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Thread: Got results of Kidney Biopsy

  1. #11
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    Missy, sulfa drugs can definitely trigger a flare - in fact, some people develop lupus symptoms for the first time after a sulfa antibiotic. Most rheumies know about the sulfa connection but not all GPs do, so you should always ask about any antibiotics you take. One other caution about antibiotics - many of the stronger ones like vancomycin and gentamycin are "nephrotoxic" - meaning they can damage your kidneys, so they can be a bad idea for someone with lupus nephritis. I found this out the hard way when I was given vancomycin for a staph infection and developed kidney failure as a result. Fortunately I have a great nephrologist, but it was bad for a while! But now I'm very paranoid about antibiotics, and ask lots of questions before I take them.

  2. #12
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    Quote Originally Posted by Missy

    Solesinger - I also am havign to watch my Lisinopril because of low BP. Feels so wierd since it was so high at one time. I've reduced my Cellcept to 500 mg a day. My goal is to get off all my meds but Plaquenil. How ever last week my labs said my Creatinine went up to 1.2. It had been at .9-1.1. So, of course, now I'm worried......

    I had a sinus infection and was on antibiotics (had a bad tummy from the first one so we switched) and read afterwards that the first antibiotic - a Sulfa drug can cause flares in people with Lupus. So, I'm wondering if that started my flare....anybody had that happen? I might have learned something a little too late.
    Yeah, I've had a terrible time with my BP they had to take me off all the BP meds and diuretics because it was causing such problem with my BP... But once I was off of them my BP wouldn't stablize it was WAY low then WAY high But mostly it stayed low even off the drugs... So they gave me something to raise my BP and then it went TOO HIGH! (170/110) UGH I feel like I can't win! I've passed out due to having such a low BP and sometimes it makes me so dizzy I can't drive (Typically when I am trying to leave somewhere I've gone. But since I was put on the med to raise my BP and it went too high, I stopped taking that, too and I hover around 116/68 which isn't bad... But, I'm starting to swell, and my hair is falling out again, and I have like no appetite again... So it scares me...

    As far as antibiotics, I never understood how people with Lupus were allowed to take them... Don't they raise your immune system? And isn't that what we are trying to prevent???
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  3. #13
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    Hi, Solesinger - I have an ongoing problem with low blood pressure, and the bp medicines prescribed for kidneys and Reynauds dropped it like a stone. so they had to discontinue them. If fluid retention is a problem your doctor might be able to prescribe a mild diuretic to help without lowering your bp too dramatically. Dehydration can also cause your bp to drop, so if you're restricting fluids because of swelling, it might make the low bp worse.

    The doctor who manages my bp told me to use a little salt with each meal, and not try to restrict it completely, as I had been doing because of the fluid retention. Now I use a natural sea salt, which doesn't cause a lot of fluid retention. I also have to be careful about my electrolyte levels because my potassium goes up and down erratically, and it definitely affects my bp.

    If you get dizzy a lot while standing, ask your doctor whether compression stocking might help. These keep the blood from pooling in your legs and also reduce swelling in the legs. Raising the head of your bed about 4 inches can help reduce the dizziness when you first get up put of bed.

    I also like to cook with a lot of rosemary because it helps raise your blood pressure naturally without raising it too high. Another thing that will also raise your bp naturally is licorice - the real licorice candy, not the artificially flavored kind. I keep some on hand and eat a piece when I know the bp is low. Obviously you should stay away from it if your bp is high, but it's a good emergency remedy, although probably not a substitute for meds.

    Hope this helps!

  4. #14
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    Keep in mind when taking any medication that affects your blood pressure, you should be cautious about rapid changes in position because that can cause your blood pressure to drop rapidly too. By changes in position I mean laying down to sitting up, or sitting to standing. The term for this is postural hypotention, and it can cause you to become very dizzy or pass out.
    Medications are generally cleared from the body by either the liver, or the kidneys, or both. Therefore, any decrease in kidney function can greatly affect which medications can be taken, how much can be taken, and how often they can be taken. Antibiotics are no exception. Vancomycin and the aminogycoside antibiotics (gentamycin, kanamycin, tobramycin, neomycin) need close monitoring of the kidney function when they are given. Other types of antibiotics, like quinolones (cipro,levaquin,ect) should be given less frequently than usually given. I guess I should just make this my personal salutation since I say it all the time anyway.

    Make sure you tell your doctor AND/or pharmacist.
    Laura

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    well the thing is, I am so sensitive to any of that stuff it's crazy! they had me on such a small dose of lasix and lisinopril (taking away the other bp med and diuretic completely) and I was drinking gatorade like water because of the potassium and salt, and my bp STILL dropped. And then if I eat enough salt to make it go up, it rises and rises and rises until I take a diuretic to bring it back down (by dr.s orders)

    I can't afford $600 for compression stockings again. And honestly, it scares me because the compression stockings made me so much worse before i went into the hospital and got my dx... I know it's dumb but once bitten twice shy...

    I'm also losing potassium... and we don't know why... I am taking 80 MEQs a day!!!!! So that could be another reason why my BP is so low... and then they did an EKG and said that I suddenly had right side atrial enlargement and possibly pulmonary hypertension... so there's another reason... and I came back a low positive for a blood clot (which he said could be falsely positive so he's doing more tests... But, man oh man I just want to be normal again!

    And it isn't postural hypotension for me anyway... Personally, I get it sitting, lying down, and standing without changing position. The last time I passede out I had been sitting for 5-10 minutes before I even started feeling weird!

    I'm just screwed up...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  6. #16
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    Yes, potassium can certainly affect blood pressure, not to mention your heart and all the other organs. Have you been seen by an endocrinologist? Because when my potassium levels were going up and down like a yo-yo - that's who my rheumie and nephrologist finally called in, and he finally managed to get it reasonably under control -ironically, my problem was not a potassium deficiency, but a magnesium deficiency - apparently your body needs magnesium to keep you from losing too much potassium, and because of a problem with my small intestine, I wasn't absorbing enough through food. Plus I was taking lasix which also causes loss of magnesium, And since many of the symptoms of magnesium deficiency are also common with lupus - fatigue, weakness, nausea, numbness, tingling, muscle pain, etc. - I didn't notice anything different. I'm sure your doctors have probably checked your magnesium levels in trying to figure out the low potassium problem, but it might not hurt to ask.

  7. #17
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    Solesinger,
    What a frustrateing problem! I did not mean to insinuate that all of your troubles are due to postural hypotension. I mentioned it because it seems that so many of us are taking one type of drug or another that affect blood pressure, and so many seem to have dizziness as a symptom. It can be a challenge to differentiate between disease symptoms and drug side effects, especially when the disease can cause sooo many different symptoms. I hope you get some answers and relief soon.
    Laura

  8. #18
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    Oh NO! I didn't take it that way at all! Sorry if I sounded curt or offended or anything. I just meant to say that for me, that's been ruled out... Sorry...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  9. #19
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    What a crummy situation, Solesinger. I hope you can find some combination of treatment that works for you. I feel a bit lucky because even at my worst kidney problems I didn't have water retention problems.

    So, I think the Sulfa drug did cause a flare - saw the Nephrologist today and I think I'm going to have to do a course of Prednisone. I'm bummed because I've really been working on getting off the meds and had been doing so well.

    And I'm disappointed that my internist, whom I really like and listens to me, missed the boat on this one.........
    Missy

  10. #20
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    What IS creatine anyway? My doc was alarmed at my creatine levels during my last urine test (also had protein and blood in my urine.)
    I think I may ask him for a referral to a nephrologist.
    But somebody explain how the kidney works, and what these test results mean????

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