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Author Topic: The Statin gun to the head  (Read 29860 times)
Deanne
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« Reply #50 on: July 26, 2016, 07:37:14 AM »

I'm in the USA and my neph has me on red rice yeast instead of a statin. I get it in the supplements aisle in my grocery store. I'm post-transplant and that might make a difference as to what my neph would prescribe. I think I've been on it for about 6 months and my cholesterol numbers are great.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Athena
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« Reply #51 on: July 27, 2016, 07:20:08 AM »

I'm in the USA and my neph has me on red rice yeast instead of a statin. I get it in the supplements aisle in my grocery store. I'm post-transplant and that might make a difference as to what my neph would prescribe. I think I've been on it for about 6 months and my cholesterol numbers are great.

I was told that red rice yeast extract is banned by the FDA in the US.
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Deanne
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« Reply #52 on: July 27, 2016, 07:59:26 AM »

Only some forms are banned:



https://nccih.nih.gov/health/redyeastrice:

◾The U.S. Food and Drug Administration (FDA) has determined that red yeast rice products that contain more than trace amounts of monacolin K are unapproved new drugs and cannot be sold legally as dietary supplements


I sure wouldn't buy one of these products that was manufactured in China, and you should have your liver function checked regularly, but that would be the same as with a statin.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
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Athena
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« Reply #53 on: July 27, 2016, 08:44:06 AM »

Thanks very much for that article. I flatly refuse to consume anything that is manufactured in China. The raw herbs that I do use have the in-built protection of boiling them, which always destroys impurities.

I take it your RRY extract is manufactured in the US by a reputable company? Perhaps it might also be sold in Australia. Are you able to give me the manufacturer's details so I can find out?
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Simon Dog
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« Reply #54 on: July 27, 2016, 12:00:14 PM »

I sure wouldn't buy one of these products that was manufactured in China, and you should have your liver function checked regularly, but that would be the same as with a statin.
An even more radical approach would to be enlist the aid of an MD in your lipid management  ::)
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kickingandscreaming
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« Reply #55 on: July 27, 2016, 12:06:31 PM »

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An even more radical approach would to be enlist the aid of an MD in your lipid management  ::)

It IS her MD who has the statin gun to her head.  MDs are NOT all knowing.  I grew up with a father and a brother who were very well-respected MDs  (and even my mother was an MD wannabe) so I know how smug and pig headed doctors can be.  Western medicine has become so compartmentalized that the right hand doesn't know what the left hand is doing.  And a recent study show that something as simple as Big Pharma buying doctors a pizza for lunch is enough to influence their prescribing habits.
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Deanne
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« Reply #56 on: July 27, 2016, 12:43:15 PM »

I sure wouldn't buy one of these products that was manufactured in China, and you should have your liver function checked regularly, but that would be the same as with a statin.
An even more radical approach would to be enlist the aid of an MD in your lipid management  ::)

If I'm the radical one, then I'm not so radical. It was my neph who told me to take Red Yeast Rice. If it's for Athena, then I hope she's radical in that way too (talks to her doctor about it).
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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« Reply #57 on: July 28, 2016, 02:41:01 AM »

I would be careful with supplements in general, but especially with kidney issues. Depending on how they metabolize, they could also do damage to your kidney. There are a lot of wonderful "natural" methods, but the "natural" label doesn't mean that it's not gonna mess with your system.

Whatever avenue you go down, I'd work with your MD, or get a second opinion from one with some knowledge about what you're wanting to do.
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Athena
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« Reply #58 on: July 28, 2016, 07:22:45 AM »


[/quote]
An even more radical approach would to be enlist the aid of an MD in your lipid management  ::)
[/quote]

Simon, you have missed the posts in this thread where I specifically wrote that it is my current Nephrologist as well as 2 other MD physicians this year who have issued the warning to me about needing to take statins. My naturopath is not the one driving this new panic about my cholesterol levels, but I am asking him whether there is a non-drug safe alternative I could try. And he has come up with the rhubarb root as a kidney-safe possibility. It's easy to just pop another pill in response to yet another health complaint but I would greatly prefer to find a non-drug safe alternative that will not overload my poor liver and kidneys more than what they already are.

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Athena
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« Reply #59 on: July 28, 2016, 07:50:33 AM »

I would be careful with supplements in general, but especially with kidney issues. Depending on how they metabolize, they could also do damage to your kidney. There are a lot of wonderful "natural" methods, but the "natural" label doesn't mean that it's not gonna mess with your system.

Whatever avenue you go down, I'd work with your MD, or get a second opinion from one with some knowledge about what you're wanting to do.

That is a golden holy mantra in any kidney community and it is very sound rational advice that I follow to a tee. I have stopped all supplements and sexy food fads that I was very open to in the distant past.

But the fact is, some herbal medicine can still be good for chronic disease sufferers like us. I do think nephrologists like to throw a general blanket ban to all herbs because they do not understand it, do not study it nor want to understand how it may work (this is a fact). I do support this blanket ban in the name of safety because it is so easy for any patient to get fooled into thinking something may be safe and basically there is an over-supply of charlatans in the natural supplement industry.

BUT, where a reputable, certified, ethical and knowledgeable natural health practitioner is found, then I think it becomes a bit of a safer gamble to take. It would be irrational to ignore the potential of herbal medicine in this instance.
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Athena
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« Reply #60 on: July 28, 2016, 08:09:03 AM »

Quote
An even more radical approach would to be enlist the aid of an MD in your lipid management  ::)

It IS her MD who has the statin gun to her head.  MDs are NOT all knowing.  I grew up with a father and a brother who were very well-respected MDs  (and even my mother was an MD wannabe) so I know how smug and pig headed doctors can be.  Western medicine has become so compartmentalized that the right hand doesn't know what the left hand is doing.  And a recent study show that something as simple as Big Pharma buying doctors a pizza for lunch is enough to influence their prescribing habits.

K&S, you cannot imagine how meaningful and profound your statement is to me personally. After everything that I have experienced over the last 5 years, one thing that I know with utmost certainty is that in the face of so much knowledge, power and prestige that doctors have - they barely know enough! It's a most disturbing kind of awareness sometimes, particularly when one is caught in a medical crisis. I am glad that I always seek second and even, third opinions. I have learned so much from speaking to so many different renal specialists. One of them was very honest with me that it can be very confusing to manage renal failure.

When I started out in this whole messy business, I will never forget speaking to a renal nurse over the phone, seeking advice about what to do. She expressed extreme reservations about nephrologists and basically told me to watch my back! I was stunned.
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« Reply #61 on: July 30, 2016, 12:09:45 AM »

I'm reading a book right now about nurition by looking at the chemistry behind it (An Apple A Day by Joe Schwartz, PhD) and he has a section in there about Grapefruit juice . A big reason why they don't recommend drinking it with meds is because it can also cause your blood pressure to drop.

But, drinking it has also been shown to help lower LDL cholesterol.

Idk if that would help you out here - I suppose it would depend on your other medications - but worth looking in to.
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Athena
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« Reply #62 on: July 30, 2016, 06:47:35 AM »

I'm reading a book right now about nurition by looking at the chemistry behind it (An Apple A Day by Joe Schwartz, PhD) and he has a section in there about Grapefruit juice . A big reason why they don't recommend drinking it with meds is because it can also cause your blood pressure to drop.

But, drinking it has also been shown to help lower LDL cholesterol.

Idk if that would help you out here - I suppose it would depend on your other medications - but worth looking in to.

Fabkiwi, that sounds interesting. If a glass of grapefruit juice could just make this problem go away - I would be drinking it. But my naturopath and others have warned me to NOT take grapefruit juice because it interacts with meds quite substantially. The same thing applies with St John's Wort as well.

Thanks for the suggestion anyway.
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kickingandscreaming
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« Reply #63 on: July 30, 2016, 08:06:15 AM »

Grapefruit is a notorious interferer with many drugs.  Too bad, I really this fruit.

Quote
Grapefruit juice decreases the activity of the cytochrome P450 3A4 (CYP3A4) enzymes that are responsible for breaking down many drugs and toxins. Grapefruit contains compounds known as furanocoumarins that block the CYP3A4 enzymes. When grapefruit juice is consumed, the enzyme’s ability to break down the drug for elimination is decreased. Blood levels of the drug may rise, resulting in the risk for new or worsened side effects.
https://www.drugs.com/article/grapefruit-drug-interactions.html

This effect, it seems to me, would be even worse for kidney types as we already can't eliminate drugs and toxins the way normal folks do.  And the effect lasts a full 24 hours, so it is difficult to thread the needle to avoid interference.

You can check whether a given drug is affected here: https://www.drugs.com/drug_interactions.html
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Athena
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« Reply #64 on: August 06, 2016, 06:30:54 AM »

Well I've got my rhubarb root and am officially starting it today (as something that will be boiled and drank as a tea). My naturopath believes he's given me a low dose but has said that if diarrhoea should develop then I should stop taking it.

I sure hope it all pans out okay.

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kickingandscreaming
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« Reply #65 on: August 06, 2016, 06:45:29 AM »

I hope it works for you.
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Athena
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« Reply #66 on: August 06, 2016, 07:24:48 AM »

I hope it works for you.

Thanks KS. To be quite honest, I don't think it will really do anything. But I will just get through the next few days testing its safety (ie whether I will get any weird feelings or sensations). How we feel really tells us a lot sometimes. As in any clinical trial.

I've also got the new alpha-blocker drug that we're playing around with. My Neph has been on the phone with me testing different dosages to nail the right one to manage my BP.

I sure am glad that I'm not playing around with both a new BP med and a statin right now. One new BP med and a herb is a far more reassuring combination for me.

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Athena
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« Reply #67 on: September 18, 2016, 07:22:33 AM »

Coenzyme Q10 anyone? I have found several links that seem to suggest that it can help reduce BP and high cholesterol to some minor degree. It appears to be safe and well tolerated generally. Anybody taking this or have any thoughts on this supplement for kidney disease patients?

http://umm.edu/health/medical/altmed/supplement/coenzyme-q10
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« Reply #68 on: September 18, 2016, 09:31:53 AM »

We will all be very interested in hearing how you get on.  Please do keep us informed!
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« Reply #69 on: September 18, 2016, 09:57:28 AM »

Quote
Coenzyme Q10 anyone?

I doubt that you will SEE much benefit to your cholesterol and BP from CoQ10.  But that doesn't mean it isn't having an impact.  It works on the cellular level.  If you're using CoQ10, spring for the "reduced" version of it call Ubiquinol which is much more bioavailable.  200mg/day of CoQ10 are recommended for just about everything including kidney disease.

But as I mentioned upthread, this supplement is most important to compensate for the depletion from statins of your body's CoQ10 reserves and this is what can cause the muscle issues and rhabdomyolesis.
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Charlie B53
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« Reply #70 on: September 18, 2016, 07:14:52 PM »


I did quit taking the atorvastatin almost 3 weeks ago and I have noticed a serious difference already.  Far less of the muscle ache and pains I have been plagued with.  I am still very tired all the time, but no where near as miserable as I was.

This is the second statin that I have quit, both made me absolutely lousy.   There has to be a better way.
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Athena
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« Reply #71 on: September 19, 2016, 07:04:30 AM »


I did quit taking the atorvastatin almost 3 weeks ago and I have noticed a serious difference already.  Far less of the muscle ache and pains I have been plagued with.  I am still very tired all the time, but no where near as miserable as I was.

This is the second statin that I have quit, both made me absolutely lousy.   There has to be a better way.

Charlie, this is what I have heard from too many other people both in real life and in online patient support groups! I agree, there surely must be a better way.

I want to reduce my cholesterol levels but I believe the 'cure' (statins) is worse than the disease (elevated cholesterol) in terms of potential side effects that is largely unforeseeable.

What I am now wondering is this. Although there is undeniably a higher risk of CVD from elevated LDL cholesterol - what is the statistical probability of this? Is it a 100% certainty or 75% chance or much less than that? In other words - what is the chance that someone may never have a heart attack or stroke even if their LDL remains higher than normal? I think this is a perfectly valid question to ask any doctor and I don't think this question is ever really asked in this way.



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Charlie B53
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« Reply #72 on: September 19, 2016, 01:18:40 PM »


What makes me crazy is how even being very careful to avoid the 'Bad" foods, cholesterol can still run very high.  The liver makes much of it.   If our liver is making it then how can it be so 'bad'?

There is an awful lot that I do not understand.   I just try to eat a lot more responsibly and call it good enough.
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Charlie B53
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« Reply #73 on: September 19, 2016, 01:25:01 PM »


Googled red rice yeast and see it is yet available from a number of places on-line.

Read the write up at WebMD and see most forms contain a natural form of lovastatin.  Parma owning that statin are suing in attempt to ban sales of the yeast as a product infringement.

The article specifically warns of the possible dangers from statins for some people.  (Like me).

http://www.webmd.com/cholesterol-management/red-yeast-rice

I think I'll pass on this supplement.
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Athena
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« Reply #74 on: September 20, 2016, 08:04:26 AM »

Charlie, WebMD is a site that is no longer credible for me as they peddle whatever Big Pharma pays it to peddle.

Look for scientific studies, clinical trials or any serious investigation into the subject by independent medical-scientific experts.

Whatever happens, I would not dismiss your experience with stopping statins for one moment. Keep that firmly in your mind - it's like conducting your own clinical trial on yourself!

It is a confusing topic because obviously for some reason, our livers are producing too much cholesterol compared to the rest of the population (which determines lab reference ranges). I'm just trying to understand the actual real risk of this whole thing. It's like pulling teeth trying to get clear quantified statistical probabilities. I bet someone in the insurance industry might know!?
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