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- Hi everyone,I don't get on here much these days because frankly I don't like thinking about Polymyositis. But I have to!Anyways--My question is this: Do ANY of you have cardiomyopathy, atria fibrillation, or scarring on your heart? I would love to...
- Hi Everyone,I very rarely get on here anymore, because quite frankly I got very sick of thinking about Polymyositis. But I don't have that luxury anymore because I've been feeling bad!I was dx with PM in 2009 when my CPKs were 7200. They've gone up...
- I've been having a really hard time dealing with having PM in my relationships. Since I was diagnosed a few years ago, I've had a few short relationships, and only one very serious one. When I first meet people, I am very optimistic about my disease...
- Hi!I have a gluten sensitivity and an autoimmune disease, and I was wondering: what are some of the best resources you would recommend to someone who is going gluten free?Any advice on how to make gluten free fun for kids?Thank you!!
- Hey y'all,Just wondering if anyone else has had this experience.When I was dx, my CPK levels were very high (7,000+). At my sickest, they were over 14,000. At that level, I was significantly disabled.They've gone as low as 800-900, but right now I...
- Hi everyone! So happy to report that my CPKs are finally in the triple digits! From 1445 in June to 928 now :)(and, well, 14,000 a year ago...):)
- Here's something I have really been struggling with: how much do you tell your employers about your medical problems?On the one hand, if you don't say anything, you might be expected to do something you physically can't handle.On the other hand, if...
- Hey y'all,So I've been steadily improving over the past year on imuran and a lower dose of prednisone... a few ups and downs of course... but my CPK's were down from 14,000 to 4,000 last November, and had sort of leveled out there. At the beginning...
- Hey everyone, I haven't been on here in a long long time. Here's what's going on with me if you care to read!My PM symptoms began February 2009, and I was diagnosed May 2010 (CPK = 7,200). I started on 60mg prednisone. I got a lot better, but had...
- My grandmother died a few weeks ago, we were very close. But even as I type that there is a little voice in my head that tells me that isn't true, and that she isn't dead. I went to the funeral, I've cried a lot, but somehow I feel like she is just...
- Hey everyone. Just finishing up probably my 4th "all-nighter" while I prepare for finals and my senior thesis. Now I clearly see how important sleep is..... ahhhhhh never do this!!! Being sick and being a college student isn't working for me...
- Hi everyone. I have a muscle disease (polymyositis) and lately I have had really bad edema in my lower legs and ankles. It is extremely painful, I wake up in the morning feeling like my ankles are being crushed. My feet look like balloons. It...
- Hey y'all. It's been about a month and a half since I started imuran. So far my cpks are down from 14,000 to 5,000. Good sign. Everyone says I am looking better but I am a little concerned since although I feel better in a lot of ways and my arms...
- Hey everyone,I haven't been on much lately as I have no computer at the moment... but was wondering, has anyone else had problems with swollen feet or ankles? Mine, especially my left foot, are really swollen and purple. They feel bruised. I am on...
- Started Imuran today! Wish me luck. So far so good, a little tired. We shall see....