I have a question I've been pondering and wonder if anyone knows the answer... Do you need a precipitating event (virus, bacteria, etc) to kick off an Antisynthetase attack of the lungs or can it just flare up on it's own and attack the lungs? I'm tapering off my immune suppressing medications for the first time since this all began 2 years ago. Trying to decide if I should stay on a low degree of immune suppression or wing it for awhile. I have the OJ subtype of antisynthetase which mainly attacks the lungs. Also, has anyone tried low-dose naltrexone to help keep their immune system soothed? Thanks for your input. Kelly

Hi Kelly, I have PL12 antisynthetase syndrome. Prior to 2009, my diagnosis was lupus, but I really did not fit the typical picture of lupus. I had more muscle pains and fevers and intercistial lung disease, and raynauds. I was initally diagnosed in 1992 and they say the hepatitis B vaccine was my trigger for the onset of my illness. I now have pulmonary hypertension as well. I see my cardio in two weeks and I will ask him his opinion and then the lung guy and rhematologist, I will seek their opinions as well. Hope all are well, Barbara

Thanks Barbara, I really appreciate you asking your different practitioners for me. I do have muscle weakness and pain, but nothing else expect for the rapid onset attacking the lungs two years ago. I think most of my muscle issues were first from the high dose steroids, and now it's from now being off the prednisone and trying to get my adrenals functioning properly. Then again, nobody really seems to know what's from what. But my main concern is trying to learn more about what the typical (if there is such a thing) disease pattern is for this variety of AS. I feel that would help me make treatment decisions for this next part of healing. kelly

sorry to hear other people are as confused as i am. have been diagnosed with the lung for 5 years now. just found out i have the anti synthetase syn/ dematamyositis/ with the lung involment also. so many things other than what ive listed makes me want to scream much less the emontional aspects of it all. just to have someone say i will talk with you about it, makes me feel a lot better. ty donna fromva

please , does anyone know the life expecty. iam feeling closer to death than i have in the last 5 years. hope someone knows the answer. ty

How long will anyone live is a hard question to answer. I have no answer and the 4 doctors I have when I asked them , they all said they have no clue. I came close once but i am still here. I pray you will feel better soon. Barbara

ty barbbe. they gave me 6 years with my other diseases and that time is up. barbber i have been so sick i want to die. i want to have all this pain gone. 15 drs app. or test a month no time with my husband we are married to my illness, and neither us know what to do, or what we want to so. every day he is off work is used up with my medical stuff. i need to know this, i dont know when this stuff kicks in, with ra, fibromyalgia a-vascular necroisand the neruphoty not spelled right,,a few more things i dont know which way to turn, if you have any suggestions please let me know yu

Nanasix, It is hard to manage a chronic illness that defies being controlled. I know so very little about this antisynthetase syndrome and I do not think my doctors know an awful lot about it. But I do wish it would go away. I pray better days are ahead. That all you testing and doctors appointments give your doctors the knowledge they need to treat you and you have a comfortable life.

i know that. i think that is most of my depression.ty for trying to help me. what really made thins worst was when i went to my pain doctor last friday, i tested positve to oxycotin, i dont know a darn thing about that drug, but he didnt believe me. he said he didnt know me well enough. i have been going to him 6 months. man did that make me hypervenalate not spelled right, but i hope you can understand. its been 4 days a go and iam still fighting panit attachs.its not that i tested positive, i know i havent touched the stuff its the trust thing. i want ever trust him again. we were in the hall way and the nurse came up and said that person he was going to see was postive also. he said no he new her and she wouldnt do that. i am crushed because i wouldnt either. my family says he was doing his job. but that isnt enough for me here i go again , iam wrong. i have been so wrong about my health that i just dont want to be here any more iam tired of fighting.ty for your empathy. iam greatful to u.ty again.

found out monday my oxygen was so low that they were amazed i was walking. they turneand have i have to have it 24 -7. the depression has let up a lot. i seem to be able to handle things better. my plumary doctor was very concered, so much that he sent a practioner to my home wed. just to check my oxygen. wow that was not like him.any one else have such ups and down, dangerously low? please let. me know. ty for helping me when i was so low.

well found out monday that my oygen was so low, they were a mazed i was still walking, and the wouldnt

I am fairly newly diagnosed with AS w/ polymyositis, inflammatory arthiritis, reynauds, intersistial lung, dvt, etc. I spent 4 months in the hospital when my lungs collapsed and was on the transplant list, I've been out for nearly 6 months. I was diagnosed after being misdiagnosed for sometime. I also just recently was taken off oxygen, but my lung volumes are still only 51%. I also had a hard time getting back to walking again, I was in a wheelchair and still need to use a walker at times. I'm also curious about the life expectancy issue. It's something I am afraid to ask my doctors because I am 30 yrs old and have an 8 yr old son. At one time they said 5 yrs, but I wasn't breathing on my own at that time. I already lost my fiance to this disease (he left me for a healthier version). Like I said I'm young and curious as to how this is going to effect me, like I said I've been through a lot in the past year, including cervical cancer last month. Any advice?

Hi - I am new to your group - To KellyB - I take Pentamadine Inhalation 300mg monthly at my hospital for my lungs to help prevent me from getting the interstitial lung disease. I had BOOP in 2009 - was on the ventilator - amazingly recovered from it - and have been on the Pentamadine ever since. My last CT showed my lungs are perfectly clear and I was even on a lung transplant list. Hope this may help. Joanie

I have been wondering my self about how long I have. I'm 33 and have had this for the last 5 years. I am lucky and it is at the start of the disease. I am concerened because I have an 8 year old. I'm taking a combination of drugs, Hydroxychloriquine, Azathioprine, NAC, Calcium with Vitamin D, Ventolin HFA, Flovent HFA. I'm hoping to stay in remission. I was declared in remission in December when my lungs stopped losing volume at 68%. I was however diagnosed with Asthma in February. Be very careful whith prednisone. I have Osteopenia of -1.6 in the hip. A -2,5 and higher is osteoporosis. I go for my physical ih July. What I don't understand is why I have all this joint pain on all this medication to prevent my immune system to attack my body. I was a normal healthy 28 year old five years ago and now I don't have a lot of energy. I have applied for disability and because I don't use oxygen and I'm not in a wheel chair, I can't get approved. I am dealing with this on my own. I pray when I get feeling low. I also have a good cry and ask why me. Jen

hi catsgood to meet you. iam probally the last person to be giving advice but i will try,im on a roller coaster too. i know now more than 3 days ago. my doc. at duke uv, want my immune system asp. i have the jo-1 type also, attaches muscels, im lossing controll of them fast, thats why they want it stopped now, my lungs are also being attached even faster, i think iam breathing at 20 per cent, cant do a lot but i try. its a battle every minute but i have found comfort in this web cite. i dont have any answers but just letting how my doc, are treating me. i have to to both unv. on the 7-8th of july. i will let every one know what they are doing. as for now do the things that brings you comfort. we wii find some pease talking to people who have the same thing. good. wish me look for getting some new info.talk to u latter!