Lupus?! Eight Months To Live?!  

Hi ilikesoda, I don't have the experience of Lupus, not from family and friends. I feel sorry for your friend, but I have read about people with Lupus and still go on living because of medication. please don't feel that she have lost all the hope, if she's not satisfied with her doctor then she can go for other doctor's opinion. I'm sorry if my answer wasn't helpful, I just feel sympathy for your friend. Take care.

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.

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.

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/

Hi,
I just posted a response. But when I pressed to post it, it seemed to disappear. (Darn!). Short version:

So sorry to hear about your friend. I just read your posting from 7 months ago. Is she still hanging in there? She must have been far into the stage when diagnosed. Has she seen other doctors for second opinions? It's doesn't sound common at all that they told her she only has 8 months to live right away after diagnosis.

I was put on prednisone/corticosteroids, and though it has so many terrible short and long term side effects that I despise of, it also contributed to saving my life several times.

If it is kidneys, is she on dialysis (pumping blood out/cleaning/pumping back into body)? This is also a life saver. And as somebody else said that CellCept for some can really help, and help taper off prednisone.

Feel free to send me a private message. Glad she is cutting the cigarettes and alcohol.

Best of luck to you guys! Let us know how she is.