Hi all! This is my first time posting on this forum but I noticed that a couple of you had JO-1, as do I. I started getting sick in Feb. 2010 but I was constantly going. I attributed not being able to shake what I thought was a simple cold to not taking enough time to rest. I have 3 boys (9,7,2) and they kept me running. Finally it got so bad, short of breath and horrible coughing fits, that I went to the ER one night. After looking me over they decided it was double pneumonia with one lung really bad. They gave me solumedrol, breathing treatments, an inhaler (can't remember the name of it), IV antibotics and put me on 2 liters of oxygen. A week later I had improved some and was discharged with antibiotics, a prescription for prednisone and an inhaler and I was to follow up with pulmonologist in 2-3 weeks. I got to where I couldn't breathe at all. I would wake up and would head to the couch, only getting up to use the restroom. Then head to bed at night only to start all over again the next day. I was noticing that I had gotten considerably weak. I told my husband one night that he was going to have to take me back to the ER or I literally believed I would die. He took me and when I got there, after sitting in the ER for about 45 mins to an hour my o2 was 89. They rushed me back and started me on oxygen and started numerous tests. They thought maybe I had pneumonia with a touch of congestive heart failure. After they ruled out heart failure and a few days with no improvement they did a bronch and decided it wasn't pneumonia either. They then decided it was some sort of connective tissue disease and referred me to Drs. at a larger hospital. I was sent home on 3 liters of oxygen at rest, 5 when up and moving, 60mg prednisone and antibiotics. Once I saw the other Drs. (rheumatologist and pulmonologist) my PFT showed my lungs were functioning at 27% still. After a couple of months they were still at around 27%-29%. So really no improvement. They added 50mg of Imuran (azathiaprine) a day and worked it up to 150mg a day. No improvement was made and they have now added Prograf 4mg a day in hopes that it will keep my immune system suppressed. My lung function has increased about 6% but I am still on the same oxygen requirements a year later. My final diagnosis is: ASS with JO-1, polymyositis, dermatomyositis and Raynaud's. Just wondering if anyone has any input as to what has worked for them. I am really wanting to see an improvement. My CK was about 5000 but has come down to the 150 range. My prednisone has been tapered to 10mg a day, and thankfully I am not any worse, but I am not getting a whole lot better lung wise. My muscles are better but my lungs seem to be stuck around 33-35% and it gets really frustrating not being able to do hardly anything without giving out of breath. I know its hard with this disease to find something that works with everyone but I'm just wondering what others have used and what improvement they have made. Thanks in advance for any input!

This disease is hard to treat. I know some people have diffent treatments. I just started the Azathioprine in December and was taken off Myfortic. I was diagnosed this last spring with ASS. I was originally thougth to have Psoriatic Arthritis in fall of 2006. In June last year I was taken of my Methotrexate and Humira because it was found that I have a Methotrexate allergy. I was put on 60 mg of Prednisone a day. I was tapered down as the added the Myfortic and was stopped in October. I just found out in February that I have Asthma also. I have the Myositis, Arthritis, and the Mechanics hands. I now that I have no energy and I am appealing a disability claim. I have 68% lung function, but it was at 72 % a year ago. It has stablized. I was recommended to take NAC that someone else on this sight recommended. My pulmunologist recommened this in February. I just take it a day at a time. Some days I have no energy. I have an 8 year old I have to keep up with. Good luck.

Wow Stephenson1, my story is so similar to yours! In January of 2008 I ran the Disney Marathon and then went on to run a few more races (I have been running for years). Then in March I started coughing and thought I had a bit of cold that I couldn't shake. Long story short, I was coughing till I vomited, and could barely get out of bed so I finally went to the doctor. After an open lung biopsy and what seems like 50 different doctors I finally found a rheumatologist in Miami, Florida who guessed that I had Antisynthetase. She referred me to Johns-Hopkins University Bayview Medical Center in Baltimore where they have a Myositis Center (check out their website). She did a million blood tests and I was positive for Jo-1. At Johns Hopkins I was diagnosed with Jo-1 antisynthetase with dermatomyositis because of my lung involvement. My CK was 4780. Dr. Danoff at Johns Hopkins suggested IVIg infusions. I was on high dose prednisone, cytoxin orally (a chemothearapy drug that nearly killed me), and cellcept. None of these therapies have helped me like the IVIg. The IVIg has given me my life back. I have a 10 and 11 year old children and I was a teacher before all this started. I taught through February of 2010 until I could not walk to my classroom from the parking lot with gasping for breath. I started the IVIg in September 2010 and just finished a 6-month course in Febrary 2011. So far, so good! My last CK was 110! I hope to go back to work in August. IVig is VERY EXPENSIVE, but it is worth every penny. Ask your doctor about it, go to Johns Hopkins if you can. The Myositis Center there is AMAZING! You are so young, I will be praying for you. I hope you find answers that improve the quality of your life! Ask a million questions and find the BEST doctor you can. Remember, the doctors hardly know anything about this disease so you have to advocate for yourself.

I too have ASS disease and it hit me simular to you. I also have the same symptoms. After various treatments, my dr put me on Rituxan infusion. Methotrexate is out of the question as it can cause lung disease and Azathioprine really did not work well. I am now on 5mg Prednisone daily, Advair inhaler 2Xday, SIngulair at night and 3000mg of Cellcept to work with the Rituxan. I do a breathing treatment with a nebulizer once or twice per day and I am so much better now. I could hardly walk and breathing was labored. Once you find the right combination that works with your body, you will be much improved. I will think positive thoughts for all of you and your families. :)

Hi, everyone. I was diagnosed with Jo-1 in February of 2007 by the best rheumotologist in the world (my opinion). She too one look at my hands and told me that she had a feeling she knew what it was, but wanted to run some blood tests. Between her and my pulmonologist (also a wonder doctor) I am doing much better. I went through the prednisone treatment for 2 1/2 years without much difference. I had several prescriptions for hand creams and ointments, with no real change in my mechanic's hands. I did get relief from that about 2 years ago from a co-worker who came in and said "I saw this in a store over the weekend and thought of you." It was a container of O'Keeffe's Working Hands (I buy it a Lowe's Hardware stores). It made a difference in my hands with the first use. I type for a living, so the cracked, bleeding and painful fingers were a real problem for me. When I was first diagnosed, I went on-line to find out anything I could about the disease. I have osteoarthritis, I was have severe problems with muscles and joint aches, and muscle control, as well as a dry tightness in my chest with a wheeze when I breath. I've been through PFT's and the 6 minute walk that follows 4-5 times a year. I started on Cytoxin first, from my pulmonologist. That didn't do a whole lot for me. He now has me on CellCept and I no longer wheeze or have that tight dry feeling in my chest. His diagnosis was interstitial lung disease (scarring in the lungs). I've had CT scans with and without contrast, and the techs in the blood lab see me so often that when I was at a festival last summer they started hollering greetings from 100 yards away. I only have to go for bloodwork every 4 weeks now, it used to be every 2 weeks. And you are all correct, the doctors haven't got a clue. Like I said before, I have great doctors, but I am their only patient with Jo-1, and they are just guessing as to what to do. What I would like to know is were any of you on Lipitor before any of your symptoms started, because mine started when my family doctor bumped my Lipitor from 10 to 20 mg, and then it got decidedly worse when he bumped it again to 40 mg. I am currently trying to find out the name of the "rare but serious side effect" to Lipitor is. The symptom for it is unexplained muscle and joint pain or weakness (according to their commercials on TV).

Hi tbear73, My husband was diagnosed in Dec. 2009 with A.S.S. PM. His started in his lungs. he was treated with Pred and started on Cellcept and told that even thought they knew he had antisynthetase syndrome, with the medication it would be years before he developed other symptoms. He was hospitalized in July 2010 with a fever of 104, and CK levels of almost 10,000. So it only took 7 months to develop the muscle inflammation, not years! We were in Pennsylvania on vacation when he got sick. His hands were weak and his thumbs/wrists hurt and he started coughing. Same story, diagnosed with pneumonia, given antibiotics several times, then finally a chest CT scan which showed interstitial lung disease. it was an infectious disease doctor who ordered all the blood work that showed he has ASS. He was not on any medications when he was diagnosed. He had always been very healthy and very strong. Of course we all want to know what caused the disease. I blamed it on mold in the motel room we were in in Pennsylvania, but his pulmonologist told us that there was no cause, it was just something that happened.

Hi, When I was diagnosed, my rheumotologist told me that they don't know what causes it, only that it is not hereditery, and it is not contagious. I went on-line and found a couple of medical journal articles and was able to work my way through them. What made me worried was that in late November of 2006 my doctor had doubled my Lipitor and on New Year's Eve when I was trying to cook for the family party, I didn't have any strength in my hands, and after a very short time both arms felt like lead weights. And I was dropping most everything I picked up. This scared me, and the only change in my life was the Lipitor. My family doctor said that it couldn't be the problem, but nobody can answer my question about the disclaimer they read on the TV ads. One thing different in my meds to your husbands is that I was weaned off prednisone before I was put on Cytoxin, and it was completely out of my system when I went on CellCept. I like the CellCept much better than Cytoxin. That stuff was difficult to endure. I read that a lot of people on prednisone with CellCept have a problem with diarreha. I haven't had any problems like that with the CellCept, so it must be something to do with an interaction with prednisone. My lung problems have stabilized and my PFT's have been getting better lately. If you can, talk to his doctor about weaning him off prednisone, and see if the CellCept helps at all. I was also on an anti-inflamitory called Dicolfanac. It helped some with the overall pain and muscle issues, but did not help much with the joints. I'm not on that anymore, and I am going to talk to them about getting me something that will work a little better than it did. I will keep you both in my prayers. Stay strong, and stay supportive. It makes a big difference daily.

HI tbear73 I hope this helps. I remember seeing something about statin drugs on the myositis association website, go to the site, and type statin drugs in the search box. I hope you find some answers Good luck csarv

Hello everyone. This is my first time ever posting on here. My husband is actually the one who has been diagnosed with Antisynthetase Syndrome. He has the Jo-1 antibody type and was just diagnosed a week and a half ago. For 4 months prior to that he had been being treated for Sarcoidosis with Interstitial Lung Disease even though his Rheum dr had lab results showing that his Jo-1 results were way elevated, CK levels were 10000 in hospital and and not responding to treatments they were giving to him. We asked for a second opinion and were referred to a pulmonologist at Univ of Nebraska Med Center who then saw the lab results that his old rheum dr sent with us and immediately made appt for us to see their rheum dr the next day. My husband was admitted to the hospital the next day from the clinic as they diagnosed him with Myositis (still not sure what subtype yet), Antisynthetase Syndrome and said that his CK levels were still very high and his PFT showed only 43%. Keep in mind he was working a full time physical labor job in November 2010 with no problems!!! They of course were very concerned as this came on so acutely and progressed so quickly. They blasted him with 1000 mg/day of IV Solumedrol for 3 days in the hospital, did tons of labs and a bronchoscopy and ct scan. He had already had a lung biopsy done in Dec. Well, apparently he has some scarring and fibrosis in his lungs but not as much as we had been told by previous docs. He has alot of active inflammation in his lungs - thus the blast of steroids. His other major symptoms is no strength/loss of muscle in his hips/thighs/upper legs. He has some skin issues - mostly dry patches on legs and arms. He has had some side effects from the steroids he has been on for last 4 months (40mg/day). So, the plan is to double his daily dose of prednisone - so 80mg/day and add Cytoxan - plan is to take it for 3months. He will also be taking an antibiotic with this as preventive measure. He is pretty scared about the possible side effects of the Cytoxan and not eager to start this treatment. The steroids from the hospital definitely made him feel a little better. He was on 3L oxygen at rest/sleep and 6-8L with any activity. He couldn't do anything without getting really short of breath before and had trouble getting up off the bed or couch. Now he is on 0-3L at rest and 3L with activity and has much less shortness of breath with activity and less fatigue/weakness overall. I keep having to remind him this is just going to be short term as his disease has not been "cured" with the steroids :-) So, we are quite upset with our first set of drs as they had the info in front of them but for some reason didn't think to research it further or refer us on - just kept going forth with same tmt (he was on methotrexate too) and saying "see you in a month". He was dying!! We have switched all his care over to the doctors at UNMC in Omaha - they have been great! They are referring with drs in Pennsylvania, I believe, as they said they have seen many cases of Antisynthetase and have experience with what treatments have had most success. Nice to know there are others out there to talk to! Sorry this was so long.

Tam Kathleen - Thank you for sharing your husband's story. I also lost my lung function rapidly (from 100% to 35% in 6 weeks). But I want to tell you that 23 months later I am no longer using supplemental oxygen. It took 14 months for my lungs to clear and the last 9 months for them to regain their efficiency. I go in next month for more PFTs but I'm guessing I'm back into the 80+% range, It's a long journey but he can heal. Keep reading through the posts on this site - they have invaluable information for charting a course through this rare disorder. In case the docs didn't tell you - the high dose prednisone can cause muscle weakness too (kind of a double whammy). Another thing to ask for is a referral to pulmonary rehab. This was huge in helping me cope with various stages of lung impairment and trying to regain strength. I hope things go well with the Dr's in Pennsylvania. My best to you both. Kelly

Thanks for your reply, Kelly. The doctors have said to hold off on pulmonary rehab right now as he is not ready for it - too weak and need to stabilize and see how body is going to react to increased steroids and cytoxan. He just started cytoxan this week - so we are eager to see if it works over the next few months and pray for few side effects!

I hope he is doing better and the cytoxan treatment goes well. I should have said the pulm rehab is for when things are a little more stable. The therapists I dealt with were great at helping me learn how to use my limited energy and lung capacity to get through daily life. They - and the respiratory therapists - seemed to know more practical and helpful bits of advice for how to best use the O2, options for dealing with side effects, etc. I would often ask them the same questions I had for my docs and get better information from them. I've been off the prednisone for 2 months and am starting to have what they think is a flair up. Dry cough again, O2 sats dropping while exerting myself, coughing fits in the morning, hazy chest x-ray. Will be doing a 3 day mini pulse of 80 mg prednisone then dropping down to 10 mg/day. Oh well. Anything to catch it early and keep my lung function. One more thing that has been helpful is having my own oximeter. Knowing my O2 sats helped me learn when to up my oxygen and connect how I was feeling to what my O2 levels were. You can get them from nonin online for about $100. If you get a prescription for one from your doctor then you might be able to get reimbursed from your insurance or at the least can deduct it on your taxes. www.go2nonin.com/ Hope he does okay with juggling the side effects. Sometimes they are just as exhausting or frustrating as the ASS. My best to you, Kelly

i just need help. been diag. 6 months ago. i have been on disadilty 6 yrs. for other things lots of othere things. i am to the point where i just want to dte. i fight that every second of this life. this is not me. i dont know where i went. pills more pills. i want me back, social worker for childern. fix every body else for 22 years. now i cant take care of my own self. i hate this stuff. no body understands or cares. i am so tired. cant even talk about it. when asked how i am i cant hardly get the lie out any , iam ok. well i am not ok. sorry u guys , who has to read this, i had to get it out ty

Nanasix, Don't give up. If your doctors aren't helping you find others. It seems the ones who are most in touch with what's going on with all this are at University hospitals where active research is going on. My symptoms started out of nowhere, but I was able to get great doctors right from the start. Don't loose hope, but keep reading, keep searching, and we will all keep praying for you. We know what you're going through, and you don't have to tell us that "you're fine" if you aren't. We know its tough. We know all the tests, drugs, and side effects are no fun. One of the wierdest side effects for me is that I suffered with sinus headaches my entire life. While I was on prednisone for 2 years as part of my treatment I noticed after about 4 months that I didn't have sinus headaches anymore. Well they can't leave you on prednisone forever, so now when the weather goes goofy and I get a sinus headache, when the headache goes away I get vertigo. Totally off balance, the room spins, and I have to hold onto walls, chair arms, and sometimes the matress I'm lying on, just to keep from falling. But, my symptoms have gotten better. I went from seeing my doctors every other week, to once a month, to every other month. Now I'm running at about three times a year and feeling and breathing better for the most part. But there are still days when I think, "Why me? What did I do to deserve this?" I still don't know those answers, but I'm not ready to give up yet. Please take care, keep your chin up, and do what you know you need to do. And like I said, we will all be praying for your strength, both inner body and spiritual. God bless you.

Nanasix, My husband has Jo-1 - diagnosed a few months ago - but symptoms started in Nov/Dec 2010. I of course don't know first hand what you are experiencing but I can see what my husband is going through and I can only imagine the frustration and anger of "losing the old you". He of course can no longer work, as he had a physical labor job. He can't do the "manly" chores of the home such as taking out the trash or mowing the lawn. He feels inadequate as a husband and father all the time. I remind him that jobs and money and status have nothing to do with who you are as a person and I didn't fall in love with him for any of that. I am also a social worker so I do understand your difficulties with being used to helping others and "curing" them - and now you are the one who needs the help and curing. It is often a tough switch in roles for we helpers :) I will pray for you. Please don't give up. There are some good doctors and hopeful treatments out there for you all! TC