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Hi everyone, I am a 25 year old female who was diagnosed with ...

Posted at 5:48 PM on Apr 13, 2008 by vanygirl, #29542
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!!
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Reply about 1 year ago on Apr 16, 2008 by sandy146, #7280

Hi
Thankyou for sharing about Prednisone and letting people know that side affects do leave. I feel like one of those puff fish. I've been quite ill taking prednisone for Giant Cell. They were not sure if I had it but it causes blindness so I was told to take it. I've been on it for one year but I am not better so they think it was a misdiagnosis. I still have severe head pain and aching eyes but don't know what it is. Whenever I'm afraid I start taking int again and when I start to feel better wean myself off it. The doctors say I can. thankyou for your informative posting.

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Reply about 1 year ago on Apr 16, 2008 by dkwth2002, #7326

I know prednisone is a very evil med. I also have Crohn's Disease. I have had it for 15 years. It is not a fun disease to deal with either. I take it you were so bad that you had to take the pred. I know there are other meds out there that are being used also other than prednisone, (it's called entocort), it is a steroid but it has ALOT less side effects to it. BUT depending on where you Crohn's is at & how severe it is of whether you could take it or not. Good luck & I hope you feel better.

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Reply about 1 year ago on May 06, 2008 by melie, #7981

Thank you for posting your experiences. I have been on Pred. since August '07 thanks to ulcerative colitis. I am a 44 year old mother of two teenagers and an 8th grade English teacher. I just had my entire lower intestine/colon removed on March 19th and am now tapering off the Pred. I am at 5 mg, after being as high as 60 mg. They have had me reduce by 5 mg per week since March 29, the day I was discharged from the hospital. I have experienced almost all of the same side effects as you have mentioned and hope I never have to take this med. again. I have gained 40 lbs, but worse than that are the weird changes to my body, including the buffalo hump, moon face, sideburns, fat on my back, and the painful joints and muscle spasms/"charlie horses," just to name a FEW. I too had the night sweats that I would wake up soaking wet! Anyhow, I appreciate your posting so that I know what others have experienced with this drug. Doctors don't seem very sympathetic when it comes to the side effects, and the tapering process. This includes my Primary Care Dr, my Gastro/Int Dr,, my rheumatologist, and my GI surgeon at the Lahey Clinic in Boston. No one ever warned me that all of these side effects could happen when they started me on Pred. I am supposed to drop from 5 mg to ZERO Pred next week, and am a little scared of the withdrawal symptoms. I wonder how long it will take to start to feel "normal" again.
Good luck and God Bless to all those that come across these posts and have had to deal with Prednizone side effects.

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Reply about 1 year ago on May 20, 2008 by shaunquell, #8472

i am with you 100 percent. i have bee diagnosed with chronic urticaria it is a unknown allergy. i brake out with hives. i have been on predinsone for 8 months i was 123lbs and now i am 155 in 2weeks. i have exsperinced terrible night sweats my body and cloths be soaked from head to toe i. i have to change cloths throughout the night. i also have a big moon face my hand ansd feet swells. also any hard pressure to my body would either wape me up or brake me out. my skin is so tight that when i bend down my skin feels like it is bust. i hate pred but it is the only thing that would prevent me dfrom brakin out. benadryle does not work for me so believe me you are not alone.

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Reply about 1 year ago on May 26, 2008 by bjw2, #8600

I have had sarcoidosis for over 10 years and have been on and off prednisone over that time. I've just gone off it to see what happens (the third time I've tried to do it--the disease recurs without prednisone generally).The dosage you were on is astonishing! 240mg in a day! I was on 35mg for a while and it had really bad mood side affects (mainly anger being easily provoked). I have been put on methatrexate which is a steroid sparing agent and although not overly pleasant (interacts v badly with alcohol) is a lot better than prednisone. But the choice becomes what is worse-the disease or the cure? Invariably the disease causes the damage so we have to put up with the cure. But I would look into substitutes for prednisone and on the weight front, well it's a matter of taking matters into your own hands and exercising and dieting. Yes it's a bore but it's better than not doing it.
Good luck!
Bruce

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