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  • Should I see a Nephrologist Now?

    Hello,

    I was wondering if anyone could help with an opinion or two....I'm not sure whether to sit tight with my GP or to move on to a Nephrologist. Thanks in advance for any advice.

    Almost a month ago I finished a 10 day course of an antibiotic (Azithromycin) at high dose. During the last 5 days of the drug I urinated -constantly- & experienced great thirst and flu-like symptoms. About a week later lab tests showed Creatinine at 1.33 / GFR 58. Yesterday (two weeks later) a second set of labs showed 1.36 / 56 (I'm 47). I'm finishing a 24-hour collection to turn in tomorrow, although I've read that the 24-hour collection method isn't much more accurate than the MDRD estimation method in stage 3.

    My GP thinks everything will be fine, and wants to simply monitor my creatinine / GFR for several weeks; he thinks things will fade back to normal, or at least to above 60. There aren't any other test values out of range, other than a slight trace of protein from a urinalysis.

    I'm afraid that this may turn into a chronic slide downhill, but it could just be fear speaking. I wonder if I'm panicking for no good reason and this is something acute that might spring back.

    Does anyone have an opinion as to whether it would be a good idea to make the jump now to a Nephrologist? I was thinking that maybe something more aggressive than "wait and see" might be a good idea. My GP said he'd prescribe a course of prednisone if I wanted to try it, but at this point I'm hesitant to take anything without very good reason.

    If anyone had any kind of opinion on this, I be very grateful....

    Thanks,

    Charlie

  • #2
    Re: Should I see a Nephrologist Now?

    Hi Charlie,

    Welcome to the site! I'm hoping Chefnancy will see your post and respond since she is extremely knowledgable.
    I think your GFR puts you at Stage 3, close to stage 2. For peace of mind you might want to make an appointment with a nephrologist. He/she will be able to tell you if this is acute or not. If it is acute than it is temporary and reversible.
    ~ddarling~

    Comment


    • #3
      Re: Should I see a Nephrologist Now?

      Charlie025, I understand your doctors response. There is something called acute kidney failure, where your kidney will eventually go back to normal function. It is possible that your doctor could be hoping for that to be in your case. Your doctor's response is very similar to my doctors response. It sounds like to me your doctor is on top of the situation. A Neph is not going to 'heal' your kidneys, using the 'wait and see" attitude is not going to hurt you at this point. Take this one test at a time. Keep an open communication with your doctor. Keep posting here on this forum, so we can help answer any questions/concerns you might have. I have stage 3 CKD at 59. My doctor is hoping that my reading will go above 60 too when I test next week. I am at a wait and see as well. Better to be at a wait and see then looking at dialysis. My doctor did tell me at this time to avoid OTC pain medication as the medication causes stress to the kidneys and also for me to avoid anything that would cause stress on the kidneys while on this 'wait and see' situation. That would be to avoid a high protein diet. There is a lot more to this, but depending on the test result that you are taking today will depend on what is next, please keep us posted. As ddarling suggested chefnancy can give you more info about prednisone, I understand your concern here, but am not able to address your concerm about the med.

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      • #4
        Re: Should I see a Nephrologist Now?

        hi everyone i got a question i thought if you got kidney disease that you arent suppose to take prednizone my urologist doesnt like the idea when my pcp doc put me on it and he said she shouldnt have me on enything like that has anyone experienced this from there urologist thanks

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        • #5
          Re: Should I see a Nephrologist Now?

          Hi Charlie025 - my GFR is 45. It was 52 when they first detected a problem (quite by chance) but over the last year it has fallen to 45. My doctor thinks this is stable and so I'm still in the 'keeping an eye on it phase'. If it has dropped when I get my next set of bloods done I'm going to ask to be referred, although in the UK they don't refer anyone until it drops to 35 or it drops dramatically, or unless there's an obvious cause. They do tend to only formally say you've got CKD once you've had 3 consecutive blood tests which are in the same (low) range - again that's in the UK. In the UK these three tests are usually 3 months apart in the first instance. I'm guessing your doctor is waiting to see if these current results are genuine or if they are glitches that will improve. I have noticed that you guys in the USA seem to get referred earlier - that's a great thing.

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          • #6
            Re: Should I see a Nephrologist Now?

            Charlie, I would stick with the GP and ask to be tested in another 90 days to see what happens. You will probably need a referral from your GP to get an appointment with a nephrologist and a nephrologist is probably at this stage just going to say "wait and see" and charge you more money to tell you that. If your numbers continue to slide then would be the time to ask to see a nephrologist. You might benefit by visiting www.kidneyschool.org. This site will give you a good education about the disease and its treatment and may give you a better perspective on things. As for the prednisone, I have a personal aversion to it because of bad side effects, but a short course can jump start kidneys that are recovering from an acute decline (as opposed to a chronic one). If your doctor offers it, it would be up to you whether to take it. There are advantages and disadvantages in taking any steroids.
            To the stars through difficulty!

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            • #7
              Re: Should I see a Nephrologist Now?

              When I left my message, I figured I had a 50/50 chance of a response in a few days; I didn't expect the number and depth of responses I received so soon.

              Thanks to everyone for taking the time- You all are great.

              I dropped off a 24-hour test Friday; they took blood at that time. Even though I don't think I'll see any significant data change in so short a period, it would help my outlook if I saw any kind of lower Creatinine values (anything beats an increase).

              I've found references that say to expect 6 to 8 weeks after discontinuance of the offending drug for the largest portion of the GFR to return (if it does return), and the better part of a year for any residual improvements. The papers did give the impression that steroids helped; I might question my GP about them once again.

              ChefNancy, you said the side effects of the steroids got to you- Could you tell me what some of them were?

              I took the Azithromycin (500 mg BID) until the 8th of February. The half-life of the drug kept it in my system until the 16 (according to my Dr.), so it's been about 3 weeks since the "offending drug" was removed. What really worries is that during that time, after the problems started from the Azithromycin (I was still clueless about the cause), I had an angiogram w/ technitium contrast. Sometimes I just can't win.

              Let me ask you all about a symptom- Do any of you get chills, or have you become more sensitive to cold? I used to be the guy who had to have the a/c down low at night because of body heat, but now I'm more likely to wear a heavy shirt and sleep under the covers all night.

              Anyway, thank you all so much for taking your time to respond. It helps. Maybe I can return the favor someday.

              Charlie

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              • #8
                Re: Should I see a Nephrologist Now?

                Yes, Charlie, the cold goes along with it for some of us. Some worse than others. I'm one that is cold all the time and only survive by wearing sweatshirts over other clothes, even to bed! And have an electric afghan over my head any time I sitting down. Sit in church with a heavy sweater and my coat during the whole service! And I used to be one that never wore a coat but maybe 3 times all winter! Wore shorts all winter (in the house)! LOL! This CKD certainly changes things!
                My Writings

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                • #9
                  Re: Should I see a Nephrologist Now?

                  I seem to always feel cold....I can't wait for summer!!
                  As for the steroids - I am not on any but I have read that prednisone had some pretty bad side effects for a lot of people.
                  ~ddarling~

                  Comment


                  • #10
                    Re: Should I see a Nephrologist Now?

                    Well, I was having a decent day until I got my test results this morning.

                    Does anyone know how much creatinine values can jump around from week to week? From the 3rd of this month to 3 days later on the 6th, I've gone from 1.36 to 1.48. I know I'm grasping at straws here- I'm hoping that these values are just bouncing around from tests taken too close together, and aren't related to a fast slide downward. I hope the slide stops. I think I may accept the steroids.

                    I don't understand the significance of the 24-hour test when compared to the blood test... The 24-hour overall creatinine was 163mg, which the test range reference says is okay. How can the blood test be so out of whack, while urine creatinine values are centered on "normal"? One bad thing in the 24 hour test was that the protein was 3 grams (in a 1.9 liter sample). I hope the slide stops.

                    You know, if I don't step back and take a deep breath, I'm going to go nuts. I'm not getting much work done while I worry about this, which might not be a good idea. I work at a university in the Texas Medical Center here in Houston- I'm not in medicine, but I have access to all the journals, etc., and have caught myself obsessing as I do Medline searches for information. It's not easy to get my mind off of this. I have a wife and 13 year-old son...I fear becoming the semi-disabled dad thats always sick and unable to show up at his son's games, functions and campouts.

                    I apologize that this turned into a venting session.

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                    • #11
                      Re: Should I see a Nephrologist Now?

                      Charlie, yes CKD can cause you to be more sensitive to cold. However, in many cases this sensitivity to cold is exacerbated by anemia of kidney disease. Our kidneys make a hormone called erythropoetin without which bone marrow cannot make red blood cells. The lack of this hormone makes you have an anemia which may not be helped by taking iron pills. Fortunately there are synthetic forms of the hormone available by injection. How are your hemoglobin and hematocrit numbers? If they are low, that could be a reason why you are always cold.
                      Yes, the numbers can vary from day to day and even hour to hour by as much as you have indicated, so it sounds like you are probably holding steady. You will have to ask your nephrologist why your serum creatinine numbers are so different from your 24 hour urine values.
                      Don't worry, this disease can be managed and you will still be there for your family. You are at an early enough stage that you have lots of options. BTW, my guess of the "offending substance" would more likely be the dye from the angiogram than the Azithromycin. But your nephrologist would be a better judge of that.
                      Keep coming back and asking questions. We are here to support you.
                      To the stars through difficulty!

                      Comment


                      • #12
                        Re: Should I see a Nephrologist Now?

                        Originally posted by Charlie025 View Post
                        Well, I was having a decent day until I got my test results this morning.

                        Does anyone know how much creatinine values can jump around from week to week? From the 3rd of this month to 3 days later on the 6th, I've gone from 1.36 to 1.48.
                        Hi Charlie,

                        Welcome to the forum.

                        When I was in the hospital in October, my creatinine was 1.7. In November (not even one month later), my blood test showed that my creatinine was 2.1. I asked my renal doctor why the number jumped up so quickly, he told me that different lab may have a slight different value. I am not sure if this is your case.

                        pal

                        Comment


                        • #13
                          Re: Should I see a Nephrologist Now?

                          Charlie,
                          Sorry this is happening to you. Your life is not over and you will still be able to go to your sons games, even if your kidneys fail. Don't worry! There are so many people with kidney problems I would be surprised if you didn't personally know 2 or 3 and not even know they have a problem. I don't mean to be understating side effects or kidney disease, I am just trying to say your life is not over.

                          That said, I want to tell you what Prednisone did to my husband. He was on 60 mg of Prednisone with 2000 mg of Cellcept. He was MISERABLE to say the very least. He felt like he was going crazy and very confused, got pimples all over his chest neck and face, puffed up like a puffer fish, internal/organ pains, I cannot remember all the side effects and I asked him, he can't remember either. He asked for it to be reduced, they lowered it to 40 mg. Some side effects went away but not all. He was on it 10 yrs ago but only 5 mg,10mg alternating every other day and it was OK.

                          Good luck to you!

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