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Hey Guys, I'm new to all this but just wanted to share my story...

Posted at 6:45 AM on Oct 22, 2009 by noomylime, #45328
Hey Guys, I'm new to all this but just wanted to share my story with everyone so I feel like i'm not so alone! I'm 23 and was diagnosed with SLE 3 years ago. It started in my joints and then moved to my kidney's real fast. I now have stage 4 nephritis, finished 6months of cyclophosphamide in Feb and have been on no less than 40-20mg of pred for about 2years. Just when things were starting to look better it has stared in my blood so they are trying to up my dose again. It has thinned my bones so I am on special meds for that now too. I know taking the pred is something I need to do to live but it comes at a really high price. I don't even look like the same person I used too because of the moon face. I know it's shallow but at 23 it is almost as bad as having to live with this disease. I now have really low self esteem and get anxious all the time, which is affecting my job. As much as I want to come off I also worry that I would have to stop work again as the pred is what keeps me going. All I want to do is get off it though! Anyone know any alternatives? Also, just wondering if you guys are still drinking alcohol while taking pred? Thanks for listening guys!
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Reply 17 days ago on Nov 04, 2009 by ajd102, #24189

www.lowdosenaltrexone.org I've been taking 4.5mg of LDN for the past five months for mixed connective tissue disorder, which includes lupus, RA & scleroderma. It has helped me tremendously! For a list of doctors in your area who could prescribe it for you, see aso ldners.info. Please consider going on an anti-imflammation diet as well eating more gluten-free/casein free foods, cut out sugar as much as possible, NO ALCOHOL, juice your veggies if you're not a big veggie eater and google "functional medicine" and find the organization that has a database of doctors who practice this type of alternative therapy and make an appt w/ one in your area as well. The saying is absolutely true: YOU ARE WHAT YOU EAT...and eating the right things and eliminating everything else, along w/supplements & probiotics will turn your health around for the better! My story is here as well under ajd102 and forgive me if I don't remember when I posted but it was sometime in August. All the best :-).

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