Hello everyone. I am a 19 yr old female, DX 3 years ago. I have kidney, skin and liver involvement. I have been on high doses of prednisone for 3 years now, and I have very swollen face, fingers and abdomen. I have tried to get rid of excess fat from my abdomen by doing abdominal excercises but it is not helping! people ask me if I am pregnant, I am not naturally fat, and it is very annoying! does anyone else have this problem? anyone have any idea of what could help o reduce the swelling? and does anyone know if it will go away if prednisone is discontinued?
Thank you

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"We can learn a lot from crayons. Some are thick, some are thin. Some are blunt, some are sharp. But they are all different colours, and they all learn to live together in the same box."

Hello!
Yes, steroids cause a weird bunch of things while it eases our inflammatory processes. It affects water retention and the metabolization of carbohydrates. You will go down after you stop- but it takes a while. At work one of our coworkers had cancer and wa put on real high doses and she blew up by 40 @ almost immediately. It was so hard for her cause people didn't recognize her.
Another coworker was put on high does and then low maintenance dose for RA- her doctor gave her the best advice:avoid all 'white" as in bread refined sugar, etc. I am definately NOT a health food or weird diet person. Since I was diagnosed with diabetes 2 at the same time as the Lupus, I took that as a challenge. So far I managed to lose a little with strict diet control- but I can also see that whenever she upped the prednisone I would start retaining fluid in my legs and ankles. She told me that was a side effect of the pred. It scares me sufficiently to watch the sugars and starches closer. I'm on 20mg/day now and aiming to reduce theat dose as the methotrexate kicks in in the next few weeks.
It's a real low blow to handle as you have enough to deal with the disease.
Try giving it a different spin- tell them yes when asked if you're PG. then tell them its a lab experiment and you're naming it "steroids" or "lupus" or whatever will get the message across .
Hang in there- you're an old hat at this stuff already and you're so young! I can learn a lot from YOU- and I'm 57!
jeri

hi nicola,
i was on those horrible pills for almost 6 years with the same problem. The bad news is
my bit's went back to normal with in a few weeks of coming off them. I have the same, kidney, skin, joints and now my liver involvment.I was put on lisinopril to replace the prednisolone and azathyoprin and my levels of protein and blood are the lowest i have ever had since being diagnosed.
just remember these pills are keeping you going, you will come off them soon, or ask your doc about alternative medication as i did. good luck let me know how you get on.

well you guys have given me some help in saying that it will go down, eventually. In the mean time I will continue to do my ad excercises and drinking my water.
i am on only 5mg now, the lowest i have ever been on in the 3 years since dx.
has anyone ever had itchy feet and palms from coming off prednisone, ive had it every time i have tried to come off it. Is it because my adrenal glands are not producing enough chemicals, or is it my liver involvement?
thank you for yopur replies

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"We can learn a lot from crayons. Some are thick, some are thin. Some are blunt, some are sharp. But they are all different colours, and they all learn to live together in the same box."