wonup
Status: Three years and no flares. Off all drugs, and back to 100 percent.
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- Hi Everyone:Oh my gosh, it has been a while since I have checked in - I have been on the road for about a month. I own a business with my daughter, a retail store, and we had buying trips in Las Vegas (hot) and then Seattle (perfect weather). I had...
- Well Yikes! As some of you may recall, I have been finally diagnosed (after 10 months of calling it "polymyositis" with "Immune mediated necrotizing myopothy". The docs finally decided that because of three things:1) How quickly I went from an...
- Hi everyone! I have had some wonderful messages from a number of you wondering how I was doing, so I thought I'd do a quick update. Since being diagnised since August 1 with a necrotic (thus stubborn) form of Polymyositis, I spent 3 1/2 months in...
- Hi everyone: Insurance turned me down flat for Retuxin treatment. I'll be talking to Genentech tomorrow about covering treatments. Anybody been successful?
- Hi everyone, after 3 months of high dose prednisone, I had a bone density scan. I'm 130%above normal, but the Rheumy wants me on Fosomax until I get off prednisone. What is everyones experience with this drug?
- Hi everyone: When I started treatment for Polymyositis Aug. 5, my CPK was 9680.5 says later after Saline drips, it was 5000. It is now 3 months later and with 60mg a day prednisone, and now on 20mg a week on MTX, CPK is hanging stubbornly at 3400....
- Hi everyone, got my easylift seat in the mail today. It's a hydraulic seat lift that plugs in and goes from 2 inches up to 10. I tested it in two chairs and it gets me high enough to get out of them, saving my husbands back. So far so good. Also got...
- Great Doctor, looked about my daughters age. Knew her stuff! Because the muscle biopsy came back without the deep infiltrates of inflammatory cells of typical poly, it could be a marginal muscle sample. It could be a necrotic myopathy, caused by the...
- Hi Everyone: Well I've had this appointment for two months at OHSU in Portland. I guess they have an amazing myositis dept. there, even though I'm being treated by a Rheumy here in town, who has successfully treated poly and dermotamyositis patients...
- Hi everyone, well I am seriously thinking about ordering one of those powered lift seats. I can only get out of a chair that is 28 inches ~from floor to seat, mind you, which means my really tall drafting chair at my newly raised desk, or our really...
- Hey those of you with polymyositis, especially, but anyone with experience, I'm on 80 mg of prednisone, for 7 weeks now, and last Saturday night started on 10 mg of MTX. I am doing pill form MTX. I didn't have any noticeable side effects from MTX....
- Hi all: One of my newly frustrating experiences is using the walker or wheelchair or cane to go to places in various towns in Oregon, only to find their ADA bathrooms, parking, restaurant tables, doors, etc are not really ADA at all. I am thinking...
- Hi everyone, right now I'm in a wheelchair with polymyositis when I go out with my husband, and as it's the the first time as a disabled person I have some thoughts. 1. Just because it says disabled bathroom, doesn't mean it is.2. Friends who see...
- Hi everyone. Because I'm upped to 80 mg. Prednisone, and found taking it all at once at 6 am gave me the shakes, I tried doing 40 mg with food at 6am, and 40 mg with food 2 hours later. I feel better, but will that reduce the effectiveness of not...
- Hi everyone, just wrote a piece in advice portion of this message board, but wanted to say how much I appreciate the info I have been reading for the past 3 weeks on this website. I was diagnosed 3 weeks ago, been on60 mg of prednisone for 3 weeks....