Just got back from the RD. Nice dr and seems to be very low key but knowledgeable (sp?) Based on initial screening and symptoms, he said that it looks and sounds like RA but without the visible swelling or tenderness, at this point he is going to call it "undifferentiated inflammatory arthritis." He said that this typically becomes full blown RA within about three years if left untreated so he is trying me on Plaquenil (sp?) with prednisone for flare ups until it kicks in. Wants to see me back in 2 months.
So at this point, just wondering if this triggers any flags, BTDT scenarios, etc for any of you? Anyone else start out with UA and successfully treat it or start out there and it became RA anyway? Just trying to get a sense of where this fits into the big picture....
Sounds like a good RD visit. I hope the plaquenil helps you. I was dx JRA, but I am glad you found someone who will treat you and is trying to help you. I have heard of that dx before though.You've won part of the battle, Sunam. You've found a dr. who listens to you and takes the time to explain what's happening and starting you on timely treatment. You've made a great start in treating your arthritis. I'm on plaquenil and it's working for me. I started the med in Sept. It took me about 6 months to feel the benefit. Now my hands and wrists look normal again. Here's hoping that plaquenil will work for you too. FYI, try adding a probiotic and increase your fibre. I find that this helps with the GI issues.
When I first visited my RD, I didn't have any visible swelling either. He believed I had RA because all of my lab results were high, including RF and Anti-CCP, but he was able to make the official diagnosis of "Migratory Arthritis" because I lacked the visible signs.
I also started on Plaquenil with Prednisone for flares. It worked really great for a while. It only took about a year before I started having swelling and it stopped "migrating." (Though I still don't always swell.) That's when he changed the official diagnosis to RA.
Personally, I didn't care what he called it as long as he helped the pain go away. Rachel, do you mean you never have swelling or just not while you were at the doc?I'm right there with you. I don't have an official RA diagnosis, just "polyarthritis". I have been taking Mobic a while and just started on MTX.
Rachel-what are your labs? Especially RF and CCP?
KweenB- I'm surprised with your RF and CCP high your doc didn't give you RA dx. Especially the CCP since it is RA specific. Mine gave me the RA dx as soon as the CCP came back a high positive.
Sometimes i thought i had read that undifferentiated can go away. With swift and earliy treatment you have a good chance for recovery. I believe this is all good news in fact that he is treating you. Just because you have a high anti-ccp does not mean you are that sick yet. Just as you could get that sick left untreated. At least for a first appiontment that is better than alot of first appiontments go. [QUOTE=TheLa]Rachel-what are your labs? Especially RF and CCP?
KweenB- I'm surprised with your RF and CCP high your doc didn't give you RA dx. Especially the CCP since it is RA specific. Mine gave me the RA dx as soon as the CCP came back a high positive.
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Yeah, I'm not sure why. He said he knew I had RA because of the RF (330) and Anti-CCP (238). I guess it really didn't matter since he was treating me as if I did. That's all I cared about.
KweenB-You are so right. Getting treated and getting the right meds is all that really matters. It just confuses me that there is such disparity in this specialty. Why there isn't even a
little more cohesivness. I'm hoping that we are moving in that direction though.
TheLa, isn't their a standard that has to be met in order for their to be a dx? I think that you have to have at least 3(?) out of a list of 5(?) symptoms. I'm not sure of the numbers, but I know it's something like that.
I'm with you guys though. By the time I was dx'd, I was just so happy to call it ANYTHING so that I could start treatment.
Linncn2008-04-04 15:39:48Oh yeah...they drew bloodwork to do the complete workup (only the RF was done initially which came back low positive and is what sent me to the RD) The results should be back next week.
And no visible swelling. I FEEL swollen and hot but nothing that you can see or feel outside.
Boney,
He also mentioned the eye tests at 6-12 months.
R.
Sunam, I'm glad you have a dx, I waited so long for one myself. I will probably be starting Plaquinil in just over a week. I hope it works great for both of us.
I don't know about you but I'm looking forward to feeling like my old self again. It's been so long, I can't remember what exactly that feels like.
Sunam,
What you have experienced is quite normal. I was dx with undif polyarthritis for about a year before I was finally dx with RA last month. A small percent of RA is actually self-curing within the first few years, so that is good news. I was dx with RA without any swelling but lots of tender joints, and a few days after my dx I started to swell up in my thumb, and a month later, now my ankles, hips and knees. Dr's can tell if there is soft tissue swelling, and you can have RA without visible swelling. You have to give both plaquenil and the pred time to work - it could be your magic bullet.
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Linncn-Yes they do have that symptom standard, but the more I read people's experiences they seem to be all over the place. And their doctors interpretations seem to vary. Like the symmetry seems big with some docs, but many sites I have been on say it doesn't have to present symmetrically. I get the issues with most of the bloodwork i.e. that you can be positive, not have RA and visa versa. But if your RF and especially CCP are super high, I'm surprised there is hesitation. You know?
The Anti-CCP is fairly new and I'll bet sometime in the near future, it will be listed as one of the criteria for diagnosis. Maybe it might even replace the RF on the list?
kweenb2008-04-05 07:29:10It sounds like you have a great doctor. If you should show any of those missing symptoms, take some pictures and call him. Sometimes the onset of symptoms is simply a question of timing.
Welcome to the "Undifferentiated Inflammatory Polyarthritis Club" -- there seems to be a bunch of us who fall through the cracks. (My rd said I didn't have any clinical swelling either so he refused to call it RA). What is it with these numb-skulls, they don't seem to want to stick their neck out for anything they haven't seen themselves! My PCP who saw all the swelling still insists that I have RA -- he even told the orthopedist I have RA, when I met him at the emergency room with 2 broken bones (ankle + foot) that I gave myself as an April Fool's Day gift. At least your rd is giving you paquenil (its supose to be great for early mild RA symptoms) and predisone. My rd gave me one predisone shot in the butt (which was wonderful for about 5-6 weeks), Celebrex, a pat on the back, and "see you in 4 months". I read that sometimes mild RA doesn't have much or frequent clinical swelling -- sometimes flares occur months or even years apart --but, you can still have the stiffness and the pain. For 2 out of 10 RA sufferers that may be all there is. YA!!!! Why do so many of the medical papers and recognized arthritis groups tell you this, yet it seems like so many of the rd's didn't listen to that part of the lecture in rd school? Hopefully, the paquenil will do wonders for you!!! Hang in there, and try all those self help remedies like gentle exercise, a healthy diet and fish oil. We UIP Club members need to stick together and cheer each other on! Go girl!
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