please help

384 Views 5 Replies 5 Participants Last post by Nutty, Sep 14, 2008

carol5

Discussion Starter · Sep 14, 2008

:worried: Hi there, I just wondered if anyone can give me some advice, I have been on 10mgs of pred for 9yrs, for lupus, but at the end of july i was in hosp for 2 weeks with costachondritis and dx with fibro aswell, they inc pred to 60mgs i have been reducing it by 5mgs each week now i am back to 10mg, i have also started aza and amatryptiline, but my main concern is my face!! it balloned in hosp with the inc in pred, but i was told that it would come down, but its still as bad, and so so painful it feels as if i have concrete rocks in my cheeks it goes real hard then softens a wee bit and when its hard the skin feels like it is being stretched too far and about to burst, i have also got pockets of fat or fluid arond the bony bit ( clavicle ) on either side, which again i was told would go as the pred reduced, has anyone experienced this if so , how long did it take to look normal again or does it stay like this forever, its really getting me down, i hate looking in the mirror, i would be so grateful for any advice
carol5:sad:

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Bonnie64

· #2 · Sep 14, 2008

Hi Carol.

I was on Pred for a long time(for Crohns disease)and I had the huge moon face and the swelling you have around my neck.It did eventually go away but think it was after I came off them all together,but then they went away within weeks.I can totally understand how you are feeling,its difficult enough being ill,without having to cope with all these side effects

Bonnie x

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lazylegs

· #3 · Sep 14, 2008

Hi Carol,

The same thing happens to me every time I have to increase the Prednisone. Usually I don't start shedding the cheeks until I get down to 10 mgs. It takes time but I have always gone back to normal.

Take care,
Lazylegs

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LolaLola

· #4 · Sep 14, 2008

According to Dr. D'Cruz at St. Thomas' Hosp. you should find the weight comes off when you get down to 8mgms. I was lucky my face has never really blown up like this, although my body has got fatter (sigh).
It is very hard and unpleasant when we need a big increase in steroids, so well done for tapering them down so well.
x Lola

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carol5

Discussion Starter · #5 · Sep 14, 2008

thankyou,thankyou,thankyou, i feel so much better now just knowing i can get back to normal is a huge relief! did you all have the pain and the concrete in the cheeks feeling also
carol5 x

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Nutty

· #6 · Sep 14, 2008

Hi Carol,

Thanks for posting this question. I'm in the same boat as you. I went up to 80 mg when I had pericarditis. I'm back down to 20 mg, but my face (and body) is huge. I tell people that I look like a chipmunk with my mouth full of nuts tucked in my cheeks. Might as well laugh about than cry. But seriously, it bothers me as well. I am huge. I can't seem to stop eating on prednisone either. I'm hoping it will go away as well. I am so tired (and sore) of biting the inside of my cheeks trying to eat!..

Nutty

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