Hi all, a little more positive story here; diagnosed with SLE in 1997, told it was serious enough that my lifespan would be much shorter. Had various treatments (methotrexate, prednisone, and was put on plaquenil). The plaquenil, once it kicked in (about 6 weeks) really has kept it under good control. Some flares, lots of various infections including MRSA, and some kidney and heart damage, and a blood clot once, but I am hanging in there. Everybody is different, and that is one of the hardest things about this disease: your symptoms will not be like anyone else's, and what works for someone else may not work for you and vice versa---a maddeningly individualized disease. All I can say is what has worked for me:
---to listen carefully to my rheumatologist, and to change rheumys when it was warranted. Second opinions are fine, but sticking with one good doctor and following her or his advice is the ideal
---to stay strictly out of the sun; if I am 5 minutes in the parking lot to the car unprotected, I will start a flare the next day. Some people are less sunsensitive than this, but a lot of lupus patients suffer because they aren't aware of how even little bits of sun exposure can hurt
---plaquenil, faithfully, never miss a dose; keep watch for retinal toxicity of the eye, a rare but serious complication of long term use (annual ophthalmology checkups are a must)
---aspirin, daily small dose, and as soon as I feel a flare coming on, I kick it up. Not NSAIDS, but real live aspirin. Once during an H Pylori infection, I had to stop taking aspirin and thought I was going to go nuts with the increased waves of pain and inflammation.
---a skin salve called Lupicare for the lesions and facial (and other) swelling--I have used it around my eyes when they swell up to the size of fists, and it helps, takes a few days but immediately feels better. YMMV, of course
---SLEEP is crucial: at least 10 hours a day for me, and preferably 12 as my doc suggests
---gentle exercise twice a day--yoga and indoor swimming are perfect, and a fellow sufferer I know prefers walking (sunprotected of course).. Some say to lift light weights for long reps, but my joints won't tolerate that. Slow calisthenics are good---sit ups, push ups, lots of stretching.
---my back ached a lot for a while so I got a gravity hanger, inversion boots, whatever you call it--this helped a great deal and I go back to it regularly
---did I mention SLEEP, and be willing to take a powernap as needed? Rest often during the day. lupus is an ada disease and a reasonable accommodation is that you have to take frequent rest during the day.
---keep stress under control in any way you can.
---I went dairy free and gluten free and not only lost excess flab but have fewer flares; I also backed off the wine in the evening. Obviously, don't smoke.
---attitude. Lupus is bad, no question about it. But your mindset can either make it worse for you or better for you; I choose to make it better by keeping in mind all the things I *can* do, and doing them, not denying the bad truth of this but also not giving it any more power over me than it has to take. When in flare I keep telling myself, "ok, this will not last forever, you can wait it out"---and when not in flare, "ok this won't last forever so you'd better enjoy the good times"! You can definitely have a happy and good life with lupus, and I intend to prove it. Good luck to all. --A.

Jump to this post