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rvrmoon  Member Icon
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Frustrated but coping

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  11989.1
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  rvrmoon  Member Icon
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  Oct-21 2:27 am
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Hello everyone, I have been an on again and off again IVillager. I have always enjoyed the discussions here and I was hoping to find out if anyone else has what I have. I have recently been diagnosed with Sero-Negative Rheumatoid Arthritis. I haven't been able to find much information on it. It seems that I don't have the typical markers for Rheumatoid, but my inflammation markers are quite high. Doctors thought at first that it was my weight, but I lost 45 pounds in the year that I have been seeing the Rheumatologist and he can now definitely say that the inflammation is not related to my weight.

He has just put me on Plaquenil for now to see how I respond to it. So far my hands, ankles and feet are affected. Sometimes my hips hurt, especially if I have been throwing ceramics for a while. Anyway I digress, if anyone has been diagnosed or knows someone that has been diagnosed with what I've got and knows where to look up information on it I would be so very appreciative.

Thank you

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Frustrated but coping

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  11989.2 in response to 11989.1
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  rvrmoon  Member Icon
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  Oct-21 3:47 pm
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Hi rvrmoon!  I'm glad you found us.  There are several people on this board that have seronegative RA and at least one with psoriatic arthritis, which also presents as seronegative.  15-20% of those with RA test seronegative.  It's also possible that, if you're in the very earliest stages of RA, you would not test positive so your rheumy might retest at some time in the future.

The one difference that medical studies have found is that people with seronegative rheumatoid arthritis seem to have less overall joint erosion and damage than people who test positive for the antibody, and usually do not develop nodules under the skin, as the positive group tends to do. Otherwise, the symptoms and progress of the disease appears to be similar in both groups. So, if you test negative for the antibody, you will still likely experience joint swelling, stiffness, and damage, but not to as great a degree as those who test positive.

Plaquenil is a fine medication to start off with.  I've been taking it for a number of years, along with sulfasalazine and a low dose of prednisone.  It's a relatively benign RA drug, normally without many side effects.  However, in rare instances, it can affect your eyes, so you should get an eye exam soon and every 6 months to 1 year thereafter.  Also, plaquenil can take up to 2 months to fully kick in, so don't get discouraged if you don't feel better right away.  If the plaquenil doesn't help you enough, there are lots of other meds to try.

I hope you'll keep in touch and let us know how you're doing and you are always welcome to ask questions, make comments or just stop by to say hello.  We'll always try to help!

Molly
co-CL Arthritis Central

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Frustrated but coping

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  11989.3 in response to 11989.1
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  dlandry1  Member Icon
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  rvrmoon  Member Icon
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  Oct-21 10:14 pm
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Hi and welcome to the board. This is a great bunch of people with a lot of useful information as well as support.

I'm also one of the 20% that don't test positive for RA but symptoms and family history has put me in the RA category. I was tested in 2000 and at the time the rheumatologist said there was something auto-immune going on but not sure what and since it wasn't life threatening no need for life threatening drugs. In 2008 I was having severe joint swelling with nodules on my wrists, hands and elbows that would last a few days to a week then go away. That's what prompted my doc at the time to test and again it was negative but with the nodules and swelling as well as a family history of auto-immune diseases and 2 cousins with definite RA I was diagnosed and late last year started on Methotrexate which for me has been great. My hands rarely swell and I haven't had a nodule since being on the drug.

rvrmoon  Member Icon
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Frustrated but coping

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  11989.4 in response to 11989.3
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  rvrmoon  Member Icon
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  dlandry1  Member Icon
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  Oct-22 2:36 am
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Thanks for the replies. It's been quite a crazy year. I knew over two years ago something was wrong and say the rheumy at that time but he wasn't sure, he thought the inflammation was related to my weight. Well, dummy me I didn't do my 3 month follow-up. Late last year I decided to go back and have been seeing him every three months for about a year and my weight has gone down, but the inflammation has increased.

My Grandmother had Rheumatoid so bad that they actually thought she had lupus. She even had a flare so bad that she ended up going to the emergency room, this was back in 78-79 so treatments weren't as sophisticated as they are now. My mom has now been diagnosed as well as my brother, so I wasn't really surprised when the doc finally gave me a diagnosis last month.

My Rheumy also got me a referral for seeing the ophthalmologist, but I go to the eye doctor anyway, every 6 months because I have such a bad astigmatism in my left eye I could be in danger of a detached retina. So having my eyes checked will be no big deal for me. So far it's been a week on the Plaquenil and my hands are slowly feeling better. I also have a muscle spur in my left ankle, which has been there for about a year and a half, and I could possibly have it the rest of my life.

Hubby is a wonderful guy and doesn't let me get down on myself when some of the little things are hard to do. Anyway, it's good to have a place to talk about this because none of my friends really understand it and what's going on with me.

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Frustrated but coping

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  11989.5 in response to 11989.4
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  rvrmoon  Member Icon
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  Oct-22 3:10 pm
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Hiya Rv :)  I'm so glad you stopped by again.  :)  Dee is right -- this is a great board with lots of supportive people.  The experts are positive that there's a genetic component to RA and you certain have a lot of it in your family.  I'm glad you were finally diagnosed so you get on the road to feeling better.  It's wonderful that the Plaquenil is already starting to work for you.

Having a good support system is extremely helpful in dealing with RA.  Your husband sounds like a prize.  :)  I hope you'll free to come here anytime, for any reason.  We're all more than willing to assist you in your journey with RA any way we can.

Molly
co-CL Arthritis Central

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