Hello, I'm new to this forum. I began have arthritis and raynauds in my hands and feet in November and then a flare up a "mechanic hands" on my hands and feet. After a trip to urgent care centre in calgary - they completed blood work and dismissed my symptons as nothing. My hands and feet got worse so I went to the Foothills hospital in Calgary and was sent to see a Rheumatologist the following week and she did more extensive blood work and a chest xray and to everyone's surprise my results came back as highly positive for Jo-1. The unusual part is that I had no lung involvement apparent in my chest x-ray and my blood work did not show myositis...yet. I was put on immunosupperants and monthly bloodwork and will have having an MRI and checking in with my Rheumy every 3 months. The rheumatologist believes we have just caught it very early since I'm still relatively young...35. Has anyone else out there experienced disease onset like this with the secondary symptons appearing first? If so, what was your progression to the major sypmtons? Additionally, is a chest x-ray enough to rule out lung involvement? Or should I be having a CT scan and PFT? At least to have a basline to see if things progress. Based on my research if I wait until I have a hacking cough and can barely breathe there will have been irreversible damage done to my lungs. What should I do? And to the guy in the city of a million people your not the only one anymore. Also, why are you seeing a neurologist and not a rheumatologist? Who is your rheumatologist? Thanks everyone for any feedback.

Greetings, Leveliegh, Looking back, my first symptom was my hands, and it was diagnosed by a dermatologist as dermatitis. Nothing she prescribed worked on it. After about 6 months, I was showing some other symptoms, mostly arthritic problems, which I am hereditarily prone to on both sides of the family. My primary care physician sent me to a rheumatologist. She took one look at my hands and said that she had a feeling she knew what it was, and ran the blood test that diagnosed me. She sent me immediately to a lung specialist. I don't see that doing a PFT would be a bad thing. Having a baseline now would be a good thing. I had a tight dryness in my chest that I thought was just a cold coming on, as it turned out, it was scarring in the lungs. Very minor. I've been seeing these two doctors for four years now. My PFT's have actually gotten a little better, and with the meds I'm on, the tight dry feeling when I breath is gone. I take Cellcept (this is an anti-rejection drug) and dapsone (this is a very low grade antibiotic with a small anti-inflamatory med thrown in). I have nearly completely gotten rid of the mechanic's hands with an over the counter cream called O'Keefe's Working Hands. I buy it a Lowe's Hardware, and I think it is the most wonderful thing in the world. My hands used to be like sandpaper, with scaling. That changed from the first time I used this cream. I wish you well in this great experience we are all going through. I applaud you for not giving in to the first group who said it was nothing. The earlier you can get onto this, the easier it is to maintain. Unfortunately, there is so little known about it, it makes it hard to treat. Keep fighting, and do what you need to do to feel good. And remember that everyone on this sight knows what you are going through, and will give you at least moral support for when things get bad. You've caught it early, like I did. Thank God you found a doctor who knew what was going on. That's the best start of all.

Hi leveliegh, I was diagnosed about a year and a half ago at 29 yrs old. My first signs were rashes all over my face, head and in my ears and mouth. My doctors dismissed it as poison ivy. When it wouldnt go away or stay away without prednisone, they sent me to a derma tologist who biopsied some of the bigger spots and told me I just had dermatitis. My face got worse and worse til i could barely see through the swelling from the rash. At the same time my proximal joints (hips and shoulders) started freezing up on me. I could barely walk and forget brushing my hair. This is when my fam dr sent me to a rheumatologist, who also sent my to a neurologist, and from tons of tests. I was having issues with my lungs, but I wrote that off to my asthma. One morning I woke up with such bad chest pain and unable to walk. I went to the ER in Hagerstown. They did a chest xray and said I had some complicated pnuemonia and said they couldnt treat me so I was taken to Johns Hokins who diagnosed me the next day with ASS with the PL125 antibody. Within two days I was rushed to ICU with 2 collapsed lungs. I spent 14 days in a coma and 14 weeks in ICU. It goes on and on. Since they didn't catch it early, but at the last possible minute I have been battling numerous problems. I have myositis,polymyositis, reynauds, intersistial lung disease, pulmonary fibrosis, inflammatory arthitis, had cervical cancer, and numerous stomach and head issues. It's been a very long year and a half!! My advice, fight for the PFT, CTs, MRIs, muscle enzyme tests, EEGs EKGs, so they have a baseline. You are a lucky one who was caught early, keep on top of it! Good Luck and use our site for anything, questions, to vent, to share any good news!! Natalie

Thank you Natalie and Tbear for the advice. I realize I'm lucky to have caught this early and have an excellent opportunity to start the fight now!. I'm really happy I discovered this site!

Hi Leveleigh I am really sorry to hear you have now been diagnosed with this aweful disease. It really sucks. I guess I am the other person in this city of a million people, and am not alone with this anymore. I am also from Calgary. The reason I am seeing a neurologist is that he seems to be the one person that knows what is going on with this disease, and does not sit and wait on anything. I also have a Respirologist on my team. I do have a ruematologist as well, but she is basically waiting on the sidelines if anything else comes up from this. Currently I have Jo-1 positve Antisynthetase, with Interstitial Lung Disease. This includes Polymyosiyis. Luckily I do not have the mechanics hands, but do show very early signs of Raynauds. I would love to get together with you to discuss both symptoms and treatments if you are interested. I will give you my contact information if this is the case. Since I am currently not working do to this, anytime for me is a good time. As far as the chest x-rays go, I do think you should have a CT scan, as it will show much more then the chest x-rays can. If this gets to the lungs, the prognosis goes down considerably, so do everything you can to monitor it. Also, the blood work may not show myosistis, but a muscle biopsy would be much more prudent. I will definately show the myosistis if present. I have had a ton of scans and tests and bloodwork since this all began. I do blood tests every 2 weeks to monitor both the disease, and the meds I am on for it. I look forward to hearing from you. Keep up the good fight and god Bless. Wayne

Hi Wayne, I really appreciate you writing me back and providing me more information. I would love to meet and pick your brain on what you have experienced dealing with this disease. It would be nice to have someone in the city that I can turn to for support and advice. I work full-time and have travel to the US frequently for work. I'm free this weekend on Saturday or Sunday morning...we could meet for a coffee/muffin or breakfast....I live near downtown. Is that close to you? Maybe if you are comfortable, could you send me your email address it might be easier than posting to each other on a public forum. Thanks again for offering you support! I really appreciate it! LE

Hi LE Saturday or Sunday would work great. I do my blood work at 7 AM Saturday morning, but am otherwise free after that. I would love to meet. I also think it would be great to have someone close by to share and have support and advice from as well. Due to the polymyosistis, I am currently not working, so am pretty flexible as to when I can meet.... I am also close to downtown ( Renfrew/Bridgeland). My email is parnellw@telus.net If anyone else on here wants to email to discuss our situation and specifics as well, you are all more then welcome. Keep up the good fight and God Bless. Wayne

Hello family I was diagnosed about five years ago with lupus.In December of 09 i had a bad accident an surgery.In august of 2010 i had a cough that would not go away. I was admitted into the hospital they kept asking did i smoke i never have smoke. They did a biopsy and said i had something called BOOP.Then 2011 i start seeing another doctor because my insurance change by that time i was walking like i had MS so they ran tests he said i do not have lupus i was positive for jo1.The bottom of my right lung is collapse an i need oxygen when walking.As of today this rash been on my face an back about a month. And my throat an the feeling like something is in it all the time.Behind my right eye is pressure.I just started with the pain in my hands that don't go away.They started me on cellcept last week.My lung doctor says I'm not getting better but I'm not getting worse. Even with all of this i feel good.So i would stay on top of thing just like every one says. Keep up the fight onetouch

Hi Onetouch. I am really sorry to hear it took that long for the correct diagnosis, as well as the pain and problems you are encountering. So far I have been lucky. quick diagnosis, and quick treatment. The biggest thing that has worked so well for me is the combination of prednisone (wish I didn't need it, but glad it works) and IVIG. The IVIG has made the most difference. It has helped my muscles tremendously, as well as brought my lungs up to almost 70% capacity (from 10% at diagnosis). It has also meant the difference of being close to wheelchair bound, to walking without a cane. It is my little miracle drug. I was also having the problem with my throat, but it went along with the polymyositis, and is kept under control with the IVIG as well. I would strongly urge this to anyone who can get it. I will keep you in my prayers. Keep up the good fight, and God Bless. Wayne

hey everyone, I talked to my dr about ivig and they said its only a temp fix and something they would do if I got really bad again to quick fix. I get Rituxam infusions every 6-8 months. I'm on cellcept and prednisone and a host of other drugs. I'm coming down off the prednisone now so fingers crossed I stay ok, last time I didnt.

Le - I think the best advice I can give you is continued follow-up with rheumatolgoist. My husband was diagnosed in his late 30s with dermatomyositis (mechanics hands, some muscle weakness). It was not terrible, something he could live and work with but he stopped seeing his rheumatolgoist and went into somewhat of a remission. Then he developed a cough a couple of years ago and his energy level certainly was decreased, he had nodules on his elbows and a very dry mouth to name some of his new symptoms. He went to back to his rheumatolgist after seeing his primary care doctor and anx-ray already showed lung damage. Pulmonary function testing showed lung function was decreased by 50% and CT scan showed fibrosis and honeycombing. He is currently on Cellcept and fairly stable (knock on wood!!) I guess my point is, continue to see rheumatologist and follow-up to TRY and prevent any damage that can be caused by dermatomyosistis, anti-Jo1, etc.

Weiner66 did your doctor give you a hard time about prescribing IVIG? It's something I would love to try but my doctors here avoid the subject. I know it's very expensive. Does your insurance cover quite a bit? The only reason I even know about what it is is because of posts from these forums. I have seen 4 rheumatologists and 2 neurologists and not one of them ever told me it existed. I have a friend who is on it for a different autoimmune disease. He says it's his miracle drug.

Hi Rbilton17 I have to agree with your friend. For me it is also a miracle drug. I would not be where I'm at today without it. I live in Alberta, Canada, and fortunately it is covered 100% here, for as long as I need it. Even if it means taking it for the rest of my (hopefully very long) life. I truly feel bad for those of you that have to fight with insurance companies to get it. My neurologist was the one who suggested it to me, and within weeks of being diagnosed. He did not hesitate, nor did I. I had already looked into it from hearing about it on this site. You are right about it being expensive. It costs about $15000 a treatment. at 1 treatment every 3 weeks, that puts it at around a quarter million per year. For me it is a small price for what it has done. It has meant the difference between a wheelchair, and walking unaided, as well as bringing my lungs from 10% back to 70% capacity. I definately have a fighting chance at a longer bettter life. I am also hoping to get back to work soon. Less then a year after being diagnosed. I hope there is some way that anyone needing this, can get this. With my imuran no longer working, and having to switch to another drug (cellcept) my costs will go up again. My neurologist just tells me not to worry. His job is "to get me the medicine I need, at little or no cost to me". It is my job just "to take it and get better". It would sure be nice if all our Doctors felt this way. Take care, and God Bless.. Wayne

Amen, Wayne. I've been on Cellcept for almost 2 years. It's done wonders for me, but they caught this thing very early for me. I thing the worst thing I had to deal with was the prednisone. I could not stand the taste of it. I actually lost weight while on prednisone. We all have to do what's best for us. My lung doctor wanted to change my meds last fall, but I told him that the Cellcept was working better than anything else they've had me on. I am breathing so much better. They did reduce me from 5 pills each day to 3, and I haven't noticed any change at all in how I'm feeling. Do what your doctor's tell you to do. We have to believe that they are looking out for our best interests. God bless us all, and our doctors.

I always say that I am now a dinosaur of this illness. It has been 26 years since I was diagnosed. Back then doctors did not know very much - some of them still do not so it has definitely been a battle. I live in British Columbia and recently attended the 2011 myositis convention in Las Vegas which was absolutely the most valuable experience that I have had with this illness. The conference bounces around the US and is in a different city each year but I would highly recommend for everyone with mysositis to attend. You will learn so very much. I have written the things out which I and others have found helpful in fighting this disease...also there is a link to the information on antibodies by Dr. Cooper who is studying our illness. He probably knows more about this disease than any other living person. Give it a listen. Tips for living with Myositis - JO1 Antibodies - Antisynthetase syndrome I have largely used plaquinel, lung specific steroids, ASA, and alternative therapies and lifestyle change to help control my illness. I've had a few scares, but I'm still here, so it must be working. Lorelei aka Ladymermaid

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