Hello, I'm 36 yrs old. Originally dx w RA in 2009 and now as of 4 SMS ago SLE. I think I'm in bit of shock. Is there anyone out there who started w RA? I was on remix ads infusions for over a yr. now I'm on plaquenil w 400 mg daily.
04-13-2013, 06:11 PM
I did. Of course, they've gone back and forth with their opinions, depending upon who I talked to. One doc said I had RA in 1991. Another said I didn't have RA in about 1995 ("I don't know what you have, but it's not RA"). Another doc said (again) I had RA in 1999. Then they started "piling-on", adding something new every year it seemed... lol - then the hematologist said SLE in 2009, and a rheumy said it last year. The rheumy thinks I've had SLE all along, it just wasn't "active" all the time until I started treatment for my CVID.
btw, Welcome to the WHL family.
Thank you for responding...I feel overwhelmed. Ive been living w pain everyday for years now. I keep hearing this word "remission" but the pain never goes away. I have days that are better than others but towards the end of a day I feel like a truck has plowed me down. My Dr. Doesn't really address this w me. I don't think "they" really get it.
04-18-2013, 02:16 PM
My current rheumy surmises that I've probably had lupus all along, and that it was "mild" until about 5 or 6 years ago. My hands & knees were bad back in the early 90's, but I was basically fine after about 96, with just little nigglies irritating me, until I fell off a ladder, then it's been basically downhill since, until I found my pcp, this current rheumy, and my hematologist. Between the 3 of them, I feel like there is a light at the end of the tunnel. I'm just hoping it's not another train coming the other way... lol
As to your doc not "getting it", be sure and ask him questions, and don't just let his answers stand pat. I had one rheumy that was a snob, and another that I thought at first was a snob, but it turned out, he just assumed that I knew what he was talking about. When I got to asking questions, he'd spend more time with me and really get into the discussion. Unfortunately, my insurance changed back then, and I had to go elsewhere. If your doc can't help you better, you might need to look elsewhere. However, be sure and try your current one further. Be sure you're accurate with describing your symptoms, and don't be afraid to tell him if things are getting depressing, with no sign of help. It's OK to feel frustrated, 'cause it IS frustrating. You need to stress that to the doc, and see if maybe he's got another avenue to try to help you.