and had been on prednisone for 4 months till about a month ago. It was in June last year that I was down with Viral hepatitis along with pyelonephritis. I was eventually diagnosed with Autoimmune hepatitis and therefore administered this drug with an high of 40mg for two and gradually tapered subsequently.
Two months of medicines and I had this pain in my thighs especially when I had to get up after lying sedentary. After 1.5 months subsequently the pain worsened to now include all my joints including the leg muscles. Things have really become more painful now. The gastroentorologist who put me on this drug has advised me to see a rheumatologist. Now I am torn between trying to understand whether this is a part of my treatment or my ailment (rheumatoid arthritis is also an auto immune disorder) and only praying that it is a part of the treatment.
The Doctor's have not been clear on how long this pain will persist. Regular walking, getting up, getting out of the car, turning the cap of a bottle is painful and getting worse with my ankles and knees swelling.
The moon face, the hump, the acne are all ebbing. However this pain is killing. Anybody has any idea how long the pain will last?
Thank you and best wishes to you.
March 10th
2009
6:59 PM
I was diagnosed with Ulcerative Colitis in Aug of 2005 and in remission for 9 months. I came out of remission in May of 2006 and have been on prednisone since then until right now. I would go on high dose of steriods, try a new medication, and try to ween off and get sick right as I went off the steriods, so I'd have to do this rollercoaster all over again. For a year now, I have been on steady, high doses between 60-100mg daily with no break. I tried to go below 20 and got really sick again and have run out of medication to try, so I had my colon removed. Right now, we are trying to ween me off the prednisone (since i dont need it for my disease anymore) but have to go over 3-4 months and very slowly since I've been on it so long to prevent the body from doing all the fun things it does when you stop prednisone cold turkey, like a coma and stuff. I'm SICK of the side effects this drug has had on me! I have had countless sleepless nights, heartburn, night sweats, weight gain (i went from 140 lbs to 215 lbs right now), the moon face to where i can't even recognize myself, red face, weird skin, sensitive teeth, thinning hair, hungry ALL the time, stretch marks, all the weight is in my stomach, the buffalo hump, high blood pressure and high eye pressures etc. These are all the side-effects that have been horrible on this miserable drug. I'm sure there are a lot more I am forgetting, but these are the ones that come to mind. Hopefully they will go away once I am able to finally get off this drug!
-- By atolo22 | Reply | 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
February 9th
2009
1:17 PM
I was diagnosed with SLE (lupus) when I was 14, I'm 21 now, and I've had to be on prednisone all this while. The dosages alternate between 60mg (the highest) and 2.5mg (the lowest), I just went for a routine check up today and found out that my protein level in my urine is at an all time high. So the doctor is pushing me back up to 30mg of prednisone. Its 2 am, and I am sitting in bed crying because I don't want to have to go through everything again; the weight gain, the moon-face, everything. I know I may sound shallow, because ultimately, the medicine is keeping me alive, but the side effects are terrible. Very few people understand that its not fat that you're gaining, and the remarks that I know I am going to get are enough to drive me insane.Is there anyway the water retention or the weight gain can be stopped or decreased?
-- By tiffanyt | Reply | (5) 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 22th
2009
10:17 AM
I was giving prednisone for only 5 days (not sure about dose, but it tapered to one pill on the last day) for a bronchitis induced severe asthma attack. I have only had asthma twice in my 50 years, both times associated with a bad case of bronchitis. The "doc in the box" reduced his original dosage due to the 3 corisone injections I recently had in my spine. After reading these posts I feel grateful I wasn't on a higher, longer term dose. I have some of the same side effects listed here including uncontrollable appetite, fat gain around the middle, water weight gain, constantly having to urinate, superhuman energy, heart palpitations, and approximately two weeks after finishing, I began to get a mustache (hairs that were previously white became brown over a two week period). I have read on the internet and been told by my pharmacist that this is temporary. I have also read and been told that the 2mg estradiol I take every day since my hysterectomy causes the body to retain and not rid itself of the steroids as it normally would (estrogen is actually listed as drug interaction with prednisone). The doctor in the box apparently just ignored this interaction and prescribed it anyway. However the main reason I am posting is a very strange possible side effect that occurred approximately 1 week after my final dose. I was awakened in the middle of the night with SEVERE pain (felt like bone pain, not muscle) in my right knee that lasted until morning. By mid morning it was gone. The next night I had the same experience but in both knees. It lasted about 5 more days, gradually tapering in intensity, and then just went away. I do have severe arthritis in my lumbar and cervical spine, having had surgeries to repair injuries from a snowmobiling accident. I have normal arthritis elsewhere for a 50 year old, but have NEVER had issues with my knees. Has anyone had this strange symptom? None of my doctors (internist, rheumatologist, physiatrist - who gave me the injections and prescribed physical therapy for my spine) had any explanation. The only explanation I have is the prednisone because I had taken the Z-pac (antibiotic) with no side effects several times in the past. Weird!
Incidentally, I am off the prednisone for about 5 weeks, am still hungry all the time, still fat, still bloated. Unfortunately the extra energy is gone. Best of luck to everyone on this strange drug. My heart sincerely goes out to all of you on long term therapy. God bless.
-- By valinal | Reply | (5) replies | Private Message me
January 19th
2009
6:47 PM
I was on prednisone for about a month with 10mg and I think I have "moon face" because my face looks like it gained weight. Could this have happened from only a month and with such little dosage? And also when does it start going away?
-- By arielplat | 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 31th
2008
10:09 AM
I've known several individuals that have been on prednisone and they changed their diet to counter the side effects of "moon" face & weight gain. In short this is what they did: males, reduce caloric intake to 1500 cal/day by eating five 300-calorie meals a day (every 4 hrs), limiting carbohydrate intake to 30g "net" carbs per day, and limiting sodium intake to 500mg per day. Females, reduce caloric intake to 1200 cal/day by eating four 300-calorie meals per day, limit carb intake to 30g "net" carbs per day, and reduce sodium intake to 500 mg/day. The idea behind the diet is that the frequent small meals will fight off hunger and weight gain while limiting sodium will counter fluid retention.
-- By mp2000 | Reply | Private Message me
December 29th
2008
5:05 PM
For those of you asking how long it takes for the moon face to go away... it was about a month for me after I tapered down to 5 mg. I can never go off of it completely b/c of organ transplants, but don't really have side effects when I'm on 5 mg. Even when I was on 10 mg., I noticed the moon face.
-- By jessica375 | Reply | (1) 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.
December 11th
2008
7:24 PM
I took Prednisone for about 6 weeks for Stevens-Johnson Syndrome brought on by an allergic reaction to Ciprofloxacin. My main complaint on taking it was extreme hunger--not for sweets or junk, but for real food. I was also very moody and I think I must have been really mean to my husband. At the time, I thought I was being reasonable, but looking back, I can see I wasn't. It kept me awake, as well. Without the Prednisone, I might have died, because the extreme, constant itching with the Stevens-Johnson would have driven me completely nuts. My main complaint is that almost two months after quitting taking the Prednisone, I continue to have a moon face, facial swelling, and holding water elsewhere to the extent that I can hardly tie my shoes or even breathe. I would have expected that to get better by now instead of worse.
-- By fiddler | Reply | (2) replies | Private Message me
December 8th
2008
11:41 PM
I too have eosinophilia pneumonia and have been on Prednisone for over two years. Doctor told me he had not seen a case of EP since the 1980s but as of last week he has now had five cases of the disease with no explanation as to why. After determining my condition was not parasitic he started me out on 60mg and then I tried to wean myself by dropping 5 mg every two weeks but to no avail. This continued for at least 18 to 24 months until I decided I would try to drop by 2-1/2 mg every four weeks and am now down to, as of today, 5 mg. Walked four miles this afternoon and did experience some wheezing but didn't feel like my lungs were going to explode so I consider this success. Have this wired moon face that makes me look like someone I don't even know but have been pretty lucky to maintain a constant weight with a starvation diet. Am hoping I am able to continue at the 5mg and lose some of these terrible side effects but don't know how long it may take. Last time I was at the doctor's office and in a desperate state, he prescribed (he continues to research all options and some alternative methods to provide relief) Stromectol tablets which is used to treat parasites but is the active ingredient in the treatment of heartworms in animals. Once I determined the side effects did not outweight the potential benefits I took the one dose treatment and maybe, just maybe, it is helping. Only time will tell. Can anyone tell me if the length of time on the treatment is a determining factor for how long the moon face and other symptoms will last.
Hang in there and hopefully we can help each other through.
-- By pridgenm | Reply | (1) replies | Private Message me
December 4th
2008
10:53 AM
I have been on prednisone continuously now for 15 years. I was put on it in March of 1995 for a lung condition called chronic eosinophilic pneumonia. I was 122 pounds when I first started prednisone. Now 15 years later I am 197 pounds. I am 35 years old with osteoporosis. I have dealt with depression, terrible headaches, stomach ulcers, hormonal imbalance, hair loss, swollen feet and ankles, I now wear glasses when I didn't before, I have thin skin now that looks older than my 35 years, I deal with night sweats, and in the summer out in the heat my very round moon face turns red as a beet. But, no one can get me off the prednisone. I have seen many specialists, and within 1-2 days of starting to wean past 10mg I get so sick I have to be hospitalized, I literally can't breathe or live without it. I hate this stuff and what its done to me, but I have no choice but to take it or I will die. Doctors have tried alternate medications, nothing but prednisone works. If there is ANYONE who has had to be on it as long as I have or have had success in getting off it after being on it for so long, I would love to hear from you.
-- By belladonna15533 | Reply | (4) replies | Private Message me
November 2th
2008
12:48 PM
I have been on Prednisolone about 4 times in recent years. the highest dose was last year when i was on 80mg reducing weekly by 5mg. I have had most of the side affects you all talk about above. I have severe colitis so the side-effects of this drug are something i have to put up with. at the moment i have all the classic side-effects i usually get, rapid hunger, swelling to my face (moon face), neck has layer of fat, swollen back (buffalo hump), bruising easily, horrible taste in my mouth, swollen stomach. the one good side effect is it gives me lovely smooth skin lol. anyway the point of my post isn't to rip this drug appart as i have to say for me its a wonder drug and this time has prevented me from having my bowel removed! from personal experience once you finish the steroid treatment after a few weeks you'll notice the swelling go, my hunger usually fizzles out quite quickly (altho i have a large appetite in the first place!!) none of the side effects are permanent, so please all rest assured you will go back to normal just try not to put on too much weight while on the drug.
-- By shrinkinviolet | Reply | (2) replies | Private Message me
October 31th
2008
10:08 PM
Started with a Pred pak for a sinus infection. Made my heart race and had tach and early heartbeat, which kept me from sleeping. Went to Cardiologist. Several doctors denied that the Pred would cause the rapid heartbeat. Then the Cardiologist did an echo and found a pericardial effusion and some weird spots on my lungs. They suspected lung cancer which may cause the effusion, so I had surgery to do a pericardial window and a lung biopsy. Then a pulmonologist decided to put me on Pred again...steady dosage...because she didn't know what else to do. (Didn't have lung cancer) I didn't have any more funny heartbeats, so maybe the pred didn't cause it after all. But I've gained 40 pounds. My hair has grown faster, and I've gotten some facial hair (not supposed to have that, being a female)...which I call fur. Moon face with cheeks that are hard, muscle cramps, can't sleep, but once I do go to sleep, I can't wake up. Tired all the time, headaches, joint pain-sometimes severe, dry skin, generally bad attitude, with very little patience, low potassium levels which add to my muscle cramping problems, difficulty swallowing, indigestion which I've never had, with painful and burning reflux. And occasionally when I eat, I have the rapid heartbeat again. I go in search of food like I'm going to store it in my thighs for winter. Anything you eat will turn to fat, including protein. Can't wait to get off this stuff which will take until June of next year. Then my doctor says it will be 3 months before all these effects wear off. No one told me I would get fur.
-- By jannski | Reply | (3) replies | Private Message me
October 28th
2008
12:05 AM
i have been on prednisone for 5 years off and on and he moon face is there the hair loss the weight i really want to come off it so bad the asthma is a big issue in my life i wish they would come out with a better drug for us asthma patients the withdrawals i have been going through are the hair loss i use to have long thick beautiful hair thin face smaller body i am hoping some day i will get it all back
hopeful
October 27th
2008
11:58 AM
I have experienced, avascular necrosis of both hips (resulting in total hip replacements) and avn of both solder (this time it resulted in partial shoulder replacements) Not to mention as everyone else has the thin skin, the weight gain. I have been on prednisone for 8 years - it is part of my immune suppressant cocktail that I take everyday. I have been on 4mg for approximately 5 years. It's very hard to lose the extra weight, the moon face lessens after a time but it is hard to tell because of the weight gain.
-- By carps08 | 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 10th
2008
12:58 AM
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!!!
-- By linn | Reply | (4) 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
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 15th
2008
2:18 PM
How interesting to find this site! I, too, was diagnosed with temporal arteritis on February 29 (no more leap years for me!). Because I was already blind in one eye (had no idea) and losing sight in the other eye, I was put on 100 mg daily of prednisone. I had no idea of what I was in for. Since that time I have been able to taper down to 42.5 mg daily, but I don't think I've missed a single side effect. Horrific headaches. A 25-pound weight gain so rapidly it was unbelievable, moon face like I've never seen, was thrown into diabetes right away. My blood pressure went haywire, my cholesterol went haywire (had never had problems with either of them). I think I agree that the most debilitating has been the muscle weakness and leg cramps. I have no balance, have had 3 serious falls. The latest is my skin is breaking down and I'm losing my hair. What hair I have is like somebody held a match to it and frizzed it. I'm short of breath, keep trying to exercise and it's like climbing a high-altitude mountain. Swelling of my feet to where I can wear NO shoes except for Crocs in about three sizes bigger than I ever wore in my life. Now I have a liver problem, am being sent to an "ultra-specialist" for this. The good news is that my remaining eyesight has been stable, and I am very thankful for that. I have been assured by multiple specialists that I would have been blind by now if not for the prednisone. Although it is very difficult for me to read by the time night arrives, and that was my chief "hobby." The other part of this whole sad saga (ha) is how much money my husband and I have been out this year -- unbelievable. Lab tests or doctors every single week and sometimes every single day. I am now under the care of 5 different specialists (ophthalmology, rheumatology, cardiology, hepatology and internal medicine), and it has been so incredibly expensive. This is even with fairly decent insurance. I have been told that I have at least six more months to go on this treatment, and then possibly another year on methotrexate. Thank God I have NOT experienced the depression that seems to be a common thread here. I am trusting in Him to get me through this itme and to come out on the other side completely cured. But it does get difficult in the meantime.
-- By dblackstock | Reply | Private Message me
August 13th
2008
12:27 PM
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.
-- By catzmommy | Reply | (6) 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.
July 16th
2008
4:38 PM
I have been on prednisone since November 2007 for minimal change disease, 65 mg, in May I started to decrease the dosage (per Drs. orders) and by the time I got to 15 mg all my symptoms came back and I swelled up again. I was again put on a higher dosage of prednisone and put on Cytoxan 75 mg. I am now decreasing prednisone, back to 15 mg every other day and will be off Cytoxan next month. Hopefully this will work. Right now my main complaint of side effects is chest pressure, anything I eat or drink makes my stomach swell and I feel like I can never take a full breath. I recently had chest and abdoman xrays and an ultrasound, all negative. Does anyone have this symptom? I also have moon face, weight gain, hump on back, insomnia, headaches, digestive problems ,shakes, night sweats, vision problems, extreme tiredness and hair loss. How long before all this goes away?
-- By looboo | Reply | (5) replies | Private Message me
July 14th
2008
8:18 PM
PREDNISONE.... a word that is unknown to the naive and despised by the the knowledgeable. Before i begin i want to tell you that prednisone for lack of better word F***ed me up. So heres my story with the pill. About a year ago i was officially diagnosed with Minimal Change Disease, now remember i am eighteen at the time, and was prescribed prednisone to cure the disease. Now being unaware of the severity of the drug and disease i casually continued life while taking 80mg per day of prednisone. Well this was good and all because it did in fact put me in remission, but the side effects were starting go surface. My face ballooned up "moon face", started experiencing random series of depression, became insomniatic, and unfortunately gained several pounds. Well this was not the end of side effects as for me. I continued with the medication and after 6 weeks of 80 mg i began my 5 week course of 60mg. Then after that i started 4 weeks on 40 mg and began tapering 5 mg every 2-3 weeks afterwards. Toward the middle of 60 mg the drug started taking its toll on my body as my skin lost its elasticity so i started getting gruesome strecht marks all over my body. I also became constipated for whatever reason most probably prednisone was at fault. I became very frightened actually terrified so i started to research about the drug in hopes of finding ways to avoid some side effects. In doing my research i found out very disturbing information regarding prednisone. Along with all the side effects that i mentioned above, prednisone also causes cateracts, glacoma, diabetes via insulin resistance, and osteoporosis. Now these i consider as the more severe permanent side effects as the list unfortunately is much longer. Finding out about the side effects i became extremely paranoid and started a very strict diet to hopefully avoid some permenat side effects. I admit reading about the information on prednisone created my paranoia and/or possible phycosis which ultimately led to my stress which led to my severe depression. Now this wasn't any old type of depression, i was sersiouly in need of some help. Everyone around me could tell something was wrong and really i dont blame then for in fact i felt as if my soul had died, the very essence of my being. Now magin if you can someone taking away your youth from you, sucking the very life out of you... thats exactly how i felt. To add along with the depression my grades became a wreck in college as i dropped several classes, lost a friend, developed problems with my parents as they tired to help me, and disrespected family relatives with my uncontrollable mood swings. A few weeks in of dieting and exercising i lost a lot of weight (15-20 pounds). As far as side effects non had changed i still had to deal with all that was mentioned above especially with the fragile skin that was a real burden as i had even a few stretch marks on my face from sleeping on my side. At this point of my long and what seemed to be a never ending journey i become exteremly weak. My body had no energy to run on as i refused to eat and when i did eat it was either foods that are considered free foods or protein nothing else. Everything at this time had been taken away from me including smoking marijuana (marijuana drops blood sugar as this would cause me to start feeling faint and lightheaded), alcohol (same as marijuana drops blood sugar), and the fact that i was not comfortable in my own skin (literally). I was driving myself insane. Everyday i was behind the computer searching for more and more. I was obsessed and became my worst nightmare. Oh by the way half in the medication therapy i showed 1+ grams of protein in my urine which my doctor possibly thought it could have been a relapse. This news i did not take lightly i had lost it and was prepared of comiting suicide. I cant lie, i really did not want to live anymore i just wanted to end this and suicide seemed like a very real and convienent possibility. If it had not been for my parents talking to me giving me a 3 hour speech and lecture i do not know what i would have done. Suicide at that point became out of the question because i could not do this to my family. So i went and purchased urine dip sticks to monitor the protein. The doctor had given me a 2 week window or chance to get back into remission or else he was going to prescribe me cytotoxic agents aka chemo therapy drugs. This was horrible news to me. So as i monitored my protein i found out of a very interesting trend. I noticed that my protein levels in the afternoon were in fact positive for protein and were usually up and down as far as how much but in the mornings i noticed i was always negative. Now this give me a huge bit of hope because when in researching about MCD months earlier i found out that there is a coniditon called orthostatic proteinuria which affects mostly young adolecent males and is a condition described as for some unknown reason there is protein loss in the afternoon when the person is upright and active then when they are supine or laying down the kidneys do not allow any portein loss. This condition is in fact harmless. I was very happy from then news and i told my doctor, he was somewhat doubting, but i don't blame him he is looking out for my best interest, but sure enough after the 2 weeks had past i went in again for my appointment after testing and i was negative for protein as i had expected. We began tapering after that point and i continusouly monitored my own tests at home and eventually i got off the steroid, actually today is that day after a 9 month period of heartache and distress. You know people say that they went to hell and back in a hard moment in life, well i went to hell stayed there for 9 months then came back. I feel so everyone who as ever needed to take steroids for long periods of time, i know its tough but believe it as it is indeed a potent drug and in most cases a miracle drug. It gave me a second chance at life and no matter how hard it was or how much pain it put me through i cannot complain for it did in fact cure me and thats why i can never hold any grudges. So thats my story i kno its not pretty but what can i say it is indeed mine whether i like it or not.
-- By mrs0me0ne | Reply | (1) replies | Private Message me
July 5th
2008
1:21 PM
I started taking 80mg a day for a rash I developed after the Celestone didn't work. This has been the worst hell I have ever gone throught, I would much rather have given natural birth. 80mg a day for 5 days, 60mgs a day for 5 days, 40 mgs a day for 5 days, then 20, and 10 for 5 days. I am on the3rd day of 40 mg. My face is so swollen. I have had to cancel social events as I cannot even carry on a decent conversation. The nervousness is over whelming. I cannot work . I come home and drink alcohol to take the edge off, which the affects are greatly exaggerated, but no hangover in the morning, which I'm sure is putting my body through hell. The Dr. gave me 25mg of vistarill to help me sleep. Wonderful drug! If it wasn't for my dogs, I would be insane, as they are the only living creatures I can stand to be around. I am going to cut my dosage to 3 days instead of 5 to start weaning myself off. I read on another web site that the moon face should start to dissapear when I go down to 10 mg a day. Thank GOD!
-- By twoodrow | Reply | Private Message me
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