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I was diagnosed with SLE (lupus) when I was 14, I'm 21 now, and I...

Posted at 1:17 PM on Feb 09, 2009 by tiffanyt, #38802
I was diagnosed with SLE (lupus) when I was 14, I'm 21 now, and I've had to be on prednisone all this while. The dosages alternate between 60mg (the highest) and 2.5mg (the lowest), I just went for a routine check up today and found out that my protein level in my urine is at an all time high. So the doctor is pushing me back up to 30mg of prednisone. Its 2 am, and I am sitting in bed crying because I don't want to have to go through everything again; the weight gain, the moon-face, everything. I know I may sound shallow, because ultimately, the medicine is keeping me alive, but the side effects are terrible. Very few people understand that its not fat that you're gaining, and the remarks that I know I am going to get are enough to drive me insane.Is there anyway the water retention or the weight gain can be stopped or decreased?
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Reply 9 months ago on Feb 09, 2009 by italian, #16901

Tiffany - I know how terrible this drug can be. I've been on it for 10 months now starting with 60 and down to 10mg now. I had ALOT of the terrible side effects but the one thing I've been really fortunate about is the weight gain. I think so far I've gained about 7-8 pounds but being how sick I was I needed the extra weight. The only advise that I really have and that really worked for me was exercise, exercise, exercise everyday. I walk about 3-5 miles almost every day, plus use light weights, and the traditional abd exercises but I do it everyday. I drink water and really try to watch what I eat and that is the hard part. I do have the moon face (and trust me that makes me sick) but have to tell you that exercise really makes me feel good. I know how hard it is but try to make it a part of your daily routine and hopefully it helps. Good Luck!!!

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Reply 9 months ago on Feb 09, 2009 by italian, #16908

Just to add, exercise, not just to reduce weight gain, exercise (in simple terms) to move to flush to excess water out. It's important to keep your body hydrated so it's important to drink water too.

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Reply 8 months ago on Mar 08, 2009 by hollyhockacre, #17791

I wouldn't take such large doses; I just wouldn't do it. Let them doctors try to find something else. I'm suffering the side effects from trying to get off of 60mg and I will die before I take another drug like this. Your in my thoughts and prayers.

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Reply 7 months ago on Apr 12, 2009 by sunnie6120, #18809

i was finally diagnosed with sle AT age 30, had symptoms since i was 24, am now 48 and thankful to be here. prednisone did a lot of superficial damage to me, it wasnt until a few years ago that i was able to just accept the weight gain, face changes, etc. I have aged before my time, but i am happy to say i am able to be a grandma to my two beautiful two yr old grandchildren and they love me just as i am. please hang in there, eat healthy, think well and love yourself. i will keep you in my prayers

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Reply 6 months ago on Apr 27, 2009 by nephroticmom, #19254

Don't know if this might help with the water weight... my daughter who is 13 just found out in Feb. 2009 that she has Nephrotic Syndrom and is on a high 60mg per day too and wasn't responding because she too was spilling way to much protein so they added another med called Prograf. Just the other day she was testing trace so the doctors decided to cut her pred down to 40mg everyother day. I do feel for you.. my daughter was and still is made fun of because of her moon-face and slight weight gain which the kids don't understand. It makes me so mad. I even thought of pulling her from school to home school her so she doens't have to go through it every single day.
Anyway, she was taking a medicine called Lasix. It was for the water weight she had when she was in the hospital. Now, when she feels like she is getting a little water weight she will take a pill and fell way better. Her doctor told us it's very important she doesn't take it unless she's for sure having water weight because if your not and take it - it will dehydrate you and living in AZ not such a good idea. Today she was feeling so bad with leg pain she didn't go to school. I know she feels your pain. That Prograf she's on is way better and I guess they give to people who don't respond to the pred. and the doctor told me the pred is 100 times worse that this med. No side effects like the pred. and I'm not sure how long she will be on it. She actually had a biopsy on her kidney to rule out lupus. Hang in there and if you ever want to email her and chat she'd love to hear from someone else who is kinda going through the same thing.

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