I am just wondering if there are any members on this forum who visit this site less regularly due to their symptoms disappearing all together or not becoming such an issue anymore. Is there anyone who feel that they are really in remission with no symptoms at all? If so can you log on and give us all an update. Looking for a little hope that is all.

Hi. Yes, there is light at the end of the tunnel. I am very active now that I am in "remission". I could hardly walk and in very much pain for almost a year. That was Oct 2008-2009. I have been really good since that time due to Rituxan and Cellcept. I have even weaned off of Prednisone. But...I do have have times that I am stiff, ache and just do not feel great. I will certainly take it with no complaints as I am so much better than I was. Also, I get a bit down and have a pitty party from time to time as I cannot do what I use to do or I do not feel wonderful. I just have to give myself a pep talk and realize that I am so much better than I was and all in all, I am and have been doing real well for the past 5 years. My family is very supportive, which is awesome. The beginning is terrible because you are in such shock but if you get a good doctor and get on the right meds, then you will get relief. Best of luck to you, Sending you positive thoughts.

Thanks Melissa. I hope I get there soon.

I read all the posts but I don't comment much because sometimes I feel like I can't relate. That's because my condition either didn't present or persist in the same way as many others I've read or that it was quicker to stabilize. I was diagnosed and placed on high pred dosage quickly. I have also never shown any signs of the lung component. However, I am not in any kind of remission. I just feel stabilized and optimistic and because of that I hesitate to comment - I don't want to come across as insensitive or dismissive if I comment.

No not at all Brandy, please comment on how you are doing. I for one will get a huge boost out of this. Have you definitely been diagnosed through test as JO+Antisynthetase. How long did it take to stabilize you with high doses of pred and what doses did you start off at and how much did you go down at what stages etc, was there any other meds they used with your pred. I would really love to know and in no way will I think you are being insensitive or dismissive as all this information is big help. When you say stabilized, does that mean that you don't feel the symptoms as severly or not at all?

For time reference, I got sick Aug 2012. I have the JO1 with all the classic ASS symptoms plus Raynaud's but no lung. I was on 60mg pred for 4 months with a taper to 20mg that lasted about 4 months. At the start of the taper, I tried 2000mg Cellcept for a few months and it didn't work. We've found the combination of 250mg Imuran + 10mg pred to work for me. By stabilized, I just mean that my enzymes are consistently 400-500 and my daily life is not impaired much at all. My muscle weakness is hardly noticeable, my hands and wrists are only very slightly swollen, and I've lost my moon face and brain fog. Raynaud's is the most uncomfortable symptom expressing itself right now, but even that is very manageable. How long have you had it?

Thanks Brandy. I was Diagnosed a little over 2 months ago but it all started around October of last year. I am on 70mg pred and 100mgp/day of cyclophosphamide. Still have the horrible symptoms although Lungs are feeling ok with slight breathlessness after activity.

I hope you feel better soon.

Hi lildreamer I was diagnosed with ASS with Jo-1 antibodies in July 2013. I spent 3 weeks in hospital. My lungs are worse than my muscles. I left hospital on 75mg Prednisone & Tacrolimus. When I first got home I couldn't shower & dress myself. Prednisone was reduced over time and ceased in February this year. My lungs have gone from 33% to 76% capacity. I have pain all the time but it's not excruciating. I've lost 40kg and built up my exercise tolerance. I now walk an hour every day, cycle 30 minutes & do some light weights. I'm only on oxygen now when I exercise. I've been medically retired so it's easier to concentrate on good food & exercise. I have dark days every now & again but try very hard to stay positive. I guess you could say I'm stable at the moment but my specialist reminds me constantly that catching a flu or chest infection could have me needing a lung transplant very quickly, so I do live a bit in fear

Thanks for the update Barbie, sounds like you are on the improve. Do the muscles rebuild and feel stonger over time? What amount of Prednisone are you down to? Are you still very susceptible to flu and infection. Sorry about all the questions.

Don't be sorry about the questions. We need to know as much as possible, they say knowledge is power. My muscles don't really feel stronger, they ache. But I need to keep them moving. I was told that if ever I need a lung transplant I need to be able to cycle 30 minutes so I force myself to be as fit as I can be. I find I have to be careful to know my limits and not push too hard as I take longer to recover. I'm off Prednisone completely and relying on Tacrolimus to suppress my immune system. I have considerable more pain without Prednisone but my specialist told me to put my big girl pants on and deal with it as long as possible. It sounds tough but she worries about the side effects of Prednisone and only wants me on it if absolutely necessary. I am susceptible to flu/chest infections. I am on Bactrim antibiotic all the time and wear a surgical mask when out in public to reduce the risk of catching anything

Why would you need a lung transplant? That is obviously worst case scenario? Does living with this disease mean having to use immune suppressant medications for the the rest of our lives or can we go back to having an immune system again at some stage. Sounds very risky to live without a defence system.

My understanding is that I'll need my immune system suppressed for life. My specialist consulted with a lung transplant doctor to see a transplant could be done. At first the answer was no as my immune system would just kill off another set of lungs but after research there was a successful case in America so the lung transplant doctor agreed to do it if required. This isn't necessary unless lung function goes below 20%. I was doen to 33% but have now improved to 76%. On xray my lungs are nearly completely white. I have little medical understanding, only know what my specialist tells me. I'm trying to learn and understand what is happening to me. Surgery is risky, mainly to to risk of infection. I have to have a full hysterectomy in the next few months and have approval from my specialist for that to happen. Just need to take extra precautions - take it easy, additional antibiotics etc. Not 100% sure, but gyno thinks hysterectomy is needed due to ASS. Pap smear 12 months ago before I got sick showed no problems, but now have problem with prolapses. Would be interesting to know if other women have had the same issue - not something anyone likes to discuss though

BarbieRose, I was diagnosed with ASS in January of 2007. I get an annual pap smear done, and have had nothing but clean and clear results from them. As for the immuno-suppresent drugs, yes they will be a part of our lives from now on. The way this was explained to me when I was diagnosed is that my Jo-1 antibody has decided that my muscles and the soft tissue in my joints no longer belong to me, so they are attacking them just like they would any foreign body or infection. And with my arthritis, that gave it a weak spot to start with. (Attackers always hit your weak spots first, and wear you down). The lung involvement comes in as another weak spot. The lungs are naturally a delicate and easily damaged organ. So they are a perfect target for the antibodies to strike at. I want to be mobile and active for as long as I can, so I will take the immuno-suppresants and be careful around sick people. One of the things I plan to do is to retire from my job of 31 years within the next year. Spend more time at home, doing the things I want to do; gardening, cooking, crochet, needlepoint, and reading, along with hanging with my teenage grandkids. I pray for us all every day. Stay as strong as you can, and keep fighting. This is our lives, and we want them. Terry

lildream my husband was also assessed by the lung transplant team. Basically because everybody thought that his lungs were full of scarring which hardens the lungs and makes it impossible for them to inflate properly. He would take a breath and only get a tiny bit in before it just solidly stopped. Given how severe his case was they saw him very quickly and worked out that much of what was thought to be scarring is actually inflammation and they also thought that Pred and Cyclo could get rid of that completely. So he still has Pulmonary Fibrosis (scarring) at the base of his lungs. And that will be there forever but the hope is that the inflammation will be gotten under control. The pulmonary Fibrosis is what I think stops his breathing completely when he bends over. They will do ASS transplants in Australia but you need to have not smoked for 3 months and be fairly healthy in other areas (heart etc.). You don't need to be able to do any significant amount of exercise but obviously the better shape your muscles are in the better candidate you are. That is why muscle health is such a big focus here. The hospital are actually arranging a physio to come out to the house to do some pulmonary rehabilitation work. I wonder if you could have that too? When we get to Brisbane the lung transplant team will actually be my husband's doctors as they have already done consulting on his case. So if/when we find out any more about that stuff I'll let you know.

I had the base scarring too and they indicated that this was a result of the disease and I also know of someone who had it really severe but it miraculously reduced as indicated through scans after being medicated for a while. I don't think they understand how this happens but it is another mystery of ASS. I am hoping that the scaring is a one off and does not progress with attacks in the future (fingers crossed). How is your hubby now, is he improving?

The first doctor we saw, that one that diagnosed the Interstitial Lung Disease side of it was actually also the one who said he had seen a reduction in scarring with others. But both lung Drs say no but that the scarring looked a little old. Possibly even to do with Pneumonia 10+ years ago. But he's doing well-ish at the moment. The Cyclophosphamide has made a bit of a difference but not huge. Tomorrow is the final increase to 3 tablets though so I guess a few more weeks until we really know whether it is working. Joint and muscle pain had become a bit of an issue but less so since the new eating plan he is on which is just designed around anti-inflammatory foods and things that don't put too much strain on the body. Just trying everything under the sun at the moment and lots of experimenting. How are you doing?

My specialist said that the scar was possibly old but Lung Doc said it was part of disease. Hoping specialist was right. I have relaxed a little on the diet and panic of it all and am now just dealing with the pain associated with inflammation around the body, especially back of neck shoulders and legs. I am taking fish oil and glucoscamine to hopefully help, but only over last couple of weeks. So may have to wait a while. Taking two cyclos a day and 55pred at moment. The real test as to whether the cyclo is the ONE will be determined as pred is reduced (bit scared) but the bloods will show as time goes on. Will never stop the fight and hopefully a cure is not far off as there are medically miracles being discovered for a host of all other diseases everyday. Lets just hope that there will be one that is universal to auto immune diseases soon!!

Saw specialist yesterday. Scans have returned- chest liver and lungs all good inflammation has reduced in all areas and my CK level has dropped once again. Looks like the cyclophoshamide is doing its thing. He has told me that over time the pred will be reduced significantly and I will perhaps move onto Imuran. Lung scan Tuesday hope that one comes back ok.

Sounds good LilDreamer. Wishing you luck with your Lung Scan. I had heart tests last week as I had weird pains in my back, chest and jaw on the right side whilst having my IVIG. Stayed in Greenslopes overnight and results - inflammation around heart could be ASS or DM, small spots of plaque on surface of heart and arteries are great. Treatment at present is an aspirin a day. No relation to my IVIG. Have been tired lately and very p/o'ed as I have slept most of 4 days out of 7 this week as I picked up a bit of a chest infection either from school or hospital. I get very cranky about wasting days but I just can't seem to wake up or get out of bed.

Went to the Paniyiri yesterday and was absolutely stuffed afterwards. Had to rest on the couch for an hour after all that waking. It seems that I get tired very easy and my legs just aren't as enduring as they use to be.

Lucky you I slept nearly all day and wasted it.

Day after paniyiri work day. Really feel it between the shoulder blades and around back. A little painful today, hopefully this one will pass. Not liking the pain at moment.

I've got some Endone here if you want one!

Haven't really got into the pain killers. Never really crossed my mind if they should become an option, but may consider in the future. Thanks for the thought Alexgirl

I was given them due to my Osteo and 5crush fractures in my spine which play up daily and a fractured sternum which clicks if I bend over and then catches. I try to only take them when I'm really in great pain otherwise Panadol Osteo is fine. I have an electric heat pad which is great for those aches and pains.

Ouch. Here I am complaining of a little pain and inflammation in my neck and back. Sounds horrible Alex