Hello, I was just diagnosed two weeks ago with ASS. I had joint involvement that was originally thought to be a form of RA. I developed the lung involvement this past winter and found out four weeks ago that my lungs were still getting worse even though I was on 60 mg of prednisone a day. I was put on Myfortic four weeks ago. I better pulmonary function tests but my ct showed more interstitial spots. I could use any advice any has to offer on what treatments work for them. How long of some of you had this and is it getting any better?

ASS is such a frustrating disease, especially since there is so little information available and so few protocols. We are all really winging it and hoping for the best. I feel I have been fairly lucky so far but it has been a long journey. In midMay 2009 I was feeling short of breath, tired and achy in the joints. Within 6 weeks I was hospitalized and down to 33% lung capacity. Eleven days later I was diagnosed with ASS and began immediate high dose prednisone treatments (250mg, then 80 for a month, then 60 for 2 months, 50 for 2 months, 40 for 5 months, 30 for 2 months, 20 for 2 months and am now holding at 15mg/day). About 3 months into treatment we added Azathioprine/Imuran (100 mg/day) and NAC 1200 mg/day (an amino acid supplement that helps the lungs). I have slowly and steadily regained my lung capacity and when last checked in April was back up in the 70% range. My lung efficiency is still lagging around 55% but slowly improving too. I am no longer dependent on the oxygen concentrator and am just using a portable system when out walking or exerting myself. The hardest parts of my days are contending with the medication side effects. But finding various helps for those here and there. You might want to see your test results and find out what sub-type of ASS you have (PL-12, PL-7, KO, OJ, etc) as that may help guide your treatment choices and help you when looking at some of the research. That information should be on the results for the Myositis panel they would have run to get your diagnosis. I have the OJ subtype, which seems to be about 2% of all ASS diagnoses and generally has lung involvement only. It has been an arduous journey, but things are getting better. I hope you start to see improvements soon.

Hi all - My husband was diagnosed in May with UIP and has tested positive for several autoimmune diseases including Sjorgens and RA and has positive anti-Jo1 which as Kelly mentioned is what points to the lung disease part of ASS. He also has positive ANA. My husband began to have a cough several months ago along with increased achy joints and nodules on his elbows. (no shortness of breath and he is not on oxygen up to this point). He had been diagnosed with dermatomyositis several years ago but it was not severe and he actually went into what you might call a "remission" for about one to two years and then these symptoms. I believe dermatomyositis is associated with the development of lung disease. Because when he was diagnosed the CAT scan showed honeycombing in his lungs and his lung function was reduced by 40%, they started him on IV Cytoxan. He will be going for his second treatment tomorrow. With the first treatment he did not have significant side effects so hopefully it will be the same this time. I think the best advice is to have a good rheumatologist and pulmonologist that you trust as they are the two most important physicians you will be dealing with. I did forget to mention that the rheumatologist put him on a very low dose of prednisone last week (my husband has been resistant to taking this in the past). With the prednisone, he has been able to cut back on the Aleve that he was taking a couple of times per day. After the third treatment of Cytoxan the pulmonologist will give him another full pulmonary function test to determine if there has been any improvement with the Cytoxan. Although new at this, I just wanted to pass on any information that might be useful to you. Keep in touch. Regards, D.

I am now 49 and have had ASS for almost 2 years. I have tried Enbrel to no avail for me. I use Rituxan infusion every 5 to 6 months, Cellcept daily, Advair inhaler and finally at this time down to 10 mg predisone. Lung function is improved. Muscle function also improved. Knowledgeable Rheumatologist is a must but you have to keep updated and do research yourself. Also, a very supportive family and friends will keep you positive in down times. During rough times,my family and I laugh together and call me a turtle, but all in good humor. Best Wishes to you:)

Hi Everyone: I just want you to know that things can get better. I have had ASS for 3 years. I have everything else. I have have IV Cytoxan for 6 months and I have been on Predisone for 3 years and Imuran for 2 years. I'm doing good right now. The Doctor told me he is so pleased I'm still alive. I have always been a half cup full person. And I never complained. If I can share something. Be honest with your self when you speak to the doctors. Make sure they document everything in your charts. I am appling for Social Security Disability and the problem I am having is that there is not much in my charts with complains so I have been denied. With all this it's nice to know there are others who understand. Good Luck to all

Beth - it is good to here of someone at least stable with this disease after a period of time. Do you get PFTs often? You are like my husband - he never tells the doctor how he is feeling - I call him the "silent sufferer". I also can image what you are going through with trying to get SSD. My brother-in-law who has multiple sclerosis had a difficult time getting it even though he was obviously unable to work, etc. But he persevered and got it straightened out - so I know you will too!! Regards to all D.

Hello!! I don¨t have much time to write now, but I want to share with you that I get the first symtomps two years ago, and I am really fine right now. My lungs are much better. I took Prednisone (60 mg) and Ciclofosfamide, that worked very good for my lungs!!! I wish you all the best!!!! It´s possible to have a good life with this desease!!!! Many kisses Julia