Dear csarv, I would very much like to talk to you about your experience and treatment for AS.S. and interstitial lung disease. I was diagnosed with AS.S. after rapidly losing my lung function over May and June. I am being treated with high dose prednisone and am hovering at 38-40% of normal lung function. I am trying to learn as much as I can but there is so little information out there. Hope you are doing better. Thank you for your time. Kelly

Hi Kellyb, Please forgive me for not responding sooner to your message. First, I hope you are feeling better; your story sounds a lot like mine. I am happy to know that their others out there in the same boat with me. I don't feel so alone now in the JO-1 boat. You would like to talk about my experience with antisynthetase. Well, it has been unfolding in front of my doctor’s eyes since May of 08 when I became sick for the first time with bronchitis. I was sick in the hospital for 40 days last summer with no answer. Finally I was diagnosed in September of 08. The doctors believe the bronchitis is what kicked my immune system in to hyper mode, and one by one things started to happen that have never happened to me before. I like you presented backwards with the lung disease first, then skin problems, and finally muscle weakness. The doctors tell me people with JO-1 usually have muscle weakness first, and the lung disease further down the road. Unfortunately with the severity of my lung disease I was evaluated for lung transplant in November of 08. luckily my lung function has improved a tiny bit so transplant is not on the table right now. I also have been on high doses of prednisone. The prednisone helped a little, and then the doctors added heavy duty immunosuppressants to my daily medicine intake. Right now, I am on Imuran and Cellcept for my lungs, and have been getting IVIG treatments for muscle weakness. I think the IVIG has also helped a little with my lungs. I will know next week when I go for my next PFT. My best advice to you is find a pulmonologist and a rheumatologist that you like and feel comfortable with, also when you feel a little better see if you can get into pulmonary rehabilitation this helped me a great deal. Also don't stop looking for the answers. I found a lot of info on the web about the disease, and most of all don't give up hope. So, I hope this helped a little. Take care of yourself, and those you love. Csarv

Thank you for your reply and all the information. Much appreciated and good timing. I am being well taken care of by my pulmonology team. They are seeing me every two weeks and watching me very closely. I will see them tomorrow and had planned to push for pulm rehab. The Rheum folks don't seem very interested and we've had to fight to get them involved or even consult on treatment courses. They simply view me as a Interstitial Lung disease patient that had a positive Jo-1 test and that it was the precipating factor in my lung issues. So it's been frustrating in that respect. I have been trying to research, write to various doctors and find options to both recovering my lung function and keeping the Jo-1 at bay. Of course with so little energy, two little kids, etc, it's a hard and steep learning curve. I have been learning about Cellcept and that may be a good option. I have been struggling terribly with muscle weakness and all my muscle enzyme tests are in the normal range. The docs say it is a side effect of the high dose prednisone. And I'm sure being so flattened the past 3-4 months contributes. But I am pushing for the pulm. rehab so I can get the most out of my lungs and also try to maintain some muscle tone. I am sorry it took them so long to figure out what was going on with you. Grateful you did recover some lung function. May I ask how low your PF got? And how much have you gained back? being on immunosuppresants so long now.... have you had do deal with secondary infections or other risks? I'm doing all the basic handwashing and precautions I can but also not being paranoid. Seems my main risks are from having an 2nd grader, a preschooler and hanging out at doctor's offices. Can't really change those things much but I have no idea what the risks really are. I am hopeful and have been very blessed throughout this. I am grateful for what you've shared - I no longer feel alone either. If you do find helpful information, please send it to me as I find every bit helpful. my best to you, Kelly

Hi Kelly, Again, I am sorry for the delay in replying to your message. I hope your Holliday weekend was relaxing, and fun. You asked about my PFT’s, so I did a little digging to find some from last year when I first became Ill. I was pleasantly surprised at what I found. When I started out my PFT’s were around 34 to 36%, and now a year later I am up to 42%. It will be interesting to see this week where I am when I get tested on Friday, I will be sure to let you know. You also mentioned germ control, well I am the biggest hand washer you will ever meet, and there is never enough hand sanitizer around for me. In the past year I have noticed strange little infections popping up that I have never had before, for instance adult acne, and a eye chalazion. The doctors give me antibiotics and it clears up, however it seems it takes longer for things to clear up. Common sense always dictates what I do now. I try to live as normal a life as possible with really clean hands. It is great to correspond with you, if you need anything please don’t hesitate to ask we are all here to help each other. Take care of yourself, Cathy

Cathy, Sorry it's taken me a few days. Last week school started for my kids and, well, I did too much and just flattened out my energy level. I am still figuring out that I just can't push myself like I used to. Last week I did get a referral for the pulmonary rehab. Looking forward to getting that going and learning how to maximize my 42% lung function. They added Imuran to my prednisone too. Hoping it allows me to taper off the prednisone a little and reduce some of the side effects. It's given me that really painful, blistering acne plus tremors and general muscle weakness. Plus it messes with my ability to sleep. I too have become so careful about handwashing, not touching my face, not sharing food or utensils with the kids... super aware of germs. And yet still trying to live in the world. I really appreciate your positive words and feeling of hope. Maintaining my emotional energy is going to be another component to getting through on this journey too. When the fatigue flattened me this past week my sense of humor left for a bit too. Took me awhile to get it back together. I hope your PFTs were holding steady or improved and that you are doing well. Thanks again, Kelly

Hi Kelly, I am sorry to hear that you are not feeling so great. Fatigue is one of the things that I have had the hardest time dealing with. Before I became ill, I as a very active person and now I have two speeds, slow and stop. It is so frustrating. Now on the good days (yes you will have them) I do manage to get some things done. However, I have to pace myself. Pulmonary rehab will help your energy level. The high dose prednisone is helping you right now even though you don’t feel so great but once you start to taper you will feel much better. Imuran takes a few weeks to start working. I went last Friday to the doctor and had a PFT done. Thankfully I am stable for now, and my PFT had some improvement (FVC - 45%) and I am happy with that. So hang in there, you are in my thoughts. Regards, Cathy