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 3th
2009
2:04 PM
I was put on 20 ml prednisone a day for PMR . My doctor said with such a low dose I shouldn't experience many side effects. WRONG! The first month was great. No pain and I felt better than I'd felt in years. Then the side effects started...every known side effect hit me. After being on the drug for two months I told my doctor I couldn't stand the side effects any more and to please ween me off. Two weeks ago which was end of third month I was completely weened off the drug. I still have blurred vision so bad I can't function...I can't work, I can't drive, I can't read. I can barely see at all. My question is will my vision improve? So far its seems to be getting worse and my vision was great before prednisone.
Depression was bad when I was on drug but seems to be even worse now that I'm off.
The only side effects that have diminished are appetite even though I haven't lost one oz of 40 lb weight gain while I was on prednisone and muscle cramps are not quite as bad. I am sleeping a little better and hot flashes aren't as bad..
-- By eambrose | Reply | (1) replies | Private Message me
August 29th
2009
7:38 PM
Over two years ago I had a very severe case of shingles which had gone untreated for over 4 days. I was given acyclovir for the virus, acetaminophen for the pain, a diuretic to lessen the high blood pressure and weight gain I would suffer from taking prednisone. I started with 60 mg of prednisone and the dosage gradually eliminated over 6 weeks time. I gained over 40 pounds.
After the prednisone I suffered the following side effects: gained 15 more pounds, feet and ankles started swelling, I stopped sweating except profusely on my forehead. It took a year before I could sweat on my whole head, but nowhere else.
This year I am now sweating on my chest and head and nowhere else, I have gone down two dress sizes without changing my eating habits or exercise habits. My face is still round.
I am hoping the fact that I am an ovo-lacto vegetarian (30 years) isn't what's making the side effects last this long. This was the first time I had ever been given prednisone, and was told only about the high blood pressure and weight gain as a problem.
-- By vrose | Reply | 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 11th
2009
4:08 PM
I have had asthma since i was 10. I am 44 years old now. I have never in my life been on prednisone this long (since Feb 2009). It is now July 11,2009. I was admitted to the hospital for IV steriods (prednisone) because for the first time in my life the general 10 course with the pills wasn't working. so there i was on 165mg of pred every 6hrs. After eight days in the hospital i was released and was to take 40mg for five days and decrease by 5mg until done. I didn't do to well and had severe exhaustion where i couldn't even walk 2 steps the next day. so I went to my pulmonary dr. who said he noticed a severe anxiety side affect in me from the drug and said i needed to get off it as soon as possible, he had me drop my dose every day by 5mg. TO FAST! I had breathing problems again, started over going slower, got down to 10mg and had to jump to 40mg again! side effects for me are severe anxiety (which i have to take ativan for) and especially massive painful foot cramps. My hands will cramp to while trying to write, but the foot cramps and the feeling of being wired are the worst. I am still trying to wean off....sometimes i wonder if i will ever finally be off this stuff. I just want to cry sometimes. It feels like being pregnant and going thru post partum at the same time
-- By wendyjo07 | Reply | (2) replies | Private Message me
June 19th
2009
12:37 PM
Constant weight gain. Just had a kidney transplant Dec 2008, started off with 60mg prednisone now I am done to 5mg but I will gain 5 pounds and will stay at that weight for several months then go up another 5 pounds. I am eating healthy and exercising. I need help and advice!!!!!!!!!!!!
-- By kcgray | 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
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 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 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
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 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 19th
2009
8:19 AM
I started Prednisone Feb 7,2009 because I Have inflammation in my ear and other problems because of the disease. He started me on a high dosage. I take 3 pills a day. My doctor warn me that I would gain weight but Im not concern with the weight gain because prednisone helps me feel better and I know it's working. I'm always hungry,my face is Moon shape, and I feel fat but what have me scare3 is I can't sleep(insomnia) any more and I have severe join pain.My muscles feel weak, My leg and knee aches and I can barely walk sometimes! Im scared I might get avascular necrosis!and my blood pressure go up and down! I never had high blood pressure but the last time I went to the Doctor my pressure was high! Also I get abdominal pain, and feel very sick to my stomach!
-- By sweetcocoa69 | Reply | (1) replies | Private Message me
March 16th
2009
3:28 AM
5 days on prednisone for sinus/chest infection--JOINT PAIN ever since!!!! (it has been months now).
SO WHAT DO WE DO PEOPLE????? I'm only 26, I had a cold, and now I have chronic joint pain!
-- By endives | Reply | (2) replies | Private Message me
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 2th
2009
3:57 AM
I am on prednisone frequently for respiratory infections as I have a chronic lung condition. I was just hospitalized for a week and on 80 mg per day IV. I have tapered by 5 mg every 3rd day. I have a rash in my hairline and actually in my hair. I have blurry vision, insomnia, cravings for food, weight gain, puffy face, swollen stomach, and pain so bad in my left hip joint that I can hardly bear weight.
In Aug, 2008, I had my right hip replaced from avascular necrosis caused by steroid use for my lung condition. I am worried that AVN is now also in my left hip. The steroids take the swelling down in my lungs so I can breathe, however they are destroying my bones. I am so scared of another hip surgery. I realize that I need to be thankful that my joints can be replaced, but it is a horrible side effect of this drug.
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 19th
2009
11:21 AM
I HAD THE USUALLY SIDE EFFECTS OF PREDNISONE-WEIGHT GAIN, CONSTANT HEAD ACHE, BLURRED VISION AND AFTER SOME MONTHS RAPID HEART BEAT WHEN I LAID DOWN AND EXTREME FATIGUE. WELL, IT TURNS OUT THE RAPID HEART BEAT AND FATIGUE WERE NOT FROM PREDNISONE AND I ENDED UP HAVING A HEART ATTACK AND NEEDED BYPASS SURGERY. MY DOCTOR HAD DONE AN EKG DONE PRIOR TO THE HEART ATTACK AND THE RESULTS WERE FINE. MY INSURANCE COMPANY REFUSED ECHOCARDIOGRAM WHICH WOULD HAVE SHOWN PROBLEM WITH MY HEART AND COULD HAVE AVOIDED THE HEART ATTACK. I WOULD ENCOURAGE EVERYONE WITH "RACING HEART BEAT" TO GET IT CHECKED OUT.
AM
-- By dnana | Reply | 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 18th
2009
2:19 PM
I am recently out of the hosp after 9 days with COPD exas, pneumonia, flu. I have been on heavy antibiotics, steroids--home now for 1st time with oxygen---I feel GREAT.First time in years I feel like I have a life to live. Like a veil has been lifted. I'm scared for this feeling to go away--what is it? the steroids?? the oxygen?? Whatever it is I need to know so I can fight for it and stop just waiting to die.
-- By dlb816 | Reply | (9) replies | Private Message me
January 7th
2009
8:17 PM
Well, let's see, I am 37, I just had my third child a year ago. When I had my first child at 19, I entered the world of Rhumatoid Arthritis, I did not take anything for it, it just seemed to go away by itself. After the second child it flared up but not long enough or hard enough to remember. After the third child at 36, wow did it get bad, so bad i couldn't get her out of her crib. That was the day I started 10mg of pred a day,,it made all the symptoms of the RA almost disappear...almost...which was a miracle,,,but it made all the side effects of the med start,,,,weight gain BIG TIME, bad moods, maybe 2 hours of sleep @ night,,,hair loss which scares me the most, blurred vision, buffalo hump looks like I'm looking for something on the floor all the time,,a wonderful neck that looks like i swallowed a couple bananas whole,,hmmmm,,,,let's seeeeee,,what else, easy bruising thankfully I like the color purple, oh, and me and mr. potty have become well friends. At first, the doc thought it was hypothyroidism because I also had 2 periods a month, but a blood test told threw that theory out. I just want to say,,,,I like that my RA is better because of it,,,but I am as of yesterday taking myself off of good ol prednisone, and sticking to a high dose of IB or Tylenol. It's just not worth it.
-- By xandra | Reply | (1) 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 18th
2008
12:52 PM
Hi, I was put on a dose pack today, not sure after reading all the side effects. Has anyone been put on just a small dose pack? Starts out with today i should take 6, tomorrow 5, etc.... till down to one than done. Have major back and knee problems can't afford any sort of weight gain to trigger problems with muskuloskeletal Thanks for any experience or input any of you may have with this sort of dosing.
-- By tlbobb45 | Reply | (2) replies | Private Message me
December 13th
2008
6:59 PM
I got a large dose. I think 120 mg. in a shot. I had strep throat and had severe tonsil swelling and the uvula was enlarged at least three times the normal size. I'm concerned now as to what to do next. I have a prescription for a week where I wean down the dose to I believe, 80 mg for three days, then to 40 for three or two days (I'm not sure cause I didn't get the prescription picked up yet. I just am remembering what the doctor said. ) I'm so concerned that it'll mess me up! The dosage continues to one pill for so many days and then to a half. The swelling has subsided substantially, and it really helped. I don't have any other symptoms as yet. Maybe a sour stomach. I'm afraid of the symptoms and any weight gain.
-- By bettyinva2003 | Reply | (2) replies | Private Message me
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
September 24th
2008
4:08 PM
My daughter, 21yo, took prednisone off/on for 4 months, both oral and IV form, with the highest dose of 90mg over a two week period. The risk of bone death (Osteonecrosis, aka Avascular Necrosis) is not disclosed as a risk and 7,000 people a year get this from steroids! They gloss it over under the guise of "bone pain" or "bone fracture" near the osteoporosis risk so you think that by taking calcium and vit D supplements you're protected. What's really going on here is that the steroids cause the bone to die so if you have pain, PLEASE INSIST on an MRI because a regular x-ray will not show ON until it's in the advanced stages..and then you'll most certainly need joint replacement.
I'm not making light of the weight gain, or loss of hair or any of the myriad of other side effects that come with this drug, but when you're told that the joints in your body are dead...and that they'll eventually become brittle and break and cause so much pain it is often compared to bone cancer, then you'll really want to sue someone. But, I've tried that...it doesn't work. Because the drug is FDA approved...the manufacturer can't be held liable.
My daughter has ON in her right shoulder, both elbows, both wrists, both knees, and both ankles. She's considered "collateral damage" by the medical/legal communities because Prednisone is the "gold standard." This disease is a slow progressing disease which is often found as late as 10 years after stopping the steroid treatment. If you find it early enough, some surgical options exist to prevent the collapse of your bones, so if you have joint pain...PLEASE investigate with an MRI
-- By avnmom08 | Reply | (2) 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 9th
2008
8:53 PM
Several years ago I saw a doctor at the University of Iowa Hospital and Clinics in Iowa City, IA and was diagnosed with a chronic disease. Although most researchers and scientists will tell you lifestyle and dietary changes are essential when diagnosed with a chronic disease, my doctor, Dr. Anne L., told me they don't matter. In the spirit of "Do no harm," dietary and lifestyle changes are often the first things doctors recommend their patients change.
Instead of harmless lifestyle changes, I was put me on a lot of dangerous prescription drugs. One of those dangerous drugs was prednisone.
It didn't help my disease, but its side effects have been devastating and debilitating. And these side effects are particularly annoying because I was told this was a drug that didn't have side effects. (And when I learned about the side effects, I wanted to stop using it, but my doctor told me I'd die if I did. So I had to keep using it. Once you're on prednisone, you can't stop taking it abruptly. It really can kill you. So before you take it, you need to be informed. If you later found out its a drug you don't want to take, you can't just stop.)
But this is what I really wanted to say.
Look, prednisone's a bad drug, and most doctors don't prescribe it so casually anymore, but under the care of a good MD, its effects can be managed. Most docs will tell you right away when you go on prednisone about the side effects that most people are concerned about, like weight gain and acne. The fact is, those things actually matter not just superficially, not just for self-esteem, but in terms of people's overall health and even for managing the chronic disease for which prednisone is likely prescribed. If one becomes depressed, this not only affects one's overall general health, but for many chronic diseases, it can cause the disease itself to relapse. And because prednisone itself carries a risk of depression, managing such side effects, side effects that are likely to make a patient become depressed, is paramount.
Certainly most doctors will readily prescribe either topical acne treatments oral antibiotics for cystic acne which prednisone often induces. For the weight gain itself, ignoring the chronic disease for which prednisone is probably being prescribed, doctors often recommend a different diet to the patient.
My point is just that prednisone isn't as evil when you have an average or mediocre doctor.
Now, on the other hand, prednisone really is a bad drug to begin with. So under the care of a bad doctor, it's almost inevitable that you're going to experience permanent side effects and yes, under such incompetent care, this drug could easily ruin your life. That's what happened with me.
So make sure you have a good or at least mediocre doctor if you're using this drug.
And as far as dietary and lifestyle changes, I've been able to manage my disease solely with dietary and lifestyle changes. So I didn't need prednisone in the first place. Regardless, I would never take this drug again and I would not recommend anyone else take it unless you have exhausted every other possible option, unless you know you're doctor is competent, unless you know about the risks and side effects and what to do when they occur.
I never would've taken if I knew about the side effects. It's really quite stupid to use this drug as a first-line treatment, which is how it was used in my case. It should only be used as a last resort, if at all.
If I had never taken prednisone, I would be perfectly healthy today. My chronic disease itself doesn't influence my daily life at all anymore. But every single day the side effects of prednisone are evident and debilitating and will be for the rest of my life.
-- By bresson | Reply | (1) replies | Private Message me
September 5th
2008
9:27 PM
MY FATHER WAS DIAGNOSED WITH TEMPORAL ARTHRITIS. HE HAS BEEN ON PREDNISONE FOR ABOUT 5 MONTHS NOW, STARTING FROM 80MG/DAY. HE HAS TAPERED DOWN TO 40 MG/DAY,,BUT TH SIDE EFFECTS ARE STARTING TO BECOME UNBEARABLE.
WATER RETENTION,,SWELLING, MUSCLE PAIN,,WEAKNESS.
HE IS 80 YEARS OLD,,AND IT IS REALLY TAKING A TOLL ON HIM. IF ANYONE CAN GIVE ME ANY HELP OR INFO TO COUNTER SOME OF THE SIDE EFFECTS(MUSCLE PAIN AND WEAKNESS MOST IMPORTANT) IT WOULD BE GREATLY APPRECIATED.
THANK YOU.
August 14th
2008
3:15 PM
I have now tapered to 10mg prednisone every other day and will end 75mg Cytoxan Aug 19th. Just went to the Dr. and she said protein is back in urine (bad) but also rising in blood. (good) I can continue to taper prednisone but will have to have another 24 hr urine speciman to determine wether I have to go on cyclosporine. Was originally diagnosed with Minimal Change Disease, but now she thinks it could be another kidney disease. Has anyone had successful tapering with the addition of cyclosporine? Does the urine protein ever get higher? What about side effects of cyclosporine.
-- By looboo | Reply | (1) replies | 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
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
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
February 29th
2008
10:52 PM
Very few side effects. My father was put on 30 mg of Prednisone to control an inflammation that he was having in his body. It seemed to work well. He had also lost considerable weight, had anemia and was admitted to the hospital prior. So I wasn't worried about the common side effect of Prednisone of weight gain, as post-hospital we were glad he was gaining weight. I don't know if it was a side effect, as he only slowly gained a pound or two each week and then eventually plateaued about about his old weight.
We've now started tapering it, at my recommendation, not the doctor's!, and we are not seeing any return of side effects yet. He did have a bit of the puffy face, and is a bit compulsive, but we don't know if that's because of his Alzheimer's or the Prednisone.
I wanted to let some other know, as I've done a lot of reading/research, looking at the prescribing and pharmakinetics of the drug, it seems important that the taper is most critical when you are nearing 5 mg. This is because 5 mg is about the amount that your body naturally makes, so if your adrenal glands have stopped making it, it would take some time for them to 're-awaken'.
Therefore, the typical recommended tapering schedule is something like 10 mg per week, then slowing it down at 10 mg, and then real slow at 5 mg, eventually going to like 1 mg pills, as you try to continue down to no pills.
While I think Prednisone did put an end to a life-threatening inflammation for my father, I like many others would have liked much more upfront info and options from the docs. We are now on a slow 3 month taper schedule, that nobody realized we'd have to do when we started.
BTW, my dad has mild/moderate swelling in his ankles and toes, but nothing in his hands or abdomen. We don't know if it's because of his loss of weight, muscle and weakening of his heart, and/or some interference with his adrenal-regulation from an ACE inhibitor, Lisinopril, that he is on for his hypertension, or the Prednisone.
Any advice on the swollen ankles would be appreciated.
-- By clrgrn | Reply | Private Message me
February 13th
2008
3:16 PM
I'm a 22 year old who was diagnosed with dermatologists a couple months ago. I've been on different doses of steroids ranging from 5mg to 60mg for 5 months now. i was on 60mg the longest and just went down to 40mg. i go down to 30 mg next month. so far my side effects are moon face, swollen areas around my neck and collar bone, weight gain like 15 lbs, always have to wake up in the middle of the night and pee, my knees get shooting pains sometimes at night, light hair by my ears like sideburns, tired, helps with my muscle weakness a little, my eyesight seems blurry sometimes, chest always feels tight. I'm also on Methotrexate, Bactrim, folic acid, and Fosamax. it might be a reaction form all these but i think its mainly from the Prednisone. i cant wait to get down to the lower doses. i look like a different person and even tho all my family and friends know its still embarrassing. i fell like a whole different person. i cant wait to be normal again.
-- By cattyo8 | Reply | (4) replies | Private Message me
January 27th
2008
3:56 PM
I don't have a new side affect with Prednisone but just want to share my feelings. I was diagnosed with Temporal Arthritis since last July 2007. I started taking 60 mg of Prednisone for 1 month. Didn't notice the side affects then. Weaned myself off through my doctor's instructions. But relapse occurred when I was only on 2 daily. With Temporal Arthritis, you get delibating and horrendous head pain which is caused due to inflammation of the main artery in the temple. I am back to 3 daily.
Besides my moon face, I am bigger. I really don't have a lot of the other side affects you all talk about. I am sorry you all have to go through that.
My depression is better. My sleep is horrible. Now I am going to a sleep study to see if I have Sleep Apnea.
I consider Prednisone a wonder drug. Although the side affects are horrible, I have to admit, I feel much better, most of the time. I do have inflammation in the neck. Not sure if that is pred or temporal arthritis, but am seeing a rheumatologist for that.
Teena
-- By tpace1954 | Reply | (4) replies | Private Message me
January 26th
2008
6:53 PM
I was given 20 mg of Prednisone for 10 days for a rash and joint pain.
The pain went away and I felt great the rash got a little better. Two days ago I took my last pill. I woke up that night and my knees gave out. By morning I was great! Next night I woke with knee problem again had to slide down the stairs to the living room. I got to wondering if the knee thing could be associated with the Prednisone. I got on line and read all this terrible stuff. I am so Horrified! Today I am in pain like my body is bruised and my face is swollen a little. I have acid reflux as well. Non of this is typical for me. My knee thing is ok again, but I am just appalled! I have no MED insurance. I hope this isn't the beginning of worse things I am not taking that drug now. The Dr. didn't say I needed to taper...
I hope I have not damaged myself by taking this drug! My heart goes out to all of you! My question is - Why are the Dr.'s prescribing this terrible drug?
-- By harvesterbornagain | Reply | (24) replies | Private Message me
January 19th
2008
5:35 PM
I am 25 and I have a severe case of Ulcerative Colitis. I have been taking Prednisone for about ten months, about as soon as my little daughter was born I started taking it, and I have gained about fifty pounds. I am so depressed because before I was pregnant I had just lost a whole bunch of weight and was very happy and healthy, and had just gotten married before I became pregnant. Things were going great. Now I don't even want to leave my house because I don't want people to see me. I feel like a balloon. If I am able to stop the medication, will the weight gain stop and will some of the weight I have gained go away on its own or am I going to have to get working on a fitness plan again, because I am still pretty ill and it is difficult for me to work out. Help! I am so frustrated and I don't know what to do.
-- By agntorang1 | Reply | (1) replies | 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:
-- By jaspbr | Reply | (3) replies | Private Message mebrain fog, blurred vision, puffy eyes, depression, confusion, dizzy, moon face, buffalo neck hump neck, hopelessness