Supplement questions: I have been doing some... - Kidney Disease

Kidney Disease

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Supplement questions

Bassetmommer profile image
BassetmommerNKF Ambassador
84 Replies

I have been doing some research and I always like to poll my fellow CKDer's on what they think and use. My question is this: What supplements do you take and why? I am mostly interested in finding out if anyone is taking resveratrol and/or grape seed extract and do you take both or just one or the other and why?

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Bassetmommer profile image
Bassetmommer
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84 Replies
jodaer profile image
jodaer

I take Vitamin 3D because I am deficient in it and have been prior to CKD. I take 2000iu daily. I might take other supplements but 1) don't know what company to trust and 2) what really works.

orangecity41 profile image
orangecity41NKF Ambassador

B12 was prescribed for peripheral neuropathy and for anemia, and cinnamon for sugar levels. . D3 was prescribed due to deficiency.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to orangecity41

Yes, I take B 12, B 6, Folate and Vit D too and also grape seed Extract. . I am seeing some really interesting research on resveratrol for renal improvement, but I like to check with real people who might be taking it.

WinJ3 profile image
WinJ3

My doctors said I could take a Multivitamin to cover micronutrients needs and the supplements below:

-Milk Thistle for liver and kidneys support.

-Saw Palmetto for prostate (BPH).

-Kirkland Triple Action Joint Health.

-Biotin 5000 mcg for my skin and nails.

-Grape seed Extract 300 Mg Capsules for cardiovascular health and cholesterol.

-Bilberry Extract 1000mg for its antioxidants.

-Prescription vitamin D for Deficiency.

Sophiebun11 profile image
Sophiebun11

I only take Vit D and B12 because my blood levels are low. I also take Calcium because I'm on Prednisone. I'm taking these on my Dr.'s advice.

Here's a medical study on resveratol and kidneys:

ncbi.nlm.nih.gov/pmc/articl...

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Sophiebun11

Thanks Sophie. I had seen that article and several others. It is hard to decipher the conclusion as to what they find because everyone is so cautious about making a declaration about CKD. It is so individual.

Marvin8 profile image
Marvin8 in reply to Sophiebun11

THANKS!

CatOnACloud profile image
CatOnACloud in reply to Sophiebun11

Might want to check your DHEA as you’re on steroids. Drs say it’s no big deal, but it can improve sleep quality and energy if low if you take DHEA or Pregnenolone (dhea precursor). Steroids. So fun!

Sophiebun11 profile image
Sophiebun11

I gathered that they don't believe it has any harmful effects, but aren't sure if it helps or not. So I guess it would be worth trying since there isn't a downside. Maybe I'll ask my Neph., but probably the Pred. I take already would have more anti-inflammatory properties so I'd be better off saving my money for my Vit D and calcium : )

Let us know how it works. Maybe try for 3 months and test your eGFR, then go off a month and test your eGFR again. That is what my Neph plans to do with my Pred. I'll go off for a month in Jan to check if my eGFR drops or remains the same.

CatOnACloud profile image
CatOnACloud in reply to Sophiebun11

Be sure not to stop prednisone abruptly but titrate down incrementally. If you take more than 7mgs a day, your adrenals stop making their own cortisol and will need the taper to adjust. You can get very sick very fast. Best

Sophiebun11 profile image
Sophiebun11 in reply to CatOnACloud

So true. I've taken Pred. for 13 years straight at 60 mg and as much as 100mg. Lately I only took 10 day titriting Pred starting at 20 mg. Then went off following lung infections and asthma. Now I'm only on 5mg. It won't make a difference to stop that. In fact, it will be good to get off. Even that little bit affects me almost as much as 20 mg. After being on it off and on for over 40 years my body is really screwed up by it, but it has kept me alive and is now helping my kidneys very much since my CKD is from an autoimmune disease. Thanks for the warning, I'm sure any Dr. who asked someone to go off for a month would do it slowly at a higher dose. My Neph is planning the one month off experiment, not me : )

CatOnACloud profile image
CatOnACloud in reply to Sophiebun11

I have found many doctors who do not taper folks down on steroids properly. When sensitive or with an adrenal insufficiency a 5mg pred taper is far too much. I’m glad that your body can handle it! You’re obviously knowledgeable after 40 years! I always try to mention possible steroid consequences in case the information is helpful. The adrenals are quite misunderstood! ;-) Best!

Sophiebun11 profile image
Sophiebun11 in reply to CatOnACloud

I have found that my Drs. know what they are doing so I'd rather drop this.

Jayhawker profile image
Jayhawker

My PCP has told me to take B12 Complex to improve sensation in my feet. That’s all I take currently.

Jayhawker

Chimama profile image
Chimama in reply to Jayhawker

I wonder hmmI was taking b12 stress complex and Centrum Silver Women 50 plus

I have stopped them cause I don’t know what to take anymore after blood work. But it’s really weird I been having burning sensations in my feet and numbness on left side of face . I’m so confused about what I need I spent the whole afternoon trying to stay awake and kept falling asleep. Now after midnight I’m still up grrr

Sophiebun11 profile image
Sophiebun11 in reply to Chimama

There's a blood test for B12 if you think you are low. You need to take a folic acid supplement along with B12 or the B12 doesn't absorb properly.

Jayhawker profile image
Jayhawker in reply to Chimama

I’m up too—just made another bathroom run🙂

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Jayhawker

This time of year, for some reason, I get bad insomnia. It starts right around Thanksgiving and lasts for a couple of weeks. I have had this since I was 13. NO reason why. Not worried about the Holidays. It just happens. Even my melatonin does not help. I sleep for about 4 hours and then I am up every two until I am so frustrated, I just get up.

Jayhawker profile image
Jayhawker in reply to Bassetmommer

Ugh

newbie1956 profile image
newbie1956 in reply to Bassetmommer

Could it be "seasonal depression" ? Very common.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to newbie1956

Could very well be. I hate the lack of light, leaves and flowers. Winter is not my favorite time of the year.

CatOnACloud profile image
CatOnACloud in reply to Bassetmommer

If my cat would pick another place to sleep but on my feet, I bet I could sleep better ha. Talk about persistent! Then restless legs come and forgettaboutit. Sleepless in Oregon ha!

Bond-007 profile image
Bond-007 in reply to CatOnACloud

Restless legs? How is your iron panel & Hg levels?

CatOnACloud profile image
CatOnACloud in reply to Bond-007

Hey, Bond. Yah iron’s low just dx with anemia—on iron now for about 3 months. Vit Bs are good, I supplement when too low. (Oopsies, wrote it wrong—fixed.) HG went from 15 to 11 and diagnosed it. Restless legs has been an issue for years although it seems much improved with the iron.

On Vit-D 50,000IUs 2X per week as well. Steroids cause and exacerbate deficiencies too so… Levels were 10 years+ 13-19, refused to go up. One 50k wasn’t enough, and only now are my levels 35-45. Vit-D2 (said it was better for my kidney than D-3).

Chronic, daily steroid doses play with these levels. I take DHEA as well, can’t make my own. Nearly 30 years of steroids due to adrenal failure 🤷‍♀️

Bond-007 profile image
Bond-007 in reply to CatOnACloud

Which B Vitamin is low? B12? 50k IUs of Vit D seems a bit high. That’s 100k/week. Or, 14K/day. I take 6K/day. Is it vit D3? What was your last Vit D blood work reading on 100k IUs of vit D/week? How much iron do you get & is it by pill? 15 to 11hg is big drop but 11.0 you want to maintain & not go below. Restless leg syndrome is caused by iron deficiency. Do you cook in iron skillets? What is your diet? Vegan, mixed, Mediterranean, Greger-Campbell, Dash, low protein? What stage of kidney function? 3? BUN/creatinine? GFR?

CatOnACloud profile image
CatOnACloud in reply to Bond-007

Edited original post— ooops not vitb deficient…

CatOnACloud profile image
CatOnACloud in reply to Bond-007

CKD-3, eGFR has run 45-63. Rt kidney and adrenal removed in 1989 at 17 years of age due to undiagnosed birth defect. One kidney means auto CKD. Creat is below 1.0 now, no issues. I eat plenty of red meat and salmon and chicken. I just got over a 5 month bout of colitis-like gut troubles to the extreme. I had to cut vegs, fruit, and most wheat out completely. Am slowly adding back in. Not diagnosed yet. I do best with red meat when gut sick—iron correlation? Possibly. First time my creats been below 1.0 and GFR above 55 in years! 50 years old. Very poor health due to complications from steroids.Cook in iron skillets? No. What’s the significance of doing so? Hmm. Iron is now every other day I can’t recall exactly but its the mg recommended for iron deficiency anemia. Gonna take a while to build it back up in my bones… Thanks for all your help :-)

Bond-007 profile image
Bond-007 in reply to CatOnACloud

Iron skillets add iron to food. Those diets i mentioned are whole food plant based. But you say you had to stop veggies & fruit. The animal based food has heme iron which is more easily absorbed than non-heme found in vegetables. That’s why you had high Hg at about 15 before. But Greger, Eselstyne, & Cambell argue the animal foods are not good in general. Apparently you do better off veggies & fruits. This leads me to ask, how is your lipid profile/ cholesterol, LDLs, HDLs, & triglycerides? I bet it is high on that animal based diet. So far things could be worse with just one kidney, but you are holding up -gfr & creatinine ok. You must be doing something right! Gfr>60. Is it the animal based diet? Do you see a correlation between eating animal based food, fish, poultry & meat with reduced fruits & vegetables & improved kidney function???

CatOnACloud profile image
CatOnACloud in reply to Bond-007

Hi. I take a med to lower triglycerides, cholesterol isn’t ‘too’ high, and I use avocados and olive oil for good fats. Unfortunately, I have cushings from the steroids, one of the few endocrine issues that cause you to be fat. Add to that some gross malpractice and negligence beginning about 28 years ago, steroids have ruined my hips, spine, etc. I did well diet wise before my gut went beyond wonky, now the foods good for it are not good for such a fat person. Working on that but in ‘remission’ now so testing unlikely to show (up to $3,000 for it has kept me from it). Diabetes from the steroids has worsened but I am on high insulin. Diet can keep my heart from being enlarged and full of disease, but it won’t reverse the weight without exercise. I’ve got no intact ACL or meniscus in my knee now, and both hips need replacing, none of which any doctor will help with surgically because of my weight. Sometimes the damage is just too great to reverse, although Cushings is most often recoverable. My congenital and acquired medicine sensitivities / allergies / and circumstances mean I’m sol, but I try to help others from the medical mistakes of my youth… not my fault, no, but ultimately my responsibility and due diligence (and the internet!) would have been greatly appreciated, ya know? I wouldn’t advocate for one diet over another. I believe we are all different, and I’ve seen much evidence that you’ve got to find what works most for yourself. I appreciate a balance most of all—no drastic changes. Vegs and fruits and animal protein for me as tolerated, and trying to get back to the wider selection of both is my current goal. Damn gut! Here’s an example: I am allergic to a common ingredient in plastics. So lifelong dental issues. If I had a hip replacement, it is unclear if all the material could be kept out of it…so not just the weight, lots of lovely little things. But I have my wits and my cats, and often that’s enough :-)

Skeptix profile image
Skeptix

Albutrix, the keto acid analogue

Microtrix, the companion multi-vit to compensate for the vegan diet

Going to have to get a B12 shot as I'm sliding down after 6 or so months on this very low protein plant diet

Had tried the grape seed extract it's powder form and messy and nasty tasting so will check out a pill form if poss.

Funnily, I've overlooked magnesium and haven't any blood results which incorporate magnesium so will get levels checked next time

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

There is 380 mg of Magnesium in a full days supply of Albutrix.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

I was taking magnesium as a supplement for years and just had it tested this year and it was WAY too high. So, I am off it now. I think it is messing with my ability to sleep without it though.

nellie237 profile image
nellie237 in reply to Skeptix

"Funnily, I've overlooked magnesium",

I expect that you've overlooked it because Magnesium supplementation is contra-indicated if you have a serious kidney problem, and even though we are all likely deficient (because farming methods stripped the soil) your medical team have avoided this can of worms. I think the issue with supplementation has got something to do with 'build-up'.

The standard Serum Magnesium test is known as not being a good indicator of magnesium levels. Apparently you need something called Red Cell Magnesium, which I believe is widely available.

CatOnACloud profile image
CatOnACloud in reply to nellie237

I stopped taking mag citrate cause of my gut issues. I find any amount makes me sick. So still low in mag, but not terribly so. I’ll look up red cell thx

Marvin8 profile image
Marvin8

Vitamin D3 - 2000IU/dayB12 -1000mcg/day

CoQ10 -100mg/day to counteract my low dose statin

The article seems to point in a good direction for Resveratrol, but so much depends on dosage. The study indicated that low dosage was ineffective but that higher doses were. But TOO much seems to heighten the risk for accelerated fibrosis. According to the studies, and granted that most of them are animal studies, my upper limit would be around 1500mg per day, so the 450-500mg range would appear to be safe for test purposes. I'm certainly tempted to try, but I want to read more. THANKS for the link!

RoxanneKidney profile image
RoxanneKidney

youtube.com/watch?v=HjJA_mg...

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to RoxanneKidney

Thanks Roxanne, this is why I am so confused. There is so much contradicting information out there on resveratrol.

RoxanneKidney profile image
RoxanneKidney in reply to Bassetmommer

Dr. Popper can quote research for everything she has an opinion on. Which is why I like her so much.

userotc profile image
userotc

My mum (CKD 3) takes the following (key reasons shown below):

Cordyceps - to try to reduce her accelerating proteinuria

Vitamin D - to maintain her ~120nmol/l serum level for virus etc protection

Vit K2 - as a cofactor for vit D

Magnesium - as a cofactor for vit D

Various menopause-related supplements eg Don Quai, red clover

Happy to share the rationale and/or dosages for each and looking forward to your summary!.

DEZIN profile image
DEZIN

I am now taking Nepho-bite. It is a multi vitamin for renal patients prescribed by my kidney doctor.

novemberlady1 profile image
novemberlady1

I TAKE ZINC AND SUB LINGUAL B 12, 50000 UNITS OF D FOR MY REGRESSIVE OSTEOARTHRITIS AND MY IMMUNE SYSTEM WITH MY HYDROXYCHLOROQUIN FOR THE ARTHRITIS

oceansplash profile image
oceansplash in reply to novemberlady1

Careful about zinc. It can deplete sulfur and also build up. Low dose only and I wouldn't take it regularly. I read Dr. Mercola.

PecanSandie profile image
PecanSandie

I used to take Centrum Silver Women 50+ but stopped because my bloodwork is pretty good when it comes to vitamins (and I didn't want to put undue stress on kidneys by taking a pill that has minerals that maybe couldn't be processed properly).

My primary doctor wants me to take 600 mg of Calcium a day (and get the other 600 mg through food). I have not been able to start doing this because I can't seem to find plain Calcium without added D3! I can't take extra D3 because I am taking Calcitriol (for hyperparathyroidism) which is a replacement for D3. If I take D3 in a pill apparently it skews the D3 blood test.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to PecanSandie

It is such a tight rope we have to walk.

novemberlady1 profile image
novemberlady1

WHEN MY DR STARTED ME ON THE D I WAS AT 17 AND NOW IN THE 30'S. I HAD NO IDEA I WAS THAT LOW BUT I AM IN MY HOUSE MOST OF THE TIME NOW . I HAD NO IDEA HOW IMPORTANT VIT D IS .

Bassetmommer profile image
BassetmommerNKF Ambassador

Good advice for people with CKD to test for Vit D often because it can become toxic if you are not careful.

PecanSandie profile image
PecanSandie

The Calcitriol IS Vitamin D. According to my blood test, I am not deficient in Vitamin D. I am walking a fine line here, or as Bassettmommer puts it, wearing a tight robe. 😀

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to PecanSandie

hahaha I meant tight rope...... need more coffee this morning.

PecanSandie profile image
PecanSandie

lol. I misread it - I thought it said WEARing a tight robe! I really liked the metaphor "tight robe". I thought it was a British idiom....lol. And it's quite descriptive!

WinJ3 profile image
WinJ3

Saw Palmetto, Prescription vitamin D, Biotin, Kirkland Triple Action Joint Health all works. I don't know if others work or not.

jodaer profile image
jodaer

I expect most, if not all, of you know this but in case some doesn't I want to warn you about supplementing Vit D. It you get too much it can kill you. I had a friend who almost died from it. So please be careful. It can be toxic

Kam73 profile image
Kam73

I don’t take any OTC supplements without checking with my pharmacist. Any OTC supplements can interact with prescribed medications. If my Vit D is low then I will take what is recommended for me.

RhenDutchess123 profile image
RhenDutchess123

Does anyone have opinions on. Pro-Biotics ?.....I have been reading alot of positive things about its effect on kidney disease on DiVitas Web Site

RoxanneKidney profile image
RoxanneKidney in reply to RhenDutchess123

The probiotics and the fiber supplements are the only ones that I believe in.

RhenDutchess123 profile image
RhenDutchess123 in reply to RoxanneKidney

I found an Oral Pro- biotic that I take...It melts on your tongue before I go to sleep and it cleans the bad bacteria off my your teeth while I sleep...love them

RoxanneKidney profile image
RoxanneKidney in reply to RhenDutchess123

what is it called

RhenDutchess123 profile image
RhenDutchess123 in reply to RoxanneKidney

ProBioralPlus...as kidney disease progresses...the bacteria from uremia settles on our teeth, causing cavities and gum disease....

And bad breath...this is formulated to attack that bacteria.....there is another one called Renadryl that "eats" bad bacteria in the gut and colon

Grateful2021 profile image
Grateful2021 in reply to RhenDutchess123

My dental hygienist has me brushing my gums with hydrogen peroxide and a soft toothbrush inside and outside, upper and lower. Absolutely no bleeding, tartar or plaque on my last checkup. It’s inexpensive too.

RhenDutchess123 profile image
RhenDutchess123 in reply to Grateful2021

Hydrogen Peroxide? To what strength do you delute it ?

Grateful2021 profile image
Grateful2021 in reply to RhenDutchess123

I just wet my soft toothbrush and pour a little 3%USP hydrogen peroxide on my brush and brush my gums. My hygienist showed me how.

PecanSandie profile image
PecanSandie in reply to RhenDutchess123

I have been taking Align (probiotic) for many years. I started taking it when I felt I was having gut issues (IBD) and it helped so I just keep taking it.

RhenDutchess123 profile image
RhenDutchess123 in reply to PecanSandie

Interesting...and is your Nephologist in agreement ?

PecanSandie profile image
PecanSandie in reply to RhenDutchess123

He's has never voiced any objection to it. I give him a list of my medications every time I go for a visit. The only conflict is calcium - he says I don't need it, but Primary Care doc says I do!

Michael__S profile image
Michael__S in reply to RhenDutchess123

Personally I had more success with pre-biotics (from food) than probiotics. The latter works but I've only seen some limited benefits after a bad bout of diarrheas but it can also be found in foods. Kefir and kombucha works just as well for me and good probiotics are expensive. Both kefir and kombucha can be made inexpensively at home.

RhenDutchess123 profile image
RhenDutchess123 in reply to Michael__S

That sounds interesting...do you have a recepi, I am not familiar with it

Michael__S profile image
Michael__S in reply to RhenDutchess123

Which one? :-)

jodaer profile image
jodaer

In order for pro-biotics to work for a person they need to be tested to ascertain which ones they need. It's not a one size fits all thing.

RhenDutchess123 profile image
RhenDutchess123 in reply to jodaer

Yes....it is important to get the right ones....ProBioral Plus for the mouth...Renadyl for the gut and colon

HSV21 profile image
HSV21

Hi all, my doctors have me on 500 mg of B-12 with a separate Folate supplement. I was very cautious to take it though because a doctor 10 years ago put me on a high dose B complex vitamin that at the time was being pushed to doctors for neuropathy pain. She took me off my statins too. Sorry, I cannot remember the name of the product. However, when I finally went to a nerve specialist, he tested me for B toxicity and sure enough I was at the highest toxic level. He said don't even take a daily vitamin. It took 4 months to get the B levels out of my system. My current doctors said this level will not hurt me so I agreed to take the B-12. But I only take what the doctor asks me to , not anything else from my dietician, or from what I read. And I make sure to have B-12 checked with every lab.

HisLittleOne profile image
HisLittleOne

I take vitamin D 5000 IU daily

Renadyl probiotics for kidneys

ProRenal multivitamin for kidneys

Grape seed extract

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to HisLittleOne

HI HisLittleOne,Can you tell me why you take Grape Seed Extract?

HisLittleOne profile image
HisLittleOne in reply to Bassetmommer

pubmed.ncbi.nlm.nih.gov/278...

healthline.com/nutrition/gr...

spandidos-publications.com/...

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to HisLittleOne

Thank for providing that. I have been on GSE now for five months. Just wondering why you were taking it.

HisLittleOne profile image
HisLittleOne in reply to Bassetmommer

Yes, as you can see there are many benefits to taking it. And I particularly use it for the kidney and blood pressure benefits. It definitely helps!

Michael__S profile image
Michael__S

I stopped taking many supplements after I got diagnosed and funny enough most of them were most effective when supplemented with real fresh food or it was a dud.

I still take vitamin D, cal-mag (Calcium citrate/magnesium) 300/150mg as needed, omega-3 (liquid) and every now and then vitamin e.

My best advice is that if you can get it from real food then go for it. I don't use it a lot but perhaps I should revisit Turmeric. In a capsule form it upset my stomach but fresh is a no issue. I have a cheap poly-propylene cutting board dedicated to this and fresh beets (I don't eat as much because of oxalate). I had some success with garlic and ginger as well.

CatOnACloud profile image
CatOnACloud

Some still can’t absorb VitD. Was 13-16 for over 10 years, all supplements did not work one iota. Now take 50,000IUs, 2X week just to get it up to 35-45. Pretty sure it’s kidney, but also long term corticosteroids.

whats profile image
whats

I'm thinking of taking a CBD supplement, 33 mg, mostly as a different kind of anti-inflammatory for lupus and for sleep. I took reservatrol in the past, but its one of the many supplements that I couldn't perceive any effect from, including labs. CBD would probably be the same. Its just so tempting for me to believe that a pill will zing my troubles away. This except for the dr. prescribed supplements, D3, K2, Calcium. Also self-prescribed magnesium to prevent restless leg syndrome. Also Albutrix, which keeps the protein up in my labs.

myla88 profile image
myla88

supplementbee is a great website for Supplement. i have a question. can i Use supplement for weight loss?

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to myla88

There are so many that say they do.... be careful, many scream snake oil. And with CKD, there is so much that can affect it. Best weight loss will and always will be less food, more movement...... and that sucks. I know. I am truly struggling to lose weight to get cleared for a transplant. If you have diabetes, there are some new drugs out there for diabetes that also help with weight loss that are also good for CKD and heart issues. Talk to you doctor as the weight is also not good for CKD. Such a vicious circle.

Dina0210 profile image
Dina0210

Do you think we Can we take 3,000iu daily? I am deficient in vit d

Dina0210 profile image
Dina0210

So 3,000iu is okay to take daily? 1 capsule is a 1,000iu . How dow is it taken? 3X/ day or 3 cap once a day? Thanks

Dina0210 profile image
Dina0210

What isPAD? Is it similar to Peripheral Neuropathy?what is the name of that supplement that contains B4 + B3, B6 and B12?what pharmacy carries them?

Dina0210 profile image
Dina0210

Thanks. Will do

Dina0210 profile image
Dina0210

I think PAD affects the arteries and peripheral neuropathy affects the nervous system. I just wonder if they have the same symptoms…

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