Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Tracie - I can't remember if you were having trouble walking or not and I was curious if Remicade has helped with that? Every time they cut my steroids back I lose some mobility. I'm on my walker everytime I leave the apartment & I'm having garbage can wars with my neighbors in the building. I've been having some weakness in my legs for awhile-- but this stuff I'm going thru now is new. Whether it's a progression of the sarcoidosis neuropathy-- I'm not sure. The Remicade has been wonderful for the joint and muscle pain, and I'm able to be off my oxygen during the day. My cognitive abilities are better--but I still see some problems--so I try to adapt as well as possible. I find it's very important for me to stay mentally active--even playing "Tumblebees" and cards on the computer to keep my mind active. I've just changed to getting my infusions at 4 wk intervals-- so it'll be interesting to see if I see any more "forward" progress--or if I stabilize and just stop the progression of the nasty parts of sarc. As for the fact that you end up in flare when the prednisone is decreased-- one of the ways to handle that side effect is to be on another immunosupressant like Imuran or Methotrexate. It's important to have the MD start you on something to take the place of the pred--so that the sarc doesn't get a foothold--and then trying to suppress it is much harder. MTX and plaquenil both take a few weeks to kick in-- so you really want to get this going. As for the garbage can wars-- screw the neighbors. Put that can on the stairs, and roll it down (I do hope it's a metal can! LOL) Whatever happened to "help thy neighbor!" Hanging in there with all of you, Tracie NS Co-owner/moderrator Quote Link to comment Share on other sites More sharing options...
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