Bleev

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About Bleev

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  1. Hi Climber, I also have MCTD. I was originally diagnosed with lupus many years ago and now the sclero is fully presenting itself. Looking back, I can see that the sclero was mildly emerging through the years with the lupus. I have markers for RA and the myositis, but no symptoms for those showing (thankfully--not wanting any additional :) ). I learned of the sclero last fall when pulmonary fibrosis was found. Glad to read that you are getting lots of thorough testing.
  2. Thank you Jo and Amanda! Jo, Congratulations on your AWESOME news and thank you for sharing it!
  3. Thanks for sharing the info for this center. Note: Just a typo to correct on the web page via the link--location is showing as New Orleans, Louisiana and should show as Charleston, South Carolina. :)
  4. I'm currently on daily oral cyclophosphamide and hope to switch to Mycophenolate for my ILD. The doctors did inform me of the potential side effects (also bladder cancer with the oral cyclophosphamide) but most immediate concern now is stopping the sclero lung progression. It is good to be informed and weigh the risk/benefit.
  5. Very interesting! My father had Meniere's. I have Lupus & Sclero -- hmm maybe a link...(?)
  6. Barefut, Many, many thanks for sharing your story! It is very encouraging and I am glad that you are doing so well I've been reading many good things about Cellcept and had asked my rheumatologist about it. He said that after the cyclophosphamide he would look at Cellcept to maintain. Continued good wishes to you
  7. Thank you so much Jo and Amanda for the encouragement and support. Continued good wishes to each of you as well :) Walking by faith and not by sight :)
  8. Hi Jo, Many thanks for checking-in with me and sorry for the delay in my reply. I've started cyclophosphamide pills to hopefully begin halting the pulmonary fibrosis. I really appreciate this site and all of the information provided. It is helpful to read about what one is prescribed and why. Keeping my fingers crossed that this works Hope you are doing well!
  9. Thanks for sharing this article. I especially liked the link you also provided on Vit D deficiencies as the information provided there was more in layman's terms :) Appreciate all info!!!!
  10. Thank you for sharing this information -- very interesting as well to read other articles on the passing of one of the researchers and the new treatments he tried for his illness.
  11. Sweet, Sending good thoughts your way--please continue to let us know how you are doing.
  12. Thank YOU so much for sharing this information!!!!
  13. THANK YOU ALL for your kind sharing and posts since I've last visited. I saw my rheumatologist today and it appears I do have Lupus/Systemic Scleroderma overlap. The scariest part for me is that the CT scan report said "Severe Pulmonary Fibrosis". That has my head spinning. I do not understand how it could be severe without my knowing along the way to this point. I see the lung specialist on Monday. The rheumatologist put me on Plaquenil. I know I have to take it one day at a time. . . I keep reading about going to a sclero center for an expert---at what point in this journey is that recommended? miocean: Thank you for sharing your journey and all of the good advice. I am so glad to read that things are holding steady for you. Guess that is our goal in this and I'm going for that too! Amanda: Thank you for sharing about your friend. You have a special talent for always writing in such a positive manner. Sweet: Thank you for your post about being in the same boat. I will go search now for the post you are referring to about your situation.