wonup
Status: Three years and no flares. Off all drugs, and back to 100 percent.
Mood:
Ok
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It's been three years since I've been out of a wheelchair with a necrotizing form of myositis caused by the statins in Red Rice Yeast supplements. Yes it contains a statin that I'm very allergic...
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It has been since August 2013 since I have made any entries, so it is time I did an update! I finally tapered off of Prednisone in August leaving me on MTX and Imuran, and finally tapered off of...
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I cannot believe I was just getting out of the hospital 1 year ago trying to get diagnosed with what was wrong - a very smart doctor figured out it was Polymyositis - later "Necrotizing Autoimmune...
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So good news after having blood panels done yesterday - and it only took 11 months! Finally all blood panels are normal. Glucose, ALT, AST, Aldolase; CPK has a new normal for me - maybe 50 points...
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It's Monday afternoon and pretty nice out for Oregon this time of year, and I had a bit of time so I thought I'd spend a moment talking about graduating from PT. From the time I was diagnosed in...
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Well heck! I was up at OHSU myositis center to check in with the doctor up there last Wednesday - a very smart, very capable 35 year old woman who is scary she knows so much. She studied under the...
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Ok, so time to get an update in between working on office stuff and getting ready to do some yard work while it's sunny. It's been a month, nearly, since I had an update on this site, and I have been...
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So the stubborn part of getting better has been the CPKs hovering between 3000 and 4000. The Rheumy and the Neuro were desperately trying to get me approved for Retuxin or Ivig.. Meanwhile, I had a...
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Well it has been a bit since updating this journal. I'm still waiting for Retuxin approval as CPKs are still at 3000. I have a blood test this week, so I'll see next Monday. I am still doing PT on...
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Well adding Imuran to MTX seems to have done the trick. I have another blood panel this week to double check the trend. I had hit back up to 4000CPK in December. 6weeks after adding 100mg of Imuran a...
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Hmmmm.Where to start....Fot 6 weeks my CPKs have been gping from 2700 to about 3900 last week. I got turned down from my insurance for Retuxin so my Rheumy added Imuran to the MTX I am taking....
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So where are we? Its two weeks after last entry, about, and several things are better. I can sit in a chair, bend over and tie my shoes. I drove around at the county fair parking lot, popping...
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Listening to the Beaver football game and deciding, in a leisurely way, what things have changed in two weeks since the last entry. The trend for function is up. I can put on shoes, which means I...
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Allrighty. week 15 since diagnoses and some milestones are FINALLY being met. I can get on my underpants, pants and socks. Not shoes yet, but that's next. I can mostly dry myself off, except for...
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I'm in a weird mental place right now, with being up for 2 to three hours at a time, then flat in bed for an hour or two, then up again. I can't sit or stand for too long because my glutes give out...
dd