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Bird Lady

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About Bird Lady

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    Silver Member

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    Southport NC

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  1. Tonya Birdman also see's Dr. Shanahan and we think he is great. BMW
  2. Well Folks it looks like Birdman is going to have a allogenic stem cell transplant at Duke. They are testing his HLA with his siblings right now. We should hear within two weeks if there is a match. We will keep you posted!! BMW
  3. Hi everyone, Well we've tried Cellcept (mycophenolate mofetil) which didn't help and 12 months of IV Cytoxan (Cyclophosphamide) which seemed to help for about 9 months. Now my lung function is worsening. I'm hoping for a stem cell transplant but my doctor currently has me on a drug called Azathioprine. Has anyone ever heard of it or had any experience with it? It's an immunosuppressant drug used for kidney transplant patients. Birdman
  4. Well BMW made me a dentist appointment so I guess I'm gonna have to go. She told them about my mouth and the terrible gag reflex. They said their gonna "gas" me. BMW checked with my doctor and he said it would be OK. Has anyone ever been "gassed" at the dentist and if so what was your experience like? Thanks for the input. Birdman
  5. Hi Karenlee, I have those places in my mouth. Sometimes I think I bite them and it makes a sore. I use peroxide on a Q-tip and it seems to help it heal faster. Good luck with yours, Birdman
  6. Has anyone ever had problems with their mouth, Birdman has a little pain in his right molar area, also he is a terrible gagger. He always went to the dentist (before Sclero every 6 months) now he gags so bad just brushing his teeth, he hasn't been now in 3 years. I called his dentist and they are great, willing to work with him as best they can. Just wondering if anyone else has had jaw, tooth pain, tenderness in the gums? is this normal for Sclero ? BMW
  7. Hi Megan, Sounds like acid reflux to me. I have the head of my bed elevated and take Nexium each day. This has helped me. Good luck, Birdman
  8. Thanks Sam, BMW and I were just talking about Sadie last night and wondering how she was doing. Please let us know when you find out. Birdman
  9. Hi, I had severe edema in hands and feet for about six months before the hardening began. My skin score went to a 23 and I had lung involvement. My doctor got me into the SCOT study and I had 12 Cytoxin IV treatments. At my most recent doctor visit he said my skin score was about a 3 and my breathing is much improved. Good luck to you, Birdman
  10. Hi Sam, Thanks for the update on Sadie. Isn't it funny how this ugly disease has made us all feel like family. Birdman
  11. A recent chest CT showed that I had two nodules on my left lung. My sclero doctor didn't seem too concerned about it and said we would do another CT in three months and they would probably be gone. Apparently this is a common occurence. Try not to worry. Good luck, Birdman
  12. Sadie, You have been such an inspiration to us all. I have the same disease as you and have read each post intently. You have been so strong. Stronger than most of us whiners. Thank you! Keep fighting. Don't you give up!, Love, Birdman and Bmw
  13. Sadie You are in our thoughts Thank you for all you have shared with us, we are all stronger because of you Always Birdman and wife
  14. Hi Smac, I have diffuse sclero. I have muscle pains primarily in my arms. The only thing I've found to keep it under control is low dose prednisone. Good luck working this out with your doctor. Birdman
  15. Hi JG07, About a year and a half ago my breathing was terrible. I couldn't walk the stairs to our home without bending over and trying to catch my breath. My doctor put me on Cellcept for a period of time and my breathing did not improve. He then made the decision to put me into the SCOT study and I've received 12 infusions of Cytoxin. My breathing as well as skin score and other symptoms are much, much better today. Maybe Cellcept isn't the right treatment for you. Good Luck, Birdman
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