Hey folks. I've recently been diagnosed with ASS with ILD and Anti Jo-1. It came on quickly over a 5 week period - starting with sprained thumbs, then I thought I had Rheumatoid Arthritis in all major joints symmetrically. But it was the inability to walk up and down stairs that had me visit 3 GPs till one recommended I see a Rhuematoligist. By the time I saw him I had mechanics hands, moderatly high CK levels and evidence of ILD. So I spent a week I hospital where there ran test and confirmed through an HRCT, MRIs, EMG, lung function tests and bloods that I have what we all have in this forum. So you guys are my new tribe! In the hospital the Rhuem told me I'm relatively young (41) and we seem to have got it early so he expects me to respond well and live a normal life. He's put me on 50mg Pred and 50mg of Imuran (which will go up to 150mg). It's been a week since leaving hospital and I've been making progress but yesterday I was floored. I took 10 steps back barely able to walk around the house and experiencing shortness of breath and a feverish chill. I am meant to start a full time job tomorrow and I wonder if I will cope physically. My step backward seem to be a response to getting out if the house to see the GP the day before. It wasn't much effort but it landed me back on my ass. I'm just wandering who is able to keep a full time job here? And, what advice can any of you give regarding returning to work. Am I trying to do too much too soon? A heartfelt embrace out to you all. I'm still coming to terms with the fact I even have a disease and the thought I may need to adjust to a new normal.

Hi Sydney- Welcome to the club! I got ASS at age 47. I started out similar to you but with myositis and could not walk very well so I was out of work for a year and have not gone back full time since then. I am in "full remission" but still have breathing problems, achiness in the joints and my stamina is not great. If you can manage to work full time I commend you. I am only telling it like it is. This is a tough disease where you just do not know if you will feel good one day and crappy the next. Compared to the beginning, I feel very good now! Hopefully, you caught it at a younger age where you are strong and can do it. I will send you positive thoughts. Good luck to you.

Hi Sydney. Welcome to our little club...Wish you weren't a member (wish none of us were). I agree with Melissak. I am 48, and been dealing with this for 3 years now. I am fully medically retired. I consider getting up and doing the basics of life a good day. Anything more then that is a bonus. Bad days can really be bad...lol I would also commend you if you are able to work full time. Just remember. Your body is now forever changed By the very nature of this disease, you are going to need much more rest then ever before, and "pushing" yourself too much can cause damage that your body may not be able to repair. BE CAREFUL.. We need to fight to get better, and maintain as normal a life as possible, but we also need to accept our new limitations. My advice would be to take it slow, let your body recover, and see how it all goes. I wish you luck. God Bless and Keep Up The Good Fight. Wayne

Thanks for the feedback MelissaK. I've just been told by my GP that I'm not fit to work which is hard to come to terms with. By the way what constitutes "full remission"? What did you do when not working - was it all doctors visits etc? What helped you get back on your feet the most? And are you working from home part time now? Sorry about all the questions. Don't feel pressured to answer them. I've done a fair bit of reading in the past month but its great to hear from those who actually have it. Thanks for your feedback. Wishing you well. ; )

Well Sydney, My Rheumatologist told me that compared to how I was when first diagnosed then he considered me "full remission". I guess that means that with my drug program (which took time to figure out) I am doing really well. I was a mobile massage therapist for 20 years, working 5 days a week. Loading and unloading my table/supplies at businesses and working on employees for 6 hours per day. It was hard on the body and I simply could not do it after being diagnosed. I do still work on some clients but not very often. I do some contract landman work now. I work for very reduced wages compared to full time landman work as I am slow and tell my customers that it may take me a while to get the research done. I only work for individuals and not a company. When I am not working, I read, watch tv and in the summer I enjoy fishing. I admit to much boredom but I seem to stay fairly busy with everyday chores. What helped me the most was my hyperness as I was determined to be independent and not be waited on. And, my family is very supportive---we laugh at me often--they will say "Come on turtle"!!! or "Is it a sloth day today"! So even though it seems terrible, it makes me laugh at myself as this is part of my life now and I refuse to be sad about it. The painful days are hardest and there is not much to smile about on those days but you just think that tomorrow will be better. I know that being told you cannot work full time is shocking. I wish you much peace as you find your way with the ASSy life. Hope this helps.

Hi Sydney, My husband was diagnosed a few months ago and we have just recently been through the process of gauging whether he will be able to work again. He is a greenkeeper by trade. In the end the specialist and GP agreed that it would be a no. So we are now going through the process of superannuation TPD. But, I think of it more as a 'that season is over, time for the next one' type of thing. My husband loves gaming and streaming so I'm building him a website and he's going to stream and do product review and become an Amazon Affiliate etc. I figure it's time he had some fun minus the stress :)

Sydney, I am still working full time and am 40 years old who has had an experience with this disease in much the same manner as you. Had the joint and muscle pain initially, then spent some time in hospital where they determined from the Joantibody and 8000CK level that I had an issue. I had troubles walking up stairs, fell over when I ran etc but am now working and trying to hide the fact from everyone that it is a bit of a struggle. I would suggest that at the beginning get a shit load of home rest until the meds kick in and then try an attempt to return to work as this is the best medicine mentally. Good luck mate and welcome to the ASS.

Thanks Weiner, Ellie, Melissa and LilDreamer for your thoughtful responses. Its nice to know I'm in good company here. My GP advised not to return to work and left the time period open ended. You guys seem to offer the same advice... take it easy in the first period of the disease and get a sense of how it and treatment affect us individually before tackling the demands of the workplace. A heartfelt thanks to you all! Ellie I'm interested in whether others have applied for TPD insurance and been successful I might post this as a new topic. I'd love to hear if you're still pursuing it. And by the way, going the affiliate path is a great idea. Cheers

Hi Sydney, I was diagnosed at 41, I was due to start a new job too but was signed off for 10months and then had a phased return to full time work. It's a struggle, at the end of each week I'm amazed I've completed another week without any time off, but I'm lucky that my new job is mostly desk work. I've had this 5 years, I'm still adjusting to the new me, but I'm a lot better than I was at diagnosis. Don't try to rush the process of your healing, it's frustrating but life has to be at a slower pace. Improvement will come once you have found the right meds for you, I started on imuran but didn't have good results, my best improvement has been on cellcept, but no drug regime suits everyone, frustratingly it seems to he trial and error for each individual. Take care

Sydney, I was diagnosed in January of 2007, at age 51. Mine was caught very early, as I have always paid attention to what my body is telling me. I also have an office job and have worked full time before and after diagnosis. I find that there are things I cannot do anymore because the strenght just isn't there. But I have a strong, tall husband who jokingly calls me a wimp and does those things that I cannot. We will be celebrating our 39th anniversary in August, and we will both be retiring next February. I look forward to doing all sorts of things when I retire, and I refuse to let this THING keep me from them. Keep fighting for everything, and never give up. Terry

Hi All and especially to our newcomers to the forum. It is truly amazing how this disease effects all in so many different combinations of symptoms and progression. My husband was initially diagnosed with dermatomyositis in the late 1990s when he was in his late 30s. This effected his muscles but not to as a significant degree as some of you all here. He had difficulty getting out of a chair and bed for awhile but it did eventually improve. His CPK level never went above 1,400 I believe. He went into a remission (we believe) for awhile with very little symptoms of muscle weakness until around 2010 when he began with a cough and some shortness of breath. He was then diagnosed with interstitial lung disease and the Anti-Jo with rheumatoid arthritis and Sjogren's. At that time, his lung function was at 60% and is now around the same ranging in the 55% area. He is not on oxygen and continues to work full-time. His disease has mainly effected his lungs with a Cat scan showing fibrosis in the base of both lungs. Arthritis and muscle weakness are not a terrible problem for him at this point and he continues to take Cellcept daily which appears to have kept his progression at bay for the time being.