Having trouble with my RA and meds!

March 28, 2006

I was only diagnosed last November with lupus and RA, and I guess I

just assumed that I would be doing better already. I know it

sometimes takes awhile but I'm getting impatient and my doctor is

starting to worry me. My doctor has been consulting with other

rheumys regarding my situation. The problem is that I have been on

high doses of many things and since last november my sed rate has more

than tripled and continues to rise (and so does the pain!). I can't

take some of the best medications because of the lupus and many

allergies, so I am very limited in what meds I can take. My rheumy

sat me down today and told me that that I needed to get serious about

this ( I was there to pick up some short term disability papers).

This whole time I have been working 40+ hours as a computer operator,

coming home, making dinner, laundry and raising 2 amazining little

boys. I never rest even when I am in severe pain. I don't know my

limits yet, which often throughs me into a major flare,but the minute

I start feeling even a little bit better I throw myself into

overdrive. My doctor explained to me how important it is to rest and

let my body heal. I was told about a month ago that if we cant get my

ra under control that I would be in a wheelchair by my 27th birthday.

She later explained that it wasn't because I wouldn't be able to

walk, it was because I would be in so much pain I would need a

wheelchair. My worst pain is in my feet and I use a cane for it right

now. Then after our talk she told me that she wants me out of work for

at least 6 months and then " we'll talk " . My rheumy describes my RA as

progressing at a dangerously aggresive pace. Anybody know what that

means? I'm still new to this. I just don't understand any of this,

and I am very scared of how fast all this has happened. Don't get me

wrong, I am not new to RA. I am new to the diagnosis. I was

misdiagnosed with multiple scleroris almost 2 years ago now. I didn't

have any plaques on my brain, but I did on my spine as well as erosion

that my rheumy thinks is somewhat due to the RA. My doctor will be

giving me a MRI of my spine soon to see how it has changes. So very

sorry for the long post, I guess I just want someone to tell me they

have been through all this with the misdiagnosis and the rapid

progression. What does rapid progression of my RA mean for me?

Thanks for all your help and support. You guys have helped me through

this more than you can ever know. Holly

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