April 13th
2008
5:48 PM
Hi everyone,
I am a 25 year old female who was diagnosed with Crohn's disease one year ago. I stumbled on this website and wanted to share my experiences to let others know they are not alone and that their side effects due to Prednisone are completely normal.
In Nov of 2007, I was in the hospital for a Crohn's flare up and was put on prednisone through IV (240mg/day). After a three days I was released, but one week later, had another flare up and was back in the hospital in December of 2007. This time, I stayed for 6 days and was on 240mg/day again through IV, along with taking Flagyl and fluids for my flare up and infection.
At first, I lost about 10 lbs due to the flare up and all of the medication I was on. However, within 3 weeks time, I gained 28 lbs and was a complete mess. I looked different, felt different and was emotionally and mentally drained.
My side effects included: Severe moon face, buffalo hump, increased appetite, hair thinning and severe hair loss, night sweats where I would have to change pajamas 3-4x a night, OCD to the point where I would have to clean my entire apartment (even if it was already clean), restlessness, anxiety, no sleep and sometimes I would go days without sleeping, increased thirst and dehydration, swollen eyes and headaches, depression and mood swings, upper and lower abdomen swelling and weight gain (28 lbs in 3 weeks), suicidal thoughts, unbearable muscle and joint swelling and aching, forgetfulness and memory loss, blurred vision and dark hair growth on my face near my sideburns and underneath my chin and on the bottom portion of my face. Bottom line: it was unbearable and nobody warned me about the harsh side effects of the drug.
When I left the hospital, I was put on 60mg/day and eventually weaned off Prednisone over the course of 2 1/2 months and took my last 5mg dose in mid- February 2008.
It is now 2 months since I have been off Prednisone and as of now, I have only lost 7 lbs, but much of the moon face has gone away and I don't seem as swollen in my chest. My appetite returned to normal the day I stopped taking the drug and my mood swings subsided one week after stopping Prednisone. I still have the buffalo hump, but it stopped hurting and I am now able to sleep through the night. The fluid retention seems to have moved south towards my legs, arms, and lower abdomen. My doctors say that within about 6 months after stopping Prednisone, most of the fluid retention should go away and they recommend walking for 45-60 minutes/day to help with the fluid/weight gain.
Overall, prednisone helped to save my life and put my Crohn's into remission, but is one of the WORST drugs I have ever taken. My heart goes out to anyone who has had to take this drug and trust that you are not alone--and the side effects are real and they are harsh. I am slowly seeing that it takes time for the prednisone to leave your system and my doctors say that every day there is less and less in my body.
Stay positive, stay active & stay Healthy!!
-- By vanygirl | Reply | (5) replies | Private Message me
February 25th
2008
2:31 PM
I have asthmatic bronchitis. In June 2006 I came down with an infection in my lungs, which also set off my asthma. Between the two I was hospitalized and put on 240 mg of intravenous Prednisone and the antibiotic Levaquin. I was cured of the infection and was able breathe normally again but it took a great toll on my body It took me 3 months to taper off of the Prednisone and almost a whole year to feel myself. I was a strong, physically active person before this happened to me and I have not gotten my energy level and endurance back to what I was before I was sick. When I was released from the hospital I went from 160 mg of intravenous Prednisone to 80 mg of pill Prednisone. That step down was too severe and I went through intense joint and muscle pain in my body that it woke me from a sound sleep in the middle of the night. I luckily had an old Vicodin that I took which only made the pain bearable. I should have upped the Prednisone to make it go away but I wanted off. This pain lasted one week with each day getting less. The side effects I experienced from then on were so plentiful that I almost can't remember them all. The physical problems were, thin skin that bruised or ripped and bled profusely with the slightest bump, blurred vision, sensitivity to light, muscle cramps in my legs and hands, sleeplessness, dry mouth and frequent urination. My stomach bloated and got stretch marks. I didn't have any before that. The muscles in my thighs and upper arms atrophied so bad that I could not walk up stairs w/o using my arms to help. My arms were also very weak and I got hemorrhoids; another muscle that was affected. I had a bad case of the drops. I couldn't hold on to anything and broke many glasses. I got moon face that took a couple of weeks to go away after I was off the Prednisone. Because I was on such high doses, my hair died and stopped growing. About 40% of it fell out in one month. It took 6 months to grow back and it all grew back curly. On January 30, 2008 my bronchial tubes closed again due to a sinus infection. Again I was hospitalized with 240 mg of intravenous Prednisone and Levaquin. This time I responded much better, because I jumped on the infection/asthma instead of waiting. I stepped down from 240 to 180 to 90 to 60 and decrease 5 mg a day until I was off. This time I did no lose my hair land did not get hemorrhoids. The other physical effects were pretty much the same but much less severe. However, this time the emotional effects of Prednisone were much worse than last time. I was not a nice person. I was short tempered and argumentative and even had to stop myself from resorting to violence a couple of times. That is definitely not who I am. Prednisone stops your adrenal glands from working and adrenaline is you chemical way of coping with stress. I have been off of the Prednisone for one week and still find it hard to cope with the slightest controversy. My brain is still in a fog and I get confused easily. I cannot handle too many questions at once and forget things. My face is still round. Both times, I have found it the hardest dealing with the Prednisone at the very end and even after I finished taking it. I think it builds up and even though the chemical is suppose to be out of your body in 24 hours, it's effects stay a lot longer. I thought I knew what to expect but the second time was different again. It is a horrible drug but my trade off was breathing. Sometimes I think, that if I have to go through this a few more times, the side effects will kill me before the asthma. I wish all you Prednisone users loads of luck and stay positive.
-- By dal | Reply | (3) 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 | (9) replies | Private Message me