:rotfl:It has been a long time since I have posted here. Dxed with Lupus in 1995. Very sick for a couple years. No organ involvement until 9-07. Pulmonary doctor performed all the necessary tests concerning my shortness of breath. Scans, PFT, chest x-ray, oxygen levels in blood etc. Ends up telling me it is pulmonary fibrosis, nearly the same as interstitial lung disease. One great consollation was it was not pulmonary hypertension! Thank God. The prognosis of that is worse than with the fibrosis. Can someone shed some light on this terrible condition? Does anyone have experience with this? I need encouragement big time. I knew my breath was getting shorter on exertion for about a year and a half before I went for tests. She started me on 10mgs of prednisone immediately in 9-07. Cut it back to 7.5 a couple months ago. Was already on 2.5 since about 2003 for low platelets. Of course that was helping keep the joints in control. No joint problem now for sure. Taking 400mgs plaquenil also for years. I wonder if we need to be more AGGRESIVE with this lung problem. I have been trying to bury my head in the sand about this and I believe the shortness of breath may be getting worse quick. She says the lower 2 lobes are already scarred. I need to ask her to show me the scans and give me a better idea of how far gone the lungs are. Once the scars are there, too bad for me. I guess I am dealing with fear and I have not shared it much with my family. My 21 year old daughter has been to all my 3 month appts with me since Sept at the pulmonary specialist. Maybe she is having fear also and doesn't want to talk about it. Maybe the doctor hasn't expressed the prognosis too boldly to us. I just need some input from you good people that know about this. I have faced death 3 other times with all my diseases and syndroms but my good Lord and Savior Jesus has decided to spare me those times. I live alone. Have another daughter 27 years old and 2 beautiful grandsons, 8 and 5. Sorry this is so long.
Maybe I need immune suppresive treatment? I probably do need all the major blood work up to see the complement levels to show the inflammatory process at this time? I only have medicare and I feel they don't go all the way when I don't have any other insurance to help out????? Thanks for all your input. Mel I have always been very positive about all this mess for years but seem to be letting this all bog me down to a degree. Help!!!:wink2: