I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on July 09, 2016, 07:52:19 AM
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Hi folks, I am being pressured to start a statin right away after having high LDL cholesterol levels for a few years now. My HDL is very good and provided my labs are drawn when I am fasting, my triglycerides are within normal range as well. There seems to be a huge amount of controversy over statins and conflicting advice about them. I was told that a heart attack and stroke is imminent with my long-term diabetes and now advancing CKD. I'd love to just pop another pill in order to feel safe however I have been burnt in the past with other drugs which I was told were 'safe' but which lead to severe side effects and worsening kidney function.
Can anyone provide any advice based on their own experience or knowledge about statins?
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You don't state what kind of testing you had. If it was "just the usual" lipid panel, you should consider a more advanced test such as the one described here--https://labtestsonline.org/understanding/analytes/lipoprotein-subfractions/tab/test/-- that tests for LDL particle size, e.g. VAP test. That information is much more revealing than the generic test.
Here's a description "in English." http://www.drsinatra.com/why-your-cholesterol-test-can-lie/
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Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?
I saw a leading Neph recently & he was the one who urged me to get on a statin.
I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.
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In 2008 I had a heart attack, had 6 stents placed and was put on Lipitor. Within a week I felt like I had been beat with a ugly stick. I was taken off Lipitor and placed on a older drug called pravastatin. No problems on that drug and my colesterol levels have been ok. Mohave been taking it for 7 years now without a problem.
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Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?
I saw a leading Neph recently & he was the one who urged me to get on a statin.
I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.
One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study. He tells me there are at least 17 different kind of lipids, but he can get a good idea of the profile from the simple fasting lipid test. I know Fresenius does a fastind limid test (total, HDL, LDL and Triglicerides) on patients once a year. He's a big believer in statins, and generally spends at least 30 minutes at each appointment lecturing me about the numbers from various studies.
He also uses different guidelines than the "recommendations", and wants his patients to keep Triglicerides under 100.
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In 2008 I had a heart attack, had 6 stents placed and was put on Lipitor. Within a week I felt like I had been beat with a ugly stick. I was taken off Lipitor and placed on a older drug called pravastatin. No problems on that drug and my colesterol levels have been ok. Mohave been taking it for 7 years now without a problem.
Thanks Michael for that feedback. It's interesting how there can be such a wide range of individual reactions to similar cholesterol drugs. It's scary.
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One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.
Sometimes, the fact that a doc is well known in the business means that he/she is more entrenched in a conventional point of view. Like the hammer that sees everything as a nail.
Personally, I thing cholesterol is a big bogeyman that makes a lot of $$$$ for Big Pharma. Statins do lower cholesterol, but there is very little evidence that it furthers health or curtails mortality. It is probably only called for in individuals with extremely high "familial" high cholesterol. Being an essential ingredient in many essential bodily processes, I think it unwise to try to lower it unless it's extreme. The big issue is how the body oxidizes it and inflammation. The body produces and sends cholesterol to the arteries to quell the inflammation.
I would check out Artichoke Leaf Extract before I ever tried a statin. http://www.ncbi.nlm.nih.gov/pubmed/19777605
A prospective study investigating 143 patients with total cholesterol greater than 280 mg/dL reported that patients given 1800 mg dry extract/day vs placebo over a 6-week period experienced statistically significant changes in total and LDL cholesterol. Total cholesterol was decreased 18.5% vs 8.6% and LDL cholesterol was reduced 22.9% vs 6.3% in patients using the dry artichoke extract vs placebo, respectively. Thus, dry artichoke extract was recommended to treat hyperlipoproteinemia, preventing atherosclerosis and coronary heart disease.
https://www.drugs.com/npp/artichoke.html#ref61 quoting from Englisch W, et al. Efficacy of artichoke dry extract in patients with hyperlipoproteinemia [German]. Arzneimittelforschung . 2000;50:260-265.
Artichoke leaf extract at 1.5 g/day was found to lower serum cholesterol and triglycerides in a postmarketing survey study. 67. Kraft K. Artichoke leaf extract—Recent findings reflecting effects on lipid metabolism, liver and gastrointestinal tracts. Phytomed . 1997;4:369-378.
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Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?
I saw a leading Neph recently & he was the one who urged me to get on a statin.
I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.
One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study. He tells me there are at least 17 different kind of lipids, but he can get a good idea of the profile from the simple fasting lipid test. I know Fresenius does a fastind limid test (total, HDL, LDL and Triglicerides) on patients once a year. He's a big believer in statins, and generally spends at least 30 minutes at each appointment lecturing me about the numbers from various studies.
He also uses different guidelines than the "recommendations", and wants his patients to keep Triglicerides under 100.
Wow, 17 different kinds of lipids? That is fascinating. Sounds like I'd have to go see a cardiologist to find out more.
From what I gather, just as many people with normal levels of cholesterol have heart attacks/strokes as what those who have elevated cholesterol. There are many paths up that mountain it seems & a statin is just not going to prevent all of these attacks.
What bothers me most of all is that there seems to be little consideration of what it may mean for someone with CKD to start taking a drug like a statin. There is a some added risk of kidney failure if there are any serious side effects like muscle damage (rhabdomyolysis).
Simon, how long have you been taking a statin now yourself? I take it you started before your reached dialysis stage? It sounds like your experience has been a positive one where statins is concerned.
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My cholesterol is high and contributed to causing my triple by-pass in 08. Since then two of the three have totally clogged up. Fortunately it happened slow enough my body had grown colateral arteries around both blockages.
I had started taking Crestor IIRC, one of the strongest statins. Unfortunately it caused severe muscle weakness and aches so my Dr switched me to a much 'lighter' statin. After years on that one Dr switched me to a mid-strength statin. I currently take atorvastatin nightly. So far so good. The most important thing is diet. Skip some of the fats and include more vegetables.
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My LDL level started to elevate when I turned 39. I was started on a low level of atorvastatin, mostly because of family history and the fact that due to my high level of HDL, my total cholesterol was over the desired limit. At that time, I knew I had IgA nepropathy but I wasn't on dialysis yet. I've never had any side effects that I could attribute to the statin.
I did have a minor heart attack when I was 42, after I was on dialysis for about 18 months. One angioplasty, no stents as the vessel was so small that a stent wouldn't have fit. At that point, I was put on Plavix for six months. I had to go inactive on the transplant list while I was on Plavix.
I've had my transplant now for three years and have lost 20 lbs of the 50 I put on after transplant (thanks Prednisone!). My total cholesterol is now officially too low as of this last transplant checkup. My atorvastatin has been cut in half. I think the weight loss helped a little (even though I now weigh the same as I did pre-transplant). What I think helped the most is that we now eat much less animal protein. My husband had gastric bypass in 2014 and he can no longer tolerate red meat or pork. We eat a little bit of chicken, turkey and fish but mostly it's fruit, veggies, some grains and dairy. We do drink low-fat milk but we eat more full-fat cheese than is probably good for us.
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My LDL level started to elevate when I turned 39. I was started on a low level of atorvastatin, mostly because of family history and the fact that due to my high level of HDL, my total cholesterol was over the desired limit. At that time, I knew I had IgA nepropathy but I wasn't on dialysis yet. I've never had any side effects that I could attribute to the statin.
If anyone has high HDL (but within normal range), that is healthy and is a factor that protects you against heart disease. HDL is the "good cholesterol". Some believe that having a good ratio of HDL and Trigs is what is more important than just looking at the LDL in isolation.
I don't really know, this is just what I've read.
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One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.
Sometimes, the fact that a doc is well known in the business means that he/she is more entrenched in a conventional point of view. Like the hammer that sees everything as a nail.
Personally, I thing cholesterol is a big bogeyman that makes a lot of $$$$ for Big Pharma. Statins do lower cholesterol, but there is very little evidence that it furthers health or curtails mortality. It is probably only called for in individuals with extremely high "familial" high cholesterol. Being an essential ingredient in many essential bodily processes, I think it unwise to try to lower it unless it's extreme. The big issue is how the body oxidizes it and inflammation. The body produces and sends cholesterol to the arteries to quell the inflammation.
I would check out Artichoke Leaf Extract before I ever tried a statin. http://www.ncbi.nlm.nih.gov/pubmed/19777605
A prospective study investigating 143 patients with total cholesterol greater than 280 mg/dL reported that patients given 1800 mg dry extract/day vs placebo over a 6-week period experienced statistically significant changes in total and LDL cholesterol. Total cholesterol was decreased 18.5% vs 8.6% and LDL cholesterol was reduced 22.9% vs 6.3% in patients using the dry artichoke extract vs placebo, respectively. Thus, dry artichoke extract was recommended to treat hyperlipoproteinemia, preventing atherosclerosis and coronary heart disease.
https://www.drugs.com/npp/artichoke.html#ref61 quoting from Englisch W, et al. Efficacy of artichoke dry extract in patients with hyperlipoproteinemia [German]. Arzneimittelforschung . 2000;50:260-265.
Artichoke leaf extract at 1.5 g/day was found to lower serum cholesterol and triglycerides in a postmarketing survey study. 67. Kraft K. Artichoke leaf extract—Recent findings reflecting effects on lipid metabolism, liver and gastrointestinal tracts. Phytomed . 1997;4:369-378.
Many thanks again K&S. Yes, that is the million dollar question - whether lowering LDL through a drug will do anything to promote health or prevent heart disease. I am looking into any CKD-safe non-drug alternative to lowering cholesterol. I have my naturopath looking into it. There are other things like red rice yeast extract (?) that can lower cholesterol which comes from traditional chinese medicine. There is also non-flush niacin as well.
The other thing that's a bit suspect to me is that they want patients to have extremely low LDL cholesterol, much lower than what normal healthy people may have their cholesterol levels at. That always alarms me even further. If I can just get my LDL to be in the upper normal healthy limit or just slightly above normal through non-drug means, i'd be more than happy!
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Simon, how long have you been taking a statin now yourself? I take it you started before your reached dialysis stage? It sounds like your experience has been a positive one where statins is concerned.
I've been on statins for over 20 years, and just celebrated by 4th D anniversary. One of my issues is low HDL which responded only to Niacin (which caused some other issues so I had to discontinue it), so the approach has been to drive down total cholesterol and triglicerides. I have also become a pesco pollo vegetarian at the same time I started on a statin.
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
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Hmmm....well, all I can add is details of my own personal experience. Take it or leave it!
When I was first diagnosed with FSGS back in 1992, all I was told was that I'd probably end up needing treatment for hypertension, when, eventually, I did. No one ever told me about any link between CKD and cardiovascular disease or high blood lipids.
FF to 2004. I had moved back to the US and went for a routine physical for insurance purposes. My cholesterol was 550 and my triglycerides were 2100. Yes, you read that right. My doc said he had never seen numbers so high in someone who was not diabetic.
I was immediately referred to the neph who put me on Crestor and Tricor. The Crestor caused me to break out into a skin rash, but boy, did it bring down my cholesterol! So, I was switched to pravastatin (which someone else mentioned in this thread), and that has done the trick for me all of these years. I still take Tricor (well, I take the generic, fenofibrate), and that has worked very well for me, too.
I've always eaten healthily and enjoyed exercise, so those initial high numbers had us all shocked!
Bottom line is that for me with my history of severe kidney disease, those drugs worked and, in my humble opinion, were necessary...FOR ME. My numbers are still great, and I have not had any side effects. I am grateful for these medications.
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
Which medical board certifications does your husband have?
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But there is a correlation between high lipids and heart attacks.
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Prevastatin is the low strength statin they had me one after I reacted badly to the Crestor, the high strength statin. I don't remember it's generic statin name.
Currently one the mid-strength one atorvastatin. I don't pay enough attention to my numbers. Dr's are paid to do that.
Realilstically, I am Blessed to have lives this long. I never expected to live past 30. I had the attitude of many Vets. Live fast, die young, leave a good looking corpse. Surprisingly, I ain't so fast no more, aging and all that physical abuse of this body has taken quite a toll on the joints and muscles. Many have been broken, torn, scarred, and are near constant reminders that I am NOT Immortal after all.
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I am really intrigued about the Tricor. After my heart attack in 2012, the cardiologist who saw me in the hospital (I never had a cardiologist before that) wanted me to go on Tricor. I checked with my nephrologist, who about dropped the phone and said there was no way he would allow me to take Tricor. I am wondering if it is because of my particular kidney disease (IgA nepropathy) or that my trygliceride levels weren't really sky high.
I was immediately referred to the neph who put me on Crestor and Tricor. The Crestor caused me to break out into a skin rash, but boy, did it bring down my cholesterol! So, I was switched to pravastatin (which someone else mentioned in this thread), and that has done the trick for me all of these years. I still take Tricor (well, I take the generic, fenofibrate), and that has worked very well for me, too.
I've always eaten healthily and enjoyed exercise, so those initial high numbers had us all shocked!
Bottom line is that for me with my history of severe kidney disease, those drugs worked and, in my humble opinion, were necessary...FOR ME. My numbers are still great, and I have not had any side effects. I am grateful for these medications.
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Oh, that's interesting, cattlekid, because I've just looked up Tricor, and it DOES say that you shouldn't take it if you have severe kidney disease. Hmmm.... And it was my neph who prescribed it! AND my tx neph knows I still take it and have taken it for over a decade. No one has said anything about it. But then again, my triglycerides WERE sky high. Makes me wonder. Well, so be it.
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Oh, that's interesting, cattlekid, because I've just looked up Tricor, and it DOES say that you shouldn't take it if you have severe kidney disease. Hmmm.... And it was my neph who prescribed it! AND my tx neph knows I still take it and have taken it for over a decade. No one has said anything about it. But then again, my triglycerides WERE sky high. Makes me wonder. Well, so be it.
Moosemum, you can't undo the past and you did the very best you could at the time with all the information and advice you were given. You are a pro-active model kidney patient as far as I'm concerned.
I am however a novice to statins and am just doing the prudent thing for myself which is thoroughly investigating this drug. There are alarm bells ringing for both taking them AND not taking them, in truth. I think I will lose in both situations, the question is which one will have less net loss. I've never been someone who's been attracted to gambling but being a medical patient is essentially about taking a gamble on what the doctors tell us is safe and good for us will be exactly that.
For example, I have only witnessed an accelerated loss of kidney function since I've started on an ACE inhibitor a few years ago. I am starting to think that maybe my dosage needs to be reduced. From what I gather once someone is severe enough, ACE & ARBs are contraindicated?
I have also had major illness and an AKI from taking a nasty hormone drug (progesterone) almost 2 years ago. This has left me very mistrustful of pharmaceutical drugs in general.
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Athena, I understand your dilemma and wish I could tell you what the right choice for you would be. You are absolutely correct in having serious doubts about any new medication your docs are suggesting you take, and you are indeed very wise to find every bit of information you can get so that you can make an informed choice. It doesn't sound like you have to make an immediate decision, so it is good that you are taking the time to find out as much as possible.
When is your next appointment? Can you discuss your concerns with your cardiologist? It is amazing how ignorant a specialist can be about matters outside his/her specialty. Could your cardiologist speak directly with your neph? It is very disconcerting that one doc says you need statins while another doc says, "No way!". And the patient is caught in the middle. I don't envy you.
I remember your experience with AKI induced by hormone treatment, so no wonder you are mistrustful!
CKD brings all sorts of related maladies to the table, including hypertension and high lipid levels that simply cannot be treated solely by "lifestyle changes". Sometimes we really do need these drugs. But that doesn't mean they are ideal in all ways. We really are stuck between a rock and a hard place.
Please do let us know what you and your neph/cardiologist finally decide to do. I'm rooting for you!
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
Which medical board certifications does your husband have?
He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
Which medical board certifications does your husband have?
He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.
Interesting. I had a long talk with the MD who ran the Framingham Heart Study for many years and he claims to have data that supports the correlation between statin lowered cholesterol and heart attack rate. So, I guess the experts just can't agree.
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Athena, I understand your dilemma and wish I could tell you what the right choice for you would be. You are absolutely correct in having serious doubts about any new medication your docs are suggesting you take, and you are indeed very wise to find every bit of information you can get so that you can make an informed choice. It doesn't sound like you have to make an immediate decision, so it is good that you are taking the time to find out as much as possible.
When is your next appointment? Can you discuss your concerns with your cardiologist? It is amazing how ignorant a specialist can be about matters outside his/her specialty. Could your cardiologist speak directly with your neph? It is very disconcerting that one doc says you need statins while another doc says, "No way!". And the patient is caught in the middle. I don't envy you.
I remember your experience with AKI induced by hormone treatment, so no wonder you are mistrustful!
CKD brings all sorts of related maladies to the table, including hypertension and high lipid levels that simply cannot be treated solely by "lifestyle changes". Sometimes we really do need these drugs. But that doesn't mean they are ideal in all ways. We really are stuck between a rock and a hard place.
Please do let us know what you and your neph/cardiologist finally decide to do. I'm rooting for you!
Saw my Neph today and he has given me 3 months to find a way to lower my cholesterol. If it is not lowered, then I need to go on a statin quicksmart! He even raised his voice and told me off for putting it off. He told me that I will either lose my legs or have a heart attack or stroke in the near future. So, I've had another gun raised to my head today! (Does anyone know why I could possibly lose my legs due to high cholesterol? I've never head of such a thing before).
So I really feel pressured and on a tight deadline after today.
I have my Chinese herbal naturopath now investigating what may be kidney-safe cholesterol lowering herbs for me. I have to admit though, it feels like it's going to be a losing battle. I really need to know now whether there is any non-drug alternative now as a matter of urgency.
I'm tired.
I don't have a cardiologist and no one has ever suggested I see one.
I also received a lecture today about the perils of calcium as well and what it may be doing inside my body without showing up in abnormal serum calcium levels. I was told to not take any calcium supplementation whatsoever, which I don't of course. I don't know why I was warned about calcium today. I asked him about the whole approaching menopause deal and how that might pose as another threat to my renal health. He replied that it's another threat altogether but I should be focused on the renal threat concerning calcium.
I am so tired.
If anyone can offer me any advice at all, I'd be very grateful.
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
Which medical board certifications does your husband have?
He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.
Your husband sounds like he knows what he's looking for. Is there any particular reason why he's researched statins? If you could post any authoritative studies that show that statins are not useful, that would be very useful.
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Not knowing about your health conditions--as your doctor presumably does--I can't suggest any specifics. But I would say that your doctor needs to go back for a psychology tune-up. He sounds excessively catastrophic in his presentation. He may be seeing something that red flags for urgency (I don't know that) but if so, should be able to tell you what that is.
When I started down the road to kidney failure, my first nephrologist was an Iranian male. I don't know if his culture influenced his style, but he was so catastrophic in how he presented material to me that I always felt like I was one foot from the grave (at 1.6 creatinine at the time). Whenever I left his office, I felt as if I should immediately book a cemetery plot and that my remaining days numbered in days not years. It took a full 7 yrs to get to where I am now.
If I were you I would start by getting a second opinion and perhaps a new doctor. Some doctors are just not well-aligned to your personal style of receiving and processing information.
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Athena, thanks for letting us know what your neph has told you.
I am unsure as to what exactly unsettles you about statins. I am unaware of "controversy" other than the apparent frequency with which docs prescribe this class of medication. I can certainly understand why anyone would be wary of taking a new drug; that wariness can be a good thing. But one thing to keep in mind when doing research about any drug is that most of the research seems to be geared to people who do not necessarily have severe CKD. We are a breed apart!
I've never understood why/how severe renal insufficiency leads to hyperlipidemia. I don't understand that link, but it certainly seems to exist!
Apologies for the reference to a cardiologist. I had cattlekid's post in my head as I was typing a response to you, I suspect! ::)
Would you consider trying an old school statin like pravastatin and see how you get on?
I wonder why your neph started banging on about calcium? That's rather odd. I've never heard of menopause being a contributing factor in a further decline of renal function.
Anyway, I am sorry you feel pressured into doing something you don't want to do. I hope you find an answer that works for you. :cuddle;
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If I were to go the statin route, I would start with red rice yeast. It is still a statin, although a naturally occurring form of it. I would also be sure to take coenzyme Q10 along with it since statins deplete the body's stores of CoQ10 and C0Q10 is a necessary element for heart health. So taking statins alone to protect your heart's health is kind of an oxymoron.
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If I were to go the statin route, I would start with red rice yeast. It is still a statin, although a naturally occurring form of it. I would also be sure to take coenzyme Q10 along with it since statins deplete the body's stores of CoQ10 and C0Q10 is a necessary element for heart health. So taking statins alone to protect your heart's health is kind of an oxymoron.
I know nothing about red rice yeast, but since you've mentioned it, I assume it is safe for kidney patients. Do you think it would bring down Athena's cholesterol level to acceptable levels within the three month time limit her neph has given her?
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I just read that the FDA warned for using red yeast rice extract in 2007. It could cause kidney damage. Active ingredient in red yeast rice extract is LOVASTATIN. Which is a statin called .Mevacor.
HTTP://nccih.nih.gov/health/redyeastrice
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I just read that the FDA warned for using red yeast rice extract in 2007. It could cause kidney damage. Active ingredient in red yeast rice extract is LOVASTATIN. Which is a statin called .Mevacor.
HTTP://nccih.nih.gov/health/redyeastrice
Thank you Cassandra for your post. I've looked it up and it's very interesting! Red rice yeast extract is a herbal remedy used traditionally for thousands of years in China but which has statin-like properties. It is not however a modern pharmaceutical statin at all (in it's traditional herbal format, that is). So this is essentially a non-drug natural remedy that may indeed lower cholesterol. it's the drug you have when you're not having a drug, in a way!
http://umm.edu/health/medical/altmed/supplement/red-yeast-rice
It poses the same risks apparently that pharmaceutical statins pose such a kidney and liver damage, muscle damage, etc. I will try to find out more about this soon.
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I suppose, in a sense, that it is moot to think about using red yeast rice as it is unavailable in the US. Of course, it may be available in the UK and in other countries (whose FDA isn't quite as in the pocket of Big Pharma). It seems to be reflexive to cast shade on non-Pharma versions of Big Pharma drugs. So they are often cast in doubt and suspicion. If "supplements" are obtained from trusted and well-reputed sources they can be as safe as useful as any market drug. They can also cause similar side effects to the drugs they replace. Statins have been shown to promote diabetes and yet they are reflexively prescribed to pre-diabetics and diabetics. They can destroy muscle tissue and yet they are prescribed to protect that major muscle, the heart. They are given out like breath mints. What's wrong with this picture?
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My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.
Which medical board certifications does your husband have?
He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.
Interesting. I had a long talk with the MD who ran the Framingham Heart Study for many years and he claims to have data that supports the correlation between statin lowered cholesterol and heart attack rate. So, I guess the experts just can't agree.
They took a serious second look at that data in particular, among other things. I'm just parroting what he says, which is that the effect only applies to people having had a heart attack previously, and the effect is not a large one. That is the state of the evidence. Maybe statins help people that have not had heart attacks. But in his opinion, this has not been satisfactorily demonstrated. Maybe it does, maybe it does not. We don't know.
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Your husband sounds like he knows what he's looking for. Is there any particular reason why he's researched statins? If you could post any authoritative studies that show that statins are not useful, that would be very useful.
No particular reason - he is contacted by clinicians that want data analyzed or are planning clinical trials.
You cannot show that anything is not useful... let's just say it's more a lack of evidence, and only for people not having had heart attacks. "Lack of evidence" is not the same as "not useful."
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If I were to go the statin route, I would start with red rice yeast. It is still a statin, although a naturally occurring form of it. I would also be sure to take coenzyme Q10 along with it since statins deplete the body's stores of CoQ10 and C0Q10 is a necessary element for heart health. So taking statins alone to protect your heart's health is kind of an oxymoron.
Thanks so much for this K&S, I've just re-read this earlier post after the subject in this thread has turned to red rice yeast extract! It is a naturally occurring statin, and therefore likely to be 'gentler' than the pharmaceutical version. It would have other properties as well that may or may not be of concern.
My naturopath has already mentioned this traditional remedy about 2 visits ago and told me he will research whether it may be safe for me from the renal point of view. I hope to find out soon about this!
I have also found this interesting article on RRY that is a lot more sobering. It does warn about potential kidney toxin contaminants.
https://sciencebasedpharmacy.wordpress.com/2009/08/06/red-yeast-rice/
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Your husband sounds like he knows what he's looking for. Is there any particular reason why he's researched statins? If you could post any authoritative studies that show that statins are not useful, that would be very useful.
No particular reason - he is contacted by clinicians that want data analyzed or are planning clinical trials.
You cannot show that anything is not useful... let's just say it's more a lack of evidence, and only for people not having had heart attacks. "Lack of evidence" is not the same as "not useful."
Thank you for that. What is confusing for me is the very clear and rather brutal message from my docs that if I don't start taking a statin, I will soon implode by having a heart attack or stroke. I've had 3 specialists issue this warning over the last 3 months.
I have not had any cardio event and feel generally healthy. But I am a long-term diabetic with CKD and have had elevated LDL cholesterol readings over the last few years. I am also going through menopause. There are risk factors galore! But I am unsure of whether a statin will actually benefit my health or not.
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I've been taking Zocor (simvastatin) for about 4 years now. My cholesterol was high originally. It brought my cholesterol into normal range in three months and has kept it there consistently. I have had NO side effects, and certainly no muscle weakness (I've been exercising twice a day for the last six months to lose weight). Any medication, including over the counter meds, will have side effects in a small percentage of the population especially when they are commonly prescribed. With the higher risk of cardiac problems that comes with CKD, it was well worth the risk to me to at least try the statins. I'm glad I did because they have worked very well for me.
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I just celebrated my 4 year D anniversary.
I have been taking statins for 25+ years now, under the direction of two different MDs. The current one is the former director of the Framingham Heart Study. I was motivated to take an aggressive approach since my father had a major MI at age 52 w/95% left main occlusion (I'm 58 now).
I just had an echo and nuclear stress test, and got great results - 60-65% EF; no sign of LVF (thank you NxStage); and no signs of ischemia on the scan.
Despite the scare stories, I'll stay on my current path.
I have not had any cardio event and feel generally healthy. But I am a long-term diabetic with CKD and have had elevated LDL cholesterol readings over the last few years. I am also going through menopause. There are risk factors galore! But I am unsure of whether a statin will actually benefit my health or not.
Consider asking your MD if a nuclear stress test would be advisable. It's just like the standard treadmill test, but you are injected with a radioactive tracer and given a non-invasive scan before and after the gerbilling.
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It is a naturally occurring statin, and therefore likely to be 'gentler' than the pharmaceutical version.
Or it could be rougher than the pharmaceutical version. And what constitutes an effective dose? Once a month? Included in three meals a day?
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It is a naturally occurring statin, and therefore likely to be 'gentler' than the pharmaceutical version.
Or it could be rougher than the pharmaceutical version. And what constitutes an effective dose? Once a month? Included in three meals a day?
And what about the fasting lipid test as well as liver enzyme monitoring?
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It is a naturally occurring statin, and therefore likely to be 'gentler' than the pharmaceutical version.
Or it could be rougher than the pharmaceutical version. And what constitutes an effective dose? Once a month? Included in three meals a day?
And what about the fasting lipid test as well as liver enzyme monitoring?
Simon, I have regular lipid testing every 3 months, along with my other tests for kidney, liver enzymes, full blood count, PTH, iron, etc, etc. So whatever impact any supplement or new med may have, will soon be seen in my regular lab results that is conducted through my Neph or primary physician. In that regard, I do have some sense of safety and reassurance.
I now recall that in the past, with a previous naturopath, I was put on some cholesterol lowering herbs that did work. I had only marginally elevated cholesterol levels that were pretty close to normal in my blood tests for a brief time. I see my existing naturopath tomorrow, where hopefully he can give me some verdict on this whole question. It doesn't mean I will go with any supplement he may recommend though - I am just keen to receive advice at this stage.
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Just an interesting update. Saw my naturopath today and discovered that Red Yeast Rice extract is banned here in Australia as well! So there goes that option.
He has instead suggested RHUBARB ROOT as a raw herb that can be boiled as tea (the root, not the leaf parts). This herb has been used for a long time in Chinese medicine and is commonly prescribed. I've done a bit of a search on this and have generally found that there does seem to be some evidence of this herbs having some positive effect on cholesterol levels.
https://www.drugs.com/npp/rhubarb.html
My naturopath is only concerned that I may have potentially some digestive complaints like diarrhea but this will be closely monitored. We're in research mode right now. If he and I decide to proceed, I could start this in 2 weeks time.
Opinions are eagerly wanted.
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Attached is an article on alternative therapies for cholesterol, etc. from Medscape (need to register to read it there).
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Thanks so much KS for that article! Well, rhubarb is on the list of potentially useful herbal remedies for cholesterol.
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I am on Lipitor now, and so far I haven't had any side effects. It's still too soon to see if it's doing anything with my numbers.
I think, as with most medicine, it's not a one size fits all pill. Our bodies are so complex, what works for me isn't going to work for the next person.
That being said, I totally believe that you can control a lot of what happens by controlling what you eat. I love butter in everything, but I know that if I put that extra smear on my toast it'll be an issue in the long run. I've switched to using a lot more olive oil and eating more avocados (shhh... don't tell my renal dietician). Also, been making a bigger effort to exercise more. I know we're all sick of hearing it, but those are the easiest things to do to take care of a lot of issues.
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That being said, I totally believe that you can control a lot of what happens by controlling what you eat. I love butter in everything, but I know that if I put that extra smear on my toast it'll be an issue in the long run. I've switched to using a lot more olive oil and eating more avocados (shhh... don't tell my renal dietician). Also, been making a bigger effort to exercise more. I know we're all sick of hearing it, but those are the easiest things to do to take care of a lot of issues.
This is true for most people, but we with advanced renal disease are not "most people".
The first time I met with my PCP after reviewing my surprisingly catastrophic lab results, he told me that I "could eat cardboard" for the rest of my life and still have high blood lipids because of my crappy renal function.
All we can do is the best we can, like eating well and exercising (which I've done my whole life), accept it when our best may not be enough, and then do what we need to do and be grateful that we have options.
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Moosemum, I've been pondering on this for a little while and though I can't be sure what may apply to everyone with CKD, it would seem that not every one's lipids & trigs seem to go terribly pear-shaped, like what yours did.
I can't be sure of this of course. But not all long-time kidney patients seem to complain of extremely high cholesterol or triglycerides levels. My elevated LDL was apparent even before CKD reared its ugly head and it was explained as 'genetic'.
Perhaps some types of KD, like FSGS, seems to be more prone to lipid abnormalities than others?
I don't read much about there being a strong link between CKD and high cholesterol levels in general. There are warnings about CKD causing CVD, but it doesn't seem to be through the traditional high cholesterol route, more to do with things associated with electrolyte imbalances that flows on from kidney dysfunction, if I'm not mistaken.
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I'm on PD and have been dx'd with CKD since 2009 (and undoubtedly had it earlier), I'm also Type 2 Diabetic (although my Endo no longer wants to call me that as my A1c is in normal range for a woman of my age-74). Although I was vegetarian for many, many years (and during that time ran a total Cholesterol of 200 +/-) some years ago I started eating low carb to manage my diabetes. At the time I also started eating meat and other animal foods (and did not in any way restrict my intake of fats, saturated and otherwise). My last total cholesterol reading (December) was 188. If cholesterol issues are part and parcel of CKD, then it somehow got it's wires crossed. Clearly, there is such a thing as familial hyperlipidemia, but I'm not sure it has much to do with the kidneys. Liver, perhaps, but not kidneys. Frankly, I think the typical diet that most renal patients are on is an invitation to all kinds of issues.
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Moosemum, I've been pondering on this for a little while and though I can't be sure what may apply to everyone with CKD, it would seem that not every one's lipids & trigs seem to go terribly pear-shaped, like what yours did.
I can't be sure of this of course. But not all long-time kidney patients seem to complain of extremely high cholesterol or triglycerides levels. My elevated LDL was apparent even before CKD reared its ugly head and it was explained as 'genetic'.
Perhaps some types of KD, like FSGS, seems to be more prone to lipid abnormalities than others?
I don't read much about there being a strong link between CKD and high cholesterol levels in general. There are warnings about CKD causing CVD, but it doesn't seem to be through the traditional high cholesterol route, more to do with things associated with electrolyte imbalances that flows on from kidney dysfunction, if I'm not mistaken.
You are no doubt right on all accounts. It is entirely possible that some types of CKD have a much more profound effect on lipid levels, and I don't know why mine in particular were so high. That is why I've tried to make it very clear that my experience is only that...MY experience. But I wanted to respond to your question merely to reassure you that not everyone has terrible side effects to statins and that we all have to weight the pros with the cons. But you already know that!
Anyway, I am very eager to know what you decide to do in the end and how well your choice of medication, whether it be a natural alternative or a statin, works for you. I will continue reading this thread with great interest. Thank you for starting this discussion!
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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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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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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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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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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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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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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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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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[/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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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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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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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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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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Grapefruit is a notorious interferer with many drugs. Too bad, I really this fruit.
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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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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I hope it works for you.
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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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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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We will all be very interested in hearing how you get on. Please do keep us informed!
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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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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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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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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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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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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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Just an interesting update on this! My latest lab results have just come through & my total cholesterol has reduced. It was in the 7 range (in the unit of measurement we have it here in Australia), even reaching 8.1 a few months ago. Now it has reduced to the mid-6s. Because this was a fasting test, my trigs are perfectly normal. My LDL is still above normal & my HDL is the higher-normal range. But the surprising thing is that my Neph are not urging me now to start a statin. I'll keep up with my new herb & see what my next results will be like. Seems to be promising.
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Very promising indeed.
Keep up the herb
;D
Love, Cas
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Long ago when I first started one of the statins I got so achy and sore, I complained to my Dr and she dropped that one and started me on prevastatin. OK, years on that I'm always achy, then Heart Dr Lady changed me to atorvastatin. She didn't like my labs I guess. I've been so sore weak and achy I finally gave in and quit taking it. One of them noticed my bad labs last week and have started the prevastatin again. All my Dialysis labs are , it is only my cholesterol that is out of wack. I still think I am pretty fortunate.