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  • Pretty sure I have Lupus-help!

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    Old 10-02-2013, 10:31 AM   #1
    lbach1006
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    Pretty sure I have Lupus-help!

    For years now I have always been so exhausted I couldn't keep up or do things, have always had horrible joint pain for which I'm much too young for and mouth sores, nose sores, I could go on and on. I always wrote it off as other things such as my 2 pregnancies or just normal postpartum pain or whatever I felt like blaming it on at the time. I'm now 6 months postpartum and have many kidney issues out of the blue. Mine are functioning at 46 and 54% and have scarring in the right one. I have recurrent hydronephrosis and such bad pain they are talking about removing a section of it to try to help them fill correctly. Because of all this I recently reached out to find my birth mother and ask her about any family history I need to be aware of well she has lupus as did her grandmother. I spoke to my urologist about this and he really just wants to treat symptoms and doesn't care for finding a cause. I feel that if I have a disease causing kidney damage then surgery wont help unless I get the disease under control. I went to see my pcp about it and he did a first round blood test which only showed elevated calcium. We ruled out thyroid issues and things like that. Today he has sent me for an anti-dsDNA test and said 70% of those with lupus have a positive result on this test and he will send me to a rheumatologist in that case. I'm so stressed and anxious I don't know what to do. I also got a referral for a second opinion from a different urologist but am just so worried I've lost half my kidney function already and am in agony. Does anyone have some advice or support to offer? Or is anyone else having kidney issues as a result of their lupus? How did you come to diagnose that the two were related? I know it sounds odd but I just have a very strong gut feeling that this is what I have. Looking up more and more it just sounds like me. Also do I need to worry about my kids developing it as well? So sorry for such a lengthy post I just don't know where to turn. My anxiety is almost unbearable at this point, thank you so much to anyone who can respond and offer an opinion!

     
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    Old 10-02-2013, 11:11 AM   #2
    ladybud
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    Re: Pretty sure I have Lupus-help!

    Welcome to the boards, and I am sorry you are having considerable issues, but glad you are trying to get it checked out. First, a urologist is appropriate to treat any obstruction in the ureter causing hydronephrosis, but a nephrologist is the Dr you want to address the actual kidney function. You need lots of tests, and perhaps have had some of these done. An ordinary urinalysis is important to check for blood, protein and casts in urine. A creatinine level is important, as well as BUN. The hydronephrosis may be causing the decrease in kidney function and may be reversible. On the other hand, lupus can cause direct damage to the kidneys and needs to be assessed by a nephrologist. A negative anti dsDNA does NOT rule out lupus. Have you had an ANA done? Only 30% of lupus patients have anti dsDNA and that usually shows up in people with lupus kidney involvement. So it is a good test, but tells you nothing if negative. You should see a rheum for a full workup, with all symptoms and labs previously done reported. Your symptoms are certainly suggestive, and it can be treated to help you feel better and prevent damage to organs and kidneys, etc. Please don't delay in getting this evaluation underway.

     
    Old 10-02-2013, 11:45 AM   #3
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    Re: Pretty sure I have Lupus-help!

    Hi. I'm so sorry you're having these symptoms and big worries. But talk about timing! For months I've had my blood and urine tested due to kidney stones---and I have lupus but without lupus nephritis. So here are some thoughts, but please read in the context of my being just a patient.

    1. I agree with you: I wouldn't want surgery without having the correct underlying cause identified. (And if it ever does come to surgery? I'd want a nephrologist in charge, and for him/her to pick the surgeon.)

    2. Elevated serum calcium. I think this is called "hypercalciemia". When it's high, I believe doctors usually also have you do a 24-hour urine collection to see if you're excreting too much calcium (hypercalciuria). Where hypercalciemia (in blood) and hypercalciuria (in urine) are found, I believe there may be multiple causes. One is heredity. Another is certan cancers. Another is sarcoidosis, which can cause scarring of various organs. Another is hyperparathyroisidm; endocrinologists look for it by doing a special blood test called PTH. If hyperparathyroidism is diagnosed, the only fix is surgery on your parathyroid glands (they're located behind your thyroid.) Surgery is apparently simple (20 minute outpatient), but you need someone really good to perform it.

    But there are probably more causes of elevated serum calcium than I know! You could ask your GP about both hypercalcemia and hypercalciuria, to get insight into more causes.

    I'm sorry, I don't know if lupus nephritis can elevate serum calcium (sorry).

    3. Re: testing for lupus, anti-ds-DNA is actually only one of various criteria. You may find them ALL by looking at the "sticky posts" (permanent info posts) that are located right above the user threads. You'll see 11 criteria. Generally, but not always, you must meet 4 or more to be diagnosed with systemic lupus. They may be met cumulatively, over time.

    FURTHER, there are many MORE autoantibodies possible in lupus than just anti-ds-DNA. Some others: anti-Sm, anti-RNP, anti-Ro, anti-La, antiphospholipid, anticardiolipin, antileukocyte, ETC. Further, I'd want a rheumatologist to do the lupus assessment, not a GP or urologist.

    4. Other signs of kidney involvement in lupus include: in blood work, elevated BUN and creatinine; and in urinalysis, cellular casts visible under the microscope, protein spilling into the urine (proteinuria), or hematuria (blood spilling into the urine). (If your urologist has done a 24-hour urine collection, you could look for those findings; if he hasn't, shame on him.) Of the 3 urine findings, proteinuria is the most suggestive of lupus nephritis. The 24-hour urine collection would be followed, if deemed necessary, by a kidney biopsy, which can differentiate lupus nephritis from OTHER KIDNEY DISEASES.

    Importantly, my lupus hardcovers both state that in lupus nephritis, the kidneys *don't hurt* unless the patient has pleurisy (due to radiated pain), kidney stones, or kidney infection. So that's a big point, too, since you mentioned having severe kidney pain...!

    5. To me, 64k question is, Are there conditions OTHER THAN LUPUS that might be causing your kidney symptoms? Per above, I strongly suspect YES.

    6. BTW, I've had other tests, too, like multiple renal ultrasounds and X-rays. Have you? What did they show?

    I hope others add more to this. Looking forward to your posting again soon & sending my best thoughts your way, sincerely, Vee

     
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