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I decided to go to the Mayo Clinic in Rochester to get some more opinions. Went there yesterday. The rheumatologist there said that my lupus is still pretty active with high sed rate, low complements and anti dna of 1:320. Also white count is low. I have been living with the decision of taking cellcept and getting sick from it or not taking it and letting lupus take over. He said that was not an acceptable way to live and suggested I start taking methotrexate to see if I handle that better. Every time I suggested it to my normal rheumy he said no. Also am involved in a new research thing here in the US. Not sure I quite understand it, but hey, if it will help possibly in the future I'm all for it!! So, wish me luck on the new meds. I'm finally feeling a little bit of hope!!:)
 

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LUCK! Hope it works. Sorry you had so much problems with Cellcept.
 

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Very good news - a positive appointment with some new real suggestions to help you treat the lupus. Is Mayo very far for you to travel for follow up? Maybe you can find another local rheumy to listen to you and think of new things.

I hope you have better luck with the methotrexate.
 

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I do very well on Methotrexate, it can be a little rough to start with, but definitely worth it for me. Good Luck! I have been on it over four years.
x Lola
 

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Sounds like you had a very good appointment.:) It sounds like he knows what he is doing and very caring for you as a patient.

I have been reading in the "Lupus Now" magazine and they say doing clinical trials is a good way we can help make a difference in lupus research. :)

Good luck on the new meds.:luck:

Take care,
Lyn
 

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That sounds like a really positive appointment :eek:k:

I hope you do well on the methothrexate,

Katharine
 
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