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"Lupus Awareness" (kam123)

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"When I was diagnosed I was scared didn't know what to do or where to go..I started reserching bipolar and somehow ended up here at MD....Again scared but needing to know what was in store I asked a question..WOW the people who care..I know I would be lost now if I did not join..made many friends and they have helped me through thick and thin. and never judged...........XX Thank you MD and all.Love all of you.......Laurie Pachin" (puppylover)
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04/15/2008 12:05
Malia
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Hi all,

New here , any of you been on predisone for lupus for long periods of time? Im currently on 20mg per day 10 5 5, with meals , I had a bad flare so hence on that for now. Just wondered tho if any of you on pred. for a long time . Tx Malia


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04/16/2008 21:10
BELLA
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Hello, I have been on predisone for 13yrs now and am trying to stop, it was the only med that has ever help me with the pain and fatigue of Lupus

When my Doc got me on it way back then all he said was, you must take this every day for the rest of your life or you will not live long.

He mentioned the weight gain side effect (which I got for sure) but did not mention all the other very bad side effects from taking predisone

I now have Cushing syndrome and osteopenia, eye problems, a very weak immune response, high blood pressure, high cholestrol and God only knows what eles from the long term us of predisone............

I am not sure if I really would have died had I never taken the predisone

I doubt it now and I am working hard to find more natural remedies for my medical conditions

Bella

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04/17/2008 10:37
Malia
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Hi Bella,

So sorry ss turned you down, that is sad I will keep prayers coming your way Malia


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04/17/2008 11:03
BELLA
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Thank you Malia, I am still going to appeal SSD, I now have a lawyer so even if I have to pay her it will be worth it if I do get approved

I guess it takes years sometimes.........

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06/16/2008 20:12
APSFA
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Have you hired a disability attorney. For some reason that seems to get the paperwork approved. Keep fighting!!
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06/17/2008 13:32
fibroforever
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My mom was on prednisone for many, many years. Her doctor basically felt the same way. Felt that she would die if not on it.

I swear, she had multiple lives. She was one of the strongest people I know. There were lots of times that she came very close to death. And of course, she eventually lost her battle with all the issues that Lupus brought forth to her.

As far as whether or not the prednisone helped her live longer? I'm not sure. I do know that they tried taking her off a few times. And she actually was better with it, than without.

Bella- I'm surprised you were turned down with having a Lups diagnosis. Just hang in there though. You were smart to get an attorney. I'm sure your final outcome will be in your favor. It just takes time. Unfortunately.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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06/17/2008 18:30
mumeva
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Hi,

I also have been turned down for disability. I too have a lawyer and we are waiting for a hearing date. I applied for this in april 2006 and still waiting. I know it takes time but its hard waiting. My doctor is tappering me off prednisone and right now I alternate days with 3 and 4 mgs. I was on 60 for quite sometime but trying to get off. I did have to take three days of 20 mgs to get thru a flare so we'll see how this works out.

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06/22/2008 09:23
SHERMAN
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I'm also being tapped off prednisone after being on it for 8 plus years, but for me the sweets is whats so bad. I crave so much sugar, thats anything with sugar, sode I love Pepsi and ice cream and candy bars. He keeps warning me if I continue like this I could develope diabetes. Plus my weight is all over the place, but I do exercise dailey and I try to stick with weight watchers

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11/14/2008 20:27
nickoa
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so people who have lupus qualify for disability? i didn't know this, how do you go about getting this? i am only curious cause sometimes i just feel like staying at home doing things my pace would be so much better for me, i don't know i just feel like giving up sometimes, work is my biggest battle right now. I am currently taking prednisone and it works a little bit, but for the most part it isn't working for me at all. doctor wants to put me on chemo pills, don't know if i want to do that, cause i want to have a baby. i am just in a dark place right now, don't know what to do any info would help.

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11/15/2008 13:12
APSFA
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HI Nickoa, Your best bet is to hire a disability attorney. They work on a contigency fee so probably won't take your case unless they think you have a darn good chance in winning. Disability is a LONG process. You are looking at a couple years of hoop jumping.

Don't give up....your body knows when you give up and gives up with ya. Are you seeing a therapist?

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