As I've been trying to educate myself on Antisynthetase Syndrome and treatment options, I have learned there are many different types - each subgroup seems to various outcomes and reactions to treatments. I plowed through my all the lab tests I've had done in the last 6 months and on the Myositis panel found I tested positive to the OJ Autoantibody. This seems to be a subtype of Antisynthetase that is more associated with interstitial lung disease and less with myositis and raynaud's. There are other subtypes... PL-7, PL-12, JO-1, MI-2, EJ, KU, SRP... My antisynthetase syndrome manifested as rapid onset of Interstitial Lung disease, dropping my lung function all the way down in the 30's. Six months later my lung function is back into the 50s (I guess I'm half -ASSed now). I am being treated with high dose prednisone (currently 40 mg/day) and Imuran (100 mg) plus work with a naturopath for complementary care and nutrition. I am a far cry from my former go go go self but I am feeling like I'm moving towards wellness again. Do folks know which subtype they tested positive for? Also, for folks in the US with Antisynthetase and lung involvement.... has anyone sought out care at the Autoimmune Lung Clinic at National Jewish Health hospital in Colorado? Helpful? Thank you, Kelly

Hi Kelly!!! I don`t have much to say, simply that they found the Anti Jo-1 in my tests. I have both myositis and intersticial lung disease. Best wishes for you Kelly... and for everyone... Julia

Hi, everyone I am commenting on Kellys question. I am JO-1 positive, and have dermatomyositis as well as the interstitial lung disease. I have been told that The National Jewish Hospital is one of the best in the country. I am thrilled for you that your lung function has improved you give us all hope. Take Care Cathy

Cathy and Julia, Thank you for your reply and status information. I'm trying to do as much research as possible as I seem to have arrived at the intersection of medical science & art - and faith. There is just so little to guide our course at this point. Feeling like I'm in good hands but also feel anxiety to get the treatment right this time around if I'm to recover as much lung function as possible. Hope you are both doing well. Kelly

Hi Kelly I tested positive for Jo-1 antibodies, and the disease started with interstitial lung disease and progressed to myositis and raynauds, mechanics hands and now beginning symptoms of arthritis in my hands and shoulders. I take 15mg pred and have nearly finished 6 months of cyclophosphamide chemo ( which i'm not convinced has helped). Weather is starting to change here in the Uk, and I'm noticing a flare up of symptoms with the cold , making breathing painful when outdoors, and having to keep my hands warm Take care Ali

hi Alison!! I am also on Pred, 20 mg, trying to taper this doses. I also take cyclophosphamide for 6 months, but it was oral, i took two pills a day, 100mg. Are you with many symptoms instead of the pred? Did you fell better with a higher doses? Im with pain in a wrist and im having skin problems for the first time. Take care.. Julia

Ali, With the cold and rain settling in here (Pacific Northwest United States, Oregon) I have noticed it harder to breathe. I have been wearing a mask often (to reduce the exposure to virus) and notice that it keeps the air warm and makes it easier to breathe. The physical therapist at pulmonary rehab clinic also suggested wearing a scarf over my mouth & nose in the winter to help warm the air. Some mornings I do both when taking the kids to school! Plus I always have gloves on as once I do get a chill, it's harder for me to warm up these days. The high dose prednisone does make life difficult and it takes 60% of my energy each day to manage that alone. But I'm trying to tolerate it a few more months in the hopes of rescuing my lung function. I hope you find a treatment that may work better for you. Take good care, kelly

Hi Julia I got the pred down to 10mg but noticed the stiffness in hands and also the muscle weakness was worse, so doctors increased dose back to 15mg.I hate taking it because of the side effects, but I'm learning that it is probably the best thing to help with the symptoms. Have started using Eucerin cream (10% Urea) for my mechanics hands, will let you know if that helps. At the moment three of my fingers have split open. I tried Flexitol cuticle cream (from Australia which was very good, but it is a tiny tube and doesn't last long). My hands are swollen like sausages at the moment and I keep dropping things in the kitchen, and like you I have pain in my wrist. I have been given a splint to wear when resting and overnight, I hope this helps, but it is not very pretty! Take care Ali x

Hi Kelly Thanks for the tip with the scarf. I always wear one around my neck but (stupidly) it hadn't occured to me to put it across my face! It is good to hear of tips from everyone living with this horrible disease, to share ideas of coping. I feel very alone with this, and imagine everyone has different ways of dealing with it. I find it hard to chat to friends about it, because they don't understand how rotten I feel because I look well and like my old self, just inside that I'm aching and hurting with the stiffness and pain, but they can't see that, and I hate to keep going on about it and so I keep quiet. Take care of you Ali x

Ali, Calendula cream or ointment. Good for healing open wounds. Kelly

Hi Kelly Thank you for the help with the cream, I will give it a try. It's so frustrating that little tasks that we used to do without thinking are now such an ordeal. I used to pack so much into my days and be so tired at the end of them, now I'm tired before I start! My son is 17 and pretty self sufficient, but I imagine it must be really exhausting with young children to care for. I'm on facebook if anyone wants to add me, Alison Baldwin, Brighton and Hove. UK Take care Ali x

Hi Everyone, I am being diagnosised with "PL-12 Anti-synthetase syndrome" . I had labs drawn today to see if I can take Immuran. I have had ILD for 21 years and been in remissions for a good 5 years until 2008 when I developed Pulmonary Hypertension. I currently take 8 mg of prednisone. I have Raynauds and muscle weakness. What is mechanic's Hands? thank you, Hope everyone has a good holiday. Barbara

Hi Barbara Mechanics hands is hardening and roughening of the skin on the finger tips, (hyperkeratosis) with splitting of the skin. My fingers have been splitting open. I have been told that Aquaphor cream is good for treating this, but i'm unable to get this in the UK. When were you diagnosed with PL-12 Barbara, is it a new diagnosis, or have you known for the last 21 years what you were living with? Have you had the muscle weakness for that length of time too? and how have you managed living with it? Sorry, so many questions! Happy holidays to everyone, Ali x

Thanks for your reply Ali. I have had muscle weakness all along for the 21 years. My original diagnosis was Idiopathic Iterstitial Lung Disease with Rheumatoid manifestations. I have been on Prednisone for 17 years at various doses. Then it changed to mixed connective tissue disease with lung involvement.The diagnosis of "PL-12" just happened. I saw the Doctor on the 22 of December. The Lord has been with me the entire time and my faith helps me to cope. The interstitial lung desease has left me short of breath all this time and it is now worse with the pulmonary hypertension. I use Oxygen via canula through the night and for any exertion, plus other medications to cope with the ongoing symptoms. It seems to get harder every day to cope with this illness of mine and its unfolding limitations. I am awaiting blood test results to see if I can tolerate the Imuran. I am just learning what I am living with. I have questions, too. But for now I just take one day at a time and wait. I use Blistex lip ointment for my finger splits, seems to help me. Thanks again. Barbara

Hi all im a newbie, and like Kelly am trying to learn more about this disease. I have sceloderma, myositis, raynauds and now this one, apparently. I have no idea what sort as i am now under going tests. How do you find this out? Will my consultant tell me? Does this affect you hugely? I am 20 and was first diagnosed with myositis when i was 15. So many questions haha Thanks Mary

Hey Mary. You may know more about this journey than I do given the path you've already been on. It seems that Antisynthetase Syndrome is most commonly a secondary diagnosis with the myositis-like autoimmune disorders. Over the years they have discovered several types of antisynthetase auto-antibodies. The kind I have (OJ) is about 2% of all AS diagnoses, and tends not to be associated with myositis. Due to it's rarity, there seems to be no researched treatment protocols and I haven't been able to find any one else to ask about their treatment journey. So my docs and I are kind of winging it but having success so far. (8 months ago I was down to 35% lung function but now I am up to 70%). To find out what type of AS you test positive for, ask to see the results of the Myositis Antibody Panel. There are 8 known types (MI-2, PL-7, PL-12, EJ, OJ, KU, U2 SNRNP, SRP). I don't know if it will help your treatment plan to know. For me it was helpful in that I do have lots of muscle weakness but it turns out to be a side effect of the high dose prednisone, not myositis developing. It also helped us pick which drug combos to try to suppress my immune system. I don't know if all this has been helpful or just confusing. Some times I can kid myself that I have any control over all this by learning more medical terms. Kelly

Thanks Kelly, That was very useful. I dont really know much about my conditions, (apart from research) as my consultant(s) arent that great to be honest, (apart from the one in salford i am now seeing) i never knew i had sceloderma intil i was pregnant and lung disease intil saturday. So its all quite a shock. By the sounds of it you have a great consultant. Who works hard to keep you well. Im glad your lung function as greatly improved. I think you have control over it by learning more medicial terms as it improves your knowledge and you can understand better. Like you they dont think the muscle weakness is the myositis as they think its inactitive again. but may have muscle wasting or damage. Can i ask, how you get on day to day life, i know its different for everyone due to different types etc. Sorry for being nosey! you dont have to answer! I find it difficult getting of the ground, lifting my one year old, opening anything, out of breath easily etc. but do try to maintain a normalish life. Thanks for answering my previous question Take care Mary x

*Kelly & Mary, *I have polymyositis, ra, fibromyalgia ASS with Jo-1 antibodies and interstitial lung disease. I was diagnosed with the polymyositis a year ago and ASS since August. I recall reading some good things about the place you mention in Colorado. I am getting treatment at the Mayo Clinic and so far have been impressed, Currently I am tapering down my prednizone and I am on 20mg (was on 80mg for 5 months). As far as day to day life, you do what you can and not feel guilty about what you can't do. It is not easy but I have to remind myself of that everyday. It has been a huge adjustment for me from being an active mom of 3 that worked 45-50 hours a week to not working and being homebound. I just take one day at a time and try to be thankful for each day that I have been given. Hugs to you both!

Hi Mary I still don't feel that I know much about this condition, as the doctors don't really seem to have any definite answers, or any definite courses of treatment that they follow. Which is very frustrating, as I just want them to get it right and get me better NOW, not keep trying stuff and waiting, and then trying something else when that doesn't work! Ask your doctors for the results of your blood tests, and to explain them to you. My consultant thought i had lupus, that diagnosis changed to connective tissue disease which then changed to Anti-Jo 1 polymyositis. I still don't understand why I tested positive for the other condtions, and then they said i didn't have them. So I have a list of questions for the doctors when I go to see them this week! I go to ILD clinic at the Brompton Hospital in London for my breathing, which has improved but I'm still short of breath when walking and doing stairs or doing anything too vigorously. I also go to the Lupus clinic at St Thomas Hospital London, I think the doctors there seem to be leading the treatment and guiding my local hospital in what to do. It seems to be a juggling act of improving the symptoms, but trying not to produce more problems with the side effects of all the drugs. When I was diagnosed I couldn't hang the washing out or have a shower without nearly collapsing, but my breathing has greatly improved now, but the muscle stiffness is worse than it was six months ago. I have physio, hydrotherapy (which is fab) and have had help from my occupational therapy clinic with hand exercises and gentle physio, as well tips on good gadgets to help around the house. Also have had some help with counselling to help come to terms with all of this. The worst thing (in my opinion) is the frustration of waiting to get better, and accepting how I've changed. I still haven't been back to work, I still hope to, but think this will be part time, and not full time as I had hoped. A quite hard lesson for me is accepting that I can't do everything in a day like I used to, but to feel quite proud of what I do achieve, however insignificant it might seem to someone else. Take care Ali x

Mary - I don't mind you asking. There are so few of us in this predicament that the more we can share the better. Like Cookie shared, it has been a huge adjustment and my life is completely different than it was a year ago. I used to have unlimited energy, worked as a massage therapist and as a full time parent to a 3 and 8 yr old. My illness came on rapidly and within 6 weeks I was down to 35% lung function and was hospitalized for several weeks while we figured out what was causing it. By then I was so disabled I couldn't really bath myself. It's been a long hard road back towards health. Not being able to do basic things, like get to my bedroom on our second floor, pick up my little one, open a jar or lift much of anything, can be heartbreaking. And lots of things I try to do just end up making more work or projects for someone else. It is often a comedy of errors. I have been very blessed with a partner, family and community that has jumped in and taken care of us. I have had to let go of being able to plan things and learn to live with not having much control. Some days that puts me in a good place emotionally, makes me more present and highly grateful for all the love in my life. Other days I am overwhelmed with anxiety, feeling useless, and grieve many expectations and losses. When I wake up each morning, and the awareness of my current reality washes over me, I am often surprised that I can and do get up. The word "determination" is often in the forefront of my brain. I am surprised to find it so deeply within and there urging me along. I have learned a lot about myself, taking care of myself, and more than anything, being kind to myself. The spiritual/emotional journey of this illness has been just as important and trying as the physical one. I have managed to put together a good medical team that includes a pulmonologist, a great primary care who helps me coordinate the specialists and all the tests, a naturopath who helps me with nutrition, supplements and ways to deal with the medication side effects, and a mental health therapist. Every bit contributes towards what I need to get through this. Also a sense of humor is one of my better coping strategies. Some days, it's all I've got left. Kelly

Thank you cookie, alison and kelly for your replies. Also like you all, i worked full time and at one point juggling two jobs, but ever since i had my little one a year ago, everything seems to have flared up. I didnt know i had anything else but polymyositis intil i was preganant and i learnt i had sceloderma and reading my report from my new consultant i was shocked read i have yet another one (antisynthetase) and apperently had lung disease when i was first diagnosed with myositis at 15. It was all news to me on saturday morning! I felt deflated and emotional - and like you cookie, I wake up to think im thankful for each day. At the moment I am coping, like you all, doing things day to day but i do feel guilty not doing as much as i like to . . its lucky these illnesses makes you lose weight, or i think i would be a hippo by now haha I agree with you Kelly you certainly need a sense of humour or you would cry! It is frustarting Alison but we have to be the black sleep, i guess, dont know why?! Maybe we will one day help to cure it? who knows? I always thought my condition (myositis) was down to a tick bite i had when i was younger - because ever since then i havent been right (i think people who know me would say it was long before then :) ) I read that dogs get myositis from tick bites - not that im applying we are animals of course! But do consultants not think that a forgien body of some sort would of triggered this? Or servere stress? Then due to lack of knowledge medication wise it has progressed to this? Has anyone else thought why/how they might of got it? I will ask about my blood tests thanks cookie - Kelly im glad you have such support, my partner is great like that but only prob is he is working full time, so fingers crossed his employers will let him go part time - so he can help me out more with the little one. So Alison are London any good - in your opinion apart form wrong diagnosage? I used to live in ipswich (not far from london) and they werent great. now i have moved up north they seem a bit more helpful apart from passing the buck a bit! I hope your all well! Im learning to drive at the moment, so i can get out a bit more. Off for a lesson today, but am rather tired at the moment! Do you all drive? I feel like a 90 year old at the moment, trying to get on and off the floor . . my mother in law watches me, i think shes tempted to help me up after working with the elderly in care haha Take care of yourselves x

Hi, It seems we all have different antibodies. I have been recently, like December 2009, diagnosised with PL12 Antisynthetase Syndrome; but I have had ILD for 22 years. It took 4 years to figure it out and I had been labeled Mixed Connective Tissue Disease. Now my "symptoms" put me in this class of illnesss. I have Interstitial Lung Disease, Raynauds, Polymyosistis Disease and RA, and last year I also developed Pulmonary Hypertension. I seem to feel frightened a lot of the time and I too rely on humor to get me through and my faith. I also seem to have a sense of denial, this illness is not what they say it is and I will get better, but none of the doctors I currently have think I will improve much. I use Oxygen for sleep and walking and making the bed, a chore that I cannot believe takes my breath away. I have not worked in 14 years, I had worked as an RN in the operating room. I have 2 adult children and 2 wonderful grandsons who help me tremendously. When I first got sick the Pulmonologist thought the Hepatitis Vaccine was my trigger. I have thought it had something to do with my penicillin allergy. I would love to understand the why's and how's of this disease. I am just starting imuran and wonder how I will do. This support group is wonderful for me. Thank you all. Barbara

Hi Barbara, How long have you been on oxygen for? I can understand about denial. Im always thinking im find intil i untake a task. I think your brain plays a role in how well you feel - so if you have hope and determination you will slowly improve . . well i like to think that! Im glad you have a wonderful family to help you out. I think we are all blessed with that - even if we are not totally blessed in health haha. I hope you do well on your new medication!! keep us updated. take care x

Hi Girls!!! Like some of you know, I´ve been diagnosed one year ago. Anti Jo, interstitial lung disease and polymyositis. At this moment I´m feeling really great. My lungs have improve a lot. I took ciclofosfamide for seven months, and it seems to work!!! Now I´m tapering the prednisone, I´m taking 10 mg, plus Imuran and plaquenil, and a few other pills... I have a 20 months old baby and a eight years old girl. As I have told you sometime, I believe I get sick during labor, that was very stressful. Anyone else get sick during pregnancy or labor? I am really very good at this moment, hoping that last!!!! I´m trying to lose weight, because I gained a lot with the prednisone... Have a beautifull day... Julia

Hi Julia, My conditions were fine intil i was pregnant and soon as i had my little one a year ago, something seemed to have triggered it again! I am so glad you are feeling great at the moment and hope it carrys on! I wasnt to bad during pregnancy, as i worked full time til the last month of mine, but different can be said now i have had my little cutie pie hehe. Did you get diagnosed all at once? Must of been a shock! I hate predsolone, i go through stages of taking it and others i dont . . which i know is naughty but im very concious about my weight - so i have to be happy about something right? lol and that is maintaining my weight. I bet you have your hands full with a 2 year old!! When did you start getting symptoms of polymyositis etc? Mary x

Hi Mary!!! I tell you: I had an excellent pregnancy, with not health problems at all. I was very shock about the amount of pain during labor, and it was very stressful. On my first pregnancy I had a C section. A few days after my boy was born I began to see my eyelids a little swollen, but that was all. One day, when my baby was two and a half months, I woke up with pain and stiffness in my joints. Then gradually, began the muscular pain and weakness. I saw five or six doctors, with no certain diagnosis. Then, when my baby was eight months old I finally get to great place, here in Buenos Aires, with great doctors that take me serious, and run a lot of tests. I n a few days I was diagnosed with all these. It changed my life, I´m so great full, before prednisone my life was a nightmare.. Oh! I write a lot, I hope you understand my English... another problem I have now is that I don´t have my period any more.. I´m only 38 years old. The doctors told me it will happen for the drugs... When did you start feeling sick after childbirth? Many kisses Julia

i was ill when i was 14 years old and started from there, then it was under control, but after having a child it seemed to have came back, now i have muscle pain, stiffness and other symptoms. Do you think pregnancy brought yours on? or did you have any symptoms before? Its a strange condition, everyone is so different. I feel much better with steriods but i cant kept on them i hate weight gain and the 'moon face' so i tend not to stay on very long, i am my own worse enermy but at 20 i want to enjoy my looks lol. do you have these with prednisolone? Im glad your doctors take you serious. How you coping now? Take care hun x

Hi Guys, I've been busy here in Pennsylvania, digging out from a 2 foot snow fall and bracing for round 2, which just satrted and it is expected to drop up to 20 inches more. I also just started imuran, I am in my third week and the doctors think I am doing great but I feel terrible. Any hints about taking this drug? I was put on Oxygen in November of 2008 to help with the shortness of breath from the Pulmonary Hypertension, a compication of my ILD. I think of all my past medical history and wonder? I had severe pneumonia when I was around 6 years old. Could I have been left with ILD and no one ever discovered it? All the doctors say maybe, but nothing definitive. My current Rheumatolgist is trying to help, he ordered the Imuran. So I just wait and see. Imuran has given me stomaches and boday aches and decreased energy and appetite. Thanks for all the info and advice. God bless, Barbara

I think it is common for autoimmune disorders to flair up after pregnancy. I have several friends who have MS - all did great with very few issues during pregnancy but shortly after giving birth had major relapses and took a long while to get back into remission. Regarding prednisone.... I do have a love/hate relationship with it. It saved my life and is helping me regain my lung function (along with Imuran and NAC) but the side effects are horrid. Coping with the side effects some times takes a great deal of my daily energy... and looking in the mirror and seeing my puffy face, predinsone acne rash, thinning and odd textured hair, facial hair, (plus the whirly mind, not being able to concentrate, mood swings, sleep problems) just all add insult after insult to the real health problem. I've been tapering from 40 mg/day to 30. They had me do this by dropping the dose in one day. Over the last 3 weeks I have had all sorts of problems and finally realized my body is in withdrawals. After talking with my doc today, the next time we're going to drop it by 1.5 mg doses per week and this should prevent flair ups from happening. I also just learned that it takes your body a proportional amount of time to recover/adapt from taking prednisone... so if you were on it for 6 months, it will take 6 months for your body to recover and during that time you are still susceptible to infections, fatigue, etc. It's such a tricky dance. Some days are better than others. Kelly

Barbara, I've been on Imuran for about 5 months now. I take 100 mg/day plus my prednisone (currently at 30/mg). The first month was the hardest as I too had a constant upset stomach, was achy, developed burning mouth syndrome and lost my appetite. The originally instructed me to take it a 1/2 to an hour after breakfast. A month into this the pharmacist suggested I take it WITH breakfast. I started doing this and the upset stomach went away after a week or so. The achy bones and body gradually went away too. It does work on the B cells in your bone marrow and hopefully your body will start to adjust and the aches will decrease too. My doc also had me start taking NAC (an over the counter amino acid supplement 600 mg two/day) to enhance lung health and has been used in several studies where patients were also on Imuran. Ask your doctor about it. Also, my liver enzymes spiked dramatically in the first 6 weeks I took Imuran and they started doing bloodwork weekly to monitor it. It gradually dropped back into the normal range and has been okay since. Just make them watch you closely and patiently. So much work to deal with these meds! Hope you're doing okay. And I hope you have someone to help shovel you out of all that snow. Kelly

Kelly, thank you for the quick reponse. I will try what you suggest. I currently take it about an hour before breakfast. I will take it with breakfast. So far the labs are good. I have the drop in the white cells that they want so it does seem to be working. I have a dear son-in-law and daughter that live 5 houses away and they are good to be.I will ask about the NAC when my doc calls this week. I hope and pray we all better soon. God Bless, Barbara

Hi, everyone I am sorry I have not checked in for a while. I am so happy to hear many of you doing better. To Barbara I have been on Imuran and Cellcept now for a year. The Imuran helped with my lungs a little, it took a while to see progress it needs time to build up in your system, then the doctors added the Cellcept to help with the muscle and skin issues, this is on top of all of the other drugs I am on. Like you I am on oxygen too.The Imuran gave me no physical side effects it has effected my blood counts in such a way now I have anemia and my bone marrow is slow to producered red blood cells. I had a bone marrow biopsy last Friday to rule out any other underlyeing disease. The doctors tell me it is uncommon to use Imuran and Cellcept togather, and this is why they think the drugs are causing the anemia. Right now these drugs are not helping anymore they increased the prdnisone from 10 g to 25 mg right before Christmas and that helped a lot. I have a feeling I will be on a new drug therapy by the end of the month. I hope Imuran works for you, it helped me a little but not enough. Good Luck I wish you all well. Cathy

Cathy - Good to hear from you. I'm sorry you've been through so much more lately. I cannot imagine a bone marrow biopsy on top of everything else. Glad the prednisone is helping. Hang in there. Sending good thoughts to you, Kelly

Hi everyone I was started on imuran on New Years Day 25mg, and then had that increased to 150mg last week. So far I've had no side effects, I was really suffering joint swelling in the hands and knees, was having trouble with movement, but have had my pred increased to 25mg and feel much better (although I'm dreading the increased side effects). I take the imuran straight after my evening meal and I am having blood tests fortnightly. Good news from London consultant that my lungs are no worse, although transfer of oxygen to blood is 50% what it should be, the rest is fairly good. My mechanics hands are really bad, nothing is helping the roughness or splitting at the moment. Good to hear how everyone is, and to hear all the treatment regimes as it gives me something to challenge my doctors with, Take care everyone, Alison x

Hi All, I have had one hell of a journey. I got a sinus infection, stopped the imuran and took a z-pack for the infection. long story short somehow my sodium droppped to 112 and I ended up in ICU on a c-pap asssisted ventilation device. I was so sick. Am now out of the hospital and taking high dose steroids as in hospital I received solumedrol iv every 6 hours. the converting to oral steroids after IV is hard. I am mobile but scared. To see alll my doctors in the next week hopefullly I will improve. I pray you all do well and your lungs and pains get healthy. Thanks, Barbara

Barbara, So sorry you've been through so much recently. It all sounds scary. And then going on to the high dose steroids... that's no picnic. Hope your docs keep a very close eye on you and you've got lots of support. Sending you wishes for wellness. Kelly

Thank you Kelly for the kind response. My docs are hovering, which is nice. I have visiting nurses and seem to get stronger everyday now but am still weak. It is nice the nurses come to the house and draw my blood and reassure me I am OK. they come 3 times a week. Plus I have family close by and friends will start to arrive to keep me company and help me walk my precious little dog. I am actuallly doing a crash wean as I call it going from Prednisone 60mg a day to 10mg a day in 2 weeks time peroid.. I pray I can handle this one. thanks again for the well wishes and sending well wishes to everyone. Thanks, Barbara

Hi Barbara!! I´m sorry reading you were not well. I hope you keep getting better and better every day!!! Best wishes to you all!!! Julia

Hi Barbara You have really been through a tough time, it sounds as though your doctors are being supportive and I hope they get you on the road to good recovery quickly. Let us know how you get on, especially with the big drop in steroid dose, Take care, sending you get well vibes Ali x

Hi All. I am totally amazed I am improving everyday. Still have a bad cough but it is gettting better. The steroid wean is brutal. had a drop from 20 mg twice a day to 20 mg once a day,, left me cranky achy and fatigued. But there is a light at the end of the tunnel.I actuallly have been able to drive my car for the first time in 2 weeks and I can walk my little dog, we are up to 5 house lenghts. I use to do a total block, that will take a while. I have a physical therapist who gave me exercises but did not add the steroid wean side effects so all I can do is my best. I pray you all stay well and improve everyday. take care, Barbara

Glad you're doing better Barbara. Those steroids... I do have a love/hate relationship with them! Two months ago the docs recommended I ''taper' from 40 mg/day to 30 by simply dropping the dose in one day. I had been on 40 and higher for the last 7 months. The sudden 'taper' sent me into 3 weeks of exhaustion, muscle aches, pains, dark moods, tremors, etc. I couldn't even get my kids to school some days. It was too big a drop and my poor nervous system couldn't handle it. I've had a few weeks to recover and we're doing another taper from 30 to 20 but this time we're going really slow. I'm taking 29 mg for 4 days, then 28 mg for 4 days, etc. until we get to 20. It will take longer but at least I won't lose a whole month to not being able to function in the process. Looking forward to getting off them - or at least as low of a dose as possible. Keep improving! Kelly

Barbara So sorry to hear you going through a rough patch I hope you have a speedy recovery. Hang in their with the Prednisone it will get better. You are in my thoughts take care, Cathy

Hi All, I saw the Rheumatologist and my GP and the Cardiologist and all three say I will recover but it will take time. They hope to restore me to my pre event state which was a fair quality of life. I could walk around without O2 in the house but now I am still scared and use it all the time and am maintianing a pulse ox of 95 to 98, which is reallly good on 2.5 liters except when I walk the dog and then I use 4 liters. I will take a second round of Leviquinn just to make sure the sinuses are cleared and restrict fluid intake with as little water as posssible. I am finally finished with the prednisone drops and have settled down. I actually slept soundly last night, it felt so good. The Rheumatologist hopes to restart the Imuran in a week or two and then we go from there. Thank you all for your cares and concerns. I send well wishes to you all and pray you all do very well. thanks, Barbara

Great news Barbara! Always glad to have a good night of sleep on steroids and every little bit of improvement feels so good. Keep on improving, Kelly

Hi All, How is everyone doing? I finally saw my lung guy and he says the cause of episode was most likely a combination of my sinus infection and pneumonia and my lack of sleep and eating poorly and the biggest contributor my BP med, Hydroclorothiazide. They actually stopped my BP med while I was in the hospital, so no more systemic bp meds for me. I continue to improve although I still have need of naps and am slower and I am still using my oxygen most of the time. Sometimes I do without when I sit quietly and have no problem. I pray all are well and doing great. Have a happy spring, Barbara

Hi Barbara!!! I'm glad to read that you are feeling better!!! I hope you keep improving each day. Myself, I´m doing very good these days: tapering the prednisone to 6 mg now, losing weight and feeling great!!! Best wishes to you all!!!! Julia

Hi Barbara So glad you are feeling better, and you have got to the bottom of the cause of the episode, so hopefully it can be avoided from happening again. Let's hope we get some warmer weather soon, and you continue to improve, My symptoms come and go, have to remember not to do too much on one day, or I pay the price the next day. Still on 25mg prednisolone and 150mg azathioprine, not sure the azathioprine is working yet as a small reduction in prednisolone causes a flare up of symptoms. Hoping to return to work part time at the end of the April, bit nervous but I need to go back and see what I can cope with. Happy Easter wishes to everyone! Ali

Hi Everyone, how are you all doing? thank you all for the cares and concerns and prayers while I recovered from my recent episode. I am doing better. I still use my oxygen a lot but I am breathing easier. I am up to 125 mg of imuran and down to 9 mg of prednisone. I actually feel my breath is easier to draw on the imuran and my sed rate is down to 21, it was 59 when I came home from the hospital. Kelly thanks for the tip about taking the imuran with breakfast it helped the stomach aches a lot. My hair is thining but I am breathing. I still get body aches but I can work through them. I pray you are all doing well. Blessings, Barbara

Barbara, Glad to hear you're improving. I will tell you that my hair stopped thinning after a while and has held steady. Of course now it has gone totally curly from the prednisone and most days I look like Albert Einstein with a perm in a wind storm. Oh well, keeps my humor going. Also, on the Imuran - the body aches did stop but it took a long while. I am doing better. My lung capacity is back up to 78% and my lung efficiency/diffusion ability is in the mid-50%. So I am no longer needing oxygen at rest or while sleeping, just when motoring about. I am hoping with more time my lung efficiency will improve as well. I got my doc to refer me back to pulmonary rehab. Hoping a few more weeks with the therapists will help me figure out how to manage my energy levels, oxygen needs and be less frustrated. Working on tapering the prednisone down. Dropping 1 mg every two weeks. Going slow like this seems to help me avoid falling into a pit of exhaustion. Currently still on 17 mg per day plus 100 mg of Imuran/Azathioprine. The 'plan' is to try to get as low as possible or off the prednisone completely but stay on the Imuran. Just trying to stay healthy and rested to help keep my immune system soothed and in check. The kids will be out of school in a few weeks and I'm just hoping to be able to keep up with them over the next few months. Kelly

So just quickly, what symptoms go directly with the interstitial lung disease - I'm experiencing a relatively sudden buildup of extra moisture which gurgles and wheezes as I draw breath, which if I do that deeply, immediately brings on a cough and a sharp stabbing pain. More and more breaths are coughs, and every cough is sharply painful, and I can practically hear the sloshing as I lie down. Sitting up stabilizes things on the "Yes I can breathe shallowly now, mostly without coughing" side of the fence. I miss lying down. Four days from now I see my rheumatologist and pulmonologist in separate visits. But I'll need to sleep before then. So, back to the question: Is the sudden onset of these symptoms what "interstitial lung disease" is all about?

Gregster - Do you have an oximeter to check your oxygen saturation levels? Technically Intersitial Lung Disease is the progressive scarring of lung tissue, usually gradually but sometimes suddenly. Mine came on quickly and within 6 weeks I was down to 38% lung capacity as my lungs had filled with immune system cells attacking my lung tissue. I was short of breath, coughing, couldn't breathe lying down, constant headache from the pressure of breathing/coughing, and desperate to sleep. If you have an antisynthetase diagnosis and you currently are struggling to breathe - I would NOT wait the 4 days until your pulmonology appt. Go to an urgent care, have them check your oxygen saturation levels, listen to your lungs and do a chest x-ray. Particularly have them listen to your lower lungs as that area can get missed or be blocked on x-ray by your diaphragm. My best to you, Kelly

Hi Gregster, I agree with Kelly. Do not run but have your lungs listened to ASAP. Hope you are well soon. Have anice day, Barbara

Thanks Barbara and Kelly, I hear you, and I appreciate your quick response to my situation. Since the breathing crisis only arose as a severe condition when I was lying down, I stayed up -- not a permanent solution, I know, but temporarily effective, and I guess I got better at breathing shallowly so as not to provoke more of that excruciating coughing. I sipped black coffee, sweet. And the pains changed, evolved during the day, no longer remained associated only with coughing, but started to turn up on their own, but especially associated with moving or flexing my body, as in getting up from the couch -- a week ago, such movements were difficult but nowhere near as painful as they've become. Miserable progression. In a long talk with my niece's husband (they're both doctors), I got a better picture of this "early treatment" phase of Prednisone (60 mg.) and what to expect: a series of evolving symptoms and experiences, in which a tipping point of discomforts of various new and horrible types is easily reached from immediately prior levels of greater relative comfort. He's the kind of guy that just hearing his voice is soothing, even if the news he's bringing is neither particularly edifying nor even good. Some people are healers, and thank goodness we have them in our lives. He cautioned me, as you two did, to go get help immediately if I sense a crisis persisting, and I will. But last night I slept three hours, gratefully, with no gurgling and no gagging. I was totally exhausted after staying up all day...three hours is good, with Prednisone and my sleeplessness from it, by the way...

Hi Gregster Sorry you are feeling rough...it's not a fun thing to have, but hopefully you will find a medication regime that helps you to function better. For me, the Lung disease seemed to start as a cough which got progressively more chesty, and which antibiotics couldn't shift. I then got more and more short of breath, just when doing simple things such as hanging out the laundry, doctors gave me an asthma inhaler which didn't help, except to stop me panicking with the feeling of not being able to get enough air. Chest xray then showed patches at the base of my lungs...then the muscle weakness started....and so on. It used to hurt me to lay on my back, as the muscle pain around my lungs was bad, but I didn't have any of the gurgling you describe...but everyone is different, and it seems we all have slightly different manifestations. It seems that each month brings a new ache, or an old one returns as I try to get off the prednisolone. I wish you luck on your journey with this disease, and hope you feel better very soon Alison

Hi Gregster, I forgot about the sleeplessness with prednisone. When I was high dosed, 60 mg a day. I slept 5 hours a day no matter what time I went to bed. I hated it. I am now down to 6 mg per day and sleep much more, thank you Lord. I am still concerned about the sound sin you chest. I can not hear my lung sounds with a sethescope. Guard your self well. Alison how is the job going? Hope everyopne is staying cool and dreaming of the first frost, sounds cool to me. Barbara

“Ah, but a man's reach should exceed his grasp, or what's a heaven for?” Robert Browning quotes (Major English Poet of the Victorian age, noted for his mastery of dramatic monologue and psychological portraiture. 1812-1889) Thanks Alison and Barbara, again - As I cope with these early symptoms and try to keep ahead of them, while they (unhappily) evolve, the saying "Live within your means" comes to mind. My means at the (wheezing, congested) moment appear to be shallow breathing, so I'm living within them, and (is this a bad thing?) doing better and better at it. I'm thinking of starting a new topic on just the lung pain by itself, within anti-synthetase, since it's so bothersome as a set of symptoms and so variable. I can see from what you're saying, ladies, that while we can keep a wary eye on the (shifting) discomforts and the risks, our lung involvement in myositis is unlikely to completely "settle down" within wholly livable boundaries. In that sense, we don't know what our means are, exactly, we just have to go on reaching -- beyond our grasp, maybe. There's a malady which sounds an awful lot like this lung complication, mostly called Bornholm (look out searching, it's also the name of a band) and another Alison describes it this way on Helium.com: by Alison Bowler * Writing Level StarWriting Level StarWriting Level StarWriting Level StarWriting Level Star Bornholm disease or epidemic pleurodynia is a viral infection of the striated intercostal muscles. Caused by an enterovirus, the condition is a rare manifestation of an infection with a common virus. The name Bornholm disease derives from cases described by Dr. Sylvest in the 1930's, which occurred on the Danish island of Bornholm. Prior to that in 1872, Drs. Homan and Daae described the disease in a case occurring in the Norwegian village of Bramble and they called the illness Bramble disease. Other synonyms for the disease include epidemic myalgia, Devil's grip and Sylvest's disease.

Gregster Living within your means...a very tough lesson to learn when suddenly it's not a choice but a necessity....i've shed many a frustrated tear when i feel my body is letting me down and making me slow up! I had a thought last night, probably you know this already, but it helps to take prednisolone in the morning to avoid the insomnia it can cause. And I would be concerned about not taking deep enough breaths, run it past your doctors, i would be concerned about developing infections by not clearing your lungs...not easy when it's so painful to do. Barbara Thanks for asking, the job is going ok...i'm pretty tired though and have noticed that as the weeks go by and the tiredness mounts, i'm getting bad tempered with my nearest and dearest. I love the work, but struggle with everything else that needs doing around the house when I get home. My daughter is home for the summer from University and is a great help...i'm going to miss her when she goes back. We are having hot dry weather here in the UK at the moment, which can make me feel more breathless, I guess it's even hotter with you? I'm on the same regime as you, I take 5mg prednisolone and 200mg imuran at the moment. I don't think the imuran is working though, as my symptoms have got worse as the pred has been reduced. Doctors are talking about changing me to mycophenolate (Cellcept). My imuran was increased from 150mg to 200mg two months ago and the increase has made me feel really nauseous. Really glad to hear that you are feeling so much better, it's scary and frustrating waiting to feel improvement. Take care Alison

Alison, I am glad you are able to work. Sometimes just being able to do something is a great accomplishment. Since my "episode" I am a little different. I think what if...I would have past on, thank you Lord for saving me, what would I have left behind. The scary thing to answer was last impressions, so now I am very careful to not ruffle feathers so to speak and you never know when it will be your last whatever. It was 90 plus everyday last week and high humidity, I was house bound. Today it is 88 but must less humidity. I find I need to us ethe oxygen much more although today I was OK for a while without. enjoy your day and your daughter being home. Stay cool. Barbara

Barbara - Without prying, how recent was that "episode" that put you in mind of these dire possibilities? And was it strictly a breathing crisis, or were other effects of the myositis also working against you then? My impression from symptoms and from talking with my doctor is that the "secondary" pneumonia I have is not the worst I should fear, if I were to make a list of all the myositis potential effects and all the prednisone "side-"effects. In fact, "breathing crisis" didn't even come up when I was being forewarned. But I see you have oxygen handy, so I have to assume your situation is focused on the lungs, or am I just foolishly assuming...? Alison - Thanks, yeah, I've moved to taking all 60 mg. first thing in the morning, and it might have helped a little, but being kind of keyed up and un-sleepy till maybe 1 or 2 am seems to hanging in as a pattern. But these "patterns" don't seem terribly fixed (yet), anyway. And the medication is not constant either, since I was taking an anti-fungal 10 days for a Thrush infection in my throat through last Friday, and an antibiotic (also 10 days) for the lung congestion starting last Wednesday (which wasn't super painful till last Friday's totally sleepless night). Those other meds you mention are steroid-sparing therapies, so you can hold down the sterioid dosage to a nice low level? Interesting to hear how badly some of them deliver relief... Both of you guys seem so brave, I can't believe the perseverence you're both showing, in the face of what sounds like pretty long-term adversity. Are there helpful partners seconding the motion of your spirits? (I've got a really supportive wife who is growing alarmed at how fast things can go south, symptom-wise.) Greg

Okay I think I have some apologizing to do, simply for not carefully reading what has preceded, in all the notes from you guys, Julia and Cathy and Barbara and Alison, I could have answered a lot of my questions to you by just reading what you wrote earlier. Barbara, why exactly did you do the "crash" reduction in Prednisone so rapidly after that sinus infection and ICU experience? Generally the tapering off is much more gradual, right? But I can relate to the "whirly mind" and sleeplessness angles, and the other deeply annoying side-effects of the Prednisone, and I'm happy you've stabilized as much as it seems you have, despite the need for the O2 bottle handy. I didn't know anyone took as much as 80 mg. of Prednisone, by the way, that seems really really high as a dosage. The figures on anti-OJ, which turned up in my serology, are very very rare I'm told within the myositis community -- my rheumatologist specializes in myositis at Hospital for Special Surgery of Cornell-Weill Medical School in NYC, inheriting the practice of his mentor, Dr. Kagan, a few years ago, and I think I'm his only anti-OJ. Anti-synthetase is the only other diagnostic term he's used with me so far, and "interstitial lung disease" hasn't come up at all in our exams or discussions, but there's pathology still incomplete from a (shoulder) biopsy I had more than a month ago -- it's summer vacation time on the Eastern seaboard, and all my rheumatologist has had so far from the team of two collaborating pathologists is a phone call with preliminary findings, which with the myositis panel of blood-work was enough to start Prednisone, to treat an emaciated and large-muscle-weakened me. Thank goodness. It was the first effective treatment for anything, including the "secondary" pneumonia, that I received since falling ill at the end of February. Four months of unrelieved low-grade fever, rheumatic aches, and pulmonary function loss with a touch of asthma. I'm convinced I had a tick bite back in February, but Lyme tests came in negative and two rounds of Doxycyclene did absolutely nothing for me (started mid-April to "clear up" a pneumonia which had no cough associated whatsoever, only a mucus flow that wouldn't stop, copious and not a friend to a windpipe into which virtually every morsel I ate and drop I drank threatened to fall). For a while, my pulmonologist believed the pneumonia to be aspirating, since I experienced increased difficulty swallowing as early as the end of March, but by May when my g.p. had handed me off to him, the pulmonologist -- seeing how little improved I was with Doxycyclene -- started seriously considering other sources for the persistent pneumonia, ending up tentatively with myositis and handing me off in turn to the rheumatologist (after a third antibiotic round, Levaquin in that instance, just as ineffective as Doxycyclene had been). Only the Prednisone actually gave relief, immediately banishing the low-grade fever and lowering my 'CK' level -- a marker for muscle tissue damage -- 60% in a mere ten days. Yay, rheumatologist! In mid-August, after my daughter's wedding in Owego, I'm scheduled to start intravenous immunoglobulin infusion treatment, which if I tolerate it and it proves beneficial, will allow me to taper off some portion of the 60 mg. steroid dosage, maybe to 40 at first. For now, I'm hoping to have enough energy and confidence to attend the wedding and cope with friends and relatives all of whom are used to a fitter version of the Gregster. At least my daughter is super-happy, absolutely in love, and the groom is just as smitten with her, and my wife and I are trying not to be too coldly practical about practicalities, as it were. *sigh*

To Kelly and Mary - So much useful information, and so much bravery. It's very helpful listening to you guys. I'm reading your postings, slowly getting my arms around all this information, and grooving on all your good-hearted vibe. I think I'm much older than most or all of you, 71, and going through any of this with "real" responsibilities is something I can barely imagine. You are all heroes. Kelly, that summary of the "types" of anti-synthetase is useful, I hadn't seen any such listing of the different kinds, and now I'm totally confused because you mention the syndrome as rare with myositis but I had no idea it occurred without myositis. So anti-synthetase is not merely a subordinate category within the broader myositis diagnosis? That's how I had understood its meaning. Wrong, eh? Greg

Hi Gregster, amazing the information this little website holds. The reason for the severe drop , which I hope I nor anyone else ever has to do, was because I have taken steroids for 18 years and they[ all 4 of the doctors I was seeing which are not my normal doctors] and my normal doctors want we off of it. My normal doctors would never have droppped my prednisone that way so they tell me. I did live through it with no ill effects. The reason for the high dose was my sed rate was extremely high during my "SPA" stay and after a week on high dose it dropped to 59. Sed rate implies the amount of inflamation in your body. Sed rate is in low twenties now and I do much better. I use the Oxygen not for the interstitial lung disease or my PL12 antisynthetase syndrome but because I have been blessed to have Pulmonary Hypertension as well. I am blessed to be alive and enjoy everyday I have adn try to deal with my fears. Get well and enjoy your daughters wedding. I have been blessed with 3 grandkids. Jacob ,one; CJ; 8 months and Leila 1 and 1/2 months. 2 boys and a girl. A whole new lease on life for me. Enjoy your day. Barbara

Hi All I was diagnosed with SLE and Scleroderma the only antibody i've ever tested positive for recently was PL7. So now they say I also have antisythetase disease. They call this overlap syndrome I'm beginning to think maybe thats what they call it when they really don't know. I've decided to focus less on a diagnosis and more on getting treatment for my symtoms. Top tip with the scarf thanks.The Body Shops Hemp Hand Cream is very good especially if you use the overnight gloves. Not very attractive but who cares and your hands are warm for once. Take Care Katrinax