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Moon-face and Corticosteroids

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Ulcerative Colitis
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Posted 6/22/2011 10:33 PM (GMT 0)
Hello Everyone. I've just recently tapered off my Prednisone (so I am no longer on it) but I am still taking Budenoside rectal enema (5mg) daily, which I've been taking for a month now. I've gotten a HUGE moon-face and I've gained a lot of weight in my abdominal region. My question is, can I do anything to bring down the moon-face and get my abdomen back to normal? Any certain type of exercise or diet? I used to be a really avid soccer player and I used to run a lot and to be quite honest, I was skinny. I'm HUGE now and the transformation is taking a huge toll on my self-esteem. I just want to look like my normal self. If anyone has any advice on how I can potentially speed-up the process, please do let me know. Thanks so much! :)

PS- I was on the Prednisone for a total of 6 months. I was diagnosed with UC in late December 2010. I was tapered off the Prednisone in mid-April but then I had to start again 2 weeks later @ 40 mg because I had a massive flare up. So I've tapered off from 40 mg twice now. Don't know if this is important to know but I thought I'd throw that in there :)
Posted 6/22/2011 10:49 PM (GMT 0)
my theory is that it takes half the time you were on pred prior to 10mg (count the time before that when you were on higher doses) for it to go away. Just what happens to me.

The weight comes off very slowly. I just joined sparkpeople it is a free diet and motivational site. I found info on it here at healing well. I am on day #3, in addition to watching my calories I had to pick three things to work on. First I have to write down EVERYTHING I eat. Second I have to exercise at least 10 min per day (walking or whatever), 3rd I have to give myself a 5 minute pick me up speech everyday. I have to do this for two weeks, then not sure what happens next, except I think that they have you change it every couple of weeks. I tried weight watchers online and didn't care for the point system (joined a few times online and a few times going to meetings), I have a good feeling about sparkpeople, there are message boards there too, so I know I am not the only one.
Posted 6/22/2011 11:00 PM (GMT 0)
I will definitely check out sparkpeople. Thank you so much for sharing it with me. Hopefully, it'll work for both the weight and my self-esteem. I love how you have to give yourself a 5-min pick-me-up speech. I think that's such an amazing idea! Thanks again! :)
Posted 6/23/2011 1:08 AM (GMT 0)
I've never used sparkpeople, but have heard good things about that site.

When I have been on steroids, I have found that the weight is very stubborn to get back off. And I too gained a LOT. HUGE moon face and the first course I was on, I gained 50 pounds in 2 months. The second course I was on a few years later, I was diligent about my eating because I didnt want to gain as much. I gained 45 pounds in 2 months that time. Ugh.

The moon face was one of the first things to come, and it was also one of the first things to start going down, thankfully. I just tried to drink a lot of water and eat right, exercise, etc. (except I got pg before getting the weight off after this last course. My doctors didn't want me to wait since I was in remission-thankfully, I lost weight in the first trimester, so I am in pretty good shape with the weight gain) But still-it took a while. It is frustrating, and I felt SO BAD about myself. I still feel pretty crappy looking in the mirror, but at least for the time being I can blame in on the baby!

I had to renew my license when I was in full moon face mode. OMG. Everytime I look at it, I want to cry. I will be losing that license when I have had the baby and lost more of this weight so that I can get my picture redone...
Posted 6/23/2011 1:30 AM (GMT 0)
CONGRATS ON THE BABY! I'm so excited for you ahah :) I'm glad you went into remission. Gives me hope that I might also go into remission as well. I'm glad the moon-face was the first thing that started going down. Hopefully same will happen for me. I made a sparkpeople plan as soon as Beth75 posted and I just went for a 15 minute run. Gosh am I out of shape. I used to be able to run for miles and miles and now after running down the street, my muscles started to ache and pain. Just goes to show what a couple months of laziness can do to you. I don't think doctors stress diet and exercise enough. They're very biomedicine based. I'm not starting to take the initiative to do more than just pump medicine into my body. Hopefully it'll speed up the process of the side effects going away! I know how you feel about the driver's license thing. We had a mask fitting done at my university at the beginning of first semester (im in the nursing program) and I have to get it done again because my face is now twice the size. Same with my student ID card and everything. But oh well :) I'm in a good mood at the moment because of the exercise aha :) Thanks for sharing your story with me! I'm glad things worked out for you and I hope the same happens for me! Thanks for giving me some hope!
Posted 6/23/2011 3:16 AM (GMT 0)
Hi Baggravation,

Our experiences are so similar...I started on pred in late January, hopefully will be tapering off completely in about a month. I was playing soccer 3-4 times a week prior to getting sick in December and it has been so hard for me to watch my once in-shape body turn into something I don't really recognize. I think the moonface bothers me the most too--I can hide the abdominal weight, but it's just so depressing to look in the mirror and debate about whether I've finally crossed that wonderful threshold into officially having a double chin.

I just joined a gym yesterday, so I'm going to go the route of working out to make myself feel better. I went on my first outside run last weekend and my legs felt as heavy as tree trunks, but I was just happy that I was able to do something physically challenging without having to use the rest of the day to recover, which would definitely have been the case a few months ago.

Anyway, I just wanted to send a message of support to let you know you aren't the only one going through this right now. Thanks for posting and good luck with sparkpeople--I think I will look into that too!

Amanda
Posted 6/23/2011 4:14 AM (GMT 0)
Thanks so much for your reply, amandaDC. I know how you feel and we'll get through this! We just have to take it one day at a time. Some days are bad and some days are wonderful for me. People keep telling me that you have to find your beauty from with in and I keep hoping I'll some how start looking like I once did so I'm currently failing at finding my beauty from with in. In a society that values outer appearance so much, it's hard to look beyond that sometimes. I'm going to work on my self-confidence and hopefully things will turn around from there. I really believe that the ultimate goal in life is to be happy and if I'm happy, I'm pretty sure the moon-face won't bother me. I've had this moon-face for a while now and I keep getting flare-ups so I'm pretty sure I'm doing to be stuck with the moon-face for a while so I'm going to have to learn to love it ah :) It's going to take me a lot of time and effort to love it but hopefully I'll learn to love the 'new' me. Thanks again for reply. It's a comforting feeling knowing that others know what you're going through (although I really do wish that you were not going through it!).
Posted 6/23/2011 2:58 PM (GMT 0)
a low sodium diet- going very light on the salt- seems to reduce water retention and hance moon face , quite a bit. It usually takes a few months for my moon face to fully dissipate once off high doses of pred.
Posted 6/23/2011 3:58 PM (GMT 0)
Thank you so much, Probiotic! I'll try to cut the salt out of my diet!
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