Quick background... Had flare in December 2010, I know a flare is starting when I get this tingling in my legs and at the same time I start getting blood in my UA's. The leg thing is not painful really, but it feels like sunburn on the inside of my legs, just a constant tingling/burning. It tingles enough that I have to take Ambien every night to sleep, nothing else can overcome it. When things great really bad then the tingling gets pretty intense, it not really painful, but not pleasant either, and in addition I get a pain in my right kidney. The kidney pain is intense, like really intense, pain pill intense. This past Feb/March I got to the point that I needed pain pills and then when I got the RTX infusions the pain went away in days. After the first infusion I was basically pain free and off pain pills for two months and then it gradually started again over the past month, now I am on pain pills everyday.

Went to the doc and she just does not get what is going on, but she is awesome and is helping me to limit the pain the best we can. Thankfully the RTX is working and the protein in my 24 hr. UA is going down by about 30 points a month, started at 310 and now am at 252. The fact that the RTX is working though makes it more confusing, technically pain should be going away and not getting worse. She thinks it is nerve and unrelated to Wegs, and wants to give meds for that, but I just don't think it is... I think it is Weg's related...

Does anyone else have this? It just is so weird. Especially the leg thing, although in my first go round in 1992 I had severe vasculitus in my legs so makes sense that something is going on with my legs. As I sit here typing this my legs are tingling/burning like crazy and it feels like someone is grabbing my kidney and squeezing away. Sigh...