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rlbrussell

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About rlbrussell

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    Senior Bronze Member

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  • Location
    Chapel Hill, NC

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  1. We are moving to San Diego and I am really looking forward to the climate! However, this means establishing a new medical team :( Does anybody have any recommendations for Rheumatologist in the San Diego area? Thanks so much!
  2. I have been on cellcept for 4.5 years with no side effects. When they switched me to generic the sclero came back with a vengeance so I am back on the name brand and back in remission. It took 5 months to get things under control.
  3. Mine started on my right index finger and quickly spread to my entire body except some patches on my back. I had one softening phase and then another hardening phase which has been worse than the original one. I started IVIG a few months ago and now it is softening again. Crazy!
  4. It took six months before it started working for me.
  5. Cellcept has been a helpful medication for me but it took a while to start working (6 months). My first year was really tough but I am doing a lot better now. What I learned that first year was that it is best to just take things one day at a time.
  6. My life is far richer than most for I have experienced the depth of both the process of life and the process of death and all from the perspective of a young mind. What a rare opportunity.
  7. I am going to try to move around more today and drink more water. Thanks for the advice. There are so many people in here getting different kinds of infusions. I have my computer to keep me occupied but most everyone looks pretty bored.
  8. Thanks Janey. We hope to see a benefit for the IVIG soon. If this doesn't help me get stablized again then we are looking into stem cell transplants.
  9. I finish my first round of IVIG tomorrow. So far things are going well except that I have a persistent headache. Anyone else experience this?
  10. I too have a lot of skin involvement on my face. Initially, the changes were positive. It lifted my eyes and my skin looked smoother, but now it just looks like plastic surgery gone bad. I have pain in all of my facial bones as well. I take medication for the pain and it works really well for me. Rosa
  11. I was just wondering if anyone has been successful getting approval for IVIG through Blue Cross Blue Shield? My doctor wants to try it for my scleroderma which is really active right now. I also have polymyositis but it is completely under control. I hope we can get it approved.
  12. Thanks for all the encouragement. I am feeling much better, finally! The doctors think the complications were related to poor wound healing. They were very aggressive with the laser and covered a large portion of my stomach. I need to get a cbc this week and hopefully everything is moving in the right direction. Rosa
  13. Hi Everyone, I have a question for those of you with GAVE. I recently underwent laser therapy because I started to actively bleed again. I was stable for 18 months. The recovery has been horrible. I have had so much pain in my stomach and heartburn that is unbearable. I am 10 days out now and starting to do a little better, but I was wondering what others have experienced. They need to go back in a few weeks but my recovery has been so painful that I told the doctor I was considering bleeding to death as an alternative to undergoing the endoscopy procedure again. Rosa
  14. I was tapering off of cellcept slowly and unfortunately my symptoms returned after being completely off for one month. My skin started to get really tight on my legs and after two weeks I had new skin tightening all over my body. So I am back on my 3grams of cellcept and fortunately things have slowed down again. Rosalinda
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