Thanks for the additional information. Plaquenil is the initial treatment of choice to slow disease progression. Prednisone is generally the next thing administered to treat the inflammation and get it down to a controlled point.
MTX, Imuran, and Cellcept are the 3 next options -- it varies from Dr to Dr which of the 3 they try first. And you may have heard "lupus has 10,000 faces" -- each person's illness can react totally uniquely to that person, so it is never clear which of the 3 might work. (In my case Imuran was first for 8 months, no effects, then Cellcept was my miracle drug - others get improvement with Imuran or MTX.)
Lupus is diagnosed by having 4 of 11 symptoms, there is NOT any one (or set of) blood tests to determine Lupus. Some drs diagnosis by symptoms, some hold out for blood work, but the College of Rheumatology and the Lupus Organization both hold strong to the 4 of 11 diagnosis method. My (fairly educated) guess is that she does indeed have Lupus. However, the dx isn't the main point, the treatment is! It does sound like she is getting adequate treatment.
It is *very* difficult to get a good nights sleep on that much prednisone....it's the equivalent of about
200x the adrenalin push those people that lift dump trucks off their children have. You might ask the Dr about
something stronger than Ambien so that she can get deep restorative sleep
. It isn't the quantity of sleep, it's the quality that we're talking about
. I know it's counter-intuitive, but I think I've said before what an amazing difference it can make.
I know the suddenness of this is a surprise to all of you -- this is a disease that is *VERY* sensitive to stress. It also is very sensitive to heat and sun. If I went on a Caribbean cruise, sunbathed in the heat, overate, drank, and did the go-go-go thing with site seeing, I would be terribly ill as well.
Even with all that you describe, she CAN get better. And you drs ARE doing the right things. If at all possible, some therapy concentrated on lowering stress would be a great help. Even knowing how you are feeling can be a relief as I'm certain she is imagining even worse things than you are. Bond together as a family, don't pull apart and alone. Check with www.lupus.org
, find the local chapter, then call them as locate local meetings & support. Even without a firm diagnosis, you will meet people in all stages of the disease and it will help. (Even I went, feeling like sh**, looking like sh**, and being a very shy person.)
Hang in there, you are not alone,
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde