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Old 01-28-2007, 04:29 AM   #1
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NHCasey HB User
Rhupus

Hi, I'm new here. I've been to the rheumy and he's tossed me in the "rhupus" box. I'm coming back with positives for rheumatoid arthritis and lupus. I have severe raynauds.

I've been posting on the RA boards, and now I'm here too. I feel like I don't belong anywhere. Confusing...but I feel like crap. I'm so tired, my hair is falling out, I have a rash on the crease of my cheeks going over my nose and eyes. I'm very swollen; my tongue, face, hands, ankles, knees and jaw. My joints hurt and are stiff.

I was once very active and now I push myself to go to work and spend my weekends in bed. I'm 45 and this is the pits. Okay, that's another thing, I'm whiney about it. I hate being a whiney person, but this isn't life.

I'm on Prednisone and the rheumy said he'll be adding something else next visit.

Am I alone? Is there anyone else out there that has both diseases?

Last edited by NHCasey; 01-28-2007 at 04:32 AM.

 
Old 01-28-2007, 07:39 AM   #2
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Re: Rhupus

Hi, NH Casey. Welcome!

I know someone for whom "rhupus" was suspected. She had a low positive RF but did NOT fulfill the ACR criteria for RA. But she DID fulfill the lupus ACR criteria. Since she'd tested positive for antiphospholipid syndrome, she was really rattled when her RF came back positive.

Have you seen the standard diagnostic criteria for RA? To me, they are even more complex than the lupus "4 of 11". And like the lupus criteria, they contain more than just bloodwork criteria. Thus I don't believe that ONLY a positive RF can create a Dx of RA.

Most important, this woman was told that a fair # of lupus patients can have a positive RF but WITHOUT the CLINICAL symptoms of RA.

So, has your rheumie told you which of the RA criteria he thinks you meet? And which of the lupus criteria he thinks you meet? And has he done X-rays to look for joint erosison?

Another thought: have you seen Dr. Daniel Wallace's lupus hardcover? He devotes an entire chapter to how lupus is differentiated from "close cousins" like RA, MCTD, scleroderma, myositis, vasculitis, etc. His book is in most libraries & bookstores. (Also, another author, Dr. Robert Lahita, may cover the same ground in his hardcovers.)

Final thought: I really don't think you are whining! People are nervous at the prospect of a single autoimmune. It's only rational, in my book, to want answers, and immediately if not sooner. Hang in there, OK?! Sympathetically, Vee

 
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Old 01-29-2007, 08:38 AM   #3
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Re: Rhupus

Hi NH Casey,

Yes there are others who have both DX's like me.I was Dx's with RA,SLE and Raynauds.You said your Dr. was going to add another medication my guess is Plaquenil(hydroxychlorquine)which is a antimalarial drug to treat inflammation,swelling and joint pain.Also for the Raynaud's I'm on Norvasc.

Yes it really sucks with all the stiffness,aches& pain,nausea and some days you just don't want to get out of bed so you need to listen to your body and just relax no sence in fighting it .You just never know when you wake up what your going to feel like.But you know once you get on the medications you'll feel better.

Take care Mary

 
Old 02-01-2007, 04:33 PM   #4
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Re: Rhupus

Thanks Vee and Mary for writing back.

I'm looking forward to my next appt. to ask some questions, but the rheumy sent me back some blood work results. The RF was 84 (0-15 normal), the
ANA HEP2 1/10240 (normal 0 ) speckled...the RNP AB 168 (normal 0-20) the
ANA ML 1/2560 (normal 0) speckled the ESR 25 (normal 0-18) and the WBC
1+ (normal 0)

When I spoke with him on the phone, he just said tests were positive for rheumatoid and Lupus.

I have hair loss, fatigue, rash on my face, sensitive to sun, ongoing low temp., wrists, knuckles, elbows, jaw, knees and feet joints hurt like crazy. They swell and turn red and are warm to the touch. My hands are basically useless, can't turn on a faucet or open a jar. I will say that the prednisone has helped a lot, but I still feel like crap. Weird, but my tongue swells too.

According to the doctor, it will be a process, probably a long one to find a mix of drugs that will work.

I will get the books to read up on Lupus. Thanks for the suggestion. Do either of you know if the above results point towards these diseases; one more than the other?

 
Old 02-01-2007, 06:40 PM   #5
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Re: Rhupus

Hi, Mary. Did you get a hardcopy of your lab results, to see all the tests that were run? Were these the only positives?

Here's the real "stinker" about bloodwork for lupus: while many antibodies may be seen, some are much more "specific" to lupus than others. For example, RF is considered by Dr. Wallace as having "poor" specificity for lupus. Anti-RNP is "fair". Only anti-ds-DNA & anti-Sm are "excellent". (He lists 16 things in one chart alone!)

So as I underatnd it, it's still the totality of symptoms & tests that counts, meaning the ACR "4 of 11" lupus criteria; and, likewise, RA has its own ACR criteria.

But here's another thought, due to what you just wrote about your anti-RNP result. There is a lupus-like "cousin" that features anti-RNP: it's called MCTD = mixed connective tissue disease. In MCTD, Dr. Wallace writes, you MUST have positive ANA *and* positive RNP. In addition to lupus-type symptoms, he says, MCTD also can cause puffy hands, heartburn, swallowing problems, Raynaud's (almost always), etc. Maybe you can find more on MCTD & anti-RNP via the search box (above).

I can't guess what your dr. will diagnose, but it does seem that you are on the right track & getting closer. Also, treatments for some of these conditions have some overlap. So whether you end up with one or multiple Dx'es, the most important thing is that you get "good enough" answers to get treatment for your symptoms.

I hope you post updates when you can. Meanwhile, I send you all my best wishes. Sincerely, Vee

 
Old 02-07-2007, 04:35 AM   #6
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Re: Rhupus

Hi, NHCasey. You'd asked earlier whether anyone had any idea whether your findings tilted towards SLE or RA. I couldn't say (I'm only a patient), but I did read recently about "anti-CCP". Apparently it's a new antibody test used in RA, etc., and it's considered a big improvement over the older RF test.

I also found a RHUPUS article that described an ongoing debate as to whether rhupus is (1) more SLE-like, with its own unique form of arthropathy, or (2) more RA-like. FYI, a very recent article I saw mentioned the anti-CCP test as being valuable in "rhupus" as well as in classic RA.

(For what this may be worth...)

How are you holding up? I hope you are making headway! Thinking of you, Vee

 
Old 02-07-2007, 04:33 PM   #7
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Re: Rhupus

Thanks Vee!

I'm hanging in there, puffy, swollen and in pain. However, can't complain because I was a lot worse prior to Prednisone. Also, I'm heading back to the rheumy tomorrow so I'm kind of excited about that. I'll be able to ask some questions and move on to another medication that will hopefully help out.

I truly want to thank you for writing back. It seems that you are always here to offer assistance on this board. Thanks Vee. It's refreshing to read your posts that are never negative, just informative. It seems that there are too many people to just talk about "how bad it is". I met someone at our health club last night that heard I was "the rhupus gal". She came over to say "Oh my god, how horrible, my sister has it and within 4 years she's deteriorated so much that she's in a wheelchair and useless at this point".
My eyes welled up and I was looking for a quick escape. After thinking about it more, I really started to feel bad for her sister; not only because of her situation but for having a sister that has deemed her "useless".

So, thanks Vee....

 
Old 02-07-2007, 04:35 PM   #8
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Re: Rhupus

Thanks Vee!

I'm hanging in there, puffy, swollen and in pain. However, can't complain because I was a lot worse prior to Prednisone. Also, I'm heading back to the rheumy tomorrow so I'm kind of excited about that. I'll be able to ask some questions and move on to another medication that will hopefully help out.

I truly want to thank you for writing back. It seems that you are always here to offer assistance on this board. It's refreshing to read your posts that are never negative, just informative. It seems that there are too many people that just talk about "how bad it is". I met someone at our health club last night that heard I was "the rhupus gal". She came over to say "Oh my god, how horrible, my sister has it and within 4 years she's deteriorated so much that she's in a wheelchair and useless at this point".
My eyes welled up and I was looking for a quick escape. After thinking about it more, I really started to feel bad for her sister; not only because of her situation but for having a sister that has deemed her "useless".

So, thanks Vee...you are an

 
Old 02-07-2007, 06:31 PM   #9
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Re: Rhupus

Dear NHCasey, You are very welcome! This morning I found a post-it I'd written a week or two ago, about the anti-CCP blood test, stuck to the side of my PC. (Must have missed it when housecleaning. )

You could no doubt find more info on this new blood test. What really caught my eye is that it's apparently also useful in estimating how a patient might fare, RA-wise, several years out, enabling drs. to get a better handle on what meds to prescribe right from the get-go. So the test sounds very useful indeed. Maybe someone here knows more & can tell us more about it?

What a foolish & socially inept woman at your health club! Hmmmmm... You were at a HEALTH CLUB, right? Hmmmm.... Everyone in gym clothes, right? She should have PUT A SOCK IN IT. Probably plenty available...

I had an incident with an instructor at my club shortly before being Dx'ed: during a yoga posture, she used her knee to flatten my back & I saw stars & yelped involuntarily. After class, a woman I didn't know followed me into the locker room to say how horrified she was, and I nearly wept with gratitude. We all need someone to step in & say something kind & bracing when something like this happens: a litle shared humanity can go a very long way.

Anyway, good luck with that rheumie appt. tomorrow. When you can, drop us a line & let us know how you fared, OK? Bye for now, from Vee

 
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