My muscle weakness was so severe I was in a wheelchair for outings and could barely walk at all with my walker at home for about a year. I have severe lung problems and cardio myopathy due to the muscle problems. Has anyone else gotten that weak and how far have you managed to recover? Has anyone recovered from their cardio myopathy? I am new to this site and I'm still trying to learn about my disease. I have Scleroderma, polymyositis, antisynthetase syndrome.

The antisynthetase syndrome seems to be somewhat different for everyone, but I came down with the disease about 2 years ago and experienced much of what you describe for about a year. I was on dexamethasone (a steroid) and CellCept. Through a lot of physical therapy and lung therapy I eventually was walking with a walker, then a cane and then unassisted. It wasn't till I got off the steroids that I got considerably better. Steroids can help a lot, but they can also do a lot of damage. I still have bad peripheral neuropathy in my feet and raynauds syndrome in my fingers. What meds does your doctor have you on? Good luck, with a lot of work and a positive attitude and some good doctors you should be able to get much better.

I've been dealing with this stuff for nearly 5 years now. My doctors started me on prednisone, diclophonac, and cytoxan. I have been off prednisone for about 3 1/2 years and they replace the cytoxan with CellCept. Since then my breathing has improved. PFT results are very improved. As for muscle weakness, that's what scared me to begin with. I had been trying to do some cooking for a family New Year's Eve party, and could not hold onto anything. Everything I picked up, I dropped. I started thinking about anything in my life that might have changed around that time, and the only thing was that my family doctor had doubled my Lipitor from 20mg to 40mg. And you know that disclaimer they read on the commercials about side effects; "If you experience unexcplained muscle or joint pain or weakness, call your doctor. This could be a rare but serious side effect." That was my first question to all my doctors; "Could the increase in my Lipitor dosage have caused this?" Well of course, none of them will say yes. I would love to know what that "rare but serious side effect" really is. I can't get a straight answer to that question at all. Anyway, the key to living with this syndrome is good doctors. Listen to what they say. Follow their instructions. Ask questions. Make sure they listen to you. God bless, we are all praying for each other.

Barbie - what is your CPK level? It is probably elevated. CPK is a muscle enzyme they test through blood work. If this is elevated, you will have muscle weakness. When my husband was diagnosed with dermatomyositis several years ago, he was unable to get out of a seated position or out of bed without difficulty. His CPK level was not elevated to an extreme amount but I know others who have a very elevated CPK level and have your type of weakness.

Cellcept didn't work for me and I can't take predisone at all. What I've been on is cytoxan, retuximab, medrol, plaquenil, IVIG, for 8 months and now I've weened off IVIG and replaced the cytoxan with azathioprine and he says no more retuximab. Over the last month though I've had a terrible time breathing so now I'm on oxygen for the first time. Wondering if its from all the drugs or just if my lungs and heart aren't used to me being able to get around and do much. My lungs have actually improved. Oxygen intake has gone from 36%-47% since April and Expansion from 56%-62%. I don't get oxygen when I get wore out at p/t and it drops when I move around but just fine if I sit. I'm able to get around now with a walker and a cane just fine I just get tired fast. Hope the pulmonogogist helps me figure that one out fast. I'm taking test for it now and ecco on my heart and ct scan with contrast for the lungs. What expirience have you guys had with heart and lungs and this disease?

doreen my cpk level was between 9000 and 19000 any given day depending on weather there was a storm or I just left the house and it was that way for a couple years, they just couldn't get it down and it took that long to find a doctor that knew what he was doing. I ended up so weak I was way to close to going into a facility, thank goodness for a wonderful teenage son who happens to be very tall and way strong for any teenager. He picked me up and took care of me. I couldn't roll in bed so he had to roll me and put pillows behind my back so I didn't break down and pick me up out of wheenchairs and put me in and wheel me around. It gets every single muscle in your body even my face muscles went so nobody recognized me. I turned into a rag doll but for some odd reason I could manage to slowly walk around the house with my walker and we set up all my seats to 25" off the ground so that I sould slide out and stand myself up. It feels great to walk around again but I still can't get out of a regular chair and I need my walker on outings. My cpk for the last 3 mo. has been beetween 225-300 a normal one for this test is 200. How awesome is that and my liver test and everything else that was off is all now normal or almost normal. Hope it stays that way I've been on a ton of what they call last resort dugs and weening off of them now.

Rheumatologist told us that antisynthetase syndrome points to significant lung disease. I am sure like many here, my husband has pulmonary fibrosis, UIP (usual interstitial pneumonitis) to be specific. He was found to have scarring in his lungs on CT scan that is not reversible. However, his lung function has remained fairly stable over the past year. He does not require oxygen at this point and his lung function is about 50%. Pulmonary hypertension is also a consideration with this disease and should definitely be looked into. The best test for that is echocardiogram or heart catheterization. Barbie - that was a really really high CPK level. Thank goodness it is returning to normal!!!!!

Hi Barbie. I am very new to this, but have had some positive results so far. I was diagnosed in September, and at that time, was unable to move, period. I needed help to get out of bed, move to the washroom etc. I have an amazing team of doctor's working with me. One of them (my neurologist) came from Boston, where he was specializing in these autoimmune diseases. I am very lucky to have him here in Calgary now The first thing to help me was huge doses of prednisone (1000 mg/day) for a week. That helped both with the muscles and the lungs. I am now on 100 mg/day, as well as 100mg/day of imuran/azathioprine, and IVIG every four weeks. The IVIG has already made a huge difference after just my first treatment. It made a 5% increase in my lung function (now up to 64%), and am walking quite well, although I do need a cane for balance. Yes, I do get tired pretty easily though. At least I can stand from a normal chair, and can walk up the stairs in my house. My neurologist feels the IVIG is my best hope at fighting this, and plans to have me on it as long as it takes. I too have the pulmonary fibrosis, with permanent scarring. That is what will probably cause the most damage long term. It never gets better, only worse. They did halt this before it damaged the heart though. It was close, as it was severely inflamed, but the prednisone brought that down before the damage occured. Keep doing testing, often. That is really the only way to stay on top of it. I do full blood work every 2 weeks to check liver, ck levels, etc. That way we hope to be able to keep on top of small changes, and adjust meds as required. So far, so good. I know it will be a tough long road ahead, but at least I am able to see a light at the end of this dark tunnel right now. Just keep taking it one day at a time, and know that even though you will never be like you used to be, it can get better. And a big pat on the back to that wonderful son of your's. You are lucky to have him. God Bless to us all, and keep up the good fight. Wayne

weiner66 were you that weak just this September or last year September. I have been recovering for 8 months now and still can't walk up stairs or get out of a regular chair yet but I can do other things much better and have gains every month. Your the first person on this earth that I have met then that was as weak as I got and its good to hear that you are doing so well. IVIG helped me a little too but it only stoped the disease from progressing and didn't improve me. My doctor found lots more poison (medicine) to put me on to help out though. Only a sense of humor helped out. Steriods and chemotherapy makes one look similar to Jabba The Hut. Did you also get really tight and stiff all over your mucles, tendons, and skin? I just got to a point now were I can bend my knees and get on my knees. It feels so good to be able to do that.

A big hug going out to my syndrome family. Barbie i know how you feel. You just want some understanding. The best information i have received so far is from this site. I don't understand myself how we all have the same thing but we are all different. I have had to use a cane but not a chair. At this point i have a lot of coughing again an my arms are week .I cant stand more than 30min without looking for somewhere to sit down but not due to muscle weakness its due to epidural lipomatosis something rare also. Just with talking to my family here when i go to see the doctor tomorrow i have a list of medication that i want to ask question about an a lot of ideas.He have been trying to take me off of the prednisone for a while with no success. at this point my medication are prednisone,azathioprine,gabapentin,bumetanide,hydroxychloroquine,butalbital diazepan,tramadol,calcium,d, mind you it does not help me walk any better. So far in my area i have not found anyone that have performed this kind back of surgery. Physical therapy have not help.With my lung problem nobody in rush to try it either.Everyday is a challenge for someone on this site and the only thing i can say everyone know how you feel an understand. Somebody have or going through the same thing.I hope we get a doctor soon that is somewhat of a specialist on some part of this syndrome. I always look forward to the good days that something this site help me with. Keep your head up!

I think from what I understand is Antisynthetase syndrome is just an overlap of multiple autoimune disorders. Mine is Scleroderma and they also found 2 muscle disorders also that affect both skelital and soft muscle and that is why I ended up so weak. Wish they could find out more about it. Good luck with your back problems onetouch.

Hi Onetouch. Don't forget, as long as you are immunosuppressed, there will be very few surgeons willing to operate. Very risky. Barbie, the antisynthetase does have some very specific symptons, including the antibodies found (I am JO-1 positive). The muscle problem is due to myopathy, which is part of the syndrome. ILD is common, but not guarenteed, as is the sleroderma. I have the lung issues, polymyositis, but thankfully no sleroderma. That is why we are all so different, yet the same, if ya know what I mean. God Bless, and take care. Wayne

I have have a form of AS that is not connected to other autoimmune diseases. It's the OJ subtype. It rapidly attacks my lung tissues. I have lots of weakness in my arms and hands and large hip muscles but it has been determined that this is due to the high dose prednisone, as well as having very inefficient lungs. I have been dreaming of a website where we could all list our AS by types, the problems it causes, complications, treatments we've tried and levels of effectiveness, as well as a list of the doctors treating us so that when folks are newly diagnosed, they and their doctors don't have to reinvent the wheel every time. This site and the information folks have posted has helped me save my life twice now and I think we need push research to the next level (any level!) so we make life as well as possible for us all. Kelly

Kelly, I dream of that website too, I have yet to find someone with my same antibody, I'm PL125, which is rare within the rare, ugh. I agree with you, its like they are always trying this or that, you never know if its the drug side effects or the disease sometimes!