September 1th
2008
10:07 AM
hi everyone, i'm a 36 y.o. male and have been on and off of prednisone for 25 yrs. my experience has always been more positive than negative with taking this drug. it has helped me to breath better and has made me to feel extra healthy and even physically stronger. but i have my suspicions about this drug also. it has given me a false since of good health and i feel like i want to keep taking it just to feel better. i have only taken the drug after an asthma attack for about 5-7 days. early on the only side effect was increased appetite and occasional insomnia. but the last time i took this drug the doctor increased the milligrams and a VERY UNUSUAL side effect occurred that never happened before. I HAD HALLUCINATIONS! i have never had these side effects before and on the leaflet of possible side effects that came from the pharmacist for the very first time i saw hallucinations listed as a possible side effect. the hallucinations were damn near demonic in nature. the experience went like this... i woke up in the middle of the night to use the bathroom and on my way to the bathroom i passed my dresser mirror and in the mirror was writing on the mirror in a mist! just like it would be when you get out of the shower and take your finger and write on the mirror. THERE WERE LEGIBLE WORDS ON MY MIRROR! mind you this is in my bedroom and the shower was off! at that point i refused to read what i saw in the mirror! it was weird enough what i saw i didn't need to read it. i refused to be fearful at that point cause i realized i was hallucinating and not getting a haunting. when i woke up later i went back to the mirror and of course no writing in the mirror. IF THERE IS ANYONE WHO HAS EXPERIENCED THIS PLEASE TELL ME YOUR STORY PERSONALLY! MY EMAIL IS ******! i would like to know that i'm not alone in this. to make it easier for me to see your response please type prednisone in the subject box on the email cause i receive a ton of emails and spam. and i would really like to hear other stories and experiences of taking this drug with very weird side effects!
-- By preduser1 | Reply | (1) replies | Send Private Mail
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 | (9) replies | Send Private Mail
March 24th
2008
9:53 PM
I am a 25 year old, who was perfectly healthy prior to recently when I was diagnosed with Nephritic Syndrome and Minimal Change Disease and possibly FSGS (kidney diseases) I was put on 60 mg of Prednisone for 1 month then I was lowered to 40 mg for one month and I am then dropping to 30 mg. I am also taking Fosamax for my bones and a Vitamin D pill because my last lab test showed low vitamin D levels.
I am dizzy constantly and can not live a normal life, I can not drive or do any activities that I had previously done. My chest is so tight and constricted all of the time, my heart rate is so fast and pounds at my chest. I have no energy to do anything, I can barely open a door at times. I am beginning to grow unwanted hair on my face. My abdomen is always bloated. I have pain in my rib cage, and shoulders. I feel very sore throughout my entire body. I do not really sleep at night, so I look very tired all the time.
I have actually lost weight, I have no appetite at all. I am down 10-15lbs.
Now for the Pro- my Kidney Diseases are currently in remission and this has happened much faster than the Nephrologist had thought.
I am very anxious to getting my life back to normal and getting off the Prednisone.
Has any one else experienced increased heart rate, chest tightness, or rib pain?
I wish everyone the best in their roads to recovery!!
-- By nicipp | Reply | (9) replies | Send Private Mail
January 25th
2008
7:13 AM
I started Prednisone 2 weeks ago and gradually started having leg cramps. They have gotten worse over the last couple of days. They are in my ankles and feet and I have to get up several times a night just to sit until they relax. We plan to decrease the dosage in two weeks, but this is most annoying. Of course, it's far better than what I was experiencing with pain and sleepless nights and had gotten so I could barely move. My hands were swollen and tight, my arms ached with every move and movements were very limited. My bones in my feet felt (and sounded) as though they were shifting around when I got up to walk. My knees were weak. I was just diagnosed with polymyalgia rheumatica. I feel 70-80% improved. Just wondered if anyone else has had these symptoms on Prednisone. It didn't do this with the dosepaks.
-- By sprice | Reply | (3) replies | Send Private Mail
January 14th
2008
9:32 AM
Hi!
I have ulcerative Colitis. I had a bad flare up since Thanksgiving 07.I have been on Prednisone since the beginning of Dec.07. The first 3 days it was giving to me by IV every 6 hrs.I was hospitalized due to tremendous blood lost. After this my doctor put me on 60 MG a day. 6 pills of Asacol and I also was on ennama with Cortisone which totally almost killed me. The side effects were sooooooooooooo bad,let say I had them all.Right now I'm dealing with the side effects of the evil Pill " Prednisone" Moon face and this awful bloating in my upper abdomen, tiredness, no energies, heavy legs. It makes it really hard for me to get out & around.I hope my doctor will get me off this Prednisone. Not only messes it up your normal living no it also makes you look like a ugly bulldog! I hate it!
September 26th
2007
9:35 PM
PLEASE REPLY! ok i wrote on this board about a month ago, and i was complaining about all the horrible side effects i was having.....however things have gotten much much worse since then, and i must admit that i have been bad. very bad. i am secretly winging myself off of the steroids b/c I cannot handle the depression and not being myself anymore... I've been on Prednisone for a year now and started winging myself from 15mg when I last wrote on here to now 10 mg... my hair is falling out in HUGE clumps, and I am NOT overexaggerating when I say I am going bald... does anyone know if this could be from tapering the drug, or would you say it is probably because of my condition possibly returning from tapering the drug too low???? I just want to know if IMMENSE hair loss is affiliated with steroids...I have not seen anyone else mention anything.
-- By marian0000 | Reply | (6) replies | Send Private Mail
September 25th
2007
11:48 AM
Prednisone is a miracle drug that is saving my life. I realize that the side effects can happen and do. I've experienced them too: pockets of fat on my face even though I've lost 25 pounds; loss of hair; Thrush in the mouth and other yeast infections; hyperactivity; insomnia; blurry vision; the shakes; reduction in muscle tone; and secondary infections because of compromised immune system. I have pulmonary fibrosis and waiting for a lung transplant. There is no known cause, cure, or treatment of this terminal disease and most patients die in 1-5 years. Prednisone is the only drug that will at least slow the disease down until I receive that transplant call. I realize that most people on this post are not terminally ill and you can say, "no" to this drug; but just wanted you to know that for some of us it's a miracle drug.
Di
September 12th
2007
7:59 PM
I am a 19-year-old female pre-med student who has been taking this nasty drug for exacly 1 year now.... The amount I am on continues to change, for my disease keeps returning and leaving remission. I finally get down to 10mg from 40mg, and have to go back up when symptoms return!!! This is SO discouraging. The worst part is, no one understands the physical and emotional agony this drug brings on. I'm 19 and feel like I'm 90. My body aches, my weight is constantly fluctuating, I bruise from simply being poked (being a clumsy person, I look like I am beat!!), my bones feel as if they are about to break, and I am SEVERELY despressed. Being in college and taking rigorous classes, this is just too much for me to handle anymore... My 5-year relationship with the love of my life/best friend is falling apart because of my horrible mood swings.. don't blame him for leaving. I feel as if this drug has ruined my life more than the disease itself...Does ANYONE know if one's body and mind returns to "normal" after FINALLY being off this drug??? I pray to God the answer is yes... I would appreciate someone's reply and/or insight, because my Dr. fails to tell me about ANY side effects until I mention something. PLEASE REPLY!!!
-- By marian0000 | Reply | (5) replies | Send Private Mail
September 7th
2007
10:37 PM
I was put on 10mg. Prednisone 5 times a day by my rheumatolgist. This past Wed. I had to go to my GP doctor because under my right armpit it was red & swollen 2 inches high and 5 inches across. I was in agony. He flipped when saw how much Prednisone I was taking. He said that is what caused my armpit problem. He could not drain my armpit because it was too hard. That was when I just went to pieces because I wanted some relief.He put me on antibiotics and pain meds. He noted a yellow spot in the corner of both eyes and amde an appt. with an optomolgist. He told me how to taper off of Prednisone and I will go back next week. It has been 2 days since that visit and here are my new problems: white bumps on my tongue, numb tongue and lips, pus sores in my nose,bloating, bright red spots on my thighs, bruises I can't explain, moonface, pain under my rib area, I could eat eat our house like a termite, not sleeping, sweating. My husband half expects me to grow a new leg or develop leposy or something. I had no idea a drug could do so much damage so quickly.Who knows what new side effect I can get tomorrow.
-- By veral | Reply | (1) replies | Send Private Mail
July 26th
2007
3:42 PM
I am really hoping someone can help me with the side effect issues I am having after taking Prednisone to cure a tumor on my larynx.. I was on the drug for six months.. taking 60 mg a day. It saved my life and at the same time it was just about to kill me, I am not kidding. The horrible effects it had on my body was really worse than the tumor that was taking my life. It would have almost been easy to die.
But today I'm very grateful for the miracle it did on my throat. I did not have a voice for many years.. today I can sing and that makes it's a great gift.
I was wondering, after being on it for so long and coming off nice and slowly, should my joints be in this much pain? My body aches are horrible.. all the muscles hurt and that never seems to go aways. Is this normal?
June 13th
2007
5:19 PM
Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)
Sue =)
-- By sue36 | Reply | (5) replies | Send Private Mail
November 29th
2005
3:09 PM
Dear Friends:
I have been off and on prednisone for thirty years. I am a chronic asthmatic, and things flare up easily. This past six months have been difficult, as my symptoms have exacerbated about every month.
Prednisone has taken its toll. My weight has been a problem even though I am careful what I eat. My muscle mass seems to have decreased, and I find that I do not have the strength I used to have. I am 67 years of age and otherwise in good health. I do have peripheral neuropathy in both feet and legs, and polycythemia vera. The Polycythemia is been under control for 7 months, with no phlebotomies required.
The worst side-effect of all is on my libido. I have always been sexually active, but the prednisone has made me dysfunctional. When I ask my doctor(s), the inevitible reply is, "Well, as we age, things are never what they used to be." They avoid the subject like the plague.
I need some information. Is it the prednisone which has caused erectile dysfunction and loss of libido? If so, what can be done about it?
Dave
-- By bvtn142 | Reply | Send Private Mail
This registry is a place to share positive or negative side effects of using PredniSONE. If you directly experienced a side effect while using PredniSONE, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
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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.
-- By invictus | Reply | (2) replies | Send Private MailWATER 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.