I have read through various medical journals that a percentage of people studied achieved remission. Is there anyone out there that knows of any people who have achieved this and what is defined as remission? Is that completely symptom free? Also, before this nightmare begun, I was pretty active going to the gym a few times a week without fail. I used a powder called Creatine to help me lift more for longer. Just out of interest, did anyone else use this type of powder or anything similar? Last question for you all. I recently watched 60 Minutes Australia "Russian Roulette" where a women flew to Russia and got stem cell treatment for her MS and was very successful. Has anyone looked into stem cell treatment?

I read a medical journal article last year about a man who was treated somewhat quickly after diagnosis with rituxan as the first line of treatment (it's usually the 3rd or 4th) and he was symptom free a year later. I think that some people do have long periods without flairs or major disease activity. It may be they find an effective treatment early on and that is enough to keep things in check. I don't how many folks are able to stay flair free without medications. I am always curious to see what treatments are available in other countries. I'd consider traveling to another if I found one that seemed promising. I'm about out of treatments as it is!

My last resort treatment if I don't respond well to the current one is a direct flight to Moscow to see Doctor Frandrenko for stem cell treatment. If he can treat MS through his methods I am sure he can shoot this down. However, after today's lung test I can see the meds are helping.

I really love this site and am so happy that I found it. It has really opened my eyes. I read under the heading Disorder Details on this site in relation to ASS that this disease with the muscle involvement alone can have a favorable outcome where as those with the lung involvement, the prognosis is not favorable at all. I have to disagree with this as my Lung Doctor today said we all suffer differently and respond to treatment in different ways. I hope I am not in denial. What are your thoughts?

I believe attitude makes all the difference in the world when dealing with any illness. I will admit that my doctors caught right on to my diagnosis, and the treatments haven't been bad at all. I had some issues with my boss and his "This couldn't have happened at a worse time!" and "You have been having entirely too many doctor's appointments!" attitude. But I got him straightened out pretty quickly. I have been able to stay working through all of this, and am getting to the point where I will be retiring with a little over 31 years of service to my employer at the end of March 2015. I do everything my doctors tell me to, I ask questions constantly, and I check all my test results. They have my lung functions to the point where I am going to be scheduling my knee replacement very soon. Having arthritis on top of all of this isn't a joy ride either, but we have to learn to live with what we've got, and do what we need to do each and every day to the best of our abilities. All of you with good solid support at home, know that it is worth it. And to anyone going through this alone, I will send out extra prayers for you each and every day, and know that you always have everyone here on this website to talk to. We are a very strange family, linked by this terrible disease that no one really understands. But we do have each other. Stay strong, and all my prayers go to all of us.

My husband was diagnosed in 2010 with UIP with honeycombing in his lung bases. He was immediately given three rounds of Cytoxen and after that was started on Cellcept which he continues to take. I will go out on a limb here and say he has been fairly stable with no major exacerbation in his condition over the past four years. I believe the immediate treatment with Cytoxen following with the Cellcept was successful for him.

Hi everyone, For those with interstitial lung disease as the most difficult part of this, how many are on oxygen most of the time? If you've had ASS for a long time, have you been able to get off oxygen or use it only at night time? I was diagnosed with ASS last month. I am on cell cept and prednisone and am improving, but struggle just to breathe.

I was diagnosed with AS five years ago. I had what I thought was a mild cold and then within 7 weeks was hospitalized with 33% lung function. I have the OJ autoantibody subtype and it has been difficult to find a treatment that works other than high dose prednisone. It has been a journey of prednisone, Imuran, cellcept, tacrolimus, IVIG and finally, rituxan (which with prednisone has helped me be the most steady for the last year.). During this time, my lung function has gone up and down. The first year after diagnosis was the hardest to recover from because I had been hit so hard and was so debilitated. But I did get back up to 70% and at that point was completely off oxygen support. I managed to also have very little lung scarring at that point. I even completed a 5K Walk event with no oxygen support 18 months after diagnosis. It has been a roller coaster of lung function since then. I've never been as low as I once was but never as high as 70% again. For the last 16 months I have been holding at 49% lung capacity, 48% lung volume and 52% lung diffusion. The lower lobes of my lungs have become scarred and lost elasticity so my capacity and volumes have been restricted. But for me the Diffusion scores are the best indicator of how I'm doing because those tell how efficiently the working part of my lungs are using oxygen. It is amazing though just how far I can get with these lungs of mine! Even in this state I only use supplemental oxygen when exerting myself. Unlike in the beginning when my lungs were so saturated with immune system cells attacking them, now I no longer need oxygen while just seated, walking around the house or while sleeping. I do use it (3L on pulse setting) when vacuuming, puttering in the garden, walking the dog, grocery shopping, being out with my kids... basically any sustained physical activity. I wear my oxygen in a camelpack on my back so my hands are free and it's easier to carry. I do find that my lungs are now easily affected by changes in humidity, temperature extremes of hot or cold, any kind of smoke, strong scents, etc. and that can leave me needing oxygen support just as much as exertion. I bought a small oximeter that slips over the end of my finger so I can get a quick reading of my oxygen saturation levels. In the early days this helped me gauge when I needed more oxygen support as well as calmed my anxiety when I was short of breath. Some days my lungs are more fatigued, other days stronger. But if I have more than several days in a row where things feel worse I call my doc right away. For me, time is lung function so I don't mess around. I'd rather look overly cautious at the doctors office than be back in hospital again. Early on a respiratory therapist said something to me that helped tremendously. She said if I felt short of breath, turn up the oxygen until I felt more comfortable. She also said you can't over dose on oxygen and that it's a myth that you'll become dependent on the supplemental oxygen if you use it too much. So if you feel like you can breath better with your tanks or machine on a higher setting, then keep it there until you feel like you need less. Especially in the beginning when your body is healing from that big attack prior to any immune suppressing treatment. Prednisone, while life saving, can also do a number on you anxiety wise. Ask for some low dose Ativan/lorazepam. It's just enough to make the anxiety manageable or take the edge off the overwhelming irritation and mood swings that can come with high dose Prednisone. Ok I've babbled long enough (or like a gal still on prednisone!). Everyone's path is so different. I hope that was helpful. If you have other questions or need other details, ask away. It's a huge blow to go through this diagnosis. I'm sorry you're having to deal with any of it. It does get better. My best to you. Kelly

Hi AmSun. Sorry to hear you now have this crappy disease, but do not loose faith. As Kelly mentioned, it can definitely get better. I was diagnosed in Sep 2011, with just 10% lung capacity. My wife was told I would not survive. I showed them...lol With the help of Prednisone, Methotrexate and early intervention of IVIg (which I will be taking for life...excuse the pun...) I got my lungs back to 80%, although I did fall 1% to 79 last testing 6 months ago. I have more testing next week, so hopefully have not dropped again. I do not use oxygen at this point, however I also avoid and real strenuos activities. Although there is currently no cure for this, we can certainly get ourselves back to a reasonable place, and hold it for as long as possible, while still maintaining a half decent life. I will be going to Italy for the month of June, and intend to enjoy every minute of my time there. Stay positive, take the meds you require, and never, ever, stop fighting. My personal belief is that if I can beat the odds and get this horrible disease, then I can also beat the odds and BEAT this horrible disease. I will never give up that hope!! remember, there always has to be a first person cured, so why not one of us (at least me anyways...lol) God Bless and Keep up the Good Fight Wayne

Wayne, You always make me smile! I too hold those same beliefs about the odds and getting better! I do think attitude so greatly effects how we process this experience. Even if I'm laughing at the absolute absurdity of it all sometimes, at least I'm laughing! Have a wonderful trip to Italy! It is one of my favorite places and I wish you the best of adventures. Kelly

Hi AmSu, My experience is very similar to Wayne's and Kelly's in that mine was an acute onset and from the first symptoms of shortness of breath in early May to 20th June i was placed in ICU and my family told she probably has 24hr. Like Wayne I proved them wrong and although it took me 9 months in hospital with DVT'S, a rare and life threatening infection, a severe allergy to a medication that stripped all my neutraphils, severe osteoporosis due to prednisone with 7 fractures to date and I could go on and on with all the complications I have had. I was allowed to leave hospital when I could manage to walk around on 6 litres of oxygen. I was treated with 1000mg Pred, IVIG, IV and oral Cyclophosphamide, Plaquneil were the basic ones. I am on the same except On Azathrioprine instead of Cyclophosphamide (max 12mth treatment allowed) as well as Bactrium DS to keep the infection at bay, Endep, Endone, Estilopram, stillnox, Somac, yearly IV Aclasta for the Osteo and of course Vit D and Calcium. I am in medical induced remission and use oxygen now only when I exert myself. Unfortunately, due to my muscle damage, lack of joint strength and the extreme fear of breaking another bone and of course, these bloody lungs, I cannot do many things I used to. Gardening, cleaning bathrooms, washing the car, changing sheets etc these are some of the things I can't do or need help doing. As I fractured my sternum last year, it has still not healed properly and therefore I cannot bend from the waist for any length of time as my sternum catches and I am in extreme pain. AmSu when I was hospital, especially in ICU on a BiPap machine, paralysed from the waist down and being told I would probably die was the most terrifying time. But I must have said to myself I will not be beaten and I wasn't and if you knew what I looked like and went through then you'd be surprised now. I am a teacher and have been able to return to work 3 days a week (it is bloody tough), I don't use oxygen a lot, I get around without aids now and I look well. Unfortunately, I am much fatter now due to the Prednisone, an anti depressant and nerve pain meds. One the best things my specialist made me do was to speak to a psychologist about the idea of nearly dying and having a severe, chronic and rare disease. I also had to deal with the fact that I did not necessarily have had to have suffered such a severe case. The GP I visited thought I was being a hypochondriac, suffering from asthma, menopause and was a struggling single mum. Consequently I am suing him. I assure you if you have the right mindset, loyal and caring family and friends and a determination like one you've never had before you will improve. I am not a religious person but I truly believe that only the strong get chosen to deal with this disease because the weak would not cope. Good Luck, keep strong, ask questions and get the right doctor. ;-)

Alex girl, Wow. You are one awesomely tough gal and I am so grateful you shared your story with us. I have been through many similar things but reading your story makes an impact upon me of both knowing and awe. I find myself wanting to stand and cheer you on. It feels cliche to say this (and I'm uncomfortable when it's been said to me) but nevertheless, you are inspiring. I too have been surprised to discover just how deep one can dig to claw our way through this. That word you used - determination - is the very word that I have often tumbled over and over in my mind on the hard days. I am just so determined to be here for this life of mine, for my kids. So glad to have another warrior in this battle with me. Kelly

Good morning! What amazing spirits and incredible evidence of the will to thrive and to live ... With such hope. Living with ASS reminds one how strong we truly can be. Thank you for sharing your stories. My was sudden onset, but I am so fortunate as they diagnosed mine in 12 weeks so it didn't progress as far. While I am experiencing my first cold since diagnosed and find it so hard to shake, my overall condition is stabilizing. Love the thought that if we were unique enough to contract this interesting disease why not be the ones who not only survive it, but hopefully are around to usher in a cure. Until then we'll give it a run for its money. Wayne, Kelly and Alexgirl, thank you so much for for sharing! Mary

Thank you Kelly for your kind words and yes it's like a war. I have some great friends but have been very disappointed in my immediate family since leaving hospital in April 2012. My brother has not once called me to ask if I need anything, my father only visited me for 2 weeks of the 9 months and my mother has not visited my home in over 12 months. It is hard to continue working so I do not lose my house and I am dealing with a 16 year old who wants to drink, party and miss school. Sometimes I wonder what more will be thrown in my direction. I have decided to go on holidays and have asked a friend going through a possible marriage break up to come. She is not sure but if not I have booked my airfares to see Tasmania. I am not allowed to fly more than 3 hours due to my DVT'S whilst in ICU but I owe myself! I am so grateful for our small group because even though I'm on a few DM Facebook groups having ASS is different and they do not have the same understanding. I am off to the Gold Coast for a few nights with my son and a girl friend for a relax. I am soooooo looking forward to. Live life, do the best you can and stay strong and healthy everyone!

Hi Alexgirl. You go, and enjoy yourself. God knows you deserve it. I was really shocked to hear of your family, and their reactions to your illness. I thought I was the only one going through this. My parents are in denial I think. They rarely call or talk to me. They also visited me just once all the time I was in hospital so far. I am kinda glad I don't see my father though, because he still insists on smoking around me, even blowing smoke into my face... Ya, that is really good for my breathing. He doesn't seem to grasp the idea of lung disease... The rest of my family is not much better. 3 of them have not said a word to me since getting sick, one calls about every 6 months, wondering why I don't come visit them anymore (10 hr drive away, or 1 hr flight), and the other one, I actually talk to and visit pretty regular. Could be the fact that he has Parkinsons disease, and is also "shunned" by the rest of the family. He is the only one who can truly comprehend what we are going through I truly thank God he is fairly stable right now. I have a couple of really great friends that have stuck by me through all this. My wife....she is soo amazing. She is my rock. She has not missed a single appointment, treatment day, nothing. she spent every single day and night with me when I was in hospital. Only time she is not with me is when she is working. but even then, she calls me and texts me often just to let me know she is there for me, and loves me so much. God truly blessed me when he brought her to me. I am also grateful for this group. You are all so inspiring. Your stories of hope, courage, tenacity, and sheer intestinal fortitude in fighting this disease gives me the extra boost I need on those days I am feeling down. Thank You All....... God Bless you All, and Keep Up the Good Fight. Wayne