Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Hello. My name is . I am new to Lupies (I always knew I was a little loopy, so this must confirm it). After living with Lupus for 30 years, it is good to finally have a group who understands. I know there are all sorts of support groups out there, but have never joined any. I have been an island trying to make those around me understand why I am always tired. I was diagnosed when I was 13, but they can trace it back to age 9. I had a wonderful group of doctors from the University of Minnesota who originally diagnosed it. All I had to do was walk in the door and they knew what it was. High doses of prednisone threw it into remission. I have had odd-ball symptoms every once in awhile. February of 2003 I had my aortic valve replaced (this is where the Lupus did the most damage at age 13). Things went wonderful, for awhile. A few months after that I had a rash on the back of my neck. Nothing big, but just annoying. It didn't go away, and the doctor was not sure what it was, but here is some cream and come back if it doesn't go away. It went away there and then showed up on the front of my neck. Still did not go away. After that it started spreading. I got the following: drug induced re-action, or allergy, or maybe it is the Lupus. We don't know. Do a biopsy and we will let you know. Biopsy came up negative, but rash spread, back was covered and now was infected. FINALLY, my general practicitioner sent me to a dermotologist. They did another biopsy. No antibodies were showing up in the biopsies, so no one was quite sure was happening. What a rollercoaster ride. Try this med, now add this med, now add this med. I am on Plaquinil, Accutane, Prednisone, and nothing is working. Now they want to try Imuran. I am hoping this works. My children just want their mother feeling better. My husband is frustrated that he cannot take this all away, and is afraid he is losing his wife. With Accutane and Prednisone altering my emotions, I need someplace safe to cry when it all gets to be too much. I found this site in my search. I am hoping and praying it will help hold me together through all the trials. I wish to be that bright, positive, encouraging person again. Thank you for listening, and I am glad I am part of the group. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.