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What the heck?
May 1, 2007
Hi, I'm new here....was diagnosed about 1.5 years ago and had organ involvement and about 9/11 classic symptoms + supporting bloodwork so I was lucky and was diagnosed quickly since I was a textbook case. I was in/out of the hosital the first 6 months for heart problems and supsected neurological problems. We finally "shut it down" with IV steroids last March (year ago) when the prednisone, plaquenil, and cellcept I was taking weren't cutting it. 60 pounds later :( I'm still trying to get off the prednisone (12mg) because it is wreaking havoc in multiple areas but my bloodwork is almost normal, got a prescription for physical therapy since I've been having trouble getting going again (as a mom and wife I end up using all my energy for that) and even a nutritionist to help me (I also have joined weightwatchers). Here's the "WHAT THE HECK" question...I've been trying to get off of prescrpition pain meds and just spoke to my doc on the phone and asked her if my joint pain and stiffness if from gaining weight and inactivity or the lupus itself, and she said that it's probably a combination for both but mainly the lupus itself. She said that even with normal bloodtests you can still have the symptoms of lupus. She is a great rheumy and I don't doubt her, but must say that I am floored and upset. I thought all this crud would go away once I got it resolved, which I thought meant normal blood tests. I guess I'm lucky that at least I have a compassionate doc who doesn't rely entirely on blood tests and ignores that patient. BTW, I'm 40.
Thanks for the rant. :)

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