Just thought i would check in. It seems that things have been quiet around here. I hope that is a good thing. My husband continues with the Cellcept but is currently having skin problems. Almost like cystic type bumps on face and neck. Has anyone else had this occur with Cellcept. Don't know if the dermatomyositis part is coming to the forefront again or just side effect from Cellcept which he has been on for almost two years. Hope everyone is doing OK. Regards, Dee

I've been on cellcept (3000 mg) for a year now. Have not had skin related side effects. Sorry he's going through that. I too am in the midst of trying to figure out if some new problems are disease or medication related. Such a wild goose chase. I've been having trouble flexing my fingers the past 6 weeks. My hands have been painful and very weak, with tingling. I wondered if it was nerve problems from the weight of my oxygen in a backpack. But then for the first time I had an elevated CK result. I supposedly have the OJ subtype of AS which doesn't have myositis, just aggressive with the lungs. They're not sure these problems are myositis as that hits the proximal muscles and this is only distal in the arms. Trying to figure out if it's medication related (thyroid, cellcept, bactrim), an odd presentation of myositis or some other illness. Bumped me back up on the prednisone and ten days in its helping (ck dropping, less pain). Having EMG study done next week and possible muscle biopsy. Though they did say that because the prednisone was decreasing the problem, it could also make it harder to diagnose. juggling getting the docs & tests fast enough while slowing down the damage at the same time. Just hoping for some answers so we can progress with treatments. Either way they're debating between rituximab and ivig. The warnings on the rituximab scare me so I need to do more research. Hoping to find a way to be more stable and trying to enjoy summer with my kids.

Hi Kelly. I also have Jo1 antisynthetase, and I can tell you that myositis can, and generally is a big part of it. I have polymyositis. It has affected all the muscles in my body. Mine started in the hands and fingers, but was initially dismissed as part of getting older, and "maybe spending too much time on the computer". It is pretty obvious to me that with you having elevated ck levels, and the pain and weakness in your fingers that has been going away with the prednisone, that there is a very good likely-hood that you have polymyositis. both the emg and the biopsy should have very little problem showing it, even while being on prednisone. I have had the biopsy, as well as several emg's. Even after almost a year of prednisone, the emg still shows the muscle "damage" As far as the IVIG goes, if you can get it, I would personally recommend it. It is a different type of treatment then the rituximab. Rituximab is an immunosuppressent. It is meant to lower your immune system, thus preventing it from attacking your body. The IVIG, from what they can figure, actually attaches itself to the antibodies (in our case JO1) and renders them inneffective. I am currently on Methotrexate as my immunosuppresent, with 3 days of IVIG infussions every 3 weeks. I can tell you, even though the methotrexate really helps, I would not be walking well without the IVIG. I think you will discover that most people taking it would not be willing to stop it for anything. We use Privigen brand here in Canada, and there are very few problems. Generally the only side effect to it is when you are actually have the treatment, you can have a headache if administered to quickly. Tylenol takes care of the problem..... I have been taking the IVIG for almost a year now, and will probably be taking it for the rest of my life. IVIG usually lasts approximately 4 weeks in the body, thus having the treatment on a regular long term basis. Even though I am still unable to work due to my ILD, I am able to be relatively stable, and have been able to "enjoy" the summer so far. The heat really exhausts me quickly, but I try to rest lots, and carefully choose what activities to do. Hope this helps you. Take care and God Bless. Wayne

Wayne, Thank you for your reply. Though I wish it hadn't happened to you, I am glad to know yours started in the hands too. I keep reminding my docs that nothing about my case has ever fit the typical pattern, so don't dismiss it. Over the last 5 weeks they've run me through the gauntlet of tests, ruling out other causes. They finally did an MRI on my hands and forearms (which totally lit up with muscle inflammation and edema) and based on this did a muscle biopsy last week. Currently waiting for those results so we can decide treatment. I am very interested in the IVIG and am pushing for that as our next line of attack. Mu lungs are slightly improved being back on the higher prednisone the past two months, plus I've been doing another round of pulmonary rehab. Between pulm rehab and doctor appts trying to figure out this hand and arm weakness, we've been joking that I'm legally required to spend at least 3 days a week in a medical facility. Still managing to get in lotsof good time with my kids and enjoy some summer activities. Have to make the best of it! Kelly