Lupus?! Eight Months To Live?!

United States
November 24, 2008 7:11pm CST
A really close friend of mine was just diagnosed with systemic lupus erythematosus (SLE) and autoimmune hemolytic anemia (AHA). The doctors told her that she has eight months before her body kills itself. I first off want to start by saying that I refuse to let her take the corticosteroids that she's been prescribed. I'm not doing this because I'm a terrible person. I've known two people in my life to have had SLE and both got worse while taking the steroids. Both also started with homeopathic remedies. Sadly, I've lost touch with both of them and was wondering if someone knew of what she should be doing... I refuse to see my friend die. She just turned 21 and is the most beautiful person I've ever met. I need feedback. Experiences? Remedies?
3 responses
• United States
15 Dec 08
I have Lupus Nephritis. So my Lupus is also attacking my kidneys. I was diagnosed in 2004. I only have 22% kidney function(that is combined) The ONLY reason I am alive is because of the combo of Prednisone and Cellcept that I was started on at the time of my diagnosis. I am also happy to report that after 4 years of Prednisone, Cellcept and Imuran I AM IN REMISSION! My kidney function will continue to decline but at a slower rate. I am sorry but prednisone is a life saver. Yes you get swollen and tired but it does wonders for people with Lupus and really if she wants to live she should try everything under the sun, And you should butt-out. Do not put that in her head that it will hurt her. What if it is the one thing that could save her? Until you have an M.D after your name leave that to the doctors and her imediate family to help her with her decision. Best of luck to your friend.
• United States
18 Dec 08
Good to hear you're doing well, but everyone is different. And when I said that they got worse by taking steroids, I mean that they began deteriorating quicker. Swollen and tired are nothing. I ended up getting in touch with an old friend with SLE and she's been in touch with my friend. Turns out that since she hasn't been taking the steroids, has cut gluten out of her diet, quit smoking and drinking, she's been getting better by the day. Thanks, though. (P.S. I'd rather take it upon myself to help her with her decisions because I don't trust doctors and her family REALLY doesn't care. I am her immediate family. Thanks again.)
1 person likes this
@Luchie50 (51)
• Philippines
27 Mar 09
hi mylotters, last week my friend was admitted to the hospital due to her lupus but we were so scared when the doctor adviced her to take steroids. As we all know that once steroids is being recommended to lupus patient means the status of patient gets worse. My friend is only 42 years old still single and she's a big lost in the company if ever time comes for her. All of us were so worried about her situation since till now shes still at the hospital and yet there's a big changes of her posture shes getting thiner. Pls give us your support . thanks to mylot/
@Loen210 (1533)
• United States
25 May 09
Hi Luchie, I guess the original posting person hasn't checked back or been active on MyLot. How is your friend doing? Read my response below your's. Hope your friend is hanging in there.
@Khayam (346)
• Romania
26 Nov 08
Well, although costicosteroids and immunosupressants seem to be used by most of the specialsts when it comes to SLE, first your friend has to make sure that the diagnosis is correct. ANA is the most sensitive screening test, where anti-Sm is the most specific. The Ds-DNA antibody might be fairly specific and could offer fluctuating results with disease activity, mainly by monitoring the evolution of the flares. Possible medications: - methotrexate, azathoprine, cyclophosphamide, chlorambucil, cyclosporine. - also, mycophenolate mofetil (Cellcept) had some good results with lupus, especially when it is associated with kidney disiease and in maintaining remission after - plasmapheresis - is sometimes used in SLE patients with serious brain/kidney diseases - recent research indicates that rituximab (Rituxan) has a good potential in treating SLE. - some studies highlight that low dose dietary supplementation with omega3 fish oils could help patients with SLE by decreasing activity and possibly decreasing heart disease risk. These are some ideas, before taking them into consideration, you should discuss with a specialist from your country. I might be wrong with the names, but English is not my native language.
• United States
26 Nov 08
Thank you so much.