Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Hi Joanne, we're glad you found us and that has someone to help advocate for him. It sound like he's having a tough time with this. The rash may be the Lupus erthymoseus (sp) or Erythmyosis Nodusem that we get. Basically, its sarcoidosis rash. What have they done treatment wise with ? Did they put him on high dose prednisone? For how long? Ask whatever questions you have-- and we'll do what we can to help find answers. I'm glad you're getting him into a sarc specialist. I know PA has a good clinic. Take care, and don't hesitate to ask questions. In our LINKS and ARCHIVES-- scroll down, you'll find it at the bottom of the messages-- you can search and find many articles that we've found helpful. Feel free to print them out and take them with you to the MD's. Sincerely, Tracie NS Co-owner/moderator Hi Everyone,I am new to this board and, quite frankly, I personally do not have sarcoidosis. However, a dear friend of mine does and I am trying to find out as much as I can about the disease. I know that you are all a very valuable resource and I would like to try to establish a dialogue with this group so that I can help my friend, , as best as I can. He has neurosarcoidosis and had surgery two years ago in May. The surgery left him with very little feeling from the stomach down and he has spent the last two years fighting to get well. He was told that he had the sarcoidosis in his lungs as well, but that seems to no longer be there. He is now having a problem with an uncomfortable rash on his arms and chest. We are scheduled to go visit a doctor in Pittsburgh who is studying this condition and has agreed to see him. His name is Dr. , in case anyone out there knows him. Any and all help you can offer would be appreciated. is only 25 years old and he lives in a rural part of Pennsylvania. His access to things is limited, but I am able to do much more to help, I live outside of Philadelphia, in New Jersey. I look forward to speaking with you on this board and I am so grateful you are here to help.Joanne The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
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