Guest guest Posted December 23, 2010 Report Share Posted December 23, 2010 Hi everyone! Sorry I haven't posted in a while. I just spent a month being really sick giving methotrexate a whirl. That really did a number on me, then my LFTs shot up pretty high after only 4 wks on it so I had to stop it anyway. Well now my rheum wants me to try Ilaris. I know some of you here have tried it. Anyone have any success on it? I did search back in posts and I remember some of you also had a fun ride trying to get your insurance to approve it. That should be fun! My sister and I had been diagnosed as having Undifferentiated Connective Tissue Disease recently, with Stills and Lupus being 2 possibilities. Well now the docs are thinking more along the lines of autoinflammatory genetic periodic fever syndromes again. I had some limited testing in that area but he said they are starting to see adult-onset periodic fever syndromes (PFS) that were thought to only be infancy/childhood-onset. He said " You two may very well have something we've never seen before. " Not sure I like being so special! lol He contacted a Dr. at the NIH (National Institutes of Health) to see about us both getting seen there for further evaluation. I do hope we get in there to see someone. The Dr. he contacted just discovered a new PFS in 2009 there. I'm also scheduled for a biopsy of my facial flushing/redness/rashy/worse in the sun type thingy. Hopefully the scar on my face won't be too big! Has anyone here had any experience traveling to the NIH? We'd be coming from Maine so was wondering if they have lodging for that kind of situation? I'm guessing we'd only be there a day or two. Happy Holidays! Aubrey Quote Link to comment Share on other sites More sharing options...
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