Had my first rheumey appt. The doctor said my initial blood work came back with positive tests pointing to rheumatoid arthritis, however, it also had positive tests pointing to lupus. He said where I have Raynauds disease, that usually goes along with lupus, but my symptoms, examination and blood work point to rheumatoid arthritis.
So I'm confused. He said the treatment is very close for both diseases. For now he has me on Prednisone and he had me go through more blood tests...lots of them, and then X-Rays.
I'm such a type "A" person. I find a problem, I find a solution. I'm black & white, not grey. I'm also not good at waiting. I guess I can't control this situation, I'll have to find patience. YIKES....
Did anyone else start out like this?
I'm guessing that you have a positive ANA, which points toBoy do I know about the new gray area I had to live with and after two years I am handling waiting much better.
I started with all of the symptoms but all labs were neg. It took a while for a definate dx for RA and am still waiting for a definate dx for PA as well. It seems that AI diseases are one big waiting game. Wait 3 or 4 months to see if every different med is going to help, long wait for SSDI to get me an appt. with an ALJ and so on.
I have learned a lot about patience in the last 2 years and will probably need to learn more.
Take care,
Thanks for writing back Sara and Bonny. I was lucky to get in with a top doctor in Boston. He's deemed me having "rupus" for now, lol. My ANA was extremely high but truly besides the hair loss anything I read about RA is me. He likes to start of with Prednisone to bring down the inflammation and make things more comfortable. He said once that is done, it's trial and error to see what works best for me. He did mention a few of the drugs I've seen written on here which will be next. He didn't even schedule a follow-up appointment yet. He wants me to call him on Friday to see how the Presdnisone is working. If it hasn't done anything, he wants me in next week. If it's working, then I can wait until after vacation. (Turks & Caicos in January)
So....the waiting game. I liked him though. And his staff said he's the kind of doctor that you can call and say you feel like crap and he'll say...come on in, I'll fit you. Guess that's the big positive so far.
I'm happy to be able to post here, although I'm sure my posts are boring, it's nice to get this off of my chest. And I really don't want to go on and on about this stuff with my friends. I don't want to be "the sick friend". As it is, I've already had my best buddy put my sox and & shoes on, make my bed, open my drinks, etc, etc. She's a peach but I don't want to lose a friendship by constantly whining about RA, or "Rupus", lol.
p.s. Bonny...I'm not good at the abreviations, lol....I'll get there I'm sure.
All of us have had to learn to accept a certain degree of gray area with this disease. Rarely is anything clean cut with this thing.....even when you get a firm Dx the first day.
Once you cross that hurdle; your next one will be waiting to find an acurate treatment. That too is hit or miss. A process of elimination I suppose you can say. Sometimes it takes years to find a combination that works.
Hang in there....you'll get use to a new way of life eventually. Hopefully you're well on your way toward getting the help you need....but it won't happen over night.
Welcome to AI.
Debrakay, glad you liked your doctor.
I might wonder if he's using prednisone as a diagnostic tool, since some things that act like RA (like fibromyalgia) don't respond to prednisone. My doc used prednisone for a diagnostic tool, in addition to bringing some control to the situation right off. But they use prednisone regularly to treat lupus too, so if he's trying to get a distinction between lupus and RA, I guess he's not doing it through prednisone.
Wouldn't it be nice to have a friendly rheumy with time on his hands (ha) on this board to make sense of some of these things for us?
Sounds like you'll be taking something else very soon, though I'm puzzled, just because I'm not any kind of expert, at why he's waiting on the prednisone to decide what to give you.
The plaquenil I'm taking for RA is also given for lupus. I think they also give methotrexate (called mtx on this board and very frequenly given for RA) for Lupus, and maybe some of the other DMARD drugs. So while it may be a little convenient to be able to try out some drugs that can help either or both conditions, I know it will be troubling to wait to get a definitive diagnosis on your particular string of conditions. I hope the diagnosis comes for you soon.
Anyway, I hope you get fast and significant relief from the prednisone. Maybe you'll get to feel good for the holidays. What a gift that will be.
Well, I took Prednisone yesterday and today, and by the time I got home from work I could actually touch my fingertips to my palms of my hands. Also my husband said my face has gone down. I'm thrilled. How can Prednisone work that quickly???
The doctor doesn't want to try anything else yet because he had all of my blood work done again. He wants to compare the two of them in addition to some new ones he ordered and go from there. His goal was to make me more comfortable while the tests come back. He mentioned MTX and thought that would be the next thing. He also said that the treatment for Lupus and RA are very similar, to begin with anyway.
I just can't believe that my fingers are bending ...I'm absolutely thrilled. Maybe by Friday I can actually use them???
I really appreciate you all writing back. It's nice to find people that "get it".