I have just joined today and I have been sitting here reading the posts/replies and there is so much I can relate to. I was first diagnosed with fibromyalgia, then RA and I just learned a new word at my last Rheumatologist visit... Rupus! Never knew there was such a disease. My ANA keeps coming back positive, my RF was up at one time, but I think it has been showing up close to normal lately. I have joint pain and swelling, so much stiffness and fatigue, and my back is in constant pain when I am up and about. I am troubled with the red 'flush' across my cheeks and nose, especially if I go out into the sunlight or even when I talk on the phone for five minutes or more. So strange! I have been on pain meds and muscle relaxers for a while now. My rheumy asked me to study up on Plaquenil and see my optometrist before seeing her again and decide if I want to try it. Do any of you take it and have you had any serious side effects, especially with your vision? After reading up on it, it's kinda scarey thinking about taking it, but it sounds like it is a good medication for the severe pain, swelling and stiffness.
I see so many suffer with this every day pain and I wish you all the best.
Well, welcome! I've only heard Rupus once or twice...and only in passing. But I can guess. Ya know? We're an.........interesting crowd here. LoL to say the least! We also made another forum about RA, and we tend to bounce back and forth between the two of them. If you want to visit it, just let me know! :)
Thank you Katie and yes, I would like to visit the other forum.
Welcome to my world Judy...."rhupus"....I'm new too, and that's the box my rheumy has tossed me into. Still lots of tests out, but RA and Lupus came back strong. I basically feel like crap, swollen, joints don't move and I have the lovely rash on my face. How pretty. I'm just on prednisone to relieve the swelling but he mentioned going on methotroxate (sp?) next. He said it would be a long trial and error finding a mix of drugs to help. Has your rheumy said anything else?
I KNEW I just recently heard that term. Forgot that it was you Debrakay! LoL Sorry! You're both new and have the same thing! As weird as this is, that's AWESOME. At least you have each other, right? Judy, our forum is at www.rasushi.jconserv.net We'd love to have you! :)DebraKay, is the rash always on your face, or does it come and go? The problem I have is, if I go out into the sunlight, it appears; or if I talk on the phone for a long period, it happens. If I get hot, it happens. It first starts as stiffness in my neck, then shoulders, then the hot feeling on my face. Very uncomfortable. After about a half hour to an hour, it fades away. This can happen sometimes several times a day, sometimes it doesn't appear for several days... so weird, but very uncomfortable. Usually if I am out and about and it happens, people look at me like... gosh, your face looks like it has been burned!It's nice that you and Debrakay are here at the same time to share your rupus insights.
I posted something about plaquenil recently under a different topic. It should be on this page:
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=53 24&PN=1&TPN=6
I'd suggest seeing an opthalmologist rather than optometrist--I prefer a medical doctor for eye health, and save the optometrist for glasses. You'll see my report from my opthalmologist visit about plaquenil on that other post.
This is a journey. You're going to find strengths you didn't know you had.
Hi Judy!
Mine (lately) has been a rash on my cheeks going over my nose. Redness, isn't sore though. I've found a great makeup that covers it for the most part Clinique Shade 102 (I have fair skin). Anyway, it seems to cover it up good enough. Yes, I'm vain. If I go into the sun I get more of an intense prickly rash on my cheeks. Sorry yours is painful and burning. Of course sunscreen, sunscreen sunscreen and a hat.
My doc said that treatment for RA and Lupus are very similar, and after reading all the medications everyone is on, it does appear that some things work for some and not others, etc.
I thought the doctor was making a joke "rupus", but I think it was Deanna that said to research it, it does exist. Well, she was right, it's "rhupus" a crossover between both; a mixed connective tissue disease. Although i don't wish anyone to have any of these autoimmune diseases, I'm kind of glad there is someone else on here with this. It would be cool to see what your doctor says, etc., etc.
Anyway, have a safe New Year all........I'm off to swill down a couple martini's before I'm on Mtx?!!!!