Ok, so when first realized I had CKD two years ago, my protein was 600. Given 2.5 MG of Lisinopril and BP dropped to 100/60 etc. Protein went to zero...for the most part all other tests notn except light chains due to ckd...fast forward to recently === protein sneaking in and BP coming up, light chains increasing. Otherwise orher tests normal. I wanted SGLT inhibitors and even took two week samples given my PCP. Then saw the neph and was told Hell to the No on the SGLT and that Lisinopril was the best treatment for rje protein. And in a 24 hr same some protein is normal AND that some people have naturally higher creatine AND that stage 3 is nothing to worry about . Ok I'll just live my life then..but stick with Lisinopril and veggies and fruit and rice and beans. He said they could do a biopsy in the future, but for what? He suspected that I have some inflammation in my kidneys and that I should drink more water. Lisinopril works with water and I need to drink more. I did have a small stone but not blocking anything. They did the cat scan and the test where they inject an isotopes and then you pee a couple of times in a two hour period and that measures kidney function. Anyway. but they did find that ab ovary was enlarged so now that...for my age it should be much smaller, so apparently I have a tumor that is "complex" on that ...soild and cyst like. So I guess all that testing was good. This was all at Mayo Clinic .
NEPH said no to SGLT 2, said Lisinopril was... - Kidney Disease
NEPH said no to SGLT 2, said Lisinopril was best treatment for protein in urine.
Hi Roxanne, that's interesting. How old is your doctor? I ask because it sounds, to me, like old school ideas. I have a new neph, 1st apt in 3 weeks. Her web site says she will probably recommend SGLT II. Not sure how old she is but her picture shows her to be quite young, to me anyway. She is also certified in plant based diets, whatever that certification might mean. Glad you found out about the tumor. Good luck.
Just remember that Mayo doctors aren't paid extra to push drugs. My PCP who gave me the samples----likely gets a kickback from the company. The neph was younger than me, probably in his early 40s.
Sadly, any doctor in the US, whether they have a practice of their own or are directly tied to a hospital, can receive money from the pharmaceutical industry for prescriptions rendered. It's possible, though, that some hospitals launch periodic investigations to catch those who do it, although that would take time, money, and staff. There's a real dilemma with this because some great meds automatically disburse money to the prescribing doctor, so hands are tied. Someone needs to write a law to stop this across the board. There are at least three websites that track payments. This is one best one to use: openpaymentsdata.cms.gov/se...
Thanks for that website. I had one I used but can't seem to find it now. The last doctors I had didn't take any or very little from the big pharma
One of our nephrologists regularly receives around $25,000/yr in payments - apparently attending conventions (assuming arranged by big pharma), etc. I just noticed that the federal government is now monitoring these payments and the latest and most current data can be found here: openpaymentsdata.cms.gov/se...
All managed care in Minnesota is not for profit by law. My Dr.s can't take a penny. They are all salaried and don't make extra money on the side. I'm grateful. Since I live in a large metro area there is plenty of access to good Dr.s in my plan.
Yes, Minnesota has strict reporting standards to track and prevent pharmaceutical companies from paying doctors for prescribing their products. Believe they can still pay them honoraria and expenses for conferences and meetings and serving as consultants, etc. (I'm neutral about this at the moment. ) But overall, I really appreciate the stance Minnesota has taken.
My HMO, HealthPartners, doesn't allow any free crap to it's Dr.s No notepads, clocks and all the other junk you see in many Dr. offices.Because they are salaried there is no personal financial incentive to order unnecessary tests either. Dr.s are upper middle class, but not billionaires.
Well, make that two good things about MN. 1.Mayo 2. no free crap for doctors
I'm sure blue cross providers still take tons of crap. I just know my plan doesn't.
You’re so fortunate. I wish it worked that way everywhere. My gout exploded after I took some samples of BP meds called, “Coversil Plus”, that my doctor gave to me years ago. I remember reading the side effects that included “can cause gout”, but because I already had gout (just minor at the time), I thought I wouldn’t need to worry about that. But I was wrong. It went from small flares that at the time, only occurred in my big toes, and then began to affect my fingers, wrists, elbows and shoulders/neck after taking the meds.
There should be laws that prevent pharmaceutical companies from providing an incentive for doctors to score profits by ruining their patients’ lives.
WOW! I bet you can go into most offices and walk out with something.
Oh I can't! No one dares! Cuz I have SO many issues! I'm so sensitive (my entire body &skin) ugh!!
Neither my neph or PCP receive any payments, according to the website. I'm not a fan of "pills" as due to my petite stature I tend to have weird side effects. Statins gave me daily migraines that nothing would help. Right now I'm trying Zetia and so far so good but given my family's history of high cholesterol it might not work.
Good to know. I’m so close to 15…
I think a lot of this got worse when they started allowing drug companies to advertise on TV. People go to the doc now saying they have "x" and need the drug they saw on TV. Rather than a good diet and exercise some people want a pill to help them lose weight all the while continuing to eat badly and not exercise.
May I ask then should I take a statin the poison pushed by big pharama. If it can stop the progression of CKD it’s bad? I take 2 pharmaceuticals lisinopril and a Cox 2 inhibitors. My triglycerides are 345 and cholesterol 245. Have been since I was 17. I suffer from hereditary hyperlipidemia. I am in a wheelchair. Suggestions? Should I just die? I am not seeking an easy way out but I don’t understand the reluctance to medicines if they are proven. This is a life changing degenerative illness with no hope for a cure currently. Except 1960s tech. Finally money is being shoved to our affliction leading to terrific breakthroughs and you want to crap on it? Makes no sense! Did you read the studies? Please do because they are exciting.
My eGFR is 17. I’m 55 likely I’ll have to face the dialysis question sooner rather than later. I don’t have a normal lifespan left but I’d like what’s available and not be stuck in some home debilitated from a stroke. We’re you vaccinated? No studies on humans and you can’t vaccinate against an airborne respiratory illness!
Don’t short change yourselves folks. Knowledge is power! Get some. Of course we are all different but still. I suffer brain fog and I hate it. I have Idiopathic Periphery Nephology. Stage 5 and cannot feel my feet. Haven’t in 2 years. These last 2 years have sucked but I have a wonderful family. Should I deprive myself of that? I suffer greatly from depression because I can’t provide but I’m still trying! I was a business owner for 30 years helped all kinds of people yet I lost it all and was homeless in my 50s! Last year my family and I spent 6 weeks on the street. But their May be a drug that can change that? Yet I’m just lazy? I deal with that everyday so I get it…but still. I provided a really good life for my family but CKD cost me all of it. Now I’m unworthy? I play that game everyday. I’d rather be working but not an option. Finally some safety nets kicked in and thing are much better but I still feel worthless most days! I’m a US Army Vet so that helps. I got social security disability helps. I feel like a burden to those who mean the most to me and that sucks. Bad enough with CKD when I just feel bad.
Anyway pity party over. Do you know the first 6 months of dialysis mortality rates increase nearly 85%. With my comorbidities I don’t stand a chance. So I’d like to avoid that. According to the NKF practice guidelines I’m 300% more likely to die than a non-CKD man of 55. And I’m mean 55 that prime CVD time. Outlook isn’t bright but what can you do? Only your best! Why not load your toolbox? A hammer isn’t the answer to every problem! Not picking just trying to get you to think deeper. Why would you be your own worst enemy rather than your best advocate? Especially with your healthcare system? Docs don’t listen, so you can’t advocate as you should. So read the studies then form an educated opinion. It’ll serve you well in future. If you still believe I’m looking for an easy solution that your right and who am I to take that away…no one but at least come from facts.
These drugs offer according to all the studies hope CKD patients had had since the development of ARB’s Had health professionals ignored cancer or heart disease like CKD they’d have been criticized as they should be. Yet no advances in CKD research since the ‘90s. Now progress embrace it!
Anyway hope I didn’t offend as not my intention. For your viewing pleasure…link: as always I wish you the best!
Roxanne I’d get another nephrologist as it is my opinion yours is behind the times but just my humble opinion. Good luck!
No doubt. Something is wrong and they just cant figure out what. If nothing was wrong, I would not be spilling protein and having my eyelids swell with too much of some foods.
I started spilling protein last year. Mine is probably age and 26 years in stage 4. I’ll let you know on the Jardiance. I’m convinced as I have read all the studies, ASN has recommended all the member nephrologist prescribe these meds as first line treatment to stop kidney deterioration due to “traditional” CKD causes. Not replacing Lisinopril but with. Seems the two benefit both the CKD progression and lower CVD risk and hopefully get my docs off the statins talk! Most likely I won’t be approved for a transplant due to the other comorbities and won’t live long enough to benefit from whatever come relative soon to replace dialysis. So at eGFR 17 I need to buy probably 10 more years (realistically) to avoid long term dialysis or early death due to kidney faliure.
Roxanne, I firmly believe there will be no need to push doctors to prescribe the class of drugs I’m referencing because so far all trials, normal trials like all pharmaceuticals must do to be approved not this “expedited” approval BS that allowed harmful and potentially deadly “vaccines” to be approved cause the doctors at desks thought COVID was the second coming of the Black Death. But both drugs currently approved for non-T2D CKD treatment significantly outperform the protections offered by Lisinopril. Can stop eGFR decreasing and preserve remaining kidney function. But only in “normal” causes of CKD. May not be for you but worth a look at a study or two if you are into such things. If I can take it, and my sub20 eGFR may be and issue, but if I can I do believe it’s the ticket to get me 10 years without dialysis! That’ll probably wrap up this part of life and start the best part! Anyway, when you get some time take a look. Oh and ASN is recommending to the member nephrologists all prescribed first to limit high cholesterol, reduce CVD risks and slow or stop eGFR decline. Lisinopril Is a pretty good HBP drug which helps limit spillage due to FURTHER damage but not much and not beneficial to 3 separate problems many of us have. Take a look cause I’m sure you are aware what spilling protein is indicative of….
you really got me thinking...
Tell me if I’m wrong, but I believe that is what we are supposed to do for each other. For 20 years I have volunteered to help new CKD/AKI patients cope with their diagnosis, so I know how valuable good information about new treatment modalities is. Especially now with (finally) money being adequately allotted to our shared affliction so new advancements are almost daily. Just don’t rule it out. I asked my nephrologist if he knew of the ASN or was a member. He is so I suggested he go to their site and do his own research. He did that night and he called the next day saying he believed it would change his practice enabling him to hopefully effectively stop declining eGFR in all his patients. Just a thought.
that is encouraging. I lost faith in Mayo when they kept trying to vaccinate me for covid
Amen girl….I did get COVID but I stayed in the camp that any new technology with the code “rna” in the name and rushed to market might not be on the up and up especially when foreign countries has 8-9 different manufacturers and we had the two largest hiopharam companies in the world. Looks like we were correct. Here is an eye opening website:
brownstone.org
Roxanne the second EMPA study on the effectiveness of Jardiance on significantly slowing of stopping CKD progression in non -T2D patients close early in April 2022. The major findings:
Stopped CKD progression down to eGFR 20
Reduced CKD CV mortality and event likelihood 50%.
Lowered proteinuria 37%
Lowered overall lipids
Benefits for heart failure and BP.
Safety: the majors issue with all SGLT2 is thought to be keto acidosis. However, in the second study I am referencing the group taking placebo has higher occurrences of keto acidosis then the group taking Jardiance.
I just found this and I don’t know they were doing 2 specific studies. Jardiance is not approved yet but Farxia is approved in US. FDA has granted Jardiance fast track approval.
The two EMPA studies are the only studies ( most all SGLT2 are or have finished studies to use to treat CKD) to include over half the participants with eGFR below 30. It was given all the way to eGFR 20, as well as, to include all stages CKD to include post transplant, during dialysis, with T2D and without T2D. I’ll post the link as well as an enthusiast article promoting SGLT2s he front line CKD treatment now.
google.com/amp/s/www.wistv....
kidney360.asnjournals.org/c...
Take care!
Thanks! I am going to take this up with the neph again. A low dose will not hurt me. And if I am still spilling protein, they need to try something else.
you got that right. The protein issues is concerning at least as I understand it. It is and indicator of kidney nephron damage ins active and as such needs to be stopped or reduced as much as possible ASAP. I’m not about adding another pharmaceutical but I can’t ignore the mounting evidence of the benefits of SGLT2s in a myriad of comorbities specific to me. Plus with my new approach to how to manage my CKD now…anything to avoid dialysis until dialysis is obsolete because of the artificial kidney or any of the innovations being explored now…it seems the correct way to go for me. Also now that I’m 55 with my hyperlipidemia and HBP that is most likely familia and with the development of my osteoarthritis putting me in the wheelchair that has limited or stopped my lifelong exercise regimen I am very concerned of a significant CVD incident. I am not concerned of an event resulting in death instead I’m concerned of an event that leaves me unable to speak, destroys brain function etc that makes me a complete burden on my family. I will never take a statin so I’m back to the Jardiance. Plus the massive amount if research that has been done in the last 5 years into these abd their benefits versus others plus limited downside I am if the opinion it should be given it’s opportunity. Finally I only that now, as far as pharmaceuticals, Lisinopril and a protein pump inhibitor no others. I do not have T2D so that may be another reason I’m open to the pill is I don’t take many now. I also take psyllium hush fiber, Omega 3 fish oil and a baby aspirin.
I’ll keep you updated in additional research and my nephrologist opinion ( if you want me to) do you can have the ammo needed to make your case if that is what you decide. I guess your case is important to me because of the insistence of your nephrologist that”the best way to treat protein spillage is the Ace/ARBs and dismissed the SGLT2. I think that is ( In my opinion) borderline malpractice because it is either laziness or ignorance and directly causes harm to patients by not giving them the opportunity to make a significant impact to control a life-threatening illness and provide both a normal life span but more importantly better quality of life. Especially in this environment where due to the proper influxes and money by the kidney advocacy agencies, informed and proactive physicians, and the government we have the money and research activities to make significant advances in CKD in the next 2-5 years. I am not trying to disparage your nephrologist specifically just the mindset of many physicians treating us. No offense of your doctors intended. I hope you’ll keep me updated if you don’t mind! Take care!
I totally get it!!
were either of you able to take it or decide to take it?
Not yet but I don't see the point if waiting till the protein is so high there is no stopping it
is yours still high?
150 a month ago. She upped the Lisinopril . 400 + without Lisinopril and low protein salt diet.
thanks
My insurance will cover inhibitors if over 300
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