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  Thursday, 01 November 2018
  11 Replies
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Hi everyone,

I had Good Pasture Syndrome at age 11 and as a result, my kidneys were damaged. I am currently 41 (M) and have an eGFR of 32. My creatinine is 202 and I am quite stressed about my declining function and increasing creatinine. My blood pressure is fine and I take Coversyl 4mg per day (just increased to 8mg to protect kidneys) and allopurinol to prevent gout. Interestingly, I do not know if I should take 4mg twice a day or one 8mg dose in the morning. I do not smoke and am not obese. What can I do to increase my function and reduce serum creatinine? Should I restrict protein, salt, phosphorous, stop drinking all alcohol, avoid soda, etc.? I have read recently that Vitamin B1 (Thiamine) can help but I just have too much information. If you were in my shoes, what steps would you take to ensure your function remains stable for as long as possible?

Thanks for your help and tomorrow, I can provide more details on my last blood test to add context.


Would you happen to know how much urinary protein you have? This is measured in either grams per day on a 24 hour urine or using an albumin to creatinine ratio on a spot urine sample.

Regarding the question about coversyl, I usually dose it once per day as it is quite long-acting.

Dr. Jordan Weinstein
5 years ago
Thanks Dr. Weinstein. I will have the lab report in front of me in the morning. I recall seeing 2+ for protein in urine and the albumin to creatinine ratio was about 150. Once I see it, I can tell you how it is measured (i.e. mmol or whatever it is) but you might already understand the number. I'll post my urea, creatinine, uric acid, protein in urine then. Thanks for the tip on Coversyl. I was told it could make me weak and I do get dizzy and blurry vision when standing as it is now and am super tired.
If your blood pressure tends to be on the lower side, then dividing the coversyl is reaosnable. It sounds like if the albumin to creatinine ratio was that elevated (depending on the units), then your provider wanted to increase the dose of coversyl to twice a day to reduce protein excretion without causing low blood pressure. I would agree with this. In general, with any chronic kidney disease, the goal would be to minimize urinary protein to less than 1g per day and to maintain excellent blood pressure control (without causing symptomatic low blood pressure). Protein restriction is debatable and I personally do not reccomend it strictly, though I do tell patients to avoid supplementing their diet with protein.

Dr. Jordan Weinstein
5 years ago
Yes, I will get the units and specifics in the morning. He did not specify Coversyl twice per day. He said one dose or two, no preference. I guess I am nervous that if I take it in one dose, I could get low blood pressure but my pharmacist recommends one dose. My blood pressure is generally pretty good when tested, but I think I may ask for a 24 hour blood pressure monitor. It is usually 120/80 to 130/90 but I cannot speak to the fluctuations during the day due to stress, exertion, etc. I know I get very tired, headaches, dizziness, etc. Thanks again and I will post details in the morning.
5 years ago
Update with my latest bloodwork information: Urea 10.0 mmol/L, Creatinine 202 umol/L, Uric Acid 406 umol/L, Urinary Protein (Spot) 2+, Protein/Creatinine Urine Ratio (Spot) 192.3 mg/mmol, uALB/CR/Ratio (Spot) 154.6 mg/mmol. I will be doing a 24 hour urine in three months. I did get my Creatinine down from 213 three months ago by cutting protein a lot, but my doctor says to just eat and drink normal.

Going back to my initial question, what are the top things that affect my levels and what can I do to preserve as much function as I can for as long as possible. I don't want to get dialysis and not be able to travel. I also take Wellbutrin SR and I have read that can cause renal problems so I am considering stopping that. Essentially, everything I put in my body, I am afraid could hurt me whether it be a soda, a steak, or a pill. Thanks very much.

The priority would be to ensure excellent blood pressure control and a reduction in the urinary albumin to creatinine ratio. Blood pressure control alone will help as will maximizing your coversyl. I would ensure you are not supplmenting your diet with protein and a dietitian can assist with that. You might also consult with your nephrologist who might suggest additional strategies such as combining your coversyl with a mineralcorticoid receptor antagonist - however this suggestion is controversial. I have not considered Wellbutrin to be nephrotoxic (harmful to the kidneys).

Dr. Jordan Weinstein
5 years ago
Thanks Dr. Weinstein. Every time I have a can of soda or a beer, or anything really, I feel like I am shortening my time to dialysis. I cannot drink only water, that is not realistic. Thanks for your help and I'm going back in three months so will see if the double-dose (4 to 8mg) of Coversyl helps. I should come back and post then.
I would not feel that way. You need to be able to enjoy your life. And those things you mentioned (an occiasonal can of beer or soda), in my opinion, will not have any impact on your kidney function in the long run.

Dr. Jordan Weinstein
5 years ago
Thanks again. I might have one can of soda a day but am trying to switch to sparkling water or whatever. I read too much online about how artificial sweeteners, dark colas, alcohol, etc. can harm your kidneys. I am glad to hear this is not such a big deal and you are right, enjoying life is important!
5 years ago
I want to avoid kidney disease, have high blood pressure and creatine level of 1.0 I am almost in control of BP averaging, with alot of exercise
about 80 / 135. However the GFR number is only 55 . If I could lower the Creatine level to even .09 or better yet .08 it raises GFR substantially . , to 76 .
I never drink soda , I drink only Spring water , or vegetable juice which I make myself .
The sodium level in my blood measures 144 which is very high . But i never add salt to anything ?
Please advise . I'm 69 years old.
4 years ago
I am a pkd patients since 2008. My creatinine is 14.90 and GFR of 3.6. I want to ask if I am allowed to eat lean meat and chicken because I'm doing a renal diet on my own. I just try those recipes or foods I watch in YouTube. But I'm afraid to eat meat that it might stress my kidneys. I am only eating lots of fruits and veggies and fish as a protein diet.


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