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.
June 23th
2008
2:36 PM
my sister was put on Prednisone for a inflamed heart and fluid around the heart, she started with 6 pills a day at 5mg for 7days, then 5 pills for 7days then 4 all the way down to 1 a day. When she got to 1 a day the EXTREME chest pains came back she was in and out of the hospital so many times it was crazy, she was then put back up to 6 a day and slowing get weaned off, however her side effects are insane, major swelling, moon face, weakness, INSOMNIA bad, rashes and bruzes are appearing everywhere, coughing a LOT, sore throat, foggy vision, shortness of breath, thats put it this way she is a MESS and to top it off her husband of 24 years passed away on April 30th, 2008 with a massive heart attack at 47 years old, she feels like she is going to go CRAZY, if anyone has any suggestions it would be so appreciated. Thank you SAD SISTER!!
-- By insane10 | Reply | Private Message me
June 11th
2008
1:23 PM
I had my left lung fill with fluid and collapse after radiation treatment for Breast Cancer. The lung was drained with Thorocentesis and I was hospitalized for a week and put on prednisone - 40 mg reduced to zero in 1 week. I experienced symptoms of heart attack as reaction to reduction from prednisone. When it was determined by enzyme testing in hospital that heart not damaged I was sent home with prescription of prednisone starting at 60 -10 days, to 40- 5 days, to 30 - 10 days, to 20-10 days. The cumulative effect of these doses was all the side effects mentioned by others, loss of emotional and physical balance, stability, swelling, moon face, insomnia, depression, crying, stomach pain, constipation, etc. I dropped myself to 20mg for 9 days but on the 8th day had recurrence of lung pain and feared possible fluid build up through tissues damage/leak caused by radiation - they are calling it pleurisy or pleural effusion. (It was also determined that I must be on constant oxygen and sleep on oxygen as my breathing capacity is below 88 off of oxygen.) Dr. found not enough fluid to drain without risk to damaging my diaphragm so upped the prednisone again to 30 for 14 days. Using pain and shortness of breath as a measure of lung condition I must not dampen pain now but suffer it to monitor my lung so as to avoid trips for constant X-rays. I continue to suffer from prednisone and it has disabled me so that my normal life cannot be resumed in any way. I want to get off of it, but after reading these reports, I am very worried - supposedly the steroid is allowing my radiated lung to heal, but if that is not happening I think the steroids are possibly more life threatening than the lung - in any case, what life? What other choices do I have to survive the damage done to me by radiation?
-- By catherineh | Reply | (2) replies | Private Message me
April 25th
2008
6:53 PM
Hi all,
Well since my last post on April 23rd at 5:24, so far I have been coughing a lot. My throat is so sore just from coughing, I've been coughing up thick yellow mucous. Going into the 3rd day being on Prednisone, I couldn't take it anymore. The doctor originally requested me to take 3 pills a day for 4 days, then 2 pills for 4 days and then 1 pill for 4 days, I decided to change it. I took 3 pills for 2 days, then 2 pills for 2 days and 1 pill for 2 days, I couldn't take the side effects of severe insomnia, coughing, very dry mouth and shortness of breath going into the 3rd day. Since being prescribed Prednisone on Monday, I found myself today to be miserable. Whenever I cough my head feels like it's expanding, soon to explode and my brain hurts, I fear coughing because my throat hurts as does my body. I don't ever want to take this drug again, it's toxic. As for me now, I plan on going and laying down and sleeping like Rip Van Winkle and make up for lost sleep I didn't get during the week. Only being on this stuff for one week definitely made me sympathize with many of you who used it for years, one week was a rude awakening I don't ever want to experience again. Now I am going to go grab my stuffed bunny and crawl in bed for restful sleep.
-- By alison1960 | Reply | Private Message me
April 24th
2008
1:16 AM
My 30+ year run with Prednisone
My experience began back in the 1980s when I took 2 aspirin for a headache one day and landed in the hospital with difficulty breathing. I was diagnosed with Chronic Asthma Triad (Aspirin Sensitivity, Sinus Polyps, and Asthma). My doctors (Allergist & ENT) prescribed Prednisone to help with the asthma and control sinus swelling in does ranging from low 15mg up to 80mg per day with weening off periods lasting weeks to months. Over the next 9 years I underwent 12 sinus surgeries ultimately obliterating all of my sinus cavities. Chronic asthma continues today and I have now developed additional lung disease I was followed at UCSC Medical Center in San Francisco after being diagnosed with Bronchiolitis Oblitersans, at which time I was fully disabled, unable to work at all for almost 2 years. This was the most difficult period in my life.
Over the years dealing with chronic sinus disease and controlling my lung and airway diseases I have made many trips to the ER and experienced many hospitalizations. I have not been off of Prednisone since this all began. With so many doses of steroids both by IV and by mouth with tapers in doses ranging from 120md daily (by mouth) to a low maintenance dose of 5mg per day. Believe me when I say that I know the side effects of this dug all to well. Initially I experienced bloating in the face and body, a rash that still remains today. I have developed significant bone density loss and now experience joint pain full time. From a mental side effects stand point I am in a state of fluctuating brain fog, memory loss, and confusion. At times I get baffled easily. I continue to experience mild to severe mood swings.
I am currently working full time with great difficulty and at this time taking 40mg of Prednisone daily to control my difficulty breathing and severe shortness of breath.
Of all the side effects it is my memory loss that has been the biggest impact on my ability to work and communicate clearly, I am having difficulties performing at work and at home. I had no idea this medication could have such an impact on daily living.
The bottom line? Prednisone truly is a two edged sword, on one hand a wonder drug and on the other a destroyer of mind and body.
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 | Private Message me
December 17th
2007
3:40 PM
After bith my childrens births I have experienced a enigmatic skin disease / disorder which has been unclassified by dermatologists and specialists. First I experienced blisters on my torso, which crusted over and followed with severe urticaria-like wheels all over my body. Doctors placed me on Prednisone 5mg tablets ( 40mg daily) for 4 months, in which time the symptoms subsided , but the side -effects for this Mother was terrible!!! I experienced a 12kg weight-gain, uncontrollable appetite, excessive sweating, dizziness , shortness of breath and extreme hairloss. My skin thinned and OI bruised very quickly. No diagnosis could be made. After the induced -birth of my second child now, I have the same episode and had been placed on Prednisone for the second time just to cope with the swelling.
I am currently in my 7th week of using 10mg - 15mg daily with an anti-histamine. I hate the re-occuring side-effects and am very scared of all the long-term damage. Does anyone have any idea how to boost your own natural immune-defence system while being bombarded witha immuno-suppressant like Prednisone??!!!!
I believe that your own body ws made to heal itself or be healed by natural means... but how and what?? I am desperate, and have been following a anti-candida like diet ( no yeast + sugars + preserved foods) Thus far I have not been able to kick the symptoms. Any help out there would be much appreciated. Have someone experienced the same sort of symptoms???
-- By marabi | Reply | (1) replies | Private Message me
July 13th
2007
7:58 PM
had 12 days of prednisone for poison ivy starting out on 60 mg tapering down posion ivy started to spread again and was started on hexadrol x13 days have moon face shortness of breath changes in ekg did echo and chemical indused treadmill every thing good that way but i feel like i am losing what little mind i have left am a home health nurse and some times even with directions am fuzzy headed and also blew migraines into full force after finishin doseage severe joint pains fatigue very moody irritable and you know the rest never full when will this get out of my system can any one help also peri menopasal been married only 8months he is a saint
-- By uv642___________________________ | Reply | (1) replies | Private Message me
January 6th
2007
5:20 AM
Regarding the other post, headaches are a listed side effect. I took prednisone for two days - 40mg each. I am on day 3 without taking it due to side effects. At first anxiety symptoms and shaking hands and shortness of breath, then excessive sweating, abdominal pain, excessive urination, and hip and shoulder pain. Never mind the mood and personality changes, which occurred within hours of taking the 1st dose. Now, I still have really bad shoulder pain and sweating. Anyone who has gone through this, how long does it take, and what can help my body get over this faster??? Doctors should better inform patients of side effects - and my doctor is having me tested for parvovirus today--even though the symptoms I have are not consistent with it, and are all listed side effects of predisone----by the way, I had to find the side effects myself. I was sick (broncitis) and did not have the energy when I started the medication. Now I am angry that I was so poorly informed.
-- By ewaltner | Reply | Private Message me
November 27th
2006
7:27 PM
I have been on Prednisone for the past few months. I started off at 40 mg per day, and have tried to gradually wean down every few days. In doing so, I have developed excruciating rib cage muscle spasms, back spasms, shortness of breath, and leg weakness. Everytime I try to go down off this drug, I become so sick that I have no choice but to go back up. I have been told by my dr. that I will have to go down VERY gradually and it may take several months to do so. I am at 40 mg per day still trying to drop down by the week. Is this dangerous? I mean being on this drug for so long term? I already have osteoporosis from prednisone and have broken many ribs while on it. Would it be too dangerous for me to just go off of it all at one time and be done with it? I know I will be very ill if I choose to do it this way..but I don't want to put myself in a very dangerous situation either. Help! It's causing me panic attacks also. I just need to get off this medication! Any suggestions would be appreciated. Thanks!
-- By moonlightandwine | Reply | Private Message me
September 4th
2006
12:45 PM
I have been taking prednisone for five year for sarcoidosis,an autoimmune disease that targets first your lungs and then your immune system attacks any and can attack all muscles of the body. It left me with scaretissues in my lung.started with 70mg. down now to 20 and have been down to 5. every time i think i can come off my breathing gets worse but i think the medication also causes shortness of breath. i have lost vision in one eye ,no central vision since this med.break out in rashes.feels like iam disconnected mentally and phycially eye floaters in the other eye weight gain of about 50 pounds that will not move and i don't eat hardly anything.nervousness,moodswings and let me not forget the hypertension that i never had until this med. Now iam taking meds to doctor the problems the p rednisone created. CANNOT WIN FOR LOSING!!!!!!!!!!!!!
-- By sugarbabe0721 | Reply | Private Message me
August 2th
2005
7:47 AM
Came down with whooping cough 7 weeks ago.
Took antibiotic after antibiotic, nothing touched the shortness of breath or the wheezing tight whooping cough I had.
My dogs vet heard my cough and couldn't believe the 3 doctors I had been to see hadn't started prednisone yet.
Started on 5.0 mgs that same day. Cough is almost gone and I can actually breath again.
Thought I had a few side effects, blurry vision, sweats, etc. Told myself it was all in my head from reading articles and peoples experiences/side-effects from the stuff.
Just like that, side effects gone. Has anyone thought about the placebo effect? or Psychosomatic side-effects?
Personally, I think this stuff is a wonder drug. But then again, I value being able to breath! Bet the asthmatic community's would agree with me.
July 10th
2005
4:13 PM
I have had psoriasis for 15 yrs and psoriatic arthritis for 5. After having a major flare up of psoriatic arthritis where my tendons and major joints swelled.My doctor finally decided to prescribe me something for the swelling after 4 months of not being able to walk most days. I first started with Sulfasalasine (500mg daily for 7 days, 500mg twice daily for 7 days, 500mg three times daily for 7 days, and 1000mg twice daily for 7 days). After a month my psoriasis started to flare and it looked as if i was having a rash so it was discontinued.
A week later i received a prescription for Plaquenil (200mg x2 for 14 days) and Prednisone (4x5mg) in the mail. It was a two week trial of plaquenil, and with the prednisone i was to decrease by half a pill every three days. By the end of the two weeks of plaquenil i was noticing a red blotchy rash on my chest. I contacted my doctor. 3 days later the rash had gone from my chest to my neck to my cheeks. By the 4th day i had swelling around my eyes and they were also red and blotchy, my hands were also swollen to the point where i couldnt bend them and I was having a fever and night sweats. My doctor finally contacted me on the fifth day after stopping the plaquenil, and told me to discontinue it. I went to the hospital on that day and told them i thought i was having a allergic reaction to plaquenil, they stood five feet away looked at me and said ok just keep taking the prednisone at 20 mgs for a few days. They didnt want to get involved due to the fact that i had psoriasis. But also failed to mention to me that it could be the prednisone causing this reaction also.
The next day i saw my dermatologist, she prescribed 1% hydrocorisone cream which helped with some of the dryness and pealing skin. The next day when i woke up i couldnt open my eyes, i was having shortness of breath ( im not sure if it was the panic from not being able to see) my throat felt as if i had strep throat,and the roof of my mouth felt as if i had burned it. My skin looked like a huge sunburn, the parts where i had psoriasis were very red,raw,and pealing excessively. I was admitted to the hospital for four hrs where they gave me a IV of benedryl and a steriod.My skin was so swollen they could just barely find a vein to put the IV in. After 50mg of benedry they realeased me and told me to keep taking 50mg every 4-6 hrs and they prescribed me 50mg of prednisone for 7 days. By the next day the swelling had gone down by 30% in my face, but i still looked like i had been in a fight, the pressure around my eyes was so much that i had to sleep sitting up. Of course i wasnt really able to sleep with the fear that if i closed them i wouldnt be able to open them again. They also leaking white stuff. My skin was pealing in very large sections. I was bathing in a luke warm bath with oil, which would help with the pealing of my skin but then when i came out i would be freezing cold. I would get hot flashes and then instantly cold 5 minutes later. I felt like i running a fever but my temperature was normal.
Two days later the swelling was gone in my face, but my legs, ankles and feet were abnormally swollen. My skin was still pealing and constantly itchy. My skin tone was all pink it was no longer red and blotchy, but after i would shower or bath my legs would have dark purple and blue spots on them that looked like bruises. I was unable to sleep for more then two hours straight, i would wake up feeling as if i was on fire. It took another six days for the swelling to go down fully in my legs, ankles and feet.
After taking 50mg of prednisone for 7 days I am taking 45mg for 7 days then decreasing by 1 pill every week. After taking 45 mg for 3 days my skin looks as if its a big rash, it feels grainy and tight. Its no longer pealing except for on my feet.
Im told i look as if i have a bad sunburn, my face is red and tight to the point where the skin around my eyes doesnt even stretch when i open them widely.The sides of my mouth keep cracking when i try to open it fully. I look as if i have really dry skin constantly, it is a fine dusty flakeness. I bathe in moisturizing bath oil but it doesnt even go past the first layer of skin it seems, and i moisturize with keri lotion 3 or 4 times a day but it doesnt seem to matter how much i do it 15 minutes later im just as dry.My skin is sensitive to light and feels like its on fire when exposed to any amount of sunlight. The skin around my armpits and breasts or anywhere that the skin has to strecth is red and sore. I still get hot flashes but most the time i am freezing cold. The skin on my hands is wrinkley and i have no sense of touch almost. My nails were so brittle they had to be cut all the way back.
I have numbing of the tongue, i cant even taste food anymore. I have dry mouth, and i feel as if im dehydrated constantly, i can drink bottle after bottle of water and still feel thirsty. I feel really hungry sometimes or not at all at others. Some days it feels like I IBS and then other days it can be fine. I am losing my hair. The roof of my mouth still feels as if ive burned it on something hot. My legs still look purple at times when im standing, and especially after being in the shower or bath. I am taking 1mg of both folic acid and zinc which my rheumatologist suggest to help slow the reproduction of my skin cells. I have blurred vision 90% of the time, and sometimes i see halos around letters. My mood swings are all over the place, some days i feel like just crawling into a ball and not moving, mostly because its too painful to move around and also because i hate how I look. And other days i just feel nothing at all. Im not exactly sure if when i was the 50mg of prednisone i was happy because of the drug or if i was happy in general because i realized what i could have lost. Not being able to see for 15 minutes really put things into perspective.
Im not sure how much worse it can get? I thought the swelling of my eyes was the worst part but from what i hear it can get much worse coming down off of prednisone. I was wondering if anyone else with psoriasis may have experienced any of these side effects while on prednisone? and roughly how long it took for them to go away.
-- By knelson_12_2001 | Reply | Private Message me
April 22th
2005
4:23 PM
I had a stroke 4 yrs. ago and in the tests given it was found that I have Vasculitis. Dr. insists that a low daily dose of 4 mgs. per day will be fine. Have gained 45 lbs. Cheeks are puffy. Itching. Have tried using 2mgs. but sed rate is not good. Have accumulated fluid around the heart. Naturally this causes shortness of breath. Have any of you had similar problems?? Does anyone know an alternative drug??? Would appreaciate hearing from you.
-- By dgrant | Reply | Private Message me
September 16th
2008
8:50 PM
I am 49 yr old male and was diagnosed with a severe upper respiratory infection. Was put on Prednisone for 20 days. I never did experience depression, but I did experience the hyper state and was full of energy big time. It was actually nice ...had felt better than I had in a long time. Two of the side effects that I have been experiencing is sweating a lot more than normal ... I mean just the littlest of exercise and my shirt is soaked. Also my back and the back of my neck has broken out with acne ... that really hurts. I am using Desoximetasone which is a prescription cream and it has almost cleared all my acne up. I was about 250lbs and lost to 235lbs in the twenty days I was on it. I never changed my eating habits ...weight just fell off ...... man I wish they could put that it another pill without all the side effects. Now that I have been off for a couple of weeks ...I have gained some of the weight back ... but I'm really trying to change my eating habits and get back to 235 and go lower.
-- By kbevill | Reply | (1) replies | Private Message meI wonder if everyone posting would also put their blood type on their comments. There are so many different opinions of Prednisone ...there has to be a reason why you have so many effects for some and very little for others. I did research this drug while I ws taking it and read that if you take it for longer than 30 days that your body will stop making the natural prednisone that it makes. Thats why you hear when people take it for long periods of time ...you are destined to take for the rest of your life.
As far as lung condition, I can breathe again and I think I'm totally cured ... I have a follow up with my lung doctor next week.
My prayers are with you guys .... I agree .. I don't think I want to take Prednisone ever again. My blood type is AB+