Hi All. Thought we could all use a bit of positive news for a change. I had my 6 month checkup and lung function testing with my respirologist today. It went awesome!! I have improved again. I am now at 83% capacity, 80% Dlco, and 96% saturation.....pretty amazing that when diagnosed 2 1/2 yrs ago I was at 10% capacity, and was told I wouldn't survive the week......even when I started to improve I was told it would never go above 50% We CAN fight this, and we CAN beat this. Now if I can just get my muscles to co-operate a little more, I will be a very happy camper. Remember....keep fighting....find the right combination of medications and therapies for YOU.....and NEVER give up hope!!! God Bless and Keep up the Good Fight!! Wayne

Absolutely fabulous news, Wayne! I am so excited for you. Kudos to you, your wife and your medical team for fighting to find the right treatment combos to get you to this level. So wonderful. Kelly

Well done Wayne! It is great news for you :-)

Fabulous news Wayne. Very pleased for you

Excellent news mate!! I really think it has a lot to do with your positive attitude and it surely rubs off on me when I read your posts. I hoe you just keep getting better and better.

Wayne, That is fantastic news. Now I know that the prayers are working as well as the medications. We all need to keep fighting.

Thanks everyone. Tbear, you are so right. I do believe in prayers. I worked at a church before all this happened, and have a HUGE prayer group praying for me every day. I truly believe it is a big part of this, along with my doctor's, friends, wife, and all of you on here. 2 things I promised my wife when I got diagnosed........I would never stop fighting, and will always try to stay positive. Thanks to all of you on here, it is much easier to do both. God Bless and Keep Up The Good Fight. Wayne

Thanks Wayne for a positive note. I will try to be more positive and fight. Hopefully the cure is found soon. Take care all. Praying for all, Barbara

Weiner- got a question about one of the hurdles of this disease and how it effects you. With your muscle weakness are you able to do a short sprint without falling over? I tried and fell down my driveway, sad at the time, but it it would have looked funny from the neighbours point of view.

Hi Lildreamer I am able to do a small amount of walking without getting tired out. I can grocery shop (as long as I get to wheel the cart) go for walks with my wife (always holding her hand). I can be fairly unsteady and have fallen over before, although it is rare now. Give yourself and your body time to get used to your new movements and ability (or lack of). Or lives are now filled with constant adjustments. If needed, use a cane. I have 2 of them on hand and will not hesitate to use one if needed. Luckily I am doing well for now... I also pace myself. I prepare for know busy days by taking it easier the day before, and plan for at least a day of rest after. I am lucky that I have been placed on permanent disability and do not have to worry about money coming in. It does take that burden of me. Just take 1 day at a time, and make the best of everything handed to you. Try to find a way to laugh at it all..like you said about your neighbours. At least you probably made them smile or even laugh..be proud you brightened someone's day!! Lol I really hope that you are to get your meds working, and get to a better point in all this. God Bless and Keep up the Good Fight Wayne

Thanks mate. I won't stop until get there.

Wow ... I am so happy for you Wayne! Your determination and fight give us all courage. I've only been diagnosed for 2 months and just got out of the hospital for the third time -- but your lung function was much worse than mine initially. I'll keep all of us in my prayers and be vigilant in not letting this disease define me. Thank you for sharing!

Great news, Wayne! I'm really happy for you and your wife. It was wonderful news to read. You're an inspiration for us.

That is just fantastic news! Your positivity is truly inspirational.

Hey Soooo happy for you. Your kindness and positivity are amazing You made my day.

Wayne I have only just joined this group. My husband has just been diagnosed with possible Antisynthetase Syndrome a month ago and he is deteriorating quickly while they are trying to sort out medications. He is touch and go right now as his muscle involvement is limited but his lung deterioration is quite severe. But he is being really positive. He's asleep right now and I was desperately searching the Internet for just one positive story so I know there is hope. Your post gave me that and I just wanted to say thank you. That glimmer of hope means alot right now. As I'm sure you yourself would know.

Hi Ellie. I am so sorry to hear about the new diagnosis. You said it was "possible" antisynthetase. It is very quick and easy to prove with a simple biopsy, and blood test for the autoantibodies. What brought me back from the brink, and I believe helped alot of people on here was high dose prednisone (I started on 1000mg/day IV) and I was able to get on IVIG within 1 month of diagnosis. If they prove Antisynthetase, they need to be aggressive to kick it down fast. I will keep you, your husband, and your family in my prayers. Please keep us up to date on his progress. God Bless and Keep up the Good fight Wayne

Ellie I am a Queenslander too and there are a couple of others in our state that I know of. I too have just recently been diagnosed, in February. Weiner is right, it has to be smacked down quick and hard and prednisone is the master of this. You guys will be fine, don't worry we have good Docs here. Thinking of you and hubby today.

Hi Ellie, What area of Queensland are you in? I am in Brisbane and my specialist saved my life. It sounds like you husband is at the same level as I was. What hospital is he in? Is he in ICU? Because I was in ICU on a BiPap machine given IV Cyclophosphamide, Plaquenil, 1000mg of Prednisone. I had many, many set backs and was given 24 hours. Keep holding his hand and being strong for him as it is a very scary ride with many hurdles with pnemonia, DVT'S, infections, reactions to meds etc. I had them all and was told I probably would need oxygen for the rest of my life and I thought I would not walk again as after ICU I could not move from the waist down and my arms had no strength. Being on a BiPap which he should be on if he isn't, is very traumatic. I was in hospital for 9 months so if his condition is severe be prepared for a lengthy stay. I wish you all the luck and if you have any questions don't hesitate to ask. I will be thinking of you both. Lisa

Thank you all so much for your replies. His biggest issue at the moment is his medication and the fact that we live regionally so we have a limited access to specialists. We live in Toowoomba but are moving to Brisbane as soon as possible. The lung transplant specialist in Brisbane is the one who thinks it is Antisynthetase. But despite literally hundreds of tests everything comes back as normal. Except his CK which is very high. The doctors are fascinated by his case because in October he was a happy, fit, healthy and robust guy. By mid January he was fighting for his life. They know it's autoimmune but that's all. So they are going to treat it as if it is Antisynthetase. The problem is that he was on high dose pulse Pred initially but was weaned down to 10mg within 2 months and it was too fast. He was supposed to be on a new medication set up last month but a lack of communication between hospitals has meant he is still not started on it. They had trouble with not getting letters but I have gotten a copy of them myself so I have them ready for next appointment. He is home now because there is no one at our local hospital who can do anything but he is back on on Wednesday when the specialist returns from holidays. I guess I'm just scared that they aren't moving fast enough. But I have printed out a ton of research on Pred, Cellcept, Rituxiban? and some other drugs and we are not leaving until they get him on something. Even just moving from sitting to standing has him doing a puffathon as we call it. It's a scary time for him. I can't thank you all enough for your replies and information which I just haven't been able to track down elsewhere. Studies are one thing but I wanted to talk to actual people who are dealing with this syndrome because I believe that experience is better than theory. Lisa he's on 25 hour oxygen at home. What is BiPap? Wayne he hasn't been able to do the biopsy because he hasn't been stable enough? Was your biopsy a thigh biopsy? If so was that done under anaesthetic? Thank you xo

Ellie, Holding you both in my thoughts. So sorry you two are going through this and so relieved your husband has such a warrior for a partner. Your instinct to gather info and not leave until you have treatment underway is exactly what is needed. Trust your gut. And if his breathing gets any worse or if he develops a fever, take him to hospital right away. Don't wait for the appointment. Many prayers to you during this frightening time. He will get better, just keep making lots of noise until they get him on treatment. Kelly

Hi Ellie, The doctor you should see is Dr. David Heyworth Smith and he is at the Greenslopes Hospital and he is experienced with Antisynthetase Syndrome as he is my specialist. He will be back from holidays next Tuesday I think. Do you have private cover? If so he is the one, otherwise I know he works at the PA Hospital on Fridays. I know he has had another case at the PA, not as severe as mine and I'm not sure about others. He is very straight forward and he is the most intelligent person I know. He would not give up on me although on two occasions I was done for. His number is 38473256 and you could tell Coralie it's an emergency or just get a referral for the hospital. I cannot urge you enough to act quickly. I first had symptoms in early May 2011 of red swollen hands, shortness of breath, blue fingertips, blood splinters under the fingernails, painful joints in the ankles, knees, shoulders, wrists and severe rolling pains in the thighs. I could not stand in the shower or get out of bed in the mornings or walk without severe pain in the ankles and I could not move my arms above my head to brush or wash my hair. My breathing got steadily worse and finally the idiot GP (after visiting him every week up to 3 times a week) sent me to a Rheumy (who thank God had a cancellation 1 day after my call). I was sent to hospital the next day and then it took them 4 days to get all the info back after another setback of a mix up in the lab on my blood work. I was in ICU on a BiPap on June 24th which was about 6 weeks after the first symptoms really started. A BiPap is a machine that forces your lungs to work and strengthen especially when your lungs are almost done. My specialist would not entertain a lung transplant due to having an autoimmune disease with the risk of infection and slow healing. I have had a very rare infection whereby I had skin lesions that took up to a year to heal but thankfully did not go my lungs or brain. Ellie I had a lung biopsy to diagnose ILD. Cyclophosphamide really worked for me, I had 2 IV treatments in ICU and then was on oral for a total of 12 months. Also ask about IV Immunoglobulin as I have been given that monthly since the beginning. Ellie I hope I'm not scaring you but I must admit I'd wished someone had of known about this illness when I was struggling with the initial symptoms. I had no idea I was going to deal with something so serious and debilitating. I was in ICU with under 30% lung capacity but about 3 months ago my last lung function test showed 66%. Unfortunately, due to the GP not sending me to hospital earlier the ILD is now permanent. If you need a chat I am happy to talk to you further and my number is 0414673794. All the best to you and your husband.

Totally agree with Kelly about the fever (had one for seven weeks in hospital) and worsened breathing. As I said if you don't have cover and go to public make it the PA and then David can see you.

Ellie, I have to agree that the best and closest treatment to you guys is in Brisbane. Not to say that the medical staff in Toowoomba are not as good. It is just that due to the rarity of this awful disease it makes diagnosis difficult. Has he had any accompanying medication with the prednisone since first being diagnosed? You said that your husband has been diagnosed with POSSIBLE Antysnthetase. Have tests shown Anti Jo1 which determines the diagnosis? I am no expert and am trying to get my head around this myself, but one thing I do know is that there is hope with the many others around the world who are banding together on this sight to put this disease to bed once an for all. There is hope and we just have to keep searching and talking to one another.

KellyB thanks so much. I will definitely make noise :) The last time we met with the specialist we were quite patient because obviously this disease is quite rare. But on our next visit I would expect that he has more knowledge of it. But just in case he doesn't I have a bag full of it and there can't be any palming off this time. He needs meds now. Alexgirl thank you so much! We don't have private cover unfortunately but in saying that I would happily pay out of pocket just to have someone start him on meds so if Wednesday doesn't go well I will give him a call. You have really been through the ringer! Yet you still seem so upbeat :) You aren't scaring me, I'm a facts girl. I just need all of the facts and then I can plan. My husband has so many roles in my life, best friend, confidante, partner in crime....I can't lose him. But I know that I could if he doesn't get treatment so I'm just so happy to have found you all. Thank you :) You've also both reminded me that I really need to get a thermometer. I picked up an oximeter so I can check his stats and gauge whether he is worsening and a thermometer would be good so I can pick up anything nice and early. lildreamer I know what you mean. The guy we have up here is lovely but he is a Respiratory Physician in a regional hospital with limited resources. He has been in communication with the PA and Prince Charles but he has a lot of patients and there's only so much he can do. I think we'll have so many more options in Brisbane without placing too much pressure on any one person. He's only had the Pred at the moment and antibiotics for the last couple of days. I'm starting to really worry about that because the Pred is just not working at its current dosage (50mg). I think that he needs to be readmitted, have another 3 days of Pulse Pred therapy to stabilise him, then be put on 1mg per kg of Pred with the Cyclophosphamide plus the IV Immuonglobulin monthly. But obviously I'm not a Dr so ....but I can certainly put our points across. Unfortunately the tests have shown nothing. They did do the AntiJo test plus Myositis and Derma(something) but they all came back negative. Everything does except for the CK. This is why they are so stumped. They've tested for everything under the sun, even obscure diseases where bloods had to be sent interstate for evaluation. But nothing. It was only when the lung transplant surgeon saw him that he finally thought he knew what it was because he has all of the symptoms and physical signs and the lung pattern was in line with it (honeycombing I think he called it?). So they decided to diagnose based on symptoms although obviously they can't say 100% for sure. When he eventually stabilises they might be able to do a biopsy. I agree with you, this site is a heaven sent. I have gotten more information from all of you in the last 24 hours than I have in the last 4 months of searching. I will be forever grateful xo

Good Luck and stay strong!

Ellie. I had local anesthetic for the muscle biopsy. They did it on my upper right arm. I never had a lung biopsy, as they knew I had ILD, and did not want to take the risk of doing any more damage to the lungs. Treatment would remain the same regardless of a biopsy outcome anyways. I will urge you as the rest have. If he has ANY kind of fever, or worsening of his symptoms, get him to Emergency. As you already have seen, this can go downhill fast..... Even though I hate it, I would urge them to increase the prednisone until it stabalizes or improves, Most of us here have had another immunosuppressive drug (azathioprine, methotrexate, Cellcept, etc.) added to our meds to help combat this, and allow us to lower the prednisone, over time. I also agree with Alexgirl. If you can get him on IVig ASAP, do it. There is proof out there that the sooner a person get started on it, the better the outcome. As far as the antibody test, have they looked for ALL the possible antibodies for ASS. Jo-1 is only positive in about 80% of the cases. there is also Ro/SS, PO, as well as a few others. they need to look for them all. Your husband is very lucky to have you in his corner. Keep fighting, don't settle, and stay strong. He is going to need you now more then ever before. We are always here for you. I am not close enough to call, but can give you other ways to talk if you ever need it, or want to. Thank you for keeping us to date. Our thoughts and prayers are with you always. God Bless and Keep Up The Good Fight. Wayne

I am more than 2 months into this disease Ellie and am still on 75mg of prednisone a day and 100 cyclophosphamide as directed by my rhematologist. I am seeing my specialist again this week and I know he is going to try and knock my pred dose down (going to try and talk him out of it). So I would have to agree with Weiner once again and urge you to tell the Doctors to increase the dose of pred. I for one am going to try to convince the specilaist to get on this site and have a look. Hope he takes me seriously.

Im so glad to hear that it is a rainbow ...My body always let me know that it's infusion time...

Just got back from my specialist appointment. He was very happy with my bloods. CK has dropped significantly and my Liver has improved somewhat. How come I have had the fortnight from hell with regards to symptoms? He says that it is more than likely the meds, as I am on 75 pred and 50 cyclophosphamide a day. This doctor is great and really knows his stuff, but I just can't shift my mind set from the symptoms being typical of the disease and nothing more. I am hoping he is right and that as we reduce the meds over time the symptoms will improve. Otherwise, I am very happy that I am out of danger with regards to my levels and am starting to see a little light at the end of the tunnel. I have worked out that instead of panicking and thinking that I am going to kick the bucket, I figured out that I just have to work through the symptoms for a couple of hours and deal with it and then get on with life. Hope everyone is well.

Hi Lildreamer, Is it Phillip you see? Lisa

Yes it is Lisa and I am pretty sure he saved my life. He has a very positive outlook and is always encouraging, but I just can't help second guessing what my improved levels indicate as my symptoms are not reflecting them.

Hi Lildreamer, You were only diagnosed in February and as much as you want to get better quickly it takes time. Phillip was the doc who admitted me to hospital after a 5 minute consult and he with David Heyworth-Smith, Prof. Whitby, Dr. Prasad and Dr. Hocking worked tirelessly with ICU doctors and staff to save me. I was diagnosed finally on 24/6/11 and it took me a solid 6 months to feel a little better. Prior to that you would not have known I was the same person. The unfortunately, whilst in rehab at QE2 I had a relapse and was headed back to Greenslopes being tested for Leukaemia although it was a reaction to Dapsone. Then I got a life threatening infection where I had to be closely monitored to lesions on my brain and lungs. The skin ones took over 12 months to heal. I felt my best on Cyclophosphamide but knew I could only stay on it for 12 months. Some days I feel good, some ok and some exhausted. I returned assisting in a classroom in June2013 and work 3 days a week in my own this year. The Easter holidays have shown me how buggered I really am and my house, garden etc are a mess as I don't have the energy or lung capacity to do what I need to. It is not even two months since your diagnosis and the medication can take up to 6 months to really work. I understand your frustration and I was also very, very angry as the GP I saw disregarded my symptoms for little more than that of a menopausal single mother who was also a hypochondriac. It has taken and I still wrestle with the thoughts that I will never be the same again and that life as I knew it has changed.i believe I am a strong person and have survived something I was not expected to. You need to slow down, rest and do only the essential. Look luck and give yourself a break! I do understand totally as I've been there. Tell Phillip when you see him next that Lisa said hi. He used to come in every morning to see me for about 5 months and everyday in ICU he would hold my hand and tell me to not give up. I remember asking him to let them intubated me as I was so tired of being on the BiPap machine and just wanted to sleep. He told me that there was no way he would do that as I would probably not wake up, so I had to keep going even though I was exhausted. He motivated me to not give up. My friends actually called him Dr. Dapper as he was so well dressed. Give it time.

I hear you and yes this is only the beginning and I shouldn't be so impatient as there are a lot more people out there who have suffered for longer. But unfortunately, that is the way I am always in a hurry to resolve whatever challenges I am faced with. Just a question Lisa. So what meds are like to follow the Cyclophosphamide if we canonly be on them for a year.

I was put on Azathioprine after Cyclophosphamide, sometimes you might go on Methotrexate but that was no good for me. I am also on Plaquneil. Are you on that as well? Cyclophosphamide is a strong chemo drug and Azathioprine and Methotrexate are seen as mid range. I hope you understand I didn't mean that others are worse off, what I meant was the fact that even though you want to get better faster you have to just understand it takes a longtime if maybe never. Unfortunately, the older we get the lung issues also age. I wish I was more active and if I were is probably be stronger but also having severe. Osteoporios due to the Prednisone makes me very wary of falling. I have had approximately 8 fractures already. I was very much like you and I think when I got home finally from hospital, I wanted to be normal again. It took going on a trip to Melbourne to make me understand that I will never be the same again. I finally realised that I will always find things hard having the lungs I do. I was always very active as a single full time working Mum and all of a sudden I couldn't do things like sweep a floor, cook a meal etc. There are still many things I simply cannot do or struggle to do where I have to use my oxygen. Keep well and rest as much as you can.

Thanks Lisa. Has your lung and level of activity improved at all over the years? Or has anyone on this forum noticed any improvement in any areas. No I am not on Plaquenil, I was on that for a little while and low dose 10mg of prednisone before diagnosis and then went off them when specialist was overseas. That is when the disease took off. I had a little scarring at base of lung as indicated on the scan, but at the stage of hospitalisation I could hardly lift my leg in out of the car and my fingers, hands, wrists, ankles and feet were extremely inflamed. Not to mention the feeling of a drip connected to my veins running boiling hot water through them. I really want to accept that this is now my life, but something in me tells me to keep up the fight and I am trying everything I can to put this to bed. I am now thinking of having all my amalgam fillings removed as I have read studies that prove that mercury in fillings can trigger autoimmune diseases.

lildreamer I think lung function can definitely improve. It's an area that I have done so much research on because it's the area that has affected my husband the most. When he was initially diagnosed they said that his lung function was as good as it was ever going to get because his lungs were filled with scarring. But when the transplant team viewed his CT scans they were of the opinion that alot of the areas that appear to be scarring are actually just inflammation. There is a bit of scarring there for certain, in the base. But there is alot of inflammation to be worked on still. In between diagnosis and this latest relapse his breathing improved immensely. I'm really confident that we will get back there and even better. We can already see a little improvement after just a few days of higher Pred and Cyclo. And as soon as possible I will get him doing light weights again. The better condition your muscles are in the less oxygen they require to do their job so that was a big focus for us initially. Just light hand weights and body weight, doorstep squats. It seemed to help heaps. I agree with you, keep up the fight. Acceptance is obviously very important but you have to keep kicking butt too :) xo

I was into the gym at a minimum three times a week before this all kicked off and would really love to get back into it even lightly. However, due to the inflammation which occurs with even the slightest of strain on any muscle in my body this is not possible. Even after I mop the floors my hands become inflamed. I think I might need to be a little more patient and perhaps wait somewhat longer until even making an attempt to lift some weight. My main issues at the moment are that my muscles and joints just aren't working and practically shut down from time to time or after any of the slightest bit of exertion.

I know exactly what you mean lildreamer. My husbands muscle and joint issues are becoming more of an issue at the moment. Actually he was just sitting here with extreme cramps in both hands so I've massaged them, given him a hot water bottle and some magnesium. It's very frustrating I imagine, fix one thing and another pops up! I keep telling him to think of this period in time as a holiday and to take full advantage of this break but I think it's getting a bit old for him. And for you too I would imagine.

I think one of the best things I did shortly after leaving hospital was to go to a psychologist that Dr. Heyworth-Smith had recommended to talk through my experience. She too had almost died due to the ineptitude of the GP and was not biased but wonderful to talk to so that I could try and get my life on track. I think if I had not of spoken to her over a period of time my anger and loss would have consumed me. Instead I go on and continue in trying to lead the best life I can. Lildreamer you asked about lung improvement and since ICU mine capacity has doubled to 66% and I'm sure if a did not exercise it would continue. We have a wonderful, gentle male border collie and also a 10month old female border and she is quite frankly a maniac and very difficult to cope with. She is going off to dog obedience soon and when she comes home I will hopefully be able to take them both for a walk. Milo is a good boy but both of us need to lose weight and when Belle is trained this will hopefully be the start of something good. Well, on the idea of pushing myself I have decided to go to Tasmania on a holiday in September probably by myself. Looking forward to seeing a state that I haven't before. Speak to you all soon and take care.

Hi all. First off, Happy Easter to all that celebrate!! Okay.......now...I can say that lung function can definitely improve. I am proof of that. My lungs are back to normal. My respirologist would not had believed it if she had not been there from the start of all this. Even though I still have ILD, I am showing little symptoms of it at this time. I still have to be very diligent however. ILD can NOT be cured, only slowed. I just figure we can really slow it for the next 40-50 yrs. then it can do whatever the hell it wants to me...lol I also have polymyositis. Again, it can NOT be cured, only slowed. I have learned that with any myositis, the muscles lose the ability to repair themselves. Because of this, it can be a very fine line between exercising enough to maintain our muscles, to doing too much and causing irreparable damage. I walk, do small household chores and such to keep as active as I can, but I would urge caution. Too much excercise, or too strenuous weight lighting etc. could do harm. Be careful finding your individual threshold. Also, rest, rest, rest..... The hardest part of this disease is accepting that you will now be limited in almost everything you wish to do. Accept your limits, and make the best of the life you do still have. My neurologist laughs with me, and says there are only 2 things with this disease that we are absolutely sure of. 1. It will progress. Even though we have it fairly under control right now and I am doing "well", at some point it will again start to progress. I intend for that to be a very long time from now though.. 2. It is unpredictable. As you have already noticed, there is some common factors we pretty much all share. Prednisone seems to help almost all of us, as does IVig. Yet we all seem to react to different amounts, different steroid sparing immunosuppressant agents ( imuran, methotrexate, cell crept, cyclophosphamide. Etc.) Even though I believe that I will beat this, I have also accepted that life will never be the same is it was before this happened. I know I will have have setbacks, relapses, complications, etc. but I will continue to work through them. I accept that I may not be able to do everything I once did, like walk 5 miles of mountain stream while casting a fly to the unsuspecting trout swimming the clear pristine waters. I accept I will never run the Boston Marathon.. ( never would have when healthy either, but sounds good now..lol) But this does not mean I am rolling over dead either. I still fish, but pick a small area, or do it from a boat. I still take walks walks with my wife, they are just shorter, and somewhat slower. I have come to look forward to a well earned afternoon nap. I can not play soccer with my grandson anymore, but I can still cheer him on, and even be the loudest supporter most days. Also, on the weight gain. I try to eat healthy, but I also try to eat what I enjoy. I do not give a rats ass if I am now a "few" pounds over weight...( or even more then a few...lol). Trust me, I tried to modify my diet to combat the weight gain from the prednisone. Really made very little difference. Now, I don't care. I know why, and that is all that matters. All I care about is that I am alive. And I am going to enjoy every moment of being alive. Right now, that means chocolate Easter eggs, and plenty off them, and a big Easter breakfast with my family. Remember, we have been given a second chance at life. Don't waste it worrying about what could be. Accept it, and take what is now. I think I have babbled on long enough. Time for breakfast, I scan smell it cooking. God Bless and Keep Up The Good Fight Wayne

Very well said Wayne ;-)

Both Alex and Weiner, you guys have been a wealth of information since the beginning for me and I am so appreciative. I am really interested in this cellcept medication and might look a little more into it. Also on the muscle thing Weiner. I was always of the opinion that muscles can repair themselves. Sort of like tearing or stretching them at the gym.

lildreamer. Under normal circumstances, you are correct. That is how we build muscle. when we exercise, lift weights etc, we cause small tears in the muscles. Our bodies then repair these "tears" thus building the muscles. By the very nature of myositis, which is normally a big part of our ASS, the body can totally, or drastically lose this ability. In most cases, even if the body is still able, it will usually take much longer. that is why it can be so difficult for us to get our full function back. Remember, we are no longer "normal" anymore...(although many say I was never normal to begin with...lol) I urge the caution because we are all a little different, and some may be able to tolerate more then others. Take it slow, and "listen" to your body. God Bless and Keep Up The Good Fight. Wayne

That's interesting Wayne because before my husband became sick we were lifting 3-5 days per week and one of the first oddities that popped up was that his recovery time blew out completely. At first he thought he was just pulling muscles with bad technique. He would lift and his normal 1-3 day recovery became 3-4 weeks so he had to stop and move to body weight only but even then there were issues. Once the Pred worked the first time he was able to start again very lightly. I'm talking 200 gram weights and wall pushups etc. But as soon as he relapsed that ability went. The amount of muscle loss he has had in just a few short months is astounding, it's like it just eats it away. We aren't exercise lovers here unfortunately but he is 6 foot 3 with knee and hip/back issues so the weights were specifically to build muscle to help support joints and decrease pain. He starts pulmonary rehabilitation soon under the supervision of his specialist so hopefully they'll find something he can do safely. But for right now lots of rest and lots of sleep seems to be what his body is craving. It's a bit of a juggling game at the moment because he's being told to move as often as possible but when he does the 02 sat drops and his heart rate skyrockets so he has to stop. This thing has already affected his heart due to the hyopoxemia? So he can't risk more damage.

Hi Ellie, I am in pulmonary rehabilitation and they monitor And adjust my oxygen to unsure I stay above 90. Bi do quite well except on the treadmill which is weight bearing and then they have to increase my oxygen to 4 or 5 (normal is 2). Hopefully that will help your husband. I was having some hypertension and right side heart failure until they put me on lasix, but that quickly remedied it. This week my doctor prescribed "The Vest" as I just came home from the hospital due to pneumonia again. For those with serious ILD with a productive cough, It helps clear your lungs. Best wishes all, Mary

Ellie, when the doc does indicate what is a safe exercise regime, can you let me know. I had a bit of a walk up a hill about 10-20 meters today and it was a real strain on the muscles. I am wondering if I can do anything to improve this by way of rehab exercises. Also Ellie did hubby use supplements such as Creatine or Jack3D when he was working out? Weiner, you stated earlier that you can manage some household chores and slow walks with the misses etc because of this disease. Is that because you become puffed because of the ILD or because the muscles become sore and weak? I am also very interested to know who out there has had this disease the longest, not necessarily someone from this forum. I would like to pick their brains too.

Mary I just had a look and the vest looks fantastic! What a clever idea. I'm so glad they remedied the heart issue for you. I;m sure you have enough to deal with already! Do you feel that the pulmonary rehabilitation has helped you at all? Lildreamer I'll let you know as soon as I have the info. Even when my husband had his little brief reprieve he couldn't do hills at all, just flat ground, medium pace for about 7 minutes at a time. He;s just today going to try a couple of squats again to see how that goes. He does them making sure that his toes are above his ankles (bad knees) and just doesn't go down too far initially at all. The muscle weakness is holding him back there but the lungs are what holds him back on the walks. The only supplement he was using prior to this was Glucosamine. I have wondered about people who have this illness long term too but haven't been able to find any information. When my husband first got sick the hospital pulled some of my Mum in Law's health records because she was a medical mystery and my husband had some similar symptoms. Over the years they diagnosed her with Polyarteritis Nodosa, Rheumatoid Arthritis, Lupus and more. In the end they decided they didn't have a clue and just treated the symptoms. There are now discussion about it being likely that she had Antisynthetase with no lung involvement. If that's the case she had it for over 50 years.

Hi Ellie, The pulmonary therapy has helped me; however, my ILD is my worst condition. I do rotations on 4-5 machines and some small exercises for warm ups. Just before going into the hospital, I had Increased my time on each machine by 3 min and was keeping my muscle tone. While I don't have leg pain, the nerves especially in the upper legs seem to randomly start twitching or firing. Does anyone else have issues with the Nerves in their legs? I hope the therapy helps your husband. It helped me because I could get the exercise & they kept me on oxygen while I did it. It's psychologically helpful to feel more like one's former self. Mary

I get the twitching in the eye lids and the burn throughout most of my muscles as well as the hand and feet cramps (ouch!!). My upper legs are the biggest concern and the disease has had an impact on my calfs too. I am too scared to sprint anymore as twice now my legs couldn't support me and I fell over in a heap as if I had run a marathon and the muscles in my leg just melted and cease to work. I am still not sure on the lung thing as I have not really exerted myself yet as I am too scared of the result. I have another scan on my lungs, heart, chest and liver coming up in may. That may paint a better picture of what this shit of a disease has done to me.

Pulmonary rehab was a wonderful way to learn how to exercise, build and maintain strength in this version of my body. I had to throw out all my previous beliefs and develop a new framework for exercise. It was super helpful for learning to navigate my daily life with these lungs, suppressed immune system and lower energy. I've gone back to it several times over the last five years and highly recommend it as soon as you're able to. By the way, the muscle twitching, cramps and weakness in addition to being some effects of the myositis, can also be caused by the high prednisone dose. It decreases muscle endurance and also can drop your potassium levels (leading to muscle cramping.) I have to take a potassium supplement. Have your doctor check your levels on routine bloodwork. And of course low oxygen levels cause muscle weakness and fatigue too. It is hard to live on the high dose prednisone. During those times it feels like my days are more about managing the treatment side effects than the actual disease. It does get better with each drop in dose. As I read the posts between you Aussies I am find myself so overcome with relief that you have each other to compare notes, treatments and doctors. Our experience is the data we all need to survive this. And survive it we will!

Oh and have you also been told to stay out of the sun? Seems the uV rays can trigger a flair (especially if you also have dermatomyositis) plus prednisone and some of the other immune suppressing medications make you photosensitive and you can have a big reaction to the sun. One more thing to shake our fist at the Sky for!

Very true. The sun has been particularly worrying for me lately, sooooooooo hot and burning. We are lucky here in Oz that it is a small country and we are able to connect a little more closely. But don't worry KellyB I hereby make you an honorary Aussie of Circumstance and Disease. We live in an era where we are fortunate enough to access information from around the world through the net.

We'll said Lildreamer!