I have been recently diagnosed with Antisynthetase Syndrome after being referred to a Rheumatologist suffering painful hands in very cold weather (Raynauds). I have no other apparent symptoms. Blood tests indicated muscle inflammation and the presence of Jo-1 antibodies. My Rheumatologist has requested respiratory function tests, but at this point in time does not seem overly concerned. Having read as much as I can in relation to Antisynthetase Syndrome, I have more questions than answers, and am extremely daunted at the impact of this disease and unsure as to what if any disease progression will occur in my case.

Hi Aggie. I am sorry to hear of your diagnosis, however, you can definately live with this illness. Although there does seem to be some general consistencies between us all, Antisynthetase presents and progresses different in all of us. I for one have the Polimyositis and ILD (interstitial lung disease), but no other noticable issues at this point. I have been living with this for 2 1/2 yrs now, and am doing quite well considering where I started.I take immunosuppressant medication, as well as regular infusions of IVIG and Rituximab. Although I am now permanently retired (at 47 trs old) due to this, life is actually pretty good. For most of us, we can do most things, but need to monitor ourselves. Rest when we need it, be much more careful around other sick people (infections can really put us down), and try to keep the stress levels down as much as possible. I really do hope you have now respiratory issues, but it is wise to monitor it. A high number of Jo-1 positive patients end up getting ILD at some point in the progression of the disease. Early intervention seems to be the key to keeping it's impact to a minimal. It sounds like they have caught this rather early in it's progression, and you should have a good chance at a fairly normal life. This is a great place to ask questions. What type of medications have you been put on, and are you seeing an improvement yet? Take care, and God Bless. Wayne

Hi Wayne, thank you for your comments. I am not on any medication at the moment. I am hoping that the lung function tests will be fine, I am fairly active and havent noticed any issues with breathing etc. My rheumatologist will see me again next May unless I have any other issues which would require the appointment to be brought forward. Thank you again, it's reassuring to learn that this is manageable.

Angie you are indeed lucky that the disease was caught early. I am on the other spectrum and was caught (due to the lack of help of a GP) by a Rhuemy when it was almost too late. I have Anti Jo 1 Synthetase Syndrome, ILD, DM and now Severe Osteoporosis due to levels of Prednisone. I spent 9 months in hospital with a month of that in ICU on a BiPap machine with a small percentage of survival. I have been out of hospital now for 18months and have returned to work in a graduated position, mainly due to my lung disease. I had great doctors in the hospital but my GP did not listen and took too long to seek help for me. I have been told that if I'd been sent to hospital or referred about 10 days earlier I would have little to no Lung disease. I hope your lung function tests go well but just be aware that if you start having shortness of breath you must seek help immediately. My shortness of breath started around mid April and I was admitted to hospital mid June, so that's how fast it can manifest. Good Luck with everything and it sounds like your in good hands. Lisa (Australia)

Aggie, I'm glad you found your way to this website. This news must be a huge shock and if you've been reading what limited research that's out there, I know why you feel like your world has been or might be turned upside down. Wayne is right - early intervention is the key and this site is a great source for information. I've been dealing with AS for almost 5 years (mine was discovered due to loss of lung function and fatigue but no other typical symptoms. I have the OJ subtype.) Continue to gather information like the lung function tests. It's a beautiful thing to catch it early as it's more likely to remain under control and managable if you can treat it rapidly should other symptoms arise. Pay attention to your body and trust yourself on what's normal for you and what's not. If you feel your body is more tired than usual or having odd responses/changes that don't feel right, be assertive about seeing your doc (even if it hasn't been six months.) Luckily your immune system hasn't gone totally wacky and the more you can do keep it functioning properly, the better chances of keeping this AS in line. Have you found any other patients also in Australia? I wonder if there's a specialist who sees them. Does your doc have any other patients with AS? Took me a long time to find a team of docs that had worked with AS patients but it was worth it. Be gentle with yourself as you absorb all this information. It will take awhile to integrate it into your life. The folks on this site have been invaluable in helping me both manage AS and also not feel so alone. It's an unexpected journey no one ever wants to take - rely on this community to help you get through it. My best to you. Kelly

Thank you all for your comments and well wishes. I see you are in Australia too Lisa. I dont yet know of any others in Australia who have AS or of any doctors etc who may specialise in this area. I only found out last Friday after seeing the Rhuematologist for my blood test results. He told me I had a 'funny marker' Anti-Jo1 and Antisynthetase, and explained the difference between primary and secondary Raynauds. He said that the muscle inflammation in my blood work could be from exercising prior to the blood test and that the Anti-Jo1 might be a 'red-herring'. He's ordered similar blood tests to be conducted prior to my next appointment in May (abstaining from exercise for a few days prior), and in the meantime the lung function tests. Durng both consultations he has told me not to inform work at this time. I have no idea if he's currently treating anyone else with this condition. Since looking into what it all means, I now obviously have many questions for him at my next appointment - and am really not sure whether his comment about 'the presence of Jo-1 antibodies being a 'red herring' was appropriate. Its difficult to contemplate informing my family when I really know so little myself about AS or how it may impact my life, and even I guess the apparent lack of concern in relation to the potential seriousness of AS by the Rhuematologist. I dont even know where to begin in explaining any of this without worrying them, especially with so much unknown. Thank you again, everything I've read on this site so far has been really helpful.

Abbie what state do you live in? If you are in Brisbane my specialist is fantastic. I am concerned that he is so relaxed about you having the Jo 1 antibody as approximately 90% of patients with the antibody get Lung Disease. I would be very concerned about his comment and the fact that your muscle inflammation was from exercise. I ended up nearly dying from stupid comments and a laid back attitude from a stupid GP. I am very concerned for you due to my own experience. Let me know and if you aren't happy and don't live in Brisbane I am happy to ask my specialist(who is unfortunately overseas for 3 weeks) for a name of a good specialist for you.

Sorry spell check changed your name Aggie

Aggie, That ´red herring´comment is odd. My understanding of autoimmune bloodwork is that it's either positive, negative or what they call 'equivocal." My lay person understanding is that if it was equivocal, there's a chance you could test negative next time. Request a copy of the blood work results and also see if they typed which Antisynthetase autoantibody you tested positive for. (such as Jo-1, PL-7, OJ, etc.) It is possible for people to test positive for autoimmune disorders without having any symptoms. Levels of muscle inflammation as a guideline for diagnosis can be tricky. Mine were completely normal the first three years as it had only attacked my lungs up until then. Even then, they weren't skyrocketing high like some folks but they were high for me. Do you have to wait 6 months before you can ask your doc more questions? That would be a long time for you to worry about all this. It's hard to share with your family when you can barely make sense of it for yourself. I know I always want to protect my loved ones from worrying unnecessarily. But I do recommend sharing it with the key members of your support system. Carrying these concerns by yourself is a stressor and having their love and support will help you through. Kelly

Aggie, I'm so glad Lisa/Alexgirl is on here. She will be a great resource for you. Also, here's one of the best articles I've seen on AS. Take a copy to your doctor's office as it's fairly new. Posted by the Cleveland Clinic, it's well detailed and a good primer for docs and patients about this syndrome. http://171.66.127.177/content/80/10/655.full

Aggie. I totally agree with the others. It is very disconcerting that your doctor is taking this so lightly. From my understanding, if you have the particular antibodies, you have Antisynthetase. period! It does manifest itself with many different symptons and levels, however it is there. Do you know the CK (muscle enzyme) levels. Here in Canada where I live, normal levels are between 0-150 exercise can make it go up, but usually to maybe 300. When I was diagnosed it was around 3500. you should get your results and look for yourself. One thing about this disease is that it can happen fast and furious. You want to stay on top of thingsEarly intervention, and regular monitoring is important to keep it to a minimal. Remember, you are the only one who knows your body, and when changes occur, get them checked.. Keep up the good fight, and God Bless. Wayne

Wayne what sensible and great advice! I wish someone had spoken to me like them when I was suffering my acute onset of Anti Jo 1 Synthetase Syndrome. If I had have, I would not have lung disease and a very different life. Your advice to Aggie is great because you are correct in saying we are the only ones who know our bodies. I know everyday when something know came along I was getting sicker and sicker and something was very wrong. I was also, assured that the GP I was seeing was good but now I have a report from a GP Specialist who is on the Australian Board of GP's that his actions were negligible. I currently am following this up. Aggie please listen to everyone's advice as it is excellent and also heartfelt based on experiences.

Kelly you are right that Article is great and well worth a read. I am on a closed page on Facebook for Dermatomyositis but I think there's only 1 or 2 others with ASS. This unfortunately doesn't help with support and information as I tend to get a little cranky with people complaining about having only the rash of DM and nothing else. They give advice to others on very strict diets without knowing the severity of their case. Aggie I worry about you not being on any medication yet and find that very strange as your Inflammation indicators are high and you have tested positive to Anti Synthetase Syndrome. Kelly is definitely right about determining which antibody you are positive for. I am on many drugs and also currently have shingles which is another thing to deal with. I did have a very serious and possibly terminal infection but thanks to my medication specialist I was given IV drugs and a seriously high dose of other antibiotics and thankfully it was stalled except for some very nasty scars from the skin infections. I was on supplemental oxygen when I first left hospital at 6 Lpm and after numerous returns to hospital I left on 4Lpm. Now after 18months I require oxygen when doing intensive housework - vacuuming, washing floors, sweeping, fixing the pool filter and various other things. I cannot fly without oxygen and am not allowed to fly further than 3 hours or I must inject myself with klexaine (sorry spelling) due to severe DVT whilst in ICU. Aggie I am happy to answer any questions if I can but read that article as it is very good.

Lisa, I'm in Melbourne. Thank you all again for your advice. I'll definitely be requesting copies of my blood results asap.

Aggie I was in Melbourne in January and my specialist rang another specialist at the Royal Melbourne Hospital but all I can remember her name was Kate ....... She is most likely an immunologist as is my specialist. If you are interested I can ask him when he returns from overseas just let me know. He gave her my history so if anything went wrong in the two weeks I was there she would handle it.

Aggie, I hope we've given you more information rather than worked you up into a panic. Take a moment with it all and know that you're in great shape to deal with this. The power of this site is that it is a gathering of our collective knowledge/experience. That is the most valuable data that exists on this disease. It is my prayer that our experience and hindsight can help keep you well. One other bit of advice - if you haven't already. start a notebook and take it with you to all your appointments. It will give you a place to track your questions, test results, symptoms and medications (if any). Over time it will be a good tool for helping you track and protect your health. I'd tell you to get lots of sleep too but then again, it's 2:15 am and I'm up! kelly

Lisa, that would be great if you could obtain those details.

Kelly what great advice about the book I wished I'd had one for my results but I do write notes before my specialist visits. Aggie I will definitely ask David when he comes back. I hope I didn't frighten you as it was not my intention, I suppose I just get scared when I hear someone getting what I got and I pray they just don't need to go through what I did. I will keep in touch and get you that name as soon as I can. Lisa

Hi, I'm a new member, diagnosed about six weeks ago with UCTD. I have Jo1 and low complement levels. My muscle enzymes are not elevated, yet I have had progressive leg weakness since May. I recently started having arm weakness too. My rheumatologist ordered a lung scan after the Jo1 result came in. I don't have ILD, but I have some volume loss and mucus problems. I've had shortness of breath since May. I started seeing a pulmonologist, who performed a PFT. I was at 76%. He put me on a Dulera inhaler and said I need to find a different rheumatologist. He said I don't need to have ILD in order to be diagnosed with ASS. My rheumatologist says ILD is required to make the diagnosis. I have joint pains/swelling/redness, Raynauds, and shortness of breath. The skin on my hands cracks; I've started having episodes of petechiae on my hands after swelling. Does anybody have these symptoms? I'm concerned about not being on anything other than the Dulera. My rheumatologist is "watching and waiting," but she did acknowledge earlier this month that my legs were getting weaker (after seeing how difficult it was for me to get out of a chair). I'm seeing her again in mid-December. I don't want unnecessary treatment, but I'm worried about how much my daily functioning has changed since May. I have a young son and worry about taking care of him. Thank you for your help.

Kristen, I'm sorry you're going through all this. It's so much, especially with young children. Mine were 3 and 7 when I was diagnosed and it was a huge jolt for all of us. The tricky thing about AS is that it is a wide ranging syndrome and it can manifest itself in all sorts of patterns. ILD is not needed for a diagnosis - only that you test positive for one of the Antisynthetase autoantibodies (anti-jo1 is the most common). The fact that you are having all these symptoms tells me that you need some sort of immune suppressing/modulating medication. Your pulmonologist is right...you need a new Rheum. Preferably one who has had other AS or myositis patients. Are you anywhere near Stanford or UCSF? There are some good folks there. Push them to treat you now. If they want to wait, find a new doc. It is much better to prevent loss of lung function and muscle strength than try to recover from it. Even a low dose of prednisone to see how you respond. It's hard to advocate for yourself when you both feeling lousy and docs don't take it seriously. It takes a lot of energy. DO you have someone who can help advocate for you? Kelly

Kristen. I am very sorry to hear that you are having to go through this. Kelly is right. If you test positive, you have ASS. there are many symptons of this sisease, and everyone is different in the ones they get. The cracking hands sounds like it could be mechanics hands, a common symptom of ASS. I do know that muscle enzyme levels do not have to be elevated for there to be muscle damage/weakness. Also, just for your information, ILD can be hard to diagnos. It does not require scarring of the lungs, which is what most doctors look for. I have ILD, and (Thank God) my current scans actually look normal, and I have a 78% capacity at this point. Without regular monitoring, it could get out of hand very quickly. You need to be firm with your doctors, and be "absolutely sure" of what you are dealing with. If it is ASS, then you need to get on it early. I also agree that you need an advocate. Have someone to come to appointments with you, and some who is willing to speak up both with you, and for you. I do not go to any appointments, treatments etc. without my wife being there. She will speak out when I can't or don't. I am still here, partly because of her not willing to let me go without a fight. I hope you get the answers you need, and start feeling better very soon. Keep up the good fight, and God Bless Wayne

Sorry, forgot to mention. If you can, I would suggest a muscle biopsy. It will determine if in fact the myositis is present. Take care Wayne

Hi Aggie and Kristen, I also am sorry to hear about your diagnosese. I have been working with this coming up on 4 years now. I called my GP with a complaint about loss of strength in my arms and about my hands (finger tips mostly) cracking and bleeding. He sent me to a rheumatologist who I love, and who took one look at my hands and said she thought she knew what it was, but wanted to do a blood test. The blood test confirmed AS with Anti-Jo1 and she sent me to a pulmonary doctor. He discovered the ILD. Over the last 2 years with the help of meds, I have been able to increase my lung functions and my PFT's have been reading better each time. For my hands, which were horrible with "Mechanic's Hands", my rheumatologist prescribed dapsone. This is a drug that is used for people with leporsy, by has worked wonders on my hands along with a cream that I use called O'Keeffe's Working Hands. Between these two things, I almost never have any problems with my hands any more. Keep asking questions, and if you don't like the answers, find a different doctor. Your health is very important, mostly to you, but to your family as well. I keep us all in my prayers daily. Terry

Hi Kelly, Wayne, and Terry, Thank you for your responses. I really appreciate the information and kind words. I saw my pulmonologist again today. He did two brief tests. He has referred me to another rheumatologist, and I'm trying to get in to see her. I'm a Stanford patient and have a young rheumatologist. I actually like her and feel the issue is that she's inexperienced. She did call me today to ask me to come in next Monday. I'm having an MRI Wednesday to look for muscle inflammation. She did say a muscle biopsy will probably be necessary. I'd like to ask about the arm weakness others experience. Mine manifests as fatigue after simple things like holding the steering wheel, typing on the laptop, or lying in bed holding my cell phone so I can read email. I've never had this before. My leg weakness is clearer, such as difficulty walking upstairs, difficulty kneeling, etc. The pulmonologist (who's in private practice across the street from Stanford) said today he feels angst that I'm not getting treatment. I brought a research paper I found that has a table with the proposed criteria for ASS diagnosis: number 1 is a positive antibody test. Then it says ONE or more of the following: myositis, ILD, Raynaud's, mechanic's hands, arthralgia (I think that's everything). The doctor said he's not an expert in ASS, but he agreed. He also said, just like you did Wayne, that ILD does not always show up on CT scans and that there are many forms of ILD. He said I clearly have a problem that needs to be addressed. Thank you all, too, for the suggestion to have an advocate. I try to bring my husband as often as he's available. I've been seeing a neurologist since June, who originally said I had transverse myelitis. She kept saying if I could just "avoid stress" and have fun for a couple of months, I would get better. After the Jo1 test results and the low complement levels, she changed her advice and then said I need to go through the five stages of grief, because life as I knew it has permanently changed. My husband was offended and asked about seeing another rheumatologist -- and the neurologist told him he was "stuck in the bargaining stage, thinking a different doctor will give a better outcome." I can accept a change, and that's not my problem. My problem is worrying more damage is occurring while I'm still only on the lung drug. What is the muscle biopsy like? The rheumatologist said I'd have to have it done in an OR. I didn't realize it is a surgical procedure. I hope everyone has had a good day. Thank you again. Kristen

Kristen, So glad you're at Stanford. Now to get you to the right doc, or get your rheum up to speed on AS! Give your doc this article from the Cleveland Clinic. It will help. http://171.66.127.177/content/80/10/655.full The arm weakness is exactly as you described! It's all those odd things like carrying in a bag of groceries and then not having your hand work the rest of the day or being unable to hold a cup of coffee as you walk home four blocks. Dropping things a lot, not able to open jars, having a hard time gripping door knobs, especially in the morning. And it's symmetrical too. I even had to get a different leash for the dog to attach to my waist. (I can tell you that all that has greatly decreased and my strength greatly improved with treatment.) For a long time my docs kept saying it must not be from the AS as their belief was it only affected the large muscles of the hips, legs, etc. It finally took an MRI (which found the inflammation) and they used that to guide the biopsy. The biopsy was done on my forearm as a day surgery. I had them do a nerve block and heavy sedation as my lungs don't tolerate general anesthesia well. My arm was totally useless for 24 hrs and my incision is about an inch long. It was worth it to get the definitive myositis diagnosis. It might be a good thing you're not yet on immune suppressing meds as they can and will reduce the muscle inflammation and thus sometimes the muscle biopsy comes back inconclusive. But hopefully they will get you on something soon. I know it's the holiday season but stay on them to get you through all these tests and procedures as quickly as possible. By the way, if they suggest an EMG to test your muscle weakness and nerve conductivity, say no. It doesn't pick up this type of inflammation and the test on my list of "I won't do that again" procedures. MRI is the way to go. I seem to remember having a conversation with another Rareshare member about docs at Stanford. I'll see if I can find it and post it. Your docs can also consult the myositis clinic at Johns Hopkins in Baltimore. They have a team of pulms and rheums that focus on this group of autoimmune diseases. They have been helpful to my team. It's a tricky battle of getting them to pay urgent attention to you without being hospitalized, getting the right diagnosis, and not getting worse. Sounds like you're doing a good job advocating and navigating this crazy system.

Kristen, If you read through the section titled "tacrolimus/prograf" you'll see a conversation between Lhasa (Bev) and I on the doctors at Stanford and UCSF. Her husband has AS and she is a nurse. She has some really valuable things to say about the docs and maybe that will help you and your team. Kelly

Kelly I had problems with my arms too such as, brushing, shampooing, blow drying my hair. I had major pain in my arms. I did not have to have a muscle biopsy as my specialist just made the diagnosis without it. I think that was due to the fact my lung capacity dropped from 90 down to 60 something and that was their priority. TBear 73 I was also put on Dapsone but had to come off as I had a reaction to it and all of my Neutrophils vanished and I went from 21 to .01 in five days whilst I was in Rehab. So I was isolated and sent back to my main hospital back under my specialist. Keep us up to date :-)

Alex, I also have a mild reaction to dapsone. I get pimples on the left side of my torso from it. But I have had a lifetime allergy to sulfa drugs, and that is the reaction I've always had. The zits are unsightly, but not usually painful, so I put up with them. I can keep them covered, and nobody by me and my husband (and my doctors) know about them. I type for a living, so I can put up with that to keep my hands functional. Kristen, I didn't need a muscle biopsy as my rheum. pretty much knew what was going on. If you can find the cream for your hands, use it. I can still just run water on my hands and have them turn out like sandpaper. Then I use O'Keeffe's and that goes away. It's fantastic. Also, my rheum. told me that stress is not a factor for AS like it is for things like Lupus, so worry when you have to, but remember that there is help out there for you. You have caught this early, and I do most everything I want to do, including climbing a ladder and decorating the yard for Christmas. I have arthitis on top of all the other inflamation and before I was put on anti-inflammatories, I was taking Aleve and it helped quite a bit. My doctor didn't prescribe anything for me until the Aleve quite working on its own. Keep fighting, keep asking questions. Don't take anything that you are told at face value. Did deep to get the whole story. Don't go blindly into anything. Research, ask questions, and never give up. I have taken the attitude that something is going to kill us all. I'm one of the foturnate ones, I know that my lungs will kill me. But not before I'm ready to let them. Pray every day. Give thanks for all the little things in your life. Keep your family informed. And know that we all have your back. Terry

Hi All. tdear, I pretty much agree with everything you have said, except the stress. My neurologist has told my that stress in in fact an issue with Antisynthetase. Also, new research is showing that most of the autoimmune diseases have stress as a key factor. I personally get flare ups that are directly related/due to the stresses in my life. the more stressed I am, the weaker my muscles are, and the more difficult my breating gets. I would advise to try to get stress levels to a minimum. As tbear said though, attitude is a big factor. don't sweat the small stuff. Keep up the good fight, and God Bless.. Wayne

Hi everyone, Thanks for all the great suggestions. I had my pelvic MRI this morning. My rheumatologist already called to say it didn't show any inflammation. My arms have gotten weaker every day. The arm weakness only started two weeks ago. The rheumatologist prescribed 20 mg prednisone yesterday, after talking to me and to the pulmonologist (I had seen him again Monday, and he was very worried). Has anyone had a normal MRI? The current plan is to see if my neurologist can do EMG or other testing to show muscle inflammation in my arms, which would make a biopsy unnecessary. But I had an EMG on my legs a few months ago, and it didn't show anything other than an L5 radiculopathy on one side (and, yes, that was very painful). From what I've read here, some of you have rheumatologists who feel confident making the diagnosis without having tests as "proof." Mine isn't one of them (maybe because she's so young?). Just typing this message has made my arms feel so tired. Thank you all so much, Kristen

Hi Kristen. You are absolutely correct. Every doctor has their own criteria, and test requirements for diagnosing this. When I first got sick, I had blood tests for the antibodies, EMG to determine the muscle involvement, muscle biopsy to prove type of muscle involvement, X-rays, MRI and CT scans for ILD. They refused to do a lung biopsy, as they felt it would do uneeded damage to the lungs, and the course of treatment would remain the same. My treatments have been equally individualized. I will tell you that due to the nature of this disease, tests done even a few weeks apart can show significant differences, both on progression, and healing. I like the fact that your Rheumatologist is being thorough. I just wish they were quicker. I have a neurologist as my lead doctor, with a respirologist in second, who is also the main for the ILD part of the disease. I don't see a rheumatologist, as these other 2 have everything under control. As for the tired muscles, just rest them when they need rest. I have days when even stirring a pot for my wife makes my arms fatigued, and others where they seem like they can go forever...(although I don't push them.lol) Stay strong. Keep us up to date on how things are going. Keep up the good fight, and God Bless. Wayne

Hi Wayne, Thanks for your reply. You've been through so much. My rheumatologist consulted with my neurologist this week. My neurologist is very experienced. I will not be having a muscle biopsy, because the neurologist said it's not necessary. We know I have inflammation everywhere, and we should treat it now rather than chase positive test results. I'm very happy with that approach. The plan is to decrease the prednisone to 10 mg/day for now, and add methotrexate in a couple weeks. We will wean off the prednisone in a few months. Have you tried methotrexate? I read in a few papers online that it's not good for people with Jo1 because it can possibly damage the lungs. Finally, my pinky fingers have started to go off on their own. It didn't happen overnight, maybe over the past couple of months. It's really noticeable now. They are about 2 inches away from my ring fingers. It's worse on one side. Both doctors this week said it's probably from inflammation and will get better over time with the meds. But the rheumatologist has never seen it before. Do you have anything like it? The palm of my hand hurts under the pinky/ring finger area. The pinkies are weak now. :) This disease does strange things... Thanks, Wayne, and everybody! Kristen

Hi Kristen. I am so glad to hear that the doctors are taking the right approach. If they know what's happening, treat it now. Don't wait for more "confirmations". I am currently on methotrexate. I take 30mg / week, all on one day. I also take folic acid on the rest of those days, and the methotrexate can deplete it from the body. Yes, it could possibly do harm to the lungs of people who already have lung damage, however if you are regularly monitored, you would catch it before significant damge could occur. Unfortunately, we do not have alot of drug choices. I have been on it for over a year now, and only improvements... I was also on high doses of prednisone, but am now down to 2.5 mg a day, (and hopefully fully off it by Christmas) due ti regular infusions of Rituximad. I get 2 infusions of it every 6 months. I am also on infusions of Gammanex (previously Privigen) IVIG. I get 3 infusions over 3 days every 4 weeks. I can't tell you how much it has been a Godsend for me. It is what is keeping me walking. I have not personally experienced, or heard of the problems with your pinkies. however you are very correct. This disease can do alot of strange things to the muscles and joints. It can cause arthritis, which can manifest in many different ways. I am now getting a burning pain in my feet, mainly the toe area. They also get very cold (like ice to touch). Thankfully it mostly happens when I lay down....(although can make it harder to get to sleep some nights...lol Hopefully the meds will kick in and bring back your pinkies for you. Did they advise you to take your prednisone in the morning? I would advise it, as it can cause you to be unable to sleep.if you take it later in the day. We already have enough problems with having insomnia too...lol Good Luck, and I hope the meds work for you quickly, and effectively. Keep us up to date on your progress. Keep up the good fight, and God Bless. Wayne

Hi Everyone, I had my monthly IVIG today and all went well. Finally found a nurse who can cannulate and she is moving to North Queensland with her partner. I had a visit with my lung Specialist on Monday and he seems to think I have plateaued with my lungs. So I am sitting at 66% and that will be the best I can hope for. I also have to have a sleep test due to a few symptoms but I did say NO CPAP machine after being in ICU on a BiPap machine for a month. He did say if I do have sleep apnea there are other ways to deal with it. Wayne you are definitely right in your comment about earlier treatment. I had a. GP who thought I was just being a whinger and then it nearly became too late. Nine months in hospital and now severe lung disease and Osteoporosis. I hope he has a nice Christmas when his insurance company tells him how much I am suing him for. Maybe he'll feel guilty about not listening and pay what the lawyers suggest. Although, it won't change things but it will pay my mortgage. Aggie I have also found out the doctors name from Royal Melbourne Hospital her name is Dr. Kate Nicholls. I hope that helps.

Hello, I was diagnosed in Sept 2011. I started ivig 18 months ago. When I started my lung function was only 57%. I go every 3-6 months for pft's my lung function is now 98%!!!! There is hope:) I started on 60mg of prednisone but am now only on 10mg. Don't loose hope. I love ivig. I was on 5days straight a month then moved to 2days every 2 weeks thats when I saw the most improvement. I still have weakness but its nothing compared to where I started. I refuse emgs the one I had was so painful!!!! Are they that painful to everyone else???

Alexgirl...have u asked about getting more ivig? I get 7hr infusions 2 d days in a row every two weeks. Monthly may not be enough. It wasn't for me. I improved a lot after about 4 2 week infusions. The doctors couldn't believe my lung function had improved so much. They said I would be lucky to see 70%.

Hi Christy I am seeing specialist the end of January and I think I'll ask him because if I can get better lung function that would be great. Thanks Lisa

Take care and I wish you the best. I hope they will at least give it a try:)

Hi Alexgirl. I too was very much like the others. I was at 10% lung capacity when I was diagnosed. Doctors told my wife I would not survive the week. I was started on IVIG within 1 month of diagnosis and am now up to 78% (was 80 but slight relapse...lol) There is DEFINATELY hope!! It was the IVIG and prednisone that did it for me. It also is what keeps me walking without a cane. The sooner you can get on it, the better the outcome. I currently do 3 days infusion every 4 weeks. It seems to be holding me quite well. You would need to find your best dosing. IVIG normally lasts up to 4 weeks in your system, so I would not recommend any longer then that between treatments. If it works, it is usually (not always though) a lifetime treatment. I now have a permanent port in my chest to make it easier for the infusions. It was getting way to hard to find the viens in my arm. I wish you luck, and hope you can get this drug. at least to try it, and hopefully soon... Keep up the good fight, and God Bless Wayne

Hi Wayne, I currently have IVIG once a month but I have it for a few hours. I am wondering if I should get more to see if it makes more of a difference but I have let it run once or twice to 5 weeks and I was very tired. I am definitely going to speak to my specialist about a higher dosage. Have a Great Christmas. Lisa

Hi Lisa / Alexgirl, thank you again for the doctors details, very much appreciated. Rachel

Hi Everyone, There is very good article on the The Myositis Association page about AS. Have a read if you get the chance. Lisa

I posted here a month or so ago about my weak little fingers. My little fingers and ring fingers are numb most of the time, and my little fingers are weak. They have moved away from my ring fingers (told it was "ulnar drift" by one doctor). Now the palm of my hands have become numb and painful too. I can't repeat a motion such as using a fork or carrying a cup too long. I drop things or have other clumsy moments. I have numbness in my forearms, pain in my elbows, numbness in my shoulders. Since I've been on the 20mg prednisone and 500mg CellCept (three weeks now), my upper body weakness has improved. I saw my neurologist last week, who said people with connective tissue disorders are prone to nerve compression injuries. She said to try to sleep with my elbows extended. She said the ulnar nerve was compressed in both elbows. Has anyone had a similar experience? Did it go away on its own? I'm afraid that if I do "wait and see," my hands may have permanent nerve/muscle damage. At what point should patients start demanding an immediate evaluation for something? It's a fine line sometimes. Thanks!

Hi Kristen, I get a numb/tingly feeling in my hands quite often lately, especially if I am laying down with my hands holding a book on my abdomen, sometimes even when my hands/arms are not elevated above the rest of my body. More & more frequently I wake during the night with numbness/tingling in my arms/hands depending on how I've been positioned whilst asleep. I assume it is to do with having the Jo-1 antibody....

Hi Kristen, I get a numb/tingly feeling in my hands quite often lately, especially if I am laying down with my hands holding a book on my abdomen, sometimes even when my hands/arms are not elevated above the rest of my body. More & more frequently I wake during the night with numbness/tingling in my arms/hands depending on how I've been positioned whilst asleep. I assume it is to do with having the Jo-1 antibody....

Hi Aggie, That's exactly what I feel too. I'm sleeping badly and often awake overnight for 2-4 hours. The problem is the weird feelings in my hands and feet, the painful numbness/tingling/cramps. Has any doctor told you what to expect with Jo-1? You're new to the diagnosis, like me. My husband would like me to be evaluated at Johns Hopkins, but traveling across the country feels too difficult right now. Have a good day, Kristen

Hi All. I do not get the numbness/tingling in my hands much, but I do tend to get it in my feet. All the time!! It can get really bad at night when I try to go to bed. My feet will get ice cold, and very painful. can really make it difficult to try to sleep. have tried a heating pad for my feet, but with minimal effect. The one thing I have learned about ASS is that there are MANY different things that can happen. Some people have pain, while others don't. CK levels can vary immensely, as can muscle weakness, fatigue, lung issues etc. I have learned to expect the unexpected. I was on IVIG infusions using the brand Privigen. recently, every neurology patient was switched to Gamunex Brand. Was supposed to be "the same" product, just different manufacturer. Well, let me tell you it is not the same. I have a severe "crash" on the Gamunex after just a couple of infusions. ended up having to us a cane again, bairly able to make it upstairs in my home. Not fun. I am back on Privigen, and I think it is coming back. I have also have to go back up to 50mg prednisone/day to try to halt the relapse. Pay attention to your body. It will tell you when something is not right, and when it does, deal with it There is actually a fair amount of information out there on the web, you just have to keep searching, keep reading, and peice the information together from the many small articles out there. You are correct though Aggie, there are probably very few people in Australia with it. From all the information I have gathered, the actual cases seem to be somewhere around 1 in approx 5 million people. Some estimates say it may be 1 in about 250,000 people, but the actual cases don't even come close to that. I know in Canada, we have a population of approx 40 million people, and we can only confirm about 8-9 cases in the country. there is also the different forms of it, depending on polymyositis vs dermatomyositis, and lung involvement.. these 2 alone can very significantly on the prognosis and treatment. I hope you can get some answers, and have as normal a life as is possible with this. Keep up the good fight. God Bless. Wayne

I too have had issues with my hands and elbows, as well as ankles and feet. The most effective relief I got was from prescribed ani-inflamatories. I started out just taking over-the-counter Aleve, and it worked for several years. Then my rheum. dr. prescribed naproxen without the buffers that the otc meds have. When that stopped working she put me on mabumetone, and it has been doing great. So, I would say try an otc anti-inflamatory first, and see if it helps. DO NOT exceed the maximum daily dosages on the bottles. If you notice a good difference but it isn't taking care of it the way you had hoped it would, talk to your doctors about prescription strength meds. I haven't had to go to pain killers yet. We are all trying to hold off on that as long as possible. Good luck all, and I will keep praying for us all.

Kelly, I was rereading older replies to this topic and saw yours from a couple of months ago where you said an MRI led your doctors to see the inflammation and guided the muscle biopsy. Was the MRI of your forearm or just your hand? I'm having a hand MRI tomorrow and was curious. My little fingers have moved so far to the outside, away from the ring fingers. They have peripheral neuropathy but are also so weak. My middle fingers have moved right next to each other, especially on my left side (the side being imaged tomorrow). My index fingers are moving downward. It's all happening fast. The other problem is severe pain in my palms that limits what I can do with my hands. Maybe it's the reason my hands are so weak. My neurologist said last week the skin had "thickened." Then she ordered the MRI. Did you have palmar pain/weakness? It's hard to touch any fingertips to my thumb; hard to use narrow utensils like a knife or toothbrush; hard to carry things. Finally, a recent endoscopy showed stomach lining inflammation (now I'm on Prilosec), and today my annual eye exam came with a diagnosis of iritis. My eyes have felt dry for several months, and I've become sensitive to light at night. It feels like it never ends. Okay, I'll stop the pity party. :) Hope you're doing well, Kelly, and the same for everyone in this group. Kristen

Kristen, My prayers are with us all every day, but I'm saying a few more for you today. Keep talking to the doctors, make them listen to what you have to say, and keep fighting. We are all with you. Terry

Thanks, Terry! I had the hand MRI today. The technician asked me first which part of my hand hurt, telling me the whole hand was too large an area to image entirely! I wonder how they do abdomens then. :) I politely insisted he do the entire hand. My thoughts are with everyone in this group too. It's good to know we have each other. Hope everyone has a good night, Kristen

Kristen, just seeing your post now. Glad you pushed them to scan as much of the area as possible. And I hope it gives some helpful information. My MRI involved laying on my belly with arms outstretched above my head in the Superman position for the length of the scan. The comic nature of it helped me cope with the pain of the position. I believe they only did one arm, from elbow to fingertips, so we picked whichever side felt worst that day. My hands had lost nearly ALL strength and I was in tremendous pain. I couldn't turn a doorknob without wrapping it in a big towel to grip it and was constantly dropping things. Plus the sides of my fingers, hands and forearms ached constantly and were often numb and tingling. It was like a sudden case of severe carpel tunnel had descended upon me over a few weeks but equally in both arms. The MRI lit up in several areas and they used that to pick a big enough area in my forearm to biopsy. I guess it's hard to biopsy those delicate muscles unlike the big muscles of the shoulders or thighs. That biopsy gave me the dermatomyositis diagnosis - in addition to the AS. The good news is that I regained all function and strength once we altered my treatment. It does often feel like it's one thing after another to the point where my first reaction these days is usually to laugh because it is just so ridiculous. Case in point, I've spent the last five weeks home bound due to a severe case of the shingles. Oy! But heck, we're still here! I hope you get some answers soon. Keep me posted. Kelly

I live in Brisbane and am interested to find out who the best specialist is to treat this disease. My current one is great but am interested in any others that have perhaps had more time with this disease.

Lil dreamer, Sorry you're going through this damn AS. It can be a wild ride but there are some good resources in these pages. If you're on Facebook there is a group (it's private so posts stay within the group members) called Myositis Ramblers that is very helpful. I know I've seen several members that are in Australia. I lost a lot of lung function in the beginning and then slowly recovered a great deal of it. It has fluctuated over the years as we've tried to find a treatment that I responded to other than ultra high dose prednisone. I have the OJ subtype of AS. If I had any advice to give it would to be as aggressive as possible in protecting your lung function. Rituxan was recommended to me a year before I was willing to try it. Though I know I needed to try other things before I was willing to take on the risks, it has been the only thing that has worked for me. The other thing that has helped me survive is humor. Some days the only thing you can do is find some small sliver of something absurd and hang on to it! Kelly

Hi Lildreamer, I live in Brisbane as well and my specialist is Dr. David Heyworth Smith and he is at the Greenslopes Hospital. He is an Immunologist and he with, Dr. Survenash Prasad, Dr. Phillip Vechicco and Prof. Whitby saved my life. I hope this helps. Lisa

It does help a lot. It tells me I have the right man in Dr Vecchio. Just off the topic of Doctors. I have been getting some real pain in right side of chest radiating to back, is this something you experienced, it really hurts and I am wondering if it anxiety or the disease or both. I have noticed that I visit the toilet more often too for number 1's and 2's.

Hi Lildreamer, The pain in your chest could actually be your lungs hurting. When I finally came out of ICU and placed on the ward I was given a pic line for meds due to my throat swelling, tube fed, chest X-rays everyday from admission and I think on the ward I was on 10 litres of oxygen. I was also given liquid morphine for the chest pain and this was from the Intersitial Lung disease from the ASS. The pain went on for about 4 weeks and I get it now if I get a cough. How is your breathing and if you look at the other discussion you will see the symptoms I got. Check if you have them. When is your appointment with Phillip? If it is a fair time away ring and say you need a cancellation. Also has the GP put you on any drugs yet?

Thanks Alex, I have read your previous post and thank you. My breathing is normal at the moment but I can't help but constantly breath out to listen for wheezing and funny enough I heard it tonight after the shower, so scared!!! I haven't been able to really exert myself in the way of running to test my capacity because my leg muscles won't hold me up. I just saw Phillip on Saturday and he will be back in a week and scheduled me for two weeks time ( busy man) . I also have a Lung Function Test at the PA on Tuesday where I am hoping they can answer my questions.

Sorry Alexgirl I have another question. When you said you had a shortness of breath in a previous post, was that when sitting or were you exercising,walking,talking etc Was this your first symptom and if not how long from your very first symptom did you go to hospital. Sorry if you have already answered this somewhere in this forum. l

So sorry Alex, I feel like a real idiot I just found the right post you have been referring to (still getting use to this web sight). You have answered all my above questions. Just on the issue of diagnosis, I had been suffering unimaginable pain from all the associated symptoms for around 4 months and continued going to work and even went up the coast for a week where it was becoming increasingly difficult to carry my little one my shoulders. When I saw the Reumy a month later, he responded in much the same manner and got me to hospital. Kicking myself now that I didn't get onto it earlier, but very surprised that I even survived.

Hi Lildreamer. Pain, shortness of breath, muscle weakness, it is all pretty normal for this disease, although everyone is a little different. As stated before by others, do not wait on things. Do not let symptoms get worse before getting them checked. Also, you will have to accept that you can't do what you did before.this includes stamina and strength, as well as breathing. Pushing yourself too much can have reprecussions... God Bless and Keep up the good fight.. Wayne