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recent diagnosis

Kellyb Message
18 Aug 2009, 07:56 PM

Glad to have found you! I was diagnosed with A.S.S. in July 09 after spending 11 days in the hospital with decreasing lung function. I have no presentation of other autoimmune disorder symptoms. I was healthy until this May, when I was short of breath and very fatigued following a virus. By the end of June my lung function was at 47% of normal. I am currently at 38% of normal lung function, am oxygen dependent, and am being treated with high dose predinsone. I will meet with the rheumatology team for the first time later this week and hope to learn more about what type of Antisynthetase syndrome I have and what healing from this might be like. I am also working with a naturopath who is helping me with suuplements and diet to reduce the imflammation process in my body and soothe my wacky immune system. What things have you found helpful for healing interstitial lung disease caused by ASS?
juliarey Message
20 Aug 2009, 11:59 PM

Hi Kelly! I imagine what shock this must be to you. I began with symptoms more than a year ago, and sometimes I still can´t believe it. In my case, prednisone was very usefull. I´m feeling very well and my tests are coming better each time. I also took ciclofosfamide for about seven months, and now i´m with metotrexate. But I think prednisone its the most important. I had a lot of other symptoms, like arthritis and muscle weekness. My lung disease wasn,t so bad as yours, but my function and my scans have improve a lot since i start the treatment, hopefully you will get better too. I wish you all the best. Try to be positive and leave stress behind. Many kisses Julia PS: I speak Spanish. I hope you can understand my english.