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    Old 10-12-2013, 02:05 PM   #1
    CariDukes
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    Question Being tested for Lupus and confused with results

    Hello all...

    Originally I came to the message boards because my doctors, optho,Family doc, lung specialist all thought they were dealing with sarcoidosis... however, when some lymph glands started showing as "reactive" in ct scans, ( not pathological), but reactive, they sent me to another lung specialist to go further into the sarcoid issues, but she went in a different direction and had me tested for lupus. This is the following lab results:

    HIV AG/AB ... negative
    Rheumatoid factor QT .... <10 REFERENCE RANGE ( 0.0-19.0)
    ANA.... POSITIVE
    ANA TITER ...... NUCLEOLAR 1:40
    DNA DBL STR... NEGATIVE



    NA............ 145 REFERENCE RANGE (135-145)
    K...........4.1 (3.5-5.1)
    CL...........107 (98-107)
    C02...........30 ( 21-32)
    GLUCOSE.... 90 (70-99)
    BUN............14 ( 7-22)
    CREATININE....1.1 (high) ( 0.6-1.0)
    B/C RATIO CALC 12.7 ( 6.0-17.0)
    ANION GAP CALC ...8 (2-17)
    OSMO CALC ........289 (285-309)
    CALCIUM ...........9.1 (8.5-10.1)
    PROTEIN ......... 6.9 (6.4-8.2)
    ALBUMIN..........3.2 *(low) (3.4-5.0)
    GLOBULIN............3.7 (1.9-4.4)
    A/G RATIO CALC...0.86 (LOW) (1.00-2.20)
    BILI TOTAL .............0.24 (0.00-1.00)
    ALK PHOS............93 (40-140)
    SGOT...............14 (LOW) (15-37)
    SGPT............22 (LOW) (30-65)
    GLOM FILT RATE..... 58
    BNP ................<15 (0-100)
    CRP..............1.2 (HIgh) (0.2-0.9)

    SED RATE......38 ( I run an avg of 58) (0-20)

    RBC ...........3.91 (4.20-5.40)

    SCLERODERMA (SCL-70) AB...0.2 ( <=25.0 ENzYME unit)
    <20 EU Negative
    20-25 EU Borderline
    >25 EU Positive


    25-HYDROXY D2 (GROUP)......<3.0
    25-HYDROXY D3 (GROUP).......11.7
    25-HYDROXY D TOTAL.... 11.7

    Whew.. .sorry... I have spilled protein in my Urine for 18 years. Some have been +3, +2 always +1 ( only gotten down after medications to keep it down)
    and have normal blood serum calcium, but high calcuria in my urine. I have a high PTH gland, with no abnormalities to it. I develop kidney stones, and have been put on medications to slow or stop that. I have normal cholesterol except for high triglycerides.

    I have been diagnosed with Fribromyalgia, due to major joint pain, muslce pain, constant fatigue, shocks that hurt so bad up my ankles and knee's that they can drop me. I suffer from vision loss at times, had a horrible bout of bells palsy for no known reason, started getting winded real easy six months ago, with great pft testing, and been through stress tests, and even a hear cath, was told my heart is perfect, no plaque what so ever, ( told it had to be a genetic thing for it to be so clean), and I have had two fingers lock up on me, to where I have had to go get a shot to help them go back down, as well as they say there is like right little nods on my right had on a few fingers, but nothing that shows arthritis.


    so.............. any suggestions that I should be talking to my RHEUM about this week... Never has my creatinine been above 0.8 and it is elevated now, and t this point I feel like I am not being taken seriously on how disabling this pain and tiredness is. I fall asleep instantly in a vehicle, even at red lights, sometimes I have to pull over for a bit of a nap before i can drive again, sleeping at home a lot, and this joint pain and body aches are horrible. There is also times that my body temp feels like it leaves me, and I have to take a hot bath to go back to normal. My fingers never turn purple, but if I am cold my legs get reddish, then can take a bit of a purple hue.


    any suggestions would be so welcomed.



    I need to add too, i have severe problems with the sun, i get a lot of tiny little blisters on my skin, my chest turns red as if i have been sun burnt, and my eyes can not deal with bright lights, whether its the sun, head lights, or lights in a store.

    Last edited by CariDukes; 10-12-2013 at 02:36 PM. Reason: forget information

     
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    Old 10-12-2013, 04:25 PM   #2
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    Re: Being tested for Lupus and confused with results

    Cari, I'm really sorry you're struggling with so much & glad you're seeing a rheum this week. Is this your first rheum? I'd expect him to run all new tests; they often do, using labs that they know are skilled at the AI tests.

    Have you seen the sticky posts (permanent info posts) located above the user threads? They contain basic info on lupus: diagnostic criteria, common symptoms, alternative criteria (these are things that occur in early life in people who later develop lupus), reading resources, and info on a variety of skin rashes seen in lupus.

    I'd expect the rheum to take a LIFETIME medical history, not just current. You should stress any "alternative criteria" (see the sticky) you've had.

    Re: labs your lung specialist did, I think sed rate and CRP suggest inflammation or infection, but unfortunately neither is specific (doesn't pinpoint what or why). Your sed rate being high for so long sure stands out!

    Also, your Vit D levels may be low. If your lab uses same ranges as mine (32-100), then they're REALLY low---enough to make you feel lousy. (At 10.3, I could barely creep around.)

    Re: Na (sodium), that looks right at the upper limit, but I don't know what that signifies, e.g., too much dietary salt, or maybe your body isn't eliminating it normally? You should ask.

    Re: low SGOT & SGPT, are those liver indicators? (I forget.)

    As for the ANA subtypes = the more specialized autoantibody tests typically run when ANA is positive: those run to date not be comprehensive. I see only three: anti-ds-DNA (seen in lupus), Rheumatoid Factor (seen in lupus and RA and maybe some others), and SCL-70 (scleroderma). In lupus and its "close cousins", there are quite a few OTHERS possible, like antihistone, antiphospholipid, antiribosomal P, antierythrocyte, anti-Ro, anti-La, anti-Sm, anti-RNP, ANCA, antilymphocyte, antiplatelet, etc.

    Re: spilling protein for that many years: wow! Have you seen nephrologists? What meds were prescribed? What reasons were given for your proteinuria?

    Re: kidney stones, me, too... awful! Was your PTH level tested, is that what's high? If high, was parathyroid surgery considered---or ruled out because all 4 looked normal on some sort of imaging? Are you on a special diet for the hypercalciuria? Drinking LOTS of water? (Don't mean to nag.) I believe abnormal parathyroid function ALONE will drive you into the ground eventually, if it's not corrected. (My serum calcium is still normal but rising, and my urine has turned too alkaline. I haven't had a PTH test yet.)

    Re: skin rashes, after you read the rash sticky post & see if anything stands out, post more on that, OK? Also, when your skin turns red, how long does it stay red---longer than a run-of-the-mill sunburn?

    Also, has your thryoid function been tested recently? I'll stop here & say bye for now. Looking forward to hearing more, hugs, Vee

     
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    Old 10-12-2013, 04:35 PM   #3
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    Re: Being tested for Lupus and confused with results

    P.S. Low SGOT and SGPT may mean Vitamin B6 deficiency.

     
    Old 10-12-2013, 05:17 PM   #4
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    Re: Being tested for Lupus and confused with results

    Thank you for responding. I see a nephrologist, urologist, a RHEUM for two years, opthomalogist, family doctor, pulmologist, endocrinologist, and not one person can lay a finger on any one result. I was told that because my kidney function is fine, that they are not worried about the proteinuria, that I could dump that due to kidney damage from stones, however, I did point out to them that I spilled protein nine years before i ever had my first kidney stone. The SGOT and SGPT can be liver and even kidney, I asked for a new RHEUM doctor as a second opinion, but in South Carolina, I got sent back to MUSC Rheum, due to being on Medicaid ( talk about non judgement for health care), that being aside, my urologist said that my issues with protein in my urine could be linked easily to autoimmune disorders, considering I Have no other urological problems aside from the kidney stones, and my kidney doctors no longer see me as they determined that nothing has to do with immediate kidney disease, I do not know if they ever thought of immune disorders or not. My PTH was 161.2 with the upper normal being 72.0. I was told nothing was wrong with it, as they did dye testing on it and my thyroid and they show nothing, no growths or anything on them, I was frightened to take vitamin D, because of the thought of sarcoid, where higher levels are bad for you, but that I will start taking, again, If I do not take a supplement of that, it is chronically low, my crp and sed rate have been elevated for over three years. My RHEUM knows this, and put it all down to fibromyalgia.
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    Old 10-13-2013, 03:25 AM   #5
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    Re: Being tested for Lupus and confused with results

    Cari, personally I woudln't start Vitamin D until my drs OK it; aslo specify which form, how much & how often. I think this way because
    1. You want them to see you "as is", at your natural Vit D level.
    2. Taking too much Vit D is definitely dangerous. Plus, I don't know if supplementing is safe for everyone: there may be exceptions?

    Hyperparathyroidism. I don't know if "secondary hyperparathyroidism" is possible with elevated PTH coupled with normal serum calcium. All this body chemistry is new to me & over my head, to be honest. But I think there are U.S. hospitals that specialize in parathyroid disorders. Have you tried finding & reaching out to them? (The interesting thought here is that "secondary" parathyroidism would be the result of some "primary" process... and wouldn't you LOVE to know what that is?)

    Fibromyalgia. I've never read that fibro can elevate CRP and ESR. I've always pictured it as a pain syndrome that lacks those very features. I hope others chip in on this.

    Rheumatoid Arthritis. I think it has its own diagnostic criteria that may not even "require" elevated RF, so you could look into those. (Unfortunately there are > 100 forms of arthritis.)

    Lupus. Those 11 criteria in the "sticky" are used to diagnose and classify systemic lupus. You generally (not always) have to meet 4 or more to sustain a Dx of systemic lupus. They may be met cumulatively, over time: envision checking each off in indelible ink, once met. There are people who meet < 4 but who have SLE confirmed, but that's typically thru kidney biopsy, which I'm guessing is done only where BUN, Creatinine, and GFR abnormalities exist. Lupus nephritis correlates heavily to anti-ds-DNA, which is probably why your lung specialist tested for that AB right off the bat.

    ANA is a criteria for SLE, but it's what I call "fuzzy" because it can elevate in so many conditions, not just lupus; plus it can elevate for reasons not having to do with chronic disease (like virus, infection, or a family tendency). 1:40 will likely be viewed as only very slightly positive, is my guess. But is it possible to have systemic lupus without a positive ANA? Yes, but only very rarely: 3-5% of people with systemic lupus remain ANA-negative, but these people do test positive for the anti-Ro subtype. This rare subset of SLE is sometimes called "Ro-lupus".

    In addition to "systemic" lupus, there are other subsets. In DLE (discoid LE), sometimes called skin-only, people may meet only 1 or 2 criteria and don't have circulating antibodies. You'd need discoid lesions to fall into this group; and if your skin lesions don't scar &/or depigment, I'm guessing it's unlikely they're discoid lesions.

    In the SCLE subset, people may meet less than 4, 4, or more than 4 criteria. ANA is positive in roughly 2/3. Rashes associated with this subset are the two SCLE rashes that are described in the "sticky" on rashes. Most in this subgroup (not all) are positive for anti-Ro.

    In the DILE (drug-induced) subset, people meet 1 or more criteria, plus are most often (not always) positive for anti-ss-DNA (that's single-stranded, not double) and for anti-histone. Treatment consists of identifying the culprit med(or meds) & discontinuing. You could ask if your med(s) have ever been implicated in DILE; if YES, maybe he'd test for anti-ss-DNA and anti-histone.

    Skin. I don't know if the sun reaction you describe fits any of the lupus-specific rashes. I think there are many photosensitive rashes & reactions that aren't lupus-related. Another thought: some meds don't mix with UV. Did you check your meds to see if any preclude being in the sun?

    Thyroid. Even though scans showed your thyroid looked normal, what about serum values? Hashimoto's thyroiditis can elevate ANA & cause joint pain hair loss, body temp changes, etc.

    But I'm just a patient, so please take all I write in that context. But one thing I can recommend without reservation: before seeing your rheum this week, really, really study those stickies, as they'll explain what your rheum would likely need to see before he puts lupus (in some form) on the "maybe" list. You must be horribly frustrated, so I hope this ANA finding leads to some new thinking. Then if lupus or some other AI isn't suspected, maybe some odd infection, virus, parasite, Lyme, etc.? Stay in touch, OK? Thinking of you, Vee

     
    Old 10-13-2013, 09:20 AM   #6
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    Re: Being tested for Lupus and confused with results

    My T3, T4, TSH, Cortisol, Folate, B12 are all normal. DVVT was slightly off it was 47. My rash on my hands looks like discoid. They start out as red rounded area, that has blisters around the edges, then gets very thick in the middle. Almost like a callus appearance but becomes very flared in the sunlight. The other two rashes I have that appear, are on my legs, its ranges from pin needle size blister like things in the sun, to the size of chicken pox, and is very itchy. The one on my chest looks like rosacae( I know I did not spell that right) but my family doctor said it has the same look as the butterfly rash on a face, it never leaves, but can become very bright red when in the sun, which makes it almost look like a sun burn, my cheaks can do the same thing, but my face being effected aside from my chin is on rare occasions. I have been checked for Lyme disease, Sjorgens. Meds I am on are very minimal. I am on Hydrocodone for major joint pains, Valium to boost it and help me sleep, and Metotoprolol for kidney protection, which I use to be on Benicar, and had better results but medicaid decided not to deal with that one no more due to cost, and so meto was the second best for trying to slow down the protein leakage. If i am on it, i can keep the protein down to plus one, sometimes plus two. If I am off it, I am plus three and higher.Thank you for answering, I am going to start writing questions for the doctor for this week ..
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    Old 10-13-2013, 12:45 PM   #7
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    Re: Being tested for Lupus and confused with results

    Cari, for your lesions, I can't know if any are lupus lesions, but if they ARE, based on what you wrote, these come to my mind as possibilities:

    For the ones on your hands, I agree discoid LE would the one to ask about.
    For the blistery leg lesions, I'd ask about bullous LE.
    For chest area redness that never quite goes away, I'd ask about tumid LE.

    Even many doctors don't realize that people with lupus are "eligible" for more than one type of lupus rash. I had many SCLE annular (targetlike) lesions. Also, just one discoid. That was crusty like you describe. It would scab over, then reopen. Left big pink dent on my nose (surgeon had to fix b/c skin kept re-opening).

    As a kid, I had a widespread outbreak (entire arms & legs, some on back and chest) of what may have been bullous LE. They were fluid-filled, many raised up 1/4" or more, some had diameters nearly gumball size. Fluid almost clear but with a very slight yellow tinge. They itched terribly.

    If any of your lesions are diagnosed as lupus-specific, that would mean that you have lupus "to some degree". By that I mean, a dr. might say "skin-only" initially if no circulating antibodies are found right off. But even that would put you on the continuum, so to speak; and presumably you'd get some sort of treatment (for skin and joints, etc.), plus you'd would be closely monitored for new/worsening symptoms. So, good luck! We'll watch for updates. Bye, V.

     
    Old 10-14-2013, 03:26 AM   #8
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    Re: Being tested for Lupus and confused with results

    Cari, during your appt., I'd put KIDNEY VALUES at the very top of my list. You'd already noted high creatinine and low serum albumin. I'd add GFR (glomular filtration rate): is it low (you didn't state range)? All are consistent with proteinuria (which you've had for years!) and can suggest nephrotic syndrome.

    Per one of my hardcovers, nephrotic syndrome can cause ankle swelling, bloating, discomfort, pleural and pericardial effusions (fluid around lungs and heart), shortness of breath, and chest pains. (Some problems you described from the past 6 months may fit that list, so really stress those that do!)

    You said you take Metoprolol to protect your kidneys. Do you have hypertension (it's one cause of proteinuria)? And lupus is certainly another.

    I'd want all the specialized lupus blood labs done, plus thorough evaluation of lifetime health history. Above all, I'd FORCE THE KIDNEY ISSUES because SOMETHING'S driving them, lupus or something else. So I'd also want new urinalysis & new 24-hour urine collection---then those findings could lead to a kidney biopsy (I'd say YES to that PDQ). Some time back, your nephrologists stopped seeing you b/c they hadn't found "immediate kidney issues". Well, I'd want them back on the team. Sending hugs, Vee

     
    Old 10-14-2013, 06:16 AM   #9
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    Re: Being tested for Lupus and confused with results

    Thank you
    as far as hypertension no. I was originally put on metotorpolol due to tachycardia issues. I become tachycardia with no know cardiac cause as I stay in regular rhythm, so this too they feel is secondary to what ever is going on. They had taken me off the me to and put me on benicar as that protects the kidneys better but insurance does not want to pay for benicar, and out of pocket is out of the question. My last GFR reading that was normal and done by urine was above 60, this last one the lab did due to my creatinine being slightly elevated,but it was done by blood and that GFR was 58.
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    Old 10-14-2013, 06:50 AM   #10
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    Re: Being tested for Lupus and confused with results

    Interesting that they thought the tachycardia was secondary but still didn't find the primary cause. Further, when you think on it, all hydrocodone is probably doing is reducing pain---as opposed to med (or meds) that could address the real underlying problem... whatever it is. I really hope they figure that out this time around. I'll keep my fingers crossedfor you!

     
    Old 10-14-2013, 06:58 AM   #11
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    Re: Being tested for Lupus and confused with results

    Cari,
    You certainly have some concerning issues that I think Vee addressed very well, so I will ditto what she said. I think it is very important also, to focus on getting to the bottom of the kidney problem, which may very well provide a definitive diagnosis. For some additional info, chronic kidney disease (CKD) causes a secondary hyperparathyroidism. This is quite common and is likely the cause of your hypercalcuria and stones. With your heavy proteinuria for so long, creatinine creeping up, low EGFR, I think a kidney biopsy is mandatory. I don't buy the stones causing the proteinuria theory, and it is significant enough protein losses to reduce your serum albumin. Fibromyalgia doesn't cause sed rates near 50-60. It really shouldn't cause sed rate elevation at all. Overall, your clinical picture is pretty much a textbook lupus picture, in my lay opinion, even though your ANA is low +. Have you had more than one ANA and more than one anti ds DNA test done? Those should be repeated if only one has been done. I think you need some new Drs or need to get in their face and be very assertive about getting diagnosed and getting on more specific treatment. A skin biopsy (with immunoflurescent studies-very important) may provide a diagnosis as well. Any one of your rashes could be biopsied, best by a dermo/pathologist who is used to dealing with immunofluorescent studies and autoimmune disorders. Another drug, Losartan, may provide even better protection for your kidneys than the beta blocker if your BP can handle it (it lowers BP). You deserve more aggressive management than you are getting, and I would fight for yourself as you learn more about what is affecting your health. Sandy

    Last edited by ladybud; 10-14-2013 at 06:59 AM. Reason: typo

     
    Old 10-14-2013, 05:30 PM   #12
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    Re: Being tested for Lupus and confused with results

    Thank you both. I do believe that between both of you I am heading into Wednesday better equipped to deal with my Rheumatoid doctor. I know something was on her mind during my last visit because she kept asking about the scars on my legs and sunlight. I was ANA and anti ds DNA tested which came out negative the first time. That was back in April, then when I had my most recent my kidneys were hurting for three days, but I put that down to IV contrast four times in a row between isotopes and dyes for the spect/ct scan of my parathyroid and my heart, and thyroid, then two days later I had more dye, then two days after that the dye for the heart catherization, and then another CT scan with contrast with the lung specialist. So I just figured beings my numbers creatinine have always been normal that my kidneys were over done with the dyes, so I do plan on asking her to re administer the ANA. My kidney doctors keep refusing a biopsy telling me it is highly dangerous and they do not do it for any reason unless they are certain to find some thing. things will speak yo my urologist and he is pretty straight having already said a lot of what is going on can be linked to a lot of immune disorders, but then they all bat you back to the rheumatoid doctor. Very frustrating. I wish they could live one day @ 42 years old with hands that can barely chop or cut food, an not open cans, can not squeeze a shampoo bottle, my arms get tired brushing my hair. I am over weight, but go to cardio rehab with my husband and exercise with him three times a week. It hurts so bad, but I push and keep on reminding myself that no matter what's going on, keeping as healthy as I can is just essential not knowing what's going on, just as if I knew my battle. That's the frustration. I will take what my good Lord has put on my plate, it would not be there if he did not feel I could not handle it, but give me a name, so I can develop the tools... Ty both for giving me some good direction and extra knowledge to go at um with.
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    Old 10-15-2013, 02:45 PM   #13
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    Re: Being tested for Lupus and confused with results

    Cari, I've read that kidney biopsy is considered a generally safe procedure. I'd ask for my rheum's opinion.

    Also, like Ladybug, I don't quite buy that kidney stones can cause proteinuria. Hematuria, well, sure. If there IS any connection with proteinuria, I'd want to see that in writing.

    Last, I just learned that there's a *third* type of hyperparathyroidism, called TERTIARY, that can occur as the result of longstanding SECONDARY hyperthyroidism [who knew?]. In it, even though your serum calcium has stabilized, the parathyroids have stopped being sensitive to serum calcium & just keep on producing large amounts of parathryoid hormone. Has your serum calcium ever been low enough and for long enough, to "qualify" you for the secondary form? If yes, could your parathryoids have moved on to this tertiary form?

    I really hope your appt. goes well & results in new thinking. We'll look forward to hearing about it. All my best, Vee

     
    Old 10-15-2013, 05:47 PM   #14
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    Re: Being tested for Lupus and confused with results

    My serum calcium levels have all been mid range. Never low, never high and pretty consistent. I do see the Endo that did the tests this Friday and will be pushing her and my rheumy to get together with the kidney people and start getting a picture built.
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    Old 10-17-2013, 02:52 AM   #15
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    Re: Being tested for Lupus and confused with results

    Cari, I saw in multiple places that one cause of secondary hyperparathroidism is low Vitamin D. I don't know what calcium level looks like in the "tertiary" form---could it be normal b/c, in that form, your parathryoids have taken on a mind of their own? I really don't know... That said, I'd definitely get the Vit D deficiency investigated, as I think it needs addressed regardless of the role it might have in hypercalciuria, stones, etc.

    "Getting a new picture built": yep, I think that's exactly what you need. Here's wishing you a speedy breakthrough & better days ahead, Vee

     
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