Thread: Aps
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Old 02-03-2006, 05:45 PM   #5
LMHART LMHART is offline
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Join Date: Oct 2004
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Re: Aps

Hello!
VeeJ - thanks again. No, my bleeding has not totally stopped. It has slowed down a lot, though. My platelets are actually too high, figure that. I have not been on this site for so long because of all this craziness with the doc's and trying to keep my job. I have been so sick and trying to make it through gracefully! So, I have not heard too much of Angelicbrat. Thank goodness she has the sticky posts for everyone out there to read. I have never heard of rhupus. I am going to research it more. How do you stay so informed?
Pambyboo - the lab results over the past couple years are all over the map. One time I am positive for something and then it comes back totally normal. Like my ANA....it came back normal last time but my CCPIGG for RA came back very positive. The not so nice doc said that it didn't make sense. He said that the very positive RA test should influence a very high ANA result. He said that he wasn't impressed with my ANA. (I had high positives sometimes, though in the past.) So, I thought that I didn't have Lupus. He snapped at me and said not to put words in his mouth! He just said that my case was too confusing and gave him a headache. I would have full blown pericarditis and pleurisy, proteinuria, etc., etc and my labs would be perfect. He never tested the anti-ndna, the new doc did. My sed rates were always high, though. The old doc said that I didn't fit the "typical" Lupus patient. When the Lupus would be in control, the RA would flare terribly, to where I could barely walk. I started back on the Enbrel and feel so much better RA wise. The new doc says that Rhupus patients are VERY complicated and are a great challenge. I think that most docs don't understand it and are intimidated by it. That's when they get defensive when asked questions that they cannot answer. I am so lucky that I found someone who loves a challenge. He said that Rhupus is a mystery still but can be treated basically the same as SLE & RA, we just have to be monitored closer. The kidneys, CNS and heart are our big issues. What does your doc say? What state are you in? I bet that so many of these people on this site actually have Rhupus and just don't know it yet. Can't wait to hear back from you!
Leslie