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Old 02-16-2006, 04:01 PM   #1
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Newly Diagnosed

Hi,
I was just diagnosed with lupus and been given a presription of hydroxychloroquine. I've been taking Naproxen for a couple of months now for my joint pain.
I don't seem to have any other symptoms other than the joint pain, which leaves me wondering how I could have lupus. I don't have any rashes, am I don't feel tired. I keep looking at lists of symptoms that I'm supposed to have and I don't have them.

I guess my question is, could I have lupus and only have the arthritic symptoms? I started getting pain in my hands and feet back in September and by Christmas it was in many more joints and I was put on Naproxen because the Advil I was taking just wasn't working. Once I went on the Naproxen I felt like I had my life back. I've been feeling pretty good since and was quite surprised to hear the doctor tell me that I have lupus.

Another question I have is about flare-ups. I don't understand what they are. Or prehaps I don't understand what happens between flare-ups. Was the onset of my joint pain a flare-up? If so, I must be still having one because the pain is still there,..... it's just hiding behind the drugs.

I probably have a million questions and that's part of my problem. I live in an area where there is only one rheumatologist and he speaks very fast with a very thick accent that I can't understand.

I know there aren't any doctors here, but it would sure be helpful if I could first clear up a few of my bigger questions.

Thanks.

 
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Old 02-16-2006, 05:36 PM   #2
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Re: Newly Diagnosed

Hi, Ludwigia. Welcome! Your question is probably rare here, in that so many people think they have lupus & are told they don't, and here your situation is the opposite. Anyway, were the following done prior to your getting the Dx--

* a detailed lifetime medical history taken?
* bloodwork, including various *specialized* tests? For example, ANA, anti-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, etc. etc. There are about 16 "anti" & complement tests often called for when lupus is suspected, in addition to run-of-the-mill CBC, etc.
* urine tests?
* several or more of the criteria met? See the "sticky post" at the front of the Board, the one that contains the "4 of 11" ACR criteria for this list.
* a lupus band test (a skin punch that is used to see if there is immune "junk" building up between the dermal & epidermal layers of skin, which is a hallmark of lupus)?

I *think* lupus could be Dx'ed with just obvious arthritis, IF other less obvious things, like in your bloodwork, indicated its presence. You don't require a rash; many people do NOT get rashes. I wish too that your dr. would give you a clearer explanation. And you could request copies of your labs, too.

I hope others chip in soon on this. Best wishes, Vee (I was Dx'ed with the subacute cutaneous "subset", positive for anti-Ro, negative for ANA, with arthritis, photosensitivity, nonscarring torso rashes, chronic anemia & positive lupus band test & too many varied problems over many years to be believed. I was 47 at time of Dx but had had some of these problems since childhood!)

Last edited by VeeJ; 02-16-2006 at 05:41 PM. Reason: format

 
Old 02-16-2006, 06:10 PM   #3
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Re: Newly Diagnosed

Thanks Vee. I have had many blood tests done and I my ANA is positive. Not sure what else was tested. I had high liver enzymes too, but they dropped back down to normal after I got off all the Advil, (1- to 12 a day for about 12 weeks.)

Actually I checked out the 11 symptoms many times since all of this began and all I can match is the joint pain and the positve ANA. Perhaps you're right and there are other indications in my blood work that I have it.

I guess I'm just hoping it doesn't get worse.

 
Old 02-17-2006, 04:59 AM   #4
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Re: Newly Diagnosed

Ludwigia, Can you ask for copies of your labwork? I think you are legally entitled to them in the U.S. That doesn't mean drs. are always 100% happy when we ask, though. One of mine stopped speaking to me when I asked, so I returned the favor & switched drs.

The good news is that even if your dr. zero'ed in with 100% accuracy, lupus can & does stay mild in many people.

Also, were you advised to take sun-protective measures (just wondering)?

With my best wishes, Vee

 
Old 02-17-2006, 11:40 AM   #5
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Re: Newly Diagnosed

Hi Vee,
I suppose I could ask my GP for copies; I believe we're entitled to them in Canada too. I don't want to step on the rheumatologists toes. He's the only one within 400 miles of here.

I was advised about using sunscreen and that may be a challenge for me. I love the garden. Do you know if there is one that will last all day?

"lupus can & does stay mild in many people." That is very good to hear.

Thanks

 
Old 02-17-2006, 01:37 PM   #6
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Re: Newly Diagnosed

Hi, Ludwigia, I don't know of any all-day sunscreens, alas. I think many are pretty good, as long as they are at least 15 SPF, you reapply them every few hours (at least), and you take special care if you are (sorry!) perspiring.

Also recommended: hats (not gauzy or of loosely woven fabric) and with a good brim. Long sleeves and pantlegs, fabric of tight weave. Avoidance of midday sun, if need be (10AM to 3PM, or so). Extra care near water, due to reflection augmenting the sun's effects.

I've tried a waterproof brand on my face, but it messed up my complexion (such as it is at my age ).

I found these things out the hard way, and by reading articles and past advice shared here. I continued wearing sun *visors*, not realizing I could get discoid lesions on my scalp & permanently lose hair. So said my rheumie. I'd failed to understand that with SCLE lesions, I was also "eligible" for discoid (scarring) lesions. And I did get one, right on my nose. Lesson learned...

Maybe there are CANADIAN READERS here who can comment on the ebst "technique" for requesting lab copies?

I hope the hydroxychloroquine helps your arthritis! Best wishes, Vee

 
Old 02-18-2006, 04:35 AM   #7
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Re: Newly Diagnosed

Hi Vee. Thanks for the info.

I have an appointment with my GP on March 22 and will ask him about my tests. All of my bloodwork was done through him and he did write down a few numbers for me when they thought I had hemochromatosis. Ferritin 71, TIBC 54, Serum Fe 30.

Do you know of any specific test results that I should ask for?

What do people do who don't have internet friends??? Thanks again.

 
Old 02-18-2006, 06:12 AM   #8
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Re: Newly Diagnosed

Ludwigia, See the first "sticky post" on the Board, titled "Answers to Lupus Test Results Questions". There's a source in it; open that source in your browser to find names & descriptions of various blood tests for autoantibodies, complement levels, etc.

But that first sticky post covers just bloodwork. The *overall* criteria for dx'ing lupus is described in another of the "sticky posts", so ypu could review it. You need "4" of the "11", at some time in your life, not necessarily all at once, to have SYSTEMIC lupus. But you may have fewer than four to be Dx'ed with a lesser lupus "subset" (mainly I'm thinking of DLE & SCLE here.)

One imagines your dr. used these standard blood tests and standard criteria to come up with a Dx. Some drs. here say very little, too, as the possibility becomes clearer. So it can be a real shock to get such news out of the blue. My suburban drs. did NOT tell me what they suspected. Instead, the hospital radiologist doing a kidney function test blurted it out, and I almost fell off the table, I was that surprised.

Anyway, post again, if you like, after you dig into those "stickies". Bye for now, Vee

 
Old 02-27-2006, 05:51 AM   #9
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Re: Newly Diagnosed

I thought they took Naproxen off market....

 
Old 03-24-2006, 08:20 PM   #10
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Re: Newly Diagnosed

When I first started having symptoms it started in my hands. Not my fingers at first, it was my hands and wrists. Then it moved into my shoulders. The pain was very intense. At first they thought I had arthritis and put me on Prednisone. Immediately my pain was gone so of course they were pretty sure they were right. My doctor wanted to make sure though and sent me to a rheumatologist to test me for Lupus. After some bloodwork I was finally diagnosed. My symptoms eventually moved on to other joints but when they finally got me on the right medicines the pain is almost gonemost of the time but usually there a little in some places. The only symptoms I have ever had besides joint pain was one time I got a sunburn and it turned into this horrible itch (like a bad rash without the bumps) and another time I guess my lungs must have been inflamed and swollen because I had these horrible chest pains when I breathed and laid down and also a fever. In the 8 years since I've been diagnosed those are the only other symptoms besides joint pain that I've had and also the last few years I get tired easier...especially since I work nights.

 
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