tag:blogger.com,1999:blog-7928838697845211945.post8129201374594435435..comments2021-06-12T09:25:16.191-05:00Comments on Girl, Interrupted by Polymyositis: July 2012Unknownnoreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7928838697845211945.post-90471334987542188312012-10-10T20:05:46.607-05:002012-10-10T20:05:46.607-05:00Hello,
I'm sorry about the ILD diagnosis. I h...Hello,<br />I'm sorry about the ILD diagnosis. I have read about that as a frequent partner of Polymyositis, and it sounds like a tough situation. I am fortunate enough to say that to date, I don't have any concerns with ILD, although I do worry about it often. In fact, I had a nasty round of bronchitis over the last 2 months, and I thought that I might be experiencing the beginnings of some lung issues. Please keep me posted.<br />KHhttps://www.blogger.com/profile/16326836138466567684noreply@blogger.comtag:blogger.com,1999:blog-7928838697845211945.post-33104970689448015512012-10-10T20:02:22.518-05:002012-10-10T20:02:22.518-05:00Hello! I was anxious to get off as soon as possib...Hello! I was anxious to get off as soon as possible as well. However, I have adjusted that mindset a little as I've had chronic trouble getting below about 8 mgs. I've been telling myself that a chronic low dose may be ok, although 8 is still a bit high to sustain over years and years. I think my doctor and I would be happy if I could get under 5 without the CPK going on the old roller coaster. This disease is long term. Whatever treatment you do, it has to be able to keep you both healthy and happy for years and years. If 5 mgs of Prednisone means the difference between a fairly active, normal life and chronic inflammation, I'll take the Prednisone. KHhttps://www.blogger.com/profile/16326836138466567684noreply@blogger.comtag:blogger.com,1999:blog-7928838697845211945.post-8445817249641189652012-10-10T19:58:44.182-05:002012-10-10T19:58:44.182-05:00I got a local second opinion that basically said t...I got a local second opinion that basically said the same thing. I'm glad I did that locally before I trucked it across country on my own dime! KHhttps://www.blogger.com/profile/16326836138466567684noreply@blogger.comtag:blogger.com,1999:blog-7928838697845211945.post-40257963757612323802012-09-09T13:20:54.473-05:002012-09-09T13:20:54.473-05:00My husband was diagnosed with Polymiositis in May ...My husband was diagnosed with Polymiositis in May 2012 but I suspect that he has had it for a very long time. Started on Methotrexate to wean off of Prednisone in late July. Wound up for a week in the hospital in Auguest due to shortness of breath.<br />He now has been diagnosed with Interstitial Lung Disease. Oftentimes this comes along with Polymiositis. I am reading on the internet that there is not a lot of hope for him. Do you have any information regarding this? He has been a very active man for his whole life. Daily surfing, golfing, or working out. Sometimes all three. Now he has lost 25 pounds and can only surf 15 minutes and he is spent. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7928838697845211945.post-39223876469431418852012-08-01T16:35:52.310-05:002012-08-01T16:35:52.310-05:00Hi. I have Poly too. Just newly diagnosed as of ...Hi. I have Poly too. Just newly diagnosed as of April 2012. Actively researching how to give my immune system what it needs in order to get off Prednisone. Prednisone is so harmful. Let's compare notes.Lizhttps://www.blogger.com/profile/11797873691344542060noreply@blogger.comtag:blogger.com,1999:blog-7928838697845211945.post-5097649367287303682012-07-31T15:48:43.153-05:002012-07-31T15:48:43.153-05:00Hey. I have Poly and run marathons as well. I...Hey. I have Poly and run marathons as well. I'm not on predinsone, but i get Rituxan twice a year (I'm on methotrexate as well- too afraid of a flare to wean). I call 100% bull on flares related to running. I went to the NIH and they basically said "keep doing what you're doing" so I don't recommend going unless treatment isn't working.Anonymousnoreply@blogger.com