Stage 4 CKD

Posted by b2byrne @b2byrne, May 18 1:48am

Hi,
Last week Nephrology informed me that my kidney now functioning 22%
Even though I've been under the clinic for about 7 years I still struggle to understand why I have kidney problems. They don't know why either - none of the listed possible causes seems to apply to me but today on your site I read being African descent can be a factor. The kidney specialist I've been under has never mentioned this.
They now want to change my meds from Losatan to Dapaglifozin. Although it's medication for diabetes (which I do not have) he is telling me it could work to slow down the decline. But also it might not have any effect. Should I trust this? The side effects are horrendous.
Since they discovered I have CKD my once unbelievably low blood pressure has been rising. I put this down to the meds they've been giving me over the years. My blood pressure is now normal. Previously the phrase was "if you were not sat here I would say you were dead" it was that low. But I was a very active person in great health so it never bothered me. Has anyone out there used this Dapaglifozin as part of their treatment? Did it make a difference? The side effects are horrendous. I am so fearful of going on it. I am fearful my blood pressure keeps rising. I am fearful I have since developed high cholesterol since CKD treatment began. What's next?

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@b2byrne I am not a diagnoser but you indicate you have been at a clinic for 7 years with no previous kidney problems nor diabetes. CKD means chronic which means a continual problem with kidney disease over a long period of time. If the clinic over time has been checking you for cardiac blood pressure, they most certainly would also have been checking you for kidney disease as blood pressure is a precursor to CKD. Have you had an accident or injury lately as this appears to be acute rather than chronic?This may be the time to get a second opinion outside of your clinic, if possible, for both nephrology and cardiology.

REPLY

I’m diabetic and I have stage 4 CKD. I am unfamiliar with the med Dapaglifozin. You say it is a med for diabetes? Your doc has you on “Losatan”? Do you mean Losartan? That is a med for treating blood pressure. I’m not understanding how swapping Dapaglifozin for Losartan makes sense?
Diabetes and high blood pressure are common leading causes of CKD. I see an endocrinologist for diabetes care and a nephrologist for kidney care. They are part of the same healthcare system. They have access to my records and can collaborate on my healthcare plan.
My nephrologist also prescribes blood pressure meds for me. One of which is Losartan. My blood pressure is well controlled and they have me monitoring it at home. You can get a cuff and recording system to use to share your records with your provider.
Is your nephrologist your main provider? Are you Afro-American? I read in a Mayo Clinic Press book that there is a gene that folks of African descent can have that predisposes them to kidney problems. The book is called “The Body’s Keepers” by Paul L. Kimmel MD I think. I don’t recommend reading the book because it was a terrible slog getting through it. But I never heard of that gene before and it’s potentially rotten effect on people of African descent. I think the gene was called APOL-1 or something like that. Various clinical trials and research have stemmed from it. Anyway it might be something you could ask your nephrologist about?

REPLY

@b2byrne I replied too soon. I am no reading the Mayo Clinic Essential Diabetes Book by M. Regina Castro M.D. It is available from Mayo Clinic Press. In it is an appendix on non insulin medication for Diabetes. Hang on, I know that you aren’t Diabetic but I found the Dapaglifozin in there. I do know it after all. The brand name is Farxiga. It is currently heavily being advertised on TV etc. This is what I learned about it and it might apply to you after all. It is in a class of drugs called
SGLT-2 inhibitors. It works by “causing urinary loss of glucose and salt.” Main advantages are that “some of these agents reduce the risk of heart attack, stroke, kidney failure, heart failure and death; possibly improve fatty liver.” The main disadvantages / side effects are “increased frequency of urination, dehydration, urinary infection, genital yeast infection, diabetic ketoacidosis; can be expensive”. Your nephrologist might be on to something. Could you ask him to explain the reasoning behind his recommending this med?

REPLY
@collegeprof

@b2byrne I am not a diagnoser but you indicate you have been at a clinic for 7 years with no previous kidney problems nor diabetes. CKD means chronic which means a continual problem with kidney disease over a long period of time. If the clinic over time has been checking you for cardiac blood pressure, they most certainly would also have been checking you for kidney disease as blood pressure is a precursor to CKD. Have you had an accident or injury lately as this appears to be acute rather than chronic?This may be the time to get a second opinion outside of your clinic, if possible, for both nephrology and cardiology.

Jump to this post

Hi,
Thanks for your response. I had a urine test which showed protein in my urine. I was put on medication to help with this and from then everything just escalated. My extremely low blood pressure has been on the rise ever since treatment and monitoring. About three years after, a blood test showed my cholesterol to be too high. It was showing at 5. So medication was given to control that. Despite everything (endless meds, gym etc), cholesterol is now 8+ level. A lot of it shows under 'bad' cholesterol. It could be genetic, but I seem to be the only one in the family of 5 with High cholesterol. I am not overweight either. I am not diabetic and my blood pressure is now down as 'normal' . I am in the UK so I don't know if a second opinion is an option. I am under nephrology, and Cardiology. My GP also has input. I did get further advice on the new suggested medication "Dapaglifozin". Looking like I will try it.

REPLY
@cehunt57

I’m diabetic and I have stage 4 CKD. I am unfamiliar with the med Dapaglifozin. You say it is a med for diabetes? Your doc has you on “Losatan”? Do you mean Losartan? That is a med for treating blood pressure. I’m not understanding how swapping Dapaglifozin for Losartan makes sense?
Diabetes and high blood pressure are common leading causes of CKD. I see an endocrinologist for diabetes care and a nephrologist for kidney care. They are part of the same healthcare system. They have access to my records and can collaborate on my healthcare plan.
My nephrologist also prescribes blood pressure meds for me. One of which is Losartan. My blood pressure is well controlled and they have me monitoring it at home. You can get a cuff and recording system to use to share your records with your provider.
Is your nephrologist your main provider? Are you Afro-American? I read in a Mayo Clinic Press book that there is a gene that folks of African descent can have that predisposes them to kidney problems. The book is called “The Body’s Keepers” by Paul L. Kimmel MD I think. I don’t recommend reading the book because it was a terrible slog getting through it. But I never heard of that gene before and it’s potentially rotten effect on people of African descent. I think the gene was called APOL-1 or something like that. Various clinical trials and research have stemmed from it. Anyway it might be something you could ask your nephrologist about?

Jump to this post

Hi,
"Do you mean Losartan? That is a med for treating blood pressure. I’m not understanding how swapping Dapaglifozin for Losartan makes sense?"
Yes Losartan is what I am currently on. I was initially put on Simvostatin when they first diagnosed CKD. However, when the High Cholestrol was diagnosed and the Cholestrol specialist advised I be put on Rosuvastatin, I was taken off Simvostatin and put on Losartin. (to ensure my blood pressure did not drop any further). I now remain on Atorvastatin & Ezetimibe for High Cholesterol and Losatin for my kidney function.
To be honest I can't keep up with the med changes and what they are meant to do. I wrote on here seeking advice and wondering if I had been too trusting of my medical team over the years.
I am Black British - and have been tested for the "the gene was called APOL-1 " I don't have it. My condition is a mystery to everyone. They don't know why my kidney function keeps dropping, and all the meds are just trial and error it seems.

I recall in my 20s during a holiday in India I had a urine test done. I was told then I had a lot of protein in my urine. At the time it didn't mean a lot to me. (that's only recently coming back to mind. that was 30+ years ago)

REPLY
@cehunt57

@b2byrne I replied too soon. I am no reading the Mayo Clinic Essential Diabetes Book by M. Regina Castro M.D. It is available from Mayo Clinic Press. In it is an appendix on non insulin medication for Diabetes. Hang on, I know that you aren’t Diabetic but I found the Dapaglifozin in there. I do know it after all. The brand name is Farxiga. It is currently heavily being advertised on TV etc. This is what I learned about it and it might apply to you after all. It is in a class of drugs called
SGLT-2 inhibitors. It works by “causing urinary loss of glucose and salt.” Main advantages are that “some of these agents reduce the risk of heart attack, stroke, kidney failure, heart failure and death; possibly improve fatty liver.” The main disadvantages / side effects are “increased frequency of urination, dehydration, urinary infection, genital yeast infection, diabetic ketoacidosis; can be expensive”. Your nephrologist might be on to something. Could you ask him to explain the reasoning behind his recommending this med?

Jump to this post

Hi,

You have highlighted everything I know about Dapaglifozin. It was the pages and pages of side effects that worried me sick including possibility of death. I read and read and perhaps I should not have. The Nephrologist gave the positive reasons you explained above.
Having spoken to another GP who has had patients on Dapaglifozin I have decided to move forward. The GP said over the three years that she has seen patients on this medication the frequent side effects have been urinary infections. That does worry me, but I have tried to weigh up the odds. At the moment I am up 4 / 5 times a night to urinate sometimes more so deep sleep is minimal. I am hoping that doesn't get worse.

REPLY
@b2byrne

Hi,
Thanks for your response. I had a urine test which showed protein in my urine. I was put on medication to help with this and from then everything just escalated. My extremely low blood pressure has been on the rise ever since treatment and monitoring. About three years after, a blood test showed my cholesterol to be too high. It was showing at 5. So medication was given to control that. Despite everything (endless meds, gym etc), cholesterol is now 8+ level. A lot of it shows under 'bad' cholesterol. It could be genetic, but I seem to be the only one in the family of 5 with High cholesterol. I am not overweight either. I am not diabetic and my blood pressure is now down as 'normal' . I am in the UK so I don't know if a second opinion is an option. I am under nephrology, and Cardiology. My GP also has input. I did get further advice on the new suggested medication "Dapaglifozin". Looking like I will try it.

Jump to this post

@b2byrne @cehunt57 Dapaglifozin is Farxiga here in the states and is popular with many endocrinologists and nephrologists, especially. There are 2 main reasons for the medication Farxiga which involves itself with type 2 diabetes and CKD. In other words, there is a diabetic dose and a much double stronger dose for CKD, which you apparently have. Regardless of what dose you take, make sure you read all the side effects of this drug including constant urinating during the day and night. My nephrologist at the time, prescribed it to me twice, and both times my eGFR went down to 18 or 19, which is stage 4. I created a spreadsheet over a 2 or 3 year period showing when I started and stopped the Farxiga diabetic dose. It wasn't pretty for me using this drug. I also had another nephrologist who had only 1 or 2 patients taking the drug. It did not fit into his practice and was reluctant about using it. Online, as I recall, there were mixed views about the product, but I don't trust online medical reviews. Many health studies have shown, however, that this drug can be effective for CKD, but beware of the side effects.

The interesting part of all of this is how you could end up with kidney disease without being a diabetic or having a continual chronic cardiology problem. A kidney function of 22% is low, but there has to be a reason like an injury, accident or inflammation. It's important you find out the source.

REPLY
@collegeprof

@b2byrne @cehunt57 Dapaglifozin is Farxiga here in the states and is popular with many endocrinologists and nephrologists, especially. There are 2 main reasons for the medication Farxiga which involves itself with type 2 diabetes and CKD. In other words, there is a diabetic dose and a much double stronger dose for CKD, which you apparently have. Regardless of what dose you take, make sure you read all the side effects of this drug including constant urinating during the day and night. My nephrologist at the time, prescribed it to me twice, and both times my eGFR went down to 18 or 19, which is stage 4. I created a spreadsheet over a 2 or 3 year period showing when I started and stopped the Farxiga diabetic dose. It wasn't pretty for me using this drug. I also had another nephrologist who had only 1 or 2 patients taking the drug. It did not fit into his practice and was reluctant about using it. Online, as I recall, there were mixed views about the product, but I don't trust online medical reviews. Many health studies have shown, however, that this drug can be effective for CKD, but beware of the side effects.

The interesting part of all of this is how you could end up with kidney disease without being a diabetic or having a continual chronic cardiology problem. A kidney function of 22% is low, but there has to be a reason like an injury, accident or inflammation. It's important you find out the source.

Jump to this post

@b2byrne @collegeprof has offered some great information. I agree, finding the root cause of lowered function is important for everyone! The two top causes are uncontrolled/untreated diabetes or high blood pressure. Also on the list can be lifestyle choices, long term medication side effects, infections, inflammation, other health conditions, and kidney injury of some sort.

Have you had the chance to look into any new medications you are on, and side effects. Making a list might be a good place to start, and using drugs.com as a source, or Mayo Clinic will give you comprehensive information.

I look forward to hearing more from you, what you find out!
Ginger

REPLY
@collegeprof

@b2byrne @cehunt57 Dapaglifozin is Farxiga here in the states and is popular with many endocrinologists and nephrologists, especially. There are 2 main reasons for the medication Farxiga which involves itself with type 2 diabetes and CKD. In other words, there is a diabetic dose and a much double stronger dose for CKD, which you apparently have. Regardless of what dose you take, make sure you read all the side effects of this drug including constant urinating during the day and night. My nephrologist at the time, prescribed it to me twice, and both times my eGFR went down to 18 or 19, which is stage 4. I created a spreadsheet over a 2 or 3 year period showing when I started and stopped the Farxiga diabetic dose. It wasn't pretty for me using this drug. I also had another nephrologist who had only 1 or 2 patients taking the drug. It did not fit into his practice and was reluctant about using it. Online, as I recall, there were mixed views about the product, but I don't trust online medical reviews. Many health studies have shown, however, that this drug can be effective for CKD, but beware of the side effects.

The interesting part of all of this is how you could end up with kidney disease without being a diabetic or having a continual chronic cardiology problem. A kidney function of 22% is low, but there has to be a reason like an injury, accident or inflammation. It's important you find out the source.

Jump to this post

Hi
I started Dapaglifozin two weeks ago. Tomorrow I will attend blood check to see if it's had any impact and also this week I am booked for a CT scan to again see if anyone can work out a cause for the decline.
So far I've not noticed any side effects from Dapaglifozin. I know it's early days.

With regards to trauma I am wondering if a car accident I had around age 9 would have traumatised my kidneys. It was a bad accident and I was hit from the side and went over the car. I've never given this a thought.

REPLY
@b2byrne

Hi
I started Dapaglifozin two weeks ago. Tomorrow I will attend blood check to see if it's had any impact and also this week I am booked for a CT scan to again see if anyone can work out a cause for the decline.
So far I've not noticed any side effects from Dapaglifozin. I know it's early days.

With regards to trauma I am wondering if a car accident I had around age 9 would have traumatised my kidneys. It was a bad accident and I was hit from the side and went over the car. I've never given this a thought.

Jump to this post

@b2byrne You pose a good thought, that long-ago kidney trauma could have long-term effects. Sometimes it takes additional stressors to bring the decline to the forefront. Don't forget to mention that to your medical team, when you are figuring out the cause. It may help them and give you all guidance to seeing what is going on!
Ginger

REPLY
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