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Old 07-14-2004, 07:09 AM   #1
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Could I have Lupus?

My appointment with the Rheumatologist isn't for another month. I was wondering if I could have Lupus? Does any of this sound familiar?

Tests:

Elevated ESR
Positive ANA

Symptoms:

Moderate to severe joint pain that last for just a few days in a joint before migrating to another. Signs of redness and slight swelling seen only in the joints of the hands. Effects shoulders, wrists, hips, elbows, thumbs, and pinkey fingers. The pain lasts for about a week, then I'll have a day or two of remission before it all starts again.

Tenderness and/or swelling in the lymph nodes under the jaw. Comes and goes.

Fatigue, fatigue, and more fatigue!

Cheri.

 
Old 07-14-2004, 11:52 AM   #2
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Re: Could I have Lupus?

Quote:
Originally Posted by creinha
My appointment with the Rheumatologist isn't for another month. I was wondering if I could have Lupus? Does any of this sound familiar?

Tests:

Elevated ESR
Positive ANA

Symptoms:

Moderate to severe joint pain that last for just a few days in a joint before migrating to another. Signs of redness and slight swelling seen only in the joints of the hands. Effects shoulders, wrists, hips, elbows, thumbs, and pinkey fingers. The pain lasts for about a week, then I'll have a day or two of remission before it all starts again.

Tenderness and/or swelling in the lymph nodes under the jaw. Comes and goes.

Fatigue, fatigue, and more fatigue!

Cheri.

Hi Cheri,

We are not medical doctors here and I certainly am not... but.....

You didn't say -- what the the titer of your ANA (i.e. low or high titer?) - very Low postive starts at 1:40 & it can up from there to !:80 to 1:160 to 1:320 ..... and all the way up to 1:2560 or higher (very high). What was the pattern - speckled, homogenous, neucleor..? You always have a right to your test results and to have them explained to you. And is this the first time you've had a positive ana? ANA & sed rate are both very non-specific blood test (meaning could be many things) and a postive one - depending on the titer, pattern and chroncity - can mean nothing more than inflammation going on somewhere in your body (esp. at lower levels) or a number of other illnesses such as RA (theumatoid arthritis) lupus or some other CTD (connective tissue disease) and etc, etc, etc... Fatique (even strong fatique at times) is in most all illnesses.

The symptoms you posted above sound to me (at this point unless there is a lot more you haven't listed) more like RA or maybe Sjogren's if anything... but, as said, depends on a whole lot of other things. Have you had any other more indepth tests for autommune disease yet? - like anti-dsdna, RO, SSA, SSB, LA, etc? (look up lab tests in lupus) But does sound like someone is on the right track and (your primary care doc?) referred you to a rheumatologist who will be able to explain mucho better the possibilites seen in a positive ana and to order any follow-up tests to determine what may or may not be going on. Both tests can change dramatically from low positive to high positive and even back to negative from week to week --- even day to day.

Angelic Brat (senior veteran on these boards) put 2 permanent posts re: lupus, it's symptoms, etc, and anti-phospholipid sydrome at the beginning of this lupus board --- a very good place to start if you have not already read them...=)

Shorter answer - yeah... could be... but a VERY BIG BUT...with just those 2 tests only being positive. Would help if you can get the specific results and post them... No doctor will diagnose on just those 2 positive but very non-specific tests. You also need to meet other criteria as Angelic listed in first post. If you've read many posts here, you'll find it is very difficult to diagnose lupus for even many specialists..! But again, with only what you posted above, sounds more like rheumatoid arthritis or sjogren's (cause as said, could be too many other things - Need to ask your doc =). Do you have very dry eyes and/or mouth? Those are common in sjogren's (another autoimmune disease with similar symptoms to lupus) and the swollen/tender glands under your jaw are also symptoms of sjogren's (but they too are seen in lots of other things..)

Again... the rheumatologist will be able to answer your questions mucho better and hopefully you are going to one who will....! (Now that's a whole 'nother...too long story...!) Hopefully, you'll get some solid and answers that will help you much more when you see the rheumy next month =) If you get a "jerk" who just brushes you off... keep trying..! Again, read just a few of these posts - we've all.....been there..! You can really gain a lot of knowledge and insight just by reading other posts here... I'm glad I found them...!

Hope this helps just a little - a long answer to your short question.. But in order to answer your question with more than just saying ... sure you could and sure it couldn't too... had to be long =)

take care, hewie

 
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Old 07-14-2004, 02:32 PM   #3
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Re: Could I have Lupus?

Hi, Cheri.

I agree with all Hewie wrote to you. I'll just add a couple of thoughts in a different vein.

The "LUPUS CRITERIA sticky posts" at the beginning of this site, put up by AngelicBrat, truly are worth reading. One lists the standard "4 of 11", the criteria necessary for a Dx of systemic lupus (SLE). The odd thing about this list is that the criteria do NOT have to be met simultaneously. Once an item has been checked off, that item should stay checked off for life. Many drs. do NOT "get" this important point.

Which leads to the next thought: GETTING READY FOR YOUR APPT. History is thus important, and a really good rheumie will take a meticulous *lifelong* medical history. You could jot down key events & rough dates as best you're able, including more detail for the recent past.

Another thought: BOARDS SUCH AS THESE. Many drs. do not admire Internet browsing... Just out of prudence, esp. when first meeting a dr., you may want to omit mention of same.

If you have ever had rashes, these could be an important diagnostic tool in lupus. Many (but by no means all) lupus patients have rashes; there are several types specific to the disease.

I hope you have a good appt. and get a sense right away of making progress. You didn't say "how long has this been going on" (like that old song). But even if it's a new thing, the fatigue alone can drive you to the brink. We can sympathize big-time. Drop a line whenever you feel like it, OK? With all my best wishes, Vee P.S. Hang in there!

 
Old 07-14-2004, 05:06 PM   #4
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Re: Could I have Lupus?

Another voice, same point of view. Your symptoms are way to vague for any of us to say one way or another. They sound more like a hypothyroid problem than anything else but RA can cause the same things too. I happen to have all three of these wonderful things so I can tell U in combination they R really a pain.

You need more Dr. input to form any kind of dx. In the mean time, try not to let your imagination run away with you. We often imagine far worse than it really turns out to be.

May God Bless You
Patience 50

 
Old 07-15-2004, 05:08 AM   #5
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Re: Could I have Lupus?

Hi again...

I just wanted to reiterate and say I strongly agree with what Veej posted:

Which leads to the next thought: GETTING READY FOR YOUR APPT. History is thus important, and a really good rheumie will take a meticulous *lifelong* medical history. You could jot down key events & rough dates as best you're able, including more detail for the recent past.
Another thought: BOARDS SUCH AS THESE. Many drs. do not admire Internet browsing... Just out of prudence, esp. when first meeting a dr., you may want to omit mention of same.


Those 2 things alone will make a difference in how the doc perceives what you are trying to relay to him... (docs think in medical jargon terms). Docs do like things related and to the point mostly too...

Again...best wishes you get a good rheumie who can help you soon... and yeah, the fatigue is often overwhelming alone...

hugs from hewie..

 
Old 07-15-2004, 05:58 AM   #6
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creinha HB User
Re: Could I have Lupus?

Hey, guys. Thanks for your replies to my message and for the advice about how to prepare for my rheumatologist appointment. I'll try and answer some of the other questions.

My symptoms with joint pain have been going on for 3 months now. My doctor did tell me the ANA was positive, but not what the actual result was. He also told me over the phone that the ESR was elevated, but not how high. I went back for a Lupus panel and, I think, an RF test. I haven't gotten those results back yet. I did call them and ask if I could have copies of the tests to take to the Rheumatologist so hopefully I will know more details later.

I read the post about diagnosing Lupus and it seems I've had some on the list. I was diagnosed in 99 with a seizure disorder, and I've had problems in the past with rashes, but never on my face. I was also diagnosed with Hypothyroidism a couple years ago - my dr. reran the TSH test thinking my joint pain was due to the thyroid, but that test came back fine.

I guess I'm just really getting depressed. I'm so tired of fealing bad and it seems like I've not been able to find anything that exactly matches my symptoms.

I appreciate everyones kind words.

Cheri.

 
Old 07-15-2004, 07:06 AM   #7
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Re: Could I have Lupus?

[QUOTE=creinha]Hey, guys. Thanks for your replies to my message and for the advice about how to prepare for my rheumatologist appointment. I'll try and answer some of the other questions.

My symptoms with joint pain have been going on for 3 months now. My doctor did tell me the ANA was positive, but not what the actual result was. He also told me over the phone that the ESR was elevated, but not how high. I went back for a Lupus panel and, I think, an RF test. I haven't gotten those results back yet. I did call them and ask if I could have copies of the tests to take to the Rheumatologist so hopefully I will know more details later.

I read the post about diagnosing Lupus and it seems I've had some on the list. I was diagnosed in 99 with a seizure disorder, and I've had problems in the past with rashes, but never on my face. I was also diagnosed with Hypothyroidism a couple years ago - my dr. reran the TSH test thinking my joint pain was due to the thyroid, but that test came back fine.

I guess I'm just really getting depressed. I'm so tired of fealing bad and it seems like I've not been able to find anything that exactly matches my symptoms.QUOTE]

11 years ago I was diagnosed with possible Lupus (ANA 1:40 then 1:60 then 1:80>) joint pain and swelling, Raynauds, unbearable fatigue, mouth ulcers and a host of other symptoms. Eventually this diagnosis was changed to UCTD - undifferentiated connective tissue disease (an elevated ANA doesn't always point to LUPUS). After a lot of research and visiting a multitude of specialists, I myself determined that I had CFIDS (I also tested positive for Hypo. and Hashi). Although there are certainly many similarities between LUPUS and CFIDS, I felt my symptoms fit the CFIDS profile better than those for connective tissue disorders. Visit the CFIDS Fdn. home page for a comprehensive list of symptoms necessary to receive that diagnosis. One outstanding factor, for me, is that all of my vitals are always sub normal, including my temperature. With Lupus, fevers are not at all uncommon. The point I'm trying to make is that you might benefit from doing your own research rather than relying only on your docs assessment. There is a wealth of information out there and knowledge is power.

All the best!

Last edited by peregrine; 07-15-2004 at 07:16 AM.

 
Old 07-15-2004, 09:21 AM   #8
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Re: Could I have Lupus?

Hi, Cheri.

I ALWAYS react when people say they've had rashes... I was an oddity for many years: recurrent rashes, fatigue, elevated ESR, anemia, a noteworthy lifelong medical history (a lot of it subtle but several severe crises), etc. But I was (still am!) ANA-negative. And no antibodies, either. It turned out that I was in the "SCLE minority"---people with subacute cutaneous LE who do not have positive bloodwork results (odds of this are about 70/30).

Anyway... rashes can be very useful if biopsied &/or examined by either a dermatologist or dermatopathologist (one who is both a dermie and does his own pathology labwork); or maybe a great GP or rheumie could ID certain rashes WITHOUT a skin biopsy... Point is, some are LUPUS-SPECIFIC, which narrows down a lupus Dx fast.

Anyway, here's a quick rundown on the three best-known lupus rashes. (1) MALAR (butterfly) is the facial rash associated with full systemic lupus (SLE). (2) Subacute cutaneous LE rashes come in two main formats: annular (circular) rings, or a psoriasis-like rash. SCLE rashes typically do not scar or depigment; they favor the upper torso, arms and back. They are associated with the (lesser-known) SCLE "subset" defined in 1978. SCLE is thought to be an intermediate form of lupus, falling between SLE and DLE. (3) DISCOID rashes are associated with "Discoid LE " (DLE). They tend to scar and/or depigment.

There are also some less common lupus rashes: tumid lupus, lupus profundus, bullous lupus, etc.

Rashes CAN cross lupus subsets. A patient with multiple types is perceived as *probably* falling in the subset representing her "worse rash". e.g., someone with confirmed "discoid" and "SCLE" lesions would prob. be deemed to have SCLE. Likewise, someone with both a malar rash and SCLE lesions would probably be tested thoroughly for ful-blown SLE.

Lupus rashes are NOT usually Dx'ed by appearance alone: skin biopsies are typically done---though these may NOT be done on a malar rash, due to cosmetic ramifications.

Lastly, people with lupus do tend to be more prone to non-lupus rashes (hives, etc.). And many react wildly to insect bites & stings.

Anyway, this gives you a head start (I hope) in thinking back on your past rashes & whether they may (or may not) be something you want to bring up at your upcoming rheumie appt. You could always just mention what sort of thing you had, then wait for rheumie to query further.

Good luck! from Vee

 
Old 07-16-2004, 09:32 PM   #9
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Re: Could I have Lupus?

Hey Vee,

Could breaking out in red bumps that itch all over your arms while in the sun be a sign? I thought it was an allergic reaction to the sun. It also does this in the sunbed. Also get them on my legs and chest area.

CherylfromKy

 
Old 11-08-2004, 06:03 PM   #10
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Lightbulb Re: Could I have Lupus?

Hello everybody!,
I want to introduce myself. Recently I was diagnosed with Fibromyaglia(without any of the tender points...so I was not sure the doctor is right).
Doctor didn't want to do the ANA TESTING so I went to another doctor and here are the findings:
1) Positive ANA 1:160
2) I feel muscles and joint pain most of the time to the point I cannot walk.
when my period starts I feel better but that can last only for 5 days.
3) dry eyes
4) dry lips.
5) very low thyroid 0.96(plunged from 2.24 5 months ago).
6) feeling tired all of the time, no energy.
7) insomnia.
8) lost of weight( I just don't want to sleep)
9) my stomach(down there) hurt me a lot recently.
10) memory lost sometimes.
11) Low white blood cells.
12) my back started hurting me recently.
13) my fingers hurting me, and everything.
14) Rheumtoid was not found but it elevated to 11 from 6 as it was 5 months ago.
15) Rashes, yes rashes. I have them all the time on my legs. One time I saw one on my face. When I get a shower I have tons of rashes all over my legs. It's like the heat brings it up.
16) dry hair and loss of hair.
What do I have? what further testing should I do?
HELP ME PLEASE SINCE I CANNOT FIND ANY DOCTOR WHO IS WILLING TO HELP.

Last edited by Iwantacure; 11-08-2004 at 06:06 PM.

 
Old 11-08-2004, 06:59 PM   #11
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Re: Could I have Lupus?

Dear Iwantacure,

I just want to send my greetings. Your COMMENT #5 about your thyroid level falling dramatically really caught my attention. But I know next to nothing about THYROID LEVELS, so I'm hoping the people who do know more about THYROID LEVELS chip in asap.

For sure the other things on your list sound familiar. Plus you convey that your tests seem to suggest at least three thests that are not normal: ANA, thyroid, and RA factor. (I'm not a dr. so I don't know the proper levels.) Did you get a copy of the bloodwork, to see what normal ranges are? And if you are outside of thyroid and RA ranges, then why isn't your dr. taking some sort of action, do you know?

About the rash on the legs after your shower, caden_logan mom writes about this very thing. I get it also. It sounds vascular to me...

But I suspect you really need those test results to get things moving along.

We'll be on the watch for your response! Wish we could bundle you off to some really good dr.! In your shoes, I'd make getting those test results Step #1 of my game plan, then go from there. All my best to you, from Vee

 
Old 11-12-2004, 03:01 PM   #12
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Re: Could I have Lupus?

HELP
I forgot to mention: My ANA which came back positive has this:
Pattern: DUAL.
Antinuclear antibodies pattern: speckled titer 1:160
and Pattern titer homogeneous


Am I reading it right? as my doctor didn't want to tell me the results.
HELP ME SOLVE THIS MYSTERY.
P.S the dual is in black inc.

 
Old 06-13-2005, 06:13 PM   #13
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Re: Could I have Lupus?

I am a 40 year old female, and have been dx with celiac disease 5 months ago, also had an ana 1:2560. My father has mctd, my mother has psoriatic arthritis, my brother has diabetes Type 1, all autoimmune diseases. I have not felt 100% for the last 10 years, and a lot of this can be put down to the celiac disease. Now that I have been on a gluten free diet for 5 months, some of my symptoms have improved. But I have very sore tender feet, and swollen around the ankles, pins and needles in my left foot and sometimes numbness, and soreness in left thumb joint, sometimes in wrists, knees, elbows and shoulders. I also get very bad gasto-reflux which stops me in my tracks, for which I am taking Nexium. I am also taking a mild antidepressant and mobic for the pain and am getting relief from that, I am also very tired and have a mild depression. My GP thinks I should see the rheumatologist (appt next week) just in case there is something autoimmune going on besides the celiac disease. In the past, my GP phoned the rheumatologist about my case, and he was told that high readings of ana's are common in relatives of people who have autoimmune disease and that could explain my high ana. Ten years ago I had an ana test after hand rashes and it was 1:80 with a depressed C4. My C3 and C4 levels are within normal range, but at the lowest normal. Wondering whether I have lupus as well? Would like to hear from anyone who can give me their outlook. Thanks, Ktart

 
Old 06-13-2005, 06:18 PM   #14
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Re: Could I have Lupus?

I am a 40 year old female, and have been dx with celiac disease 5 months ago, also had an ana 1:2560. My father has mctd, my mother has psoriatic arthritis, my brother has diabetes Type 1, all autoimmune diseases. I have not felt 100% for the last 10 years, and a lot of this can be put down to the celiac disease. Now that I have been on a gluten free diet for 5 months, some of my symptoms have improved. But I have very sore tender feet, and swollen around the ankles, pins and needles in my left foot and sometimes numbness, and soreness in left thumb joint, sometimes in wrists, knees, elbows and shoulders. I also get very bad gasto-reflux which stops me in my tracks, for which I am taking Nexium. I am also taking a mild antidepressant and mobic for the pain and am getting relief from that, I am also very tired and have a mild depression. My GP thinks I should see the rheumatologist (appt next week) just in case there is something autoimmune going on besides the celiac disease. In the past, my GP phoned the rheumatologist about my case, and he was told that high readings of ana's are common in relatives of people who have autoimmune disease and that could explain my high ana. Ten years ago I had an ana test after hand rashes and it was 1:80 with a depressed C4. My C3 and C4 levels are within normal range, but at the lowest normal. Wondering whether I have lupus as well? Would like to hear from anyone who can give me their outlook. Thanks, Ktart

 
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