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  • Lupus or Not

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    Old 03-19-2007, 05:37 PM   #1
    jodieh823
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    Lupus or Not

    I have the following symptoms and have seen a rhuematoloist, but no diagnosis yet:

    Joint pain (all joints, fingers, wrists, elbows, shoulders, hips, knees, ankles, lower back and neck) very stiff, then loosen up after I'm up and moving around
    Low WBC (have had this for 13 years, but no one has ever thought it was a problem) my immune system seems to work fine, I get sick less than anyone in my house
    Protienuria-OFF & ON, always clears up, but have blood in my urine several times which also always clears
    Palpitations
    Abnominal pain - nausea/heartburn (am taking protonix after Zantac failed, and not Protonix isn't working)
    Hashimoto's diagnosed in October (thyroid peroxidase antibodies 379) TSH normal now on synthroid
    Sed Rate- normal
    ANA - negative now, but has been positive in the past twice (like 10 yrs ago)
    RA is negative
    all other rheum tests are NORMAL
    I have never had oral ulcers the only rash I get is when I take a shower I get a rash around my knees and ankles which goes away in a few minutes, once in a while I will have itchy skin, but nothing to write home about - I am very sensitive with sunburns, I have to tan VERY slowly, or I will itch so bad I want to rip my skin off (so I don't tan or lay in the sun without sunscreen)
    Never had hot/red swollen joints

    Does anyone have lupus who has never had the oral ulcers or rash?? I know I felt perfectly fine a year and a half ago, and now I am so sick of feeling like this, I could just about scream. I walk 45 minutes a day and still do everything I did before, IT JUST HURTS. I think my rhuemi has lupus in the back of her mind, but since I don't have the oral ulcers, rash or swollen hot joints, and negative ANA doesn't think that's it. She did send me to a hematologist, who pretty much said the same thing I said, "If something really bad was causing the low WBC, I would be dead by now or would have been in the hospital with bad infections".
    Thanks and sorry for the long post.
    Does this sound familiar to anyone out there?

     
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    Old 03-20-2007, 04:12 AM   #2
    VeeJ
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    Re: Lupus or Not

    Jodie, Hi. Have you read the 3 "sticky posts"? Look at the top of the thread list for the posts with padlock symbols. See the one titled "criteria to diagnose lupus"? You must meet 4 or more to be diagnosed with systemic lupus (SLE), but not necessarily all at once (think of checking each off in indelible ink). Given that logic, you don't have to have oral ulcers or rashes.

    SLE is the main form of lupus, but there are other "subsets" in which you may meet FEWER than 4 of the "4 of 11":

    1. SCLE = subacute cutaneous lupus erythematosus. In this form, symptoms can extend thru the entire range seen in SLE; kidney & CNS involvement are possible but rarer, it's thought. ANA is positive maybe 2/3 or so of the time. Anti-Ro & anti-La are the most common antibodies. There are two characteristic rashes in SCLE, both nonscarring & nondepigmenting. Many patients fulfill 4 or more of the "4 of 11" criteria, but may fulfill fewer.
    2. DLE = discoid. Rashes tend to scar &/or depigment. Only 50% have a positive ANA. Typically people with DLE fulfill fewer than criteria.
    3. Two other kinds: neo-natal and drug-induced (DILE).

    Criteria that are symptoms can be deceptive &/or slow-building. For example, I had blood in urine many times---but due to UTI's & stones, rather than to kidney malfunction. I edged into photosensitivity so gradually that I didn't realize it was happening. I had red bumps that I thought were insect bites; then one expanded into a circle, so my drs. treated me for Lyme. But a lot of targetlike rashes followed over time, but my drs. didn't recognize them as a photosensitive SCLE rash...

    QUESTIONS: (1) Does your rheumie run all antibody & complement tests even though your ANA is more often negative? (2) Re: your Hashimoto's, could it, or the Synthroid you take for it, explain some/all of your problems?

    I'll stop here & hope you post more soon. Bye for now, with best wishes, Vee

     
    Old 03-20-2007, 05:00 AM   #3
    kidd123
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    Re: Lupus or Not

    Hi--I can relate to your wondering. I was diagnosed with Lupus one yr ago, after noticing a butterfly rash on my cheeks from being in the sun earlier in the day. However, I have never had the mouth sores, (At least not yet!)
    but have tested very low wbc since about 1990. My history is raynauds in my late 20's, sjogrens in my late 30's, fibromyalgia in my 40's and lupus in my 50's. Didn't realize this pattern until just recently,
    when a new dermatologist said, "Wow, you've got a lot to deal with!!"
    It seems there are many different variables with autoimmune diseases, which can be confusing and misleading sometimes. Best wishes to you & hope you feel much better soon!

     
    Old 03-20-2007, 03:35 PM   #4
    jodieh823
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    Re: Lupus or Not

    Thanks for the replies! I did read the sticky notes with the criteria, and that's why I'm so puzzled, I just don't fit the classic "lupus" criteria. I am also wondering about B12 defiency. I know that the normal is 200-1100 and mine was 346, which according to the lab report, levels between 200 & 400 may cause "hemotalogical abnormalities and symptoms in some percentage of patients", but no one did anything about it... and I work for the doctor who ordered the test. I asked the hematologist about it and he said, that indeed it could be that simple and it sure wouldn't have hurt to just give me a B12 shot. He is going to get copies and I see him next week, so I am hoping he just gives me a B12 shot and see if that doesn't help. I'm just frustrated, I can't take advil because it really bothers my stomach.

    I did have all of the compliment tests, and they were all negative,,,, so, according to my labs I'm perfectly normal except for a low WBC count and really high thyroid peroxidase.... Oh, I do have high cholesterol (254) with a high LDL (184). Am on Lipitor but all of this started prior to the lipitor and has not changed.

    I wondered if there was such a thing as "mild" lupus..... if anyone else had vague symptoms with nothing classic "Lupus" occurring?

     
    Old 03-20-2007, 06:19 PM   #5
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    Re: Lupus or Not

    Hi, Jodie. The dividing line is whether major organs are affected, such as lungs, heart, kidneys & CNS. So people can remain "mild", but "mild" can include constitutional problems, arthritis pain, anemia, etc.

    My B-12 level was also low, often almost 200. I had photosensitivity, anemia, oral sores, joint pain & swelling, pain along long bones (arms & legs), hair loss, weight loss, migraine-like headaches, irritable bowel, irritable bladder, stones, UTI's, conjunctivitis, neuro-like tingling, low-grade fevers, chronic fatigue, sciatica, mid-back pain. In my early years, pneumonia a few times & encephalitis with convulsions. Finally, annular (targetlike) nonscarring rashes on arms & torso---but never the classic butterfly rash.

    And my ANA was always negative, which happens more in SCLE than it does in SLE. I finally tested positive for anti-Ro and positive on a lupus band (skin) test, when someone finally thought to run these tests. I'd had recurrent problems from early childhood and was Dx'ed in my late-40's. Plaquenil has helped a lot & sun avoidance, also.

    In his lupus hardcover, Dr. Daniel Wallace lists 16 antibodies & complement deficiencies seen in lupus. (Who knew there were so many?!?) But only two are "specific" enough to make the "4 of 11" list: anti-ds-DNA & anti-Sm.

    Speaking of books: the Dr. Wallace hardcover is excellent. Dr. Robert Lahita is another great lupus author. Most libraries & bookstores have either or both.

    I hope this adds a little more to your thinking. Take good care, OK? Best wishes, Vee

     
    Old 04-03-2007, 06:54 PM   #6
    jodieh823
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    Re: Lupus or Not

    Well, my B12 is down to 320 and my endocrinologist ran a test to see if I can absorb it, I can, so I started taking B12 tonight. I saw the hematologist and he ordered a ton of tests due to the presence of metamyelocytes in my last CBC. I have posted on the blood disorder forum and the cancer:leukemia board to see if anyone knows anything about the metamyelocytes. My hematologist said "we don't want to many of them" and then mentioned a bone marrow biopsy depending on what the other results are (they are doing a smear where a pathologist actually looks at the blood to see). I go back to him next week, so hopefully I will have more info and the vitamins will help!!

     
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