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Been off steroids for 1 year - Still have a moonface!

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Posted 9/30/2011 8:26 AM (GMT 0)
Hello everyone


OK, I have been waiting patiently for almost 12 months since I came off pred for my moonface to go away. But, it is not going anywhere! Why?

I knew it would take longer than most people, due to the fact that I was on them for an extraordinary length of time - 8 years.

But, I am really fed up with the chubby face now. I am now worrying that it may never go away! Maybe, it was mooned for so long, that it is now permanent? That would be terrible.

Has anyone else been waiting this long? Did it go eventually?

Any help much appreciated!


Take care
Posted 9/30/2011 1:32 PM (GMT 0)
I am so sorry barsnbury, I was on varying doses of pred for 4 years (mostly at 10mgs but periods of time up to 60 mgs and once up to 100mgs) off it since June this year and my face is still in process getting back to normal, it does look better though.

How is your salt intake? I try to limit mine to 1500 mgs a day and definintely no asian food unless I get it cooked w/no msg and no salt.

Have you talked to your Doctor?

Also, do you have any stiffness? Since being off pred if I sit or lay down for any period of time I am very stiff, it has gotten better since June but can still be very painful at times.
Posted 9/30/2011 2:14 PM (GMT 0)
Beth75 - I salt intake is not very high. I do watch what I eat.

No, I don't have any stiffness, which is a miracle! I do take Omega fish oils every day, maybe they help.

I haven't bothered asking my DR. I dont think he can offer much help in this regard...
Posted 9/30/2011 3:24 PM (GMT 0)
Props to you for being off steroids for a year :)

My aunt had severe myelitis and also suffers from Cushing's syndrome after being on steroids for a several years.

Her face has gotten better but obviously, not what it used to be.

Do you exercise regularly?
Posted 9/30/2011 4:25 PM (GMT 0)
I am sorry to say but I have heard that the moon face can last as long as you were on pred but it usually goes away sooner. I was on it for a year and I still have a bit of a double chin (i've been off for 5 months or so I guess). It is driving me crazy. I am not sure if it is from the pred or if I developed a double chin at the same time and now I have it to stay. I figure I will wait until I have been off it for a year before assuming it is here to stay. I would imagine after 8 years, it could be another year before it is fully gone. Have you seen any improvement?
Posted 9/30/2011 4:54 PM (GMT 0)
Thanks CollegeStudent. . No, I dont do much exercise! I really should make more of an effort. But, my weight is fine. I dont eat fatty foods. So. your aunts face never went back to
normal? That is really bad.

notsosicklygirl - It has gotten a bit better but not much. It is probably the same as how it looked when I was on 2mg of pred. Some days, my face gets even more mooned. And people notice and mention it! I really cant believe it. I thought I had left all this behind when I took my last pred tablet! No such luck. I also developed a small double chin after 3 years on steroids. And it has never gone away! But, that doesnt bother me as much as the moonface.

Take care
Posted 9/30/2011 5:42 PM (GMT 0)
8 years?? What dosage were you on?
Posted 9/30/2011 7:35 PM (GMT 0)
Yes I know it sounds unbelievable. At the start of each flare, I would be on 40mg for around 3 weeks. Then I would taper down every week to 20mg. There I would have to stay on for a few months, then down to 10mg for a long time. I would flare at 2mg, and the cycle started again. So, it was periods of high dose and long periods of medium - to low.
Posted 9/30/2011 9:27 PM (GMT 0)
Your GI did a huge disservice to you. He/She isn't supposed to have you on Pred more than three months. I would report him/her. He/She could be doing the same thing to others. There are many who are in your situation. It's called becoming Pred dependent. The solution is not to keep prescribing Pred. If you haven't already, I would get a health examination that includes getting your bone density checked. I would also go see an eye doctor to get a full eye examine. You could have some deterioration to your connective tissue and might need to take action to correct or at least make sure it doesn't get worse.
Posted 9/30/2011 9:56 PM (GMT 0)
     I was prednisone dependent for two years prior to my operation June 28th of 2010.    For twelve years before that I was on and off it several times.  It wasn't my GI, it was me.  He tried weaning me off several times, but I would just flare and he placed me back on it.  We also tried 6MP, Remicade and Humira...nada.  Anyway, back to the moonface.  I had the moonface for about six months after weaning off about a month after my operation.

     Best to have your bones checked out.  Prednisone gave me osteoporosis and I have suffered three back fractures.  I am 65 yrs old.  Were you taking calcium while on prednisone?

Posted 9/30/2011 10:29 PM (GMT 0)
It was also your GI's responsibility. If I were a doctor and knew that a medicine wasn't supposed to be prescribed for more than a certain time, I would not go over the limit (not unless it were unsafe for the patient not to do so). After Pred, GI's are allowed to prescribe Remicade, Humira, ... And if those don't work, it's surgery. Your GI should have refused to keep prescribing Pred for you after the three-month mark. Even if you were having issues tapering, he/she should have worked with you to get you off the medication. I can understand going over three months by a couple of weeks due to the danger of weaning off Pred too quickly. But after that...
Posted 10/4/2011 2:44 PM (GMT 0)
I was taking calcichew after 1 year of being on pred. But, I wasnt great at remembering to take it. So, no surprise then that I have proven osteoporosis. I have an annual infusion of Aclasta to try and reverse the bone loss.

To be fair, my GI tried his utmost to get me off steroids. He ordered that I go see colorectal surgeons and stoma nurses on several ococasions. But, I was adamant I was going to "hold on" untill a new treatment came out. It took 8 years, but now I am in remission with Vedolizumab.

I will remain hopeful that my moonface does one day go away...

Take care
Posted 10/5/2011 11:10 PM (GMT 0)
I understand . Three weeks on pred. No side effect till 2 months later swollen face , acne everywhere , instant 10 pounds overnight . It's been a year now. My face is scared from the acne and my back too. Haven't lost the weight and face swelling went down a little bit. Very round when I smile!
Posted 10/5/2011 11:16 PM (GMT 0)
barnsbury, I am sure it will decrease quite a bit with time. I wouldn't expect it to go away too quickly after 8 years but we can't be stck like this forever!! I am happy you found something that is working for you. I hope you have a lifelong remission.
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