November 6th
2009
5:24 PM
I'm a 56 year old male. I'm taking pred as a trial therapy for CIDP, which can be described as MS "lite". The treatment has been three days of one gram per day methylprednisolone infusion, followed, for the rest of the month, by 20 mg prednisone a day. Then another three days of infusions, etc. It's called "pulse treatment." Side effects have been a bit of insomnia, mainly during the three-day period of infusions, feeling a little hyper, slightly hoarse voice, huge appetite. I seem to be able to control these rather well, and haven't gained weight, so far. I'm told I look a little flushed, but don't have a Barry Bonds face, noy yet anyway. The two side effects that have been problematic: Flatulence. Ever read Confederacy of Dunces? I feel like Ignatius O'Reilly. The most problematic has been the urge to pee, which is most intense a couple of days after the infusions are complete. It's really intense for two or three days, then subsides a bit, but still makes me get up in the middle of the night, something that I've only rarely experienced before. Tests for urinary tract infection are negative. Will do this treatment for a few more months and then get spinal tap and EMG test to see if there's an improvement. Haven't noticed any so far, but that's expected.
-- By jmarch | 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 10th
2009
3:31 AM
i went 2 the specialist yesterday that put me on the prednisone due 2 me having crohns as the joint pain in my ankle has been so painful and his now told me that the prednisone has giving me arthritis im really upset about it im 25 and im in a lot of pain the specialist said 2 go home and rest my ankle for the weekend its been 2days and its still not better iv got 2 go back and see him on Monday and if it hasn't improved which i doubt it will his going 2 change my medication he wanted 2 up the dosage of prednisone to 30mg as im down to 10mgs now and i told him that i have received every side effect possible 2 the prednisone and its just starting to reverse and there is no way im going to le you put me on a higher dosage i want 2 come off this drug as quick as possible and he surgesseted another medication that will help with the arthritis in my ankle but it will make me nausea i told him id rather that then all the symptoms iv been having in the last month then be put back on the prednisone
-- By nes09 | Reply | (2) replies | Private Message me
October 6th
2009
8:52 AM
iv been diagnosed with crohns 2months ago iv now been on prednisone for 4weeks i started on 40mg and now down 2 15 the last week my ankles have swelled up and now my right ankle is so painful to touch and walk on, and nothing is making it better, pain killers don't work, massaging it doesn't work, putting deep heat on it so to night i iced it for 15 mins and put a heat pack on it several times the pain went away for 10mins and came back its so painful im almost in tears, im down 2 15mg now so im not eating as muchas i was b4 i wasn't getting full i just keeped eating, my mood swings arnt as bad iv got moon face as they call it and i hate it as theirs no shape at all 2 my face, im getting pimples as will iv retained all this fluid and i feel like a marshmallow can someone please tell me that this pain will go away or is their something i can take 2 make it go away this is the worst medication in the whole world when i get off the prednisone and i have another flar up id rather have the runs and stomach cramps then all this drama iv been having in the last 3weeks iv also changes my whole diet and its made a huge difference 2 how i feel
-- By nes09 | Reply | (2) replies | Private Message me
September 9th
2009
7:55 PM
Hello,
How long do side effects last after completing steroid treatment? I've been off of pred for 4 months for crohn's first time. I was on 40/30/20/10 for a 6 week period. When I got to 30 my legs went into extreme pain. They felt like they were on fire, burning knees. Went to several doctors. One said steroid withdrawal, one said inflammation of nerves from Crohn's. Neurologist put me on neurontin to get off of the pain meds. I am still in excruciating pain and wondering if it really is steroid withdrawal. I can barely walk at times with extreme sharp pains, like someone is stabbing me in the legs. Can't stand for long periods of time and pain pills barely touch the pain. During steroid treatment, they gave me 3 rounds of Dilaudid in the ER and I was still crying, and I don't cry. Has anybody ever had this effect this long after being off the drug??
September 7th
2009
4:50 PM
I am 24 and have suffered from severe to moderate acne my entire life. I have tried every cure out there and nothing has worked. I went on prednisone for an skin allergic reaction about 2 weeks ago. I started out with 50mg on the first day, and 40 mg the next, 30 the next day, and so on. I took it for a week. By the second day of taking prednisone, my acne was 100% cleared up and has been gone since. Now that I am off the medication, my acne is coming back. The only side effect from this drug was insomnia and CLEARING of acne. Does anyone have any idea why I had such a weird reaction to this drug?
-- By michellezerbi | Reply | (2) replies | Private Message me
March 27th
2009
8:31 PM
I have COPD and with every cold that settles in the chest, I'm back on the antibiotics and prednisone. Like many of you, I hate it. When I first started it was with the dosepak and that didn't bother me at all, no side effects, but with progression of my disease and lungs getting worse, I'm now told to take 40mg for seven day and stop...NEVER, I have always take the 40 for 2 days and tapered down 10mg every 2 days. The last two times I've been on the pred I have been so nervous, almost tremmors, headache, muscle aches, dizzy and just can't put up with the side effects.
Like everyone else I'm told they are probably not from the pred. Took my last pill this morning and I thank God for that. Think I'll just have a little talk with Him and if He is willing, I won't need the ugly medicine.
God Bless all of you who have to take prednisone, I do know how miserable it can make you feel, and it just seems to get worse.
TALK TO YOUR DOCTOR, NO TWO PEOPLE ARE ALIKE AND NO MED IS RIGHT FOR ALL OF US.
March 7th
2009
8:02 PM
I'm 16 years old, and in November of 2008 i was diagnosed with nephrotic syndrome, or FSGS. i started taking the preds starting at 60mg, and last month i started weaning off. i'm at 20 mg right now. i noticed that i started getting the common moon face right after i started taking the meds. and i hate it so much. also, i've had so much trouble falling asleep at night, but then when i do, i sleep for so long. i've also had the dreadful hair growth, REALLY bad mood swings, headaches, and for sure, increase in appetite. i've gained 30lbs since ive been on the preds and even when i exercise daily, i still cant loose a single pound. normally im a really fit girl, i ran track and i was a dancer. im just really worried that all this "fat" wont go away. i really hope it does. it just feels like prednisone really ruined my sophomore year of high school. and i just don't feel like doing anything anymore. i just wanna wear swearpants, curl up in a ball and lay in my bed and wait until this nightmare is over. But im just glad to know that there are a lot of other people out there that know how i feel.
-- By ashleyyy | Reply | (1) replies | Private Message me
March 4th
2009
3:56 PM
Just started taking Prednisone 60mg today for an allergic reaction to penicillin supposedly. Since taking it today--I feel hot one minute then cold the next! I have also had this funny tingling sensation all over my body & I feel rather sluggish! I have three more days then hopefully I will feel better!
-- By honorage78 | Reply | (1) replies | Private Message me
February 21th
2009
11:04 PM
took the drug for only 4 days and ended up with MAJOR hives. My doc said he's never seen this side effect before and even took pictures to share with his collegues. It did get rid of my sinus infection, but what a price to pay. I took prednisone to get rid of the hives and that did work, but I still have faint scars where the hives were bad. This was back in May of 08.
-- By kpelant | Reply | (2) replies | Private Message me
February 19th
2009
10:45 AM
I am scared to death after reading what everyone is going through. I was put on Levaquin for 10 days and got to day 9. My joints ached so bad I thought I had arthritis, and even had my Dr. do blood tests for it (I had no idea it was the Levaquin). I am only 35 years old and never worried about arthritis before this. Also, within 5 days I started developing hives all over. Again, I was stupid and didn't realize until day 9 that the hives were because of this med. I told my Dr. and he told me to stop taking it which of course I did. I assumed the hives would go away after the med was out of my system. But a week later the hives were unbearable. I was put on prednisone (another issue altogether) and that helped the itching, but now every time I try to go off or back off the prednisone the hives come back- and they are terrible! Now my Dr. thinks the hives were from something else because there is no way that the Levaquin is still in my body. But after reading what other people are going through on this med, I am convinced this stuff is as everyone says- POISON!! I am so worried about the joint and hip pain that was so bad I couldn't stand for long without excruciating pain in my right hip. It felt like I had a one hundred pound weight just sitting on it. And my hands were the worst. I have a newborn and could barely pick him up without worry that I'd drop him. I don't know what to do.. Is there anything to do?? I'm still on the prednisone, and have been for a month. I need to get off of it but every time I do I itch so bad with the hives that I cannot function. Also because of the prednisone I noticed last night that I am getting "moon face" my face is swelling up and there are a million side effects from that drug too. How long does this last? Has anyone else fought the hives that come with this? Please help me, I am so scared!
-- By jennturner6 | Reply | (4) 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
January 1th
2009
9:26 PM
I was placed on Pred. in November for vasculitis. I was given 20mg for about 7 days, then cortisone for several days, with great results. Then the vasculitis came back, to nip it in the bud, the doctor gave me 10 mg of Pred. which I took for 5 days, no step down. Now I have a very irritated tongue... red, inflamed, hard to eat, burns constantly. This is the only new med I have taken in months, so it has to be the Pred.
-- By tlt | Reply | (1) replies | 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
September 25th
2008
9:07 PM
I was prescribed the 4mg methylprednisolone pack along with 50 mg tramadol for acute tendinitis in my wrist. I took the first 3 days of the prednisone and only 2 doses of the tramadol over the three days. For a total of 60 mg of prednisone.
The first day I had hot flashes and insomnia but attributed it to the tramadol because I had never taken it before and had taken the prednisone several years ago for poison ivy with no adverse reactions. I didn't take the tramadol the second night and then took it again last night along with my daily dose of prednisone. I had extreme difficulty falling asleep, heart burn, hot flashes; and tossed and turned all night trying to fall asleep. At around 2am, I began to have difficulty breathing, tightening in my chest, confusion, and racing thoughts. It felt as though my throat was closing up on me. My anxiety progressed to the point that I was pacing back and forth. I woke my husband up and told him to prepare to take me to the ER. After calling my insurance's 24 hour help line, it was recommended that I go to the ER. I had an x-ray, blood work, urine drug screen, and echocardiogram. Luckily, everything was negative. The ER doctor told me that I likely had a reaction to the prednisone and commented that some people will experience these symptoms when taking it. He stated that he had a similar reaction when he took it and it felt like he was climbing the walls, which is an accurate description of my experience that night. He recommended that I either stop taking it altogether or call my primary care provider and cut it down. He prescribed me xanax and administered some to me at the ER which greatly helped. The next day I stopped taking the pred but am still having dizziness, chest tightness, hot flashes, and mental dullness. I have decided to never take this medication again. Fortunately, I don't have any of the physical sx that some have experienced, and my heart goes out to you. I think the mental symptoms were traumatic enough for me and can't imagine having both as I would be a basket case. I have mood swings, some melancholia, and am very fatigued.
I think it is imperative to research any medication that is prescribed to you before you take it. Many providers will say that side effects are rare, but my experience is that side effects are more common than rare. My prayers go out to those of you who are going through what I am going through. I hope that it clears our systems quickly because this is no way to live. I'd rather put up with the pain of tendinitis or carpel tunnel than to have these symptoms.
-- By elise1966 | Reply | (5) replies | Private Message me
April 14th
2008
2:59 AM
I was put on Prednisonsone for Uveitis, inflammation of the eye. He started me on 20mg at 9 pills a day, then each week it was lowered to 6 pills then now i'm on 3 pills and then next week it will be 1 1/2 pill and i'll be off. I got the puffy face, my feet swelled, everytime i hate my stomach bloated and hurt, my face and neck turns red, i stayed hungry although i fought the temptation of eating for not wanting to gain a lot of weight, which I don't think I've gained any. But now I wake up in the middle of the night and severe knee pain, it feels like my knees they are in some kind of device that is crushing my bones they hurt so bad. i caught a bad cough and it's been around now for about 2 weeks and won't go away, i told the nurse about it and she says, i probably just got what everyone else has gotten, just a bad cough, well what's if it's some kind of infection? I look like a chipmunk, my face is so puffy. When i get off these prednisone in another week I WON'T BE going back on them, no matter what the case. I'm in more pain being on them and have more side effects while on them than the problem i was having with uveitis. I think some co workers thank I'm over reacting, but they're not here they don't see all the pain and frustration i'm going through while on this drug. The leg pain just started this weekend and i Know i can't deal with waking up everynight like this in severe pain. Everyone just makes me feel like i'm over reactin and it's nice to know that somebody out there is going through the same thing. Any comments will be great.
-- By tonyas | Reply | (13) replies | Private Message me
April 29th
2004
12:01 PM
I have been on pred for 2 years off and on for Temporal Arteritis that the doctors at long last have decided that I don't have. They started me out on 60 mm and now they are taking me off at 1mm every other week. I am down to 11mm now. I have experienced all the side effects except the acne and problems with periods. I gained 40 pounds and have such bad pains in my lower back that I can't stay on my feet for long. And I'm always hungry though I try to control it. My main withdrawal symptom is extreme itching from my neck to my wrists and thighs. especially where there is any pressure on the body such as waist bands etc. I tried to get off it once but it was at a faster rate and that is when the itching started. I will gladly put up with the itching as long as I can get off this "Satans curse" of a medicine. I also have jerking in my hands and a general feeling of shakiness. I was glad to read that someone else had painful sensitive teeth I didn't know it was connected to the pred. I too wonder if I will be able to lose all this weight after I'm off the pred. I do know that the moon face goes away because it did the one time I came off the pred then had to get back on it. I also have weakness in my thighs and arms. and my arms are always getting big ugly bruises or torn skin on them to the point that I have to wear long sleeves in hot weather.feel free to email me with your story. Especially if you are off of it so I can have some idea what might happen to me
-- By iraynbo | Reply | (4) replies | Private Message me
November 18th
2009
8:47 PM
I am shocked!! Over the last year I have experienced significant hair loss, mood swings, dizziness, cardiac issues (ended up in an ambulance for a suspected heart attack at age 37) can not go one day without Protonix, if I do I wake up in the middle of the night with horrible reflux and choking sensation. For the last 2 years I have had numerous allergic reactions resulting in shots of steriods and pred-packs..they can not find the cause (mostly when I get hot or flushed and every time I go on vacation). I never thought it could be my BCP. I have taken Yasmin, Yaz and now Ocella for about 2 years. My MD switched me from Yasmin to Yaz....b/c of HA's a year ago, I had a heavy period for 36 days, started back on Yasmin and my MD wanted me to take them continuous to skip my periods b/c of fibroids. My hair started falling out, my skin is dry with dry patches all over my legs and then my hair started falling out..thats when everyone told me I was crazy. I have a cramp in my right side all the time, I suspect from my gallbladder. I am a nurse and really thought of all of the worse things that could cause these symptoms, Thyroid, Cancer, Heart Disease, OCD, Paranoia. I think I will be stopping my Ocella(generic for Yasmin) tonight. I have been on BCP for 13 years straight, I'm scared that my periods will never be normal again? Anyone have any issues once off Yasmin??
-- By stephanielynn | Reply | (1) replies | Private Message me