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Old 07-20-2007, 05:36 PM   #3
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Join Date: May 2003
Location: Virginia, USA
Posts: 2,347
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: How long does it take?

Hi -

As usual, Vee's comments echo my own thoughts. Plaquenil was the 1st medicine I was put on and so far have never needed the steroids. Plaquenil fools your immune system into thinking all is well and does not have the puffy face/weight gain/etc. side effects that steroids have. I'd wonder if the doctor who put you on steroids first has any other lupus patients in his care?? I'd consider finding a different rheumie as steriods are the big guns. There are cannons, too, but first things first! Of course, your initial ANA level may have made the steroids necessary, but for my other concern ......

I'm also concerned that you were put on such strong medicines and had no follow-up for 6 whole months. What's that about????? I'm no doctor either, but as a lupie for 8 years, I have some personal experience. My doctor retested my ANA several weeks after I first saw him. My first ANA was 1:40 (big whoop) and 6 weeks later it was 1:600 or 1:800 and that got my attention. It was then I was started on Plaquenil and that helped a lot.

If you read many of the posts here, you're bound to find me tooting the "Stay out of the sun" horn. Regretably, sunshine makes all of the lupus symptoms much worse and they can remain annoying for weeks. The simple step of covering up before going outside including a broad brimmed hat, sunscreen SPF 45+, and avoiding being out during the hottest parts of the day in your area will do a lot to improve how you feel. Give it a try for a few weeks and see!

We lupies are also sensitive to heat. A lupie friend in hot, hot Texas has an ice collar that she wears to and from work. She keeps it in the freezer at home and at work so she can tolerate the heat in the car as she back and forth.

If you haven't read the stickies at the top of this thread, I suggest you do so as they are very informative.

Be sure to ask for a copy of all of your lab work as having a file by date will help as you and your doctors manage your chronic illness.

Hope you can find a lupus-expert rheumie who can better manage your symptoms. With a good doctor, care, and a few precautions, life can be pretty good.

Wishing you well - Barbara