I just received my diagnosis a week or so ago so I'm glad I found this site. I hope to be able to learn from everyone. I've read something about tape for split open fingers. What kind of tape are we talking about? Thanks

Riverturtle, I'm not sure if it's appropriate to say "welcome" to this very unique and rare club, but I'm glad you found this site. These folks are a great resource and have helped me with treatment ideas and more than anything, not feel so alone and frustrated at times. My best to you in this journey, Kelly

Riverturtle, I've been dealing with this stuff for nearly 3 years and after going through several prescriptions from my doctors for my mechanic's hands, a friend bought me a hand cream that actually started working the first time I used it. It's called O'Keeffee's Working Hands. The easiest place to find it is at Lowes hardware stores. If you don't have a Lowes in your area the web address for this company is www.okskinco.com, and I did find out from someone on this website that they do not ship outside the US. I've been using this stuff ever since, and my hands are nearly normal. I type for a living and this has been a life saver for me. Good luck, keep in touch, and if you have concerns or get to a point where you are frustrated and down, talk to us. We understand even better than your doctors do. But above all, do what your doctors tell you to do. That is important. And if you don't think your doctor is doing anything for you, find a new one. My prayers are with you.

Thank you so much. It is nice to know that someone else "gets it" with all of the strange symptoms and the ups and downs that will be a part of this journey. I will be sure to check this site often. I'm going to Lowe's today!

Hi Riverturtle I use Haelan tape, a steroid healing tape, when my finger splits are really bad. It's good stuff, i wear it at night, as it looks a bit weird going around in the day with sticky tape on your fingers, and it also collects fluff over the course of the day and looks a bit horrible! Sorry to hear you have been hit with the diagnosis this week, take it slow and feel free to ask here, they are a great support group and very knowledgable about treatments. Ali

Welcome to the site. I hope you can get the help and information you need aboMut this crazy disease. I am one of the lucky ones to be in remission and not on oxygen. I was misdiagnosed for four years. I just found out a year ago that I had this disease. My advise is to look at the information and get doctors who know what they are doing. I take Imuran and Plaquenel for my ASS. It has helped my fingers. My rheumatologist added the plaquenel this April. My thumb is not bothering me as much. I think my lungs are getting better, however I won't know for sure until I go back in October. I have to repeat labs in three weeks because my white blood cells were 4.1. I may have to lower my imuran dose if it stays to low. I had a low count earlyer in the year. I would get the N-Acetylcystine that is recommened on this sight after talking with your doctor. I take it. I try to keep up with a 8 almost 9 year old very active boy. I just started a new job. I was let go from my job just before I found out my lung disease.

Thanks for the insights and help everyone. I am thankful that my children are grown since it would be hard to manage it with this disease. Last week I had a procedure to look at my lungs, take a couple of biopsies and "wash" them out. Still waiting on the results. That was NOT very fun and it really zapped my energy for the rest of the week. I'm hoping the Cellcept that I started on a couple of weeks ago will help me feel better and have more energy. Still on Enbrel too. I lost my job in January and have been looking for one since, except the last 2 months I've wondered if I could even manage one. Just don't feel good and strong like I used to. Last time I went to Walmart I had to sit down and rest 3 times before I could get out of the store and that is not normal for me.

Hi welcome to the site. I hope the cellcept works for you it did wonders for me I remember the struggle to do even the basic tasks. It took me two years to get back to work although one year was maternity leave. Take your time and get yourself well first. I remember laughing in disbelief when my consultant told me the best thing was bedrest my youngest, of three, was eight months old at the time. Looking back I can see he was probably right. Take care and take it easy. Katrina x

Hello, i'm glad u found our little help group. I am newly diagnosed as well, I just hit my one year mark, but I spent all of last Aug, Sept, Oct, and Nov hospitalized in ICU due to complications with my lungs. I am not working right now, I was an elementary school teacher and was told by my pulmonologist that my career was over. I was upset, but I can see now that if I worked I would be much worse off. I am 30 yr old with an 8 yr old, he needs me around and healthy more than my students. I use a walker or a cane when I go out because my muscles are so weak, my walker has a seat, so I can sit and roll if needed. Cellcept has been great for my lungs as well. I hope this site helps u as much as it helps me, its nice to know your not alone with this ASSy disease!

Hi All. I was just diagnosed with this disease 2 weeks ago. I am still trying to adjust with what will undeniably a difficult journey. I have full pulmonary involvement. Does anyone know where to find some valid information with stats, general timelines etc., if any are actually available. I would really like to know as much as possible about what I'm dealing with. It will also be nice to have otherrs to talk to about this. I have been told I am the only person in a city of 1 million, that is currently diagnosed with this, so it is pretty scary. Any information and/or support will be greatly appreciated while going through this.

Hey, Weiner66, As far as getting information about what is going on, let me tell you that the best information you will get will be from the people at this site. I was diagnosed a little over 3 years ago. For my pulmanary doctor and my rheumotologist, I am their only patient with this disease. I work for Ohio State University, and my doctors are at the University Hospital. I couldn't get better support than that. They treat me for what is going on at the moment. Right now I am taking Cellcept and Dapsone for my lungs. A mild anti-inflamatory for my joint and muscle pain. And I use a lot of Aspercream and Aleve. Also for the Mechanic's Hands, I went through 4 or 5 prescriptions of different creams, and then found (through a friend) a cream called O'Keefee's Working Hands. I get it at Lowe's Hardware stores. It has made a world of difference in my hands. I type for a living and this has made it much easier for me to do my job. My prsonal advise is, do what your doctors tell you to do. Get as much rest as you can. And listen to the people who are going through this with you, at this site. Just the emotional support you will get here, the understanding, and the connection to others who are going through the same stuff is invaluable. All my prayers to you and your family.

Hi Riverturtle - my husband was diagnosed with AS in May 2010. He was diagnosed with dermatomyositis more than 10 years ago. At this time, the lung issue is in the forefront as when he was diagnosed he had already lost 50% lung function. However, it has remained fairly level since 2010 with only a slight worsening of his pulmonary function tests. Because of the way his lungs looked on CAT scan(honeycombing) his rheumatologist wanted to treat him aggressively so she began with Cytoxan infusion. He had three infusions and then she put him on Cellcept which he has been on since last October. He has tolerated this very well and it appears to be keeping him stable. He did go through a bout of pleurisy with fevers, nightsweats, etc for about 3 months at the beginning of the year and they did a bronchoscopy but didnt find a definitive reason for the fevers. After the bronchoscopy he had NO more fevers, thank goodness. In addition to the antisynthetase syndrome he also tests positive for rheumatoid arthritis and Sjogren's and his ANA is positive. He has a very high rheumatoid factor and had nodules on his elbows but they have disappeared since being on the Cellcept. He also has high sed rate which has also decreased since being on Cellcept. He doesn't have the problem with mechanics hands at this point but recently has developed some skins redness in different areas of the body including the face. Oh how this disease does bring with it many many different symptoms for everyone and the course of the disease is VERY variable from one individual to another!!. The information out on the internet is not extremely helpful or plentiful and I too believe that hearing from people who are going through the same thing and learning what treatments work for them is extremely useful. Best of luck to you

Thanks for the encouragement and info on how others are doing with this strange disease. It is nice to have a place to come and ask questions and learn from others.

Thanks tbear73. I am already truly thankful for finding this site. It is nice to be able to talk to others going through the same thing. Just reading through these posts has provided alot of emotional support already. Thanks for the info on the cream and pian releivers. I do not have a rash so far, but am getting very dry chapped skin. I am currently on 80 mg Prednisone, 50 mg Imuran, daily, and 50 mg Sptra 3 times a week, as well as calcium and vitamin D. so far it is working well to bring down the inflamation, but the thought of the next 6 month's or more on those doses is worrisome. As you said, I am going to do as my doctor's tell me, and keep checking here for information and encouragement. My thoughts and prayers will also be with yourself and your family, as well as everyone who has this disease. God Bless, and thank-you

Weiner 66 - Sorry I didn't say welcome to you as well in my above post. Welcome and best wishes to you.

Weiner66, I'm glad you have found this website. As mentioned, this tiny group is a powerful resource. Several times I have found treatment options here that my doctors did not know about or consider. There are a few things I would recommend: 1. Find out what type/form of Antisynthetase you have. This might help you and your docs guide treatments and deal with symptoms. For instance, I have the OJ-auto antibody of AS. It's about 6-8% of AS, tends to only attack the lungs and is seen in absence of myositis and other autoimmune disorders. I was diagnosed in July 2009 after rapidly losing 70% of my lung capacity over 6-8 weeks and was put on a treatment course of high dose prednisone, Imuran, NAC and Bactrim. It took me 18 months but I did manage to clear out my lungs and get back to 75% lung efficiency and get off the supplemental oxygen. I went off all the meds after 22 months, had a relapse and am now on a new treatment mix and working on regaining lung function again. 2. The high dose prednisone has a huge list of side effects and there's some good strategies for dealing with them. If they didn't already tell you, take the prednisone in the morning. It will be less disruptive to sleep (though frankly I never could sleep more than a few hours at that dose, even with Ambien, but a few hours is better than nothing!) You may also get acne rashes, a whirly brain unable to filter out stimuli, lots of muscle weakness, mood swings from manic, talkative states to being easily irritated and dark moods. This will decrease gradually as you taper the dose. Which brings me to the next thing I wish I had known - when they tell you to drop down to a lower level of prednisone, say from 80 to 60, and then 60 to 50mg, etc. do so gradually otherwise your body experiences withdrawals (symptoms are extreme exhaustion, body and muscle aches, dark moods, etc.) You'll have to tinker with what works best for your body, whether it's tapering 2 mg per week or 5 or 1. 3. There are some articles out there with overviews of AS but we are a rare group of patients, so the information is sparse. I often do searches on pubmed.gov (http://www.ncbi.nlm.nih.gov/pubmed/21455765) and read as many abstracts as I can. My docs are also consulting with the Myositis Clinic at John Hopkins Hospital in Baltimore, MD. This clinic seems to be on the leading edge and has seen more patients with AS than most. http://www.hopkinsmedicine.org/myositis/ It's tricky to find things just on AS, so I often do searches on the disorders it is most often seen with and find information that way. 4. When you get more stable, I highly recommend a referral to Pulmonary Rehab. They will help you learn to manage your energy levels, rebuild some strength and be more mobile with your oxygen. Good luck and best wishes to you. Kelly

Hi Kelly. Thanks for the info. I have learned that I am Jo-1 / RO-52 positive.This should help me more. When I was first diagnosed, my lungs were only functioning with about 40% functionality, but after 6 days off 1000mg/day prednisone, and 50mg imuran, as well as septra 3 times a week, then 2 1/2 weeks at 80mg prednisone and the other meds.. i am doing much better. As I taper off the prednisone, I am increasing the imuran. I have managed to get back to about 90% function. I am still only at 60% capacity though. From the info I have seen on here so far, I am extremely lucky, and doing very well so far. I will watch closely as I taper the prednisone. I certainly do not want any more side effects then absolutely necessary. I already do not sleep well (yes I take my prednisone by 6:30 am each day), and the mind issue...well.....I am pretty whirly these days. I appreciate the info on websites as well. It is very hard to find good information on this. I have full AS in all my muscles, as well as the ILD. Between the muscles and the lungs, so many everyday taks are such a chore. I get exhausted just going upstairs to bed...lol I am currently seeing both a Respiratory Specialist, as well as a Neurologist. I beleive that once we get a handle on this, I will be looking at more rehab. Everything is so new, we are taking things one step at a time. I think the next step right now may be IVIG. I have heard it has been having good results. I hope you're new meds bring you back to a better place quickly. I will keep you and the others with this in my thoughts and prayers every day. Wayne

Wayne, Yes the muscle weakness makes every day tasks so much harder. I used to be the one in the house that opened all the jars... not so much anymore! I did have to sleep in the downstairs of our house for many months until I got strong enough (lung and muscle) to get up and down the stairs safely. I use a very low dose of Ativan to deal with the whirly brain sometimes. Helps keep the agitation down. Glad your lungs are improving quickly. Mine seem to lose function fast and slowly regain. I use a small A1 size oxygen tank when moving about and customized a camelback backpack (took out the water bladder) so I can wear it on my back securely and hand my hands free. Has made me more mobile and balanced. I hear the IVIG is a good treatment. Looking into it myself. I wish you the best. Kelly

hi, you have come to the right place. i get most of info. from here too. i am trying to recover from a heart tack. i had removed my ox. durning the night. when my friend found me i was blue around my mouth and gray colored. i dont remember any thing. my right side of my heart is 2times larger tnan the left. iam resting as much as possible..i am thankfull for this site. weicome dont think just because i hade something, that you will to. this doesnt work that way. but i have really like this sight and so will you i hope. .god bles and welcome. by the way i am nana six

Glad to hear that you got through the heart attack Nanasix. I just got out of a 12 day stretch in hospital. I had a strange rash, and bad infection that they did not figure out. 1 good thing came out of it though. I did get started on the IVIG treatment. did it over 5 days while stuck in isolation. OMG. I started to feel it after the second day of infussion. I have regained most of the use of my muscles, even if they are still somewhat weak, and got a 5% increase in my lung function. I am now up to 65% capacity. I have some real hope for first time since being diagnosed. I will doing the IVIG every month as long as it takes. I am vey lucky to be in Canada. It is fully covered, no questions asked. If any of you have a chance at this, take it........ Nanasix, will keep you in my prayers. I say a prayer for all of us who have this aweful disease. God Bless us all.

I am glad to hear someone is feeling some positive results from Imuran. I was diagnosed last month with anti JO-1. On 150mg of Imuran and 30mg prednisone...hoping to taper off the prednisone. I am currrently on short term disability since October, but hope to get back to work in January. Is there anyone that has been able to go back to work full time? Full disclosure...I work in a bank so it's not really physically demanding.

Hi Djarae. I have just received my second treatment of IVIG. For me it has been like a miracle. It has made an incredible improvement already. I have been off work since beginning of August. I was diagnosed in September, also Jo-1 positive and was at a point where I had 10 % lung function (yes, not expected to come out of hospital alive), and could not get out of bed. Am now walking without cane, 65% lung capacity, and doing very very well. Am tapering off prednisone (from 100 mg/day down 10 mg each week now) and increasing imuran 50mg/wk (currently at 150mg/day). I am doing 3 days IVIG every 3 weeks now. If you are able to get started on this, I would highly recomend it. The sooner it is started, the better the results, or so I've been told. I am able to walk almost a mile now, even though I am slow, and still need regular naps. Going to keep fighting to get stronger. I am expecting to be back full time at work sometime between February and April. The IVIG and prednisone is what is doing it. The imuran will take about 8 months to build up in my system before it is actually any use to me. At least that is what my neurologist tells me. My job is physical, I am a caretaker/ maintainance person for a church. I also believe in Reiki, Prayer, and Positive Thought. I will do anything that might help...... So far, so good. Keep looking ahead. The way I see it, if we can beat the odds and get this terrible disease, then we have to believe we can beat the odds, and defeat this disease as well. Thinking this way can't make it any worse anyways...lol Keep up the good fight!! God Bless us all!

Wow...10% lung function! I believe I was lucky that I got diagnosed quickly compared to others. I had been sick with what was thought to be walking pneumonia in July. I finally got in to see a specialist in September who gave me the diagnosis, so my treatment started pretty quick with Prednisone. I've been on the Imuran for 4 weeks now and have noticed a difference after the 2nd week. I had horrible back spasms that woke me up every hour along with night sweats. The spasms and sweats went away after the 2nd week of meds. The strength in my legs, arms and hands are better. My hands are still swollen, making it difficult to write. My lung function was at 50% but my oxygen saturation was 97%. I am going to see how much improvement there is at the end of December and plan on going to work maybe half days in January. Let me know how your progress is going and I do believe in the power of prayer and being positive! God Bless, DJ