Hey all. There is a good article just posted by the Cleveland Clinic on Antisynthetase syndrome - and how it differs from other autoimmune myopathies. Well detailed. Not as much info on potential new treatment options as I would like but a good primer for docs and patients about this syndrome. http://171.66.127.177/content/80/10/655.full

Thank you Kelly. I just read the article. Glad someone is finally addressing it.

Thank you so much finally something to take to my appointments to prove that the illness could be the cause of my muscle pain and weakness. Katrina x

Katrina, I did find the article validating in that it verified some of my wacky issues - especially the pain and joint issues that have cropped up. I have long suspected it was related to AS but the docs look at me like I'm crazy. I also forwarded it to some of my docs too. Kelly

Wow. What a great article. It is really nice to have more information, and also some validation for what we seem to go through. As you said KellyB, it sometimes feels like we are crazy because we all seem to have the same disease, yet it is so different with each of us. Thanks. I can't wait to share this with my doctors.... Take care, God Bless...and keep up the good fight!!

Read the article and many thanks to you for finding it.

read this article. very interesting. I am hoping to find info on other antibodies like pl-12. Thank you for posting the link.

Barbbe, I'm looking for anything I can on PL 12 as well. It is so very rare, I would like to know more bc that antibody has a lot more issues, it seems, than any other.

I am having a difficult time finding anything on this "disease". I really wan to know how I got it and why it is so hard to live with and what can I do to feel better and to breath easy. I am in a flair up now and taking 20 mg of prednisone, down from 40, 2 weeks ago.Plus my azothioprine and DHEA and all the other vitamins to make me feel better. Any suggestions? Hope everyone had a wonderful holiday. Barbara

Hey guys I am new to this forum and this nightmare. I was diagnosed a month ago with Jo1+ ASS 7000CK and scaring at base of lungs. On cyclophosphmide and prednisone. Doc says levels are coming down. Just finished reading the article Kellyb posted by the Cleveland Clinic. My interpretation is that if you have any lung involvement, you are in deep trouble? I am just wondering if anyone saw anything different to me that may help me to be a little more positive (not that it is all about me). I am just curious.

Hi lildreamer, I am sorry for your recent diagnosis. I too have Anti Jo 1 Synthetase Syndrome, DM, ILD and now severe Osteoporosis due to the steroids. I was diagnosed in June 2011 after an emergency admission to hospital and unfortunately, my two week visit turned into 9 months. The first month I spent in ICU on deaths door on a BiPap machine with approximately 30+% capacity of my lungs. Now after 12 months of Cyclophasamide (now changed to Azathroprine), prednisone (beginning at 1000mg), Plaquneil, Bactrium, Endep, Estilopram, monthly IVIG, my lungs have reached 66% function with little chance of more improvement. However I am now off oxygen although limited in my ability to do things like housework and work. I think we all have different degrees of how this disease has affected us. In my case. I had an acute onset that was left unattended by a GP until almost too late but with the determination of my specialists I survived. I do get down every now and then because I now cannot do a lot I things I would like such as minor work around the house or garden, walking for more than 15 mins, fly more than 3 hours (due to DVT'S from ICU). But things do get better, so keep that in mind and look forward to it. I am not sure how sick you are feeling or how much your lungs have been affected but this all comes into how you will recover. Keep working hard and stay strong. All the best. Lisa

Hi lildreamer, With this disease you will have days that you feel really good and days that you don't. As Lisa said, there are things that we just cannot accomplish anymore. that has taken me a while to accept. I was quite ill for a year, the myositis was terrible and I would just fall in the floor.Couldn't hardly walk due to the arthritis and labored breathing. You should see me now! I am in pretty good health, considering having this disease. After trying several drugs and drug combinations, the one that has been awesome for me is Cellcept daily and Rituxan infusion every 6 to 9 months. That worked right away as my doctor would not give me azathioprine because it can cause lung issues. And I already had that. I do take lung meds and an inhaler and do breathing treatments each day but I am feeling really good. It is shocking to discover and a bit sad at times to realize the extent of this disease. A pity party every now and then is going to happen, but if you can try to stay positive and find some humor in it,then that helps alot. (what i mean by humor is, my husband will say to me--"come on my little turtle" when I am having a slow day!!!) or (I tell my family I have ASS disease and then I will say I know I have had it for years but this one is different) It helps to laugh sometime. Melissa

Hi Lildreamer. First let me say I am sorry for the diagnosis. It sucks to find out you have an incurable disease. I can tell you there really is hope though. As Melissa and Lisa have already stated, it is not all bad. I also started out pretty bad. I was down to 10% lung capacity, and was told I would not survive the week when I initially got admitted. I could not walk or even sit up in bed. That was September 2011. I was diagnosed with ASS, polymyositis and severe ILD. I am Jo-1 and RO-52 positive I am currently taking weekly IVIG infusions, methotrexate, prednisone, Rituxin infusions every 6-7 months, and am doing quite well. My lungs have come back to 79%, something that I was told was not possible. Although I am now fully retired due to this at age 47, I am actually doing pretty good. I can go do most normal things, although I have to pace myself. No Boston Marathons for me...lol Melissa is totally right. Try to stay positive, but allow yourself those down days. We have the right to feel sorry for ourselves, but need the hope to keep staying strong, so don't dwell on the negatives for long. Find the humor in everything you can, as it can really boosts your spirits, which in turn makes you feel better.. I laugh at my new "perks" for this. I have a disability pass for my car, so I usually get a good parking spot when out. And can blame all the meds when I do something silly or dumb!! Although this is a pretty rare disease, they are starting to make strides in the treatment as more people get diagnosed. Just remember, it affects us all a little differently. Use treatment for others as a base, but find what works best for you. push yourself to get better, but remember to rest when you need it, and accept that you will now have limitations. I am actually going to Italy for 3 1/2 weeks in June to visit my wife's family. Worried about 10 hrs on an airplane, but will get through it. Life goes on. Will let you all know how it goes. Please keep us up to date on your progress, and do not hesitate to ask us questions. We are here for you. God Bless, and Keep up the good fight. Wayne

I think I have finally found the perfect forum!!! Wow you guys are amazing. I did not expect such a strong response. Thank you so much for your responses and they all make perfectly good sense. As you probably have all experienced similar, this is both sad and confusing for me who was a 40 years old in perfectly good health, going to the gym regularly and living the good life. Then the right shoulder pain started which I though was a gym injury. I saw numerous doctors who prescribed me anti inflammatory. Got not glory out of them and requested a cortisone injection in that shoulder. Although it is a powerful anti inflammatory drug, I still believe that this was the catalyst that released this beast as it was a few days later that the real symptoms started. I had the shoulder pain for a few weeks leading up to this. I then went on holidays and a few days into it my fingers an palms would be extremely swollen upon waking up and my legs would be sore after long drives. It then spread to my wrists and ankles. I could hardly walk down the steps of a morning after waking up because the bottom of my feet and ankles were so sore. Regretfully, I waited another 3 weeks for my specialist to return from holidays as the condition worsened. He ordered another blood test and booked me into hospital a few days later. My Creatinine Kenase level was 7000 and I had lung scaring. Lots of tests and diagnoses made after 4 days. Back home now on prednisone and cyclophosphamide and trying to switch from the sadness to a more positive frame of mind. Once again thanks guys for your responses.

Also forgot to mention. Google 60 Minutes Story which aired here on Australian Television called 'Russian Roulette'. This looks very promising. Just out of interest are there any Aussies on this site?

Hi Lildreamer, I am from Brisbane like you, as I saw on another discussion. If you read the precious discussion you will find my story. I left you a message about a specialist as I see Dr. David Heyworth Smith at the Greenslopes Hospital. I think there is one other person - Aggie- who lives in Melbourne. As a newly diagnosed person I will try and help in an queries you have but have only had this BS disease for almost 3 years. ASS, DM, ILD and severe Osteoporosis from the prednisone. Lung capacity was almost dead in June/July 2011, ICU for a month on BiPap plus an additional 8 months in Greenslopes Hospital. It has been 18 months since hospital and am in medical remission and my lungs have reached 66% capacity which my lung specialist says that it has plateaued now. Excuse the French but it is a Bitch of a disease to have as once you stated getting a little better you look fairly normal. I have returned, this year, to teaching for 3 days a week. The humidity kills me plus have a classroom with no air-con and approximately 30 stairs to climb each day. But so far I've survived each day I've worked and fingers crossed no illnesses yet. I have the most poorly behaved kids in Year 3 with multiple suspensions but for some reason I have really missed my job. I was ignored by the GP I visited and should have gone to a different one but the one I went to just thought it was menopause and I was being a hypochondriac. I am currently suing him and he has so far been found negligent by his superiors and we are in the process of lawyers meeting. I hope you improve as rapidly as you can and humour is a good deflection. I have put on a lot of weight due to the Prednisone and a anti depressant which I have to say on. On Friday it was Anti Bullying Day at school and we had to wear orange. So I wore an orange dress and got a lot of compliments because that colour does suit me but my response was "Oh the orange Oompha Lumpa look!" You have to use your humour or some days you just want to hide. My mother went on and on about my gaining weight because when I was in ICU I lost 15 kegs in 4 weeks but of course, that was fluid and muscle tone. I finally had to tell her to get off my back and explain that prednisone (my original dose was a 1000mg a day) makes you fat, hungry for sugar and gives you insomnia. So has now stopped nagging and I have distanced myself from people that don't understand the trauma you are going through. Unfortunately, it will take you a while to understand that your life has changed forever. My specialist sent me to a great psychologist, who had experienced the same thing as I had with a GP not listening. I have only cried once over this because I sometimes think only the strong people get chosen for this disease. I have started the yearly treatment for Osteoporosis which unfortunately has side-effects of necrosis of your jaw. The Pred has weaken my teeth and I was told I have to get two teeth out. Extractions and Aclasta = necrosis but luckily I've found a great dentist that can root fill and then file the tooth down. It was just another thing to deal with. But I am happy to be alive and it was made possible by the fantastic doctors at Greenslopes and my own will to survive, even though as few things I wanted to give up. Don't give up, stay strong and fight it. Best wishes Lisa

Thank you Lisa. Can I ask how long you had the symptoms before being diagnosed. My original GP told me it was more than likely a arthritic virus. Did not accept that as my body was telling me different. I must say though, him referring me to a specialist called Dr Vecchio of Annerly helped me get the answers quicker than if I just accepted the virus theory.

Hi Lildreamer, That was my Rhuemy when I was finally referred after begging the GP for help. I was supposed to get an appointment a month after my enquiry but I asked for a cancellation and got one two days later. He sent me to hospital ASAP. He is great and works through Greenslopes if you have private cover. He may refer you to Dr. Heyworth Smith but it will depends on your symptoms and their severity. My symptoms started in April with shortness of breath, shoulder pain and hand swelling. It continued and then I developing redness and intense swelling in my hands, blue fingertips, severe joint pain, increased breathlessness, blood splinters under my fingernails and severe pain in my muscle when moving. I could not stand in the shower and I was in pain all the time. When I walked I would have to stop and rest due to my breathing. Dr. Vecchio spent 5 minutes with me, told me I wasn't crazy and in fact I was very, very, sick and how soon could I get to the Greenslopes Hospital. I was admitted on June 19th. You will be very happy with him, he is a lovely man, very caring and will consult with other specialist to get you the best treatment. Do not wait too long as it only took 8-10 weeks for my symptoms to nearly end my life. Good luck and I hope you get to see Phillip soon. P.S sorry guys about all the posts I didn't think they went through :-)

It is refreshing to read something like that, understand it and know now, that others are living this reality with us. Marissa

Hey lildreamer. I am an Aussie, in the Central West of NSW. I was diagnosed July last year, so am 8 months in. I'm currently going OK, having more good days than bad. I was on oxygen 24/7 and was told I'd never get off it, but now only use it for exercise. I am on tacrolimus. I was on Prednisone but have gradually decreased from 75mg per day to nothing since February.

So sorry to hear Barbie. That is 5 that I know of now in Oz including me. How long were your symptoms there before being dignosed. Barbie I have heard of people that had severe lung involvement initially, but have now improved dramatically. I think this is one of the many mysteries of this disease in that 1. it manifests itself differently in people 2. the lung involvement sometimes mysteriously and surprisingly improves. Meds can be petty effective. My Doctor mentioned this yesterday. Just a question for others out there, what doses of prednisone have you had to be on and for how long?

I started off with being out of breath and sore hands/wrists and knees. I saw my GP and was diagnosed with asthma and osteoarthritis. Two weeks later I was bedridden at home - seeing my GP every 2nd day as I felt so ill. Two weeks after that I was hospitalised with what they thought was pneumonia. I was in hospital for 2 weeks before they could give me a diagnosis - I had a huge number of tests done daily during this period. I was unable to go to the toilet, shower or even eat unaided. Apparently my lungs are very bad. In hospital I was visited by about 50 student doctors as apparently they were told they might never get to hear lungs like mine so they should take the opportunity. My respiratory physician said I've got the worst lungs she's ever seen - a bit hard to fathom when I appear so well on the outside! Over the last 8 months I have done everything I've been asked to in an effort to give myself the best chance possible. I've lost 45 kgs (some of this was just before I got sick), exercise regularly - walking and stationary cycle as well as attend a pulmonary rehab program twice a week. I have improved more than my respiratory physician thought would be possible - my lung capacity has gone from 33% to 78%. I am suffering pain again in my hands/wrists/forearms and ankles/knees since coming off Prednisone. It can be very uncomfortable but not excruciating. I've been told to 'suck it up' as the Prednisone is very bad for my health if on it long term. I have been medically retired. My specialist has advised me to mark off the things on my bucket list while I am well. After much thought all I want is time with my family and friends. Hubby and I leave in 3 weeks for 4 months together in a warmer climate (it's very cold in winter where I live). My attitude is to prepare for the worst but hope for the best. I am taking time out to enjoy life for a bit just in case, but many people seem to get a few good years before the disease takes hold. I've been in contact with Jason in Townsville who has the same disease. Have you had any contact with him? He has provided me with heaps of information and has been great to talk to and he's answered all the questions I have had. He's done heaps of research and is a wealth of knowledge.

So sorry to hear how much you suffered. How long has Jason had it for? Were you on anything other than prednisone?

Hi Lildreamer. In response to your question about prednisone. I initially started on 1000mg/day for the first 2 weeks that I was in hospital. That is what saved my life. I was then able to taper it down to 100 mg/day very quickly but it took about 3-4 months to get down to 80mg/day. Then I was unable to go below that until I started on my Rituxin infusions. That has allowed me to get tapered to20/mg over about 6-8 months. I am currently on the 20mg/day, but seem to get worse if I try lower it past that. I am fine with that. would rather be a little chubby in the face and such then feel so tired and weak... Barbie you are so right. Although we do not know what is going to happen, we do know that we should not wait until later. enjoy life now.."just in case". God Bless and Keep Up the Good Fight Wayne

Thanks for the response Wayne. This disease is so weird my symptoms are changing everyday. Today there is a clicking behind my shoulder, yesterday it was spasms in the muscle below the eye, really scared of what tomorrow brings. I think my mental response to this is changing and I am now starting to shift from defeated and depressed to get the hell up and try everything you can to fix this.

Hi Barb, your journey sounds similar to mine I was hospitalised including a month in ICU for 9 months. I now have 66% lung capacity going on now nearly 3years from diagnosis. It sounds like your GP was a little more helpful than mine as he totally ignored me until I was on death door and then I was admitted on an emergency basis by a Rheumy that he finally sent me to. Hope you continue improving and it sounds like your doing well, considering. I can't travel more than 3 hours on a plane due to DVT'S I suffered in ICU, so I'm quite jealous of your holiday to a warmer climate. Best wishes and good luck.

Thanks Alexgirl, I've been told I can't fly so it will be driving to a warmer climate, only 5 hours from home. Didn't want to stray to far from my doctors and wouldn"t cope with the heat and humidity if we went too far north. lildreamer - Jason is 7 years in to the disease. I think he gets on this site so may pass on his details. Otherwise I ca ask permission to give them to you. I found him in the Facebook page for Antisynthetase Syndrome

Thanks for that Barbie,that would be great. The more information I can get on this, the better I can deal with it and hopefully one day put it to bed once and for all.

Hi lildreamer, I'm in Australia too. Welcome to the site.

Which state? I am trying to do a head count here. I have read that there are about 7 of us in Australia. Does anyone out there get the burn under the skin sensation?

Hi Lildreamer, I have mainly the myositis of the DM with some redness on my hands and I did have Raynauds . the meds have stopped except when I exert myself then my fingertips go blue due to lack of oxygen. I do not have a rash but I consider only having 66% lung capacity one of the things enough to deal with.

Hi again. I'm in Melbourne. I have anti Jo-1 (found out in November last year) after seeing a rheumatologist with Raynauds. It's nice to know there are others here in Australia too, I was beginning to think Lisa & I were a rare breed!

Still, considering, not many of us at all!

You got that right Alex and Aggie. I can't believe how rare this is. How unlucky can we be hey? We will beat it though, just have to stay positive and keep searching.