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Genetically high cholesterol level; can't tolerate statins; what now?

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Posted 5/20/2005 8:14 PM (GMT 0)
Hi all! I am hoping that some of you might be able to help me with a suggestion or two. I don't have CAD yet, though no tests have been performed. I am trying to prevent it from occuring but face a challenge. I have had high cholesterol levels for over 20 yrs. I am now 55. I also have Crohn's Disease. The only time my total cholesterol was near normal was during the midst of a Crohn's flare where I had daily, multiple diarrhea episodes. It's likely I was not absorbing any nutrients at the time. Since that last flare, I have lost 40 pounds, and my total cholesterol has gone from 211 to 301 all the while on a low fat, low cholesterol diet. Last lipid levels, total cholesterol 281; HDL 85; LDL 152.

During the time my cholesterol went from 211 to 301, I was taking 10 mg of Zetia daily. I had been on that medication for 3 years. Previously, I have taken EVERY statin that has come on the market. All of them give me severe muscle aches and leg edema. The last one, Crestor, was the worse. My PCP is frustrated and so am I. Currently, I am taking one 10 mg Lipitor twice a week. At the end of one month, retest the lipid levels and see if this is helping at all. The day after I take the Lipitor, my legs swell considerably.

I cannot take Questran or other such products due them interfering with a medication I take for Crohn's related problems. Anyone got any suggestions? Thank you....Ides

Posted 5/21/2005 3:02 AM (GMT 0)
Hi Ides and Welcome to the Cardiac Forum!! yeah

You pose a tough,but great question!~I'm no expert on Crohn's disease, so please bear with me and help educate me along the way.

With all the medication reactions, have you tried strictly using olive oil?, in place of all oils?  Fresh garlic in everything instead of the powder?  Now, I don't know how much some of this might affect the Crohn's, so forgive me.  Can you eat any whole grain foods?  Or is that too much? 

What about a timed released Niacin?

These are just a few suggestions off the top of my head, perhaps some others will join in and give us some more ideas?!  And Please, you jump in here, along the way, and let us know if what I've already mentioned is tolerable for you?

Big hugs, Teri tongue

Posted 5/21/2005 5:05 AM (GMT 0)
Hi Teri,
Thanks for the response. Years before it was widely publicized, I switched to exclusive use of olive oil. Recently, I have added plant sterols to my diet via a teaspoon on a piece of toast. My husband's cultural uses a lot of garlic and ginger in recipes. For a family of four, we go through 3-4 entire heads of garlic a week. [Yes, sometimes we reek!] I eat whole grains when my gut is good which is most of the time lately. Recently I did a four day survey recording the amount and content of everything I ate.

My average intake per day:
Total fat = 30.4 gm
Sat fat = 7 gm
Cholesterol = 76mg
Fiber = 19 gm

I know I could improve on the fiber but it is so hard with the Crohn's. Many types of fiber cause me to have diarrhea. Given that I have been been following this type of diet for the last 10 yrs, I am frustrated. I know I could cut the fat even more but frankly gave up with the more severe restrictions since it seemed to make little difference. I have not eaten anything fried or any fast food in years. My doctor says that my liver produces excessive xholesterol and at this point he isn't sure if it makes any difference what I eat. I have thought about throwing caution to the wind and going for the grease just kidding!

Thanks for the suggestions. Ides
Posted 5/21/2005 6:05 AM (GMT 0)

hi ides,

i also wonder, with teri, if you could take some SR (slow release) niacin?  if you work your way up on it and use SR that can help with the dreaded flushing.  to me, the flushing is worth it knowing the help it's giving me, as i can't take statins either.  the flushing only lasts 20-30 minutes.  there is also a niacin product called Enduracin that is very helpful with the flushing.  that should help a great deal with your cholesterol and LDL counts.

the other thing you mentioned is being on a low-fat, low-cholesterol diet.  lots of research is showing that low-fat is not necessarily always a good thing - but what i mean by that is that you have to choose your fats carefully.  it's been shown that certain oils, such as olive but more particularly canola may help lower cholesterol.  ditto on foods such as some nuts, particularly almonds and walnuts.  you don't want to overload on them, they are still high fat, but they are high in MONO fat, which is shown to help lower cholesterol (vs SAT fat which is a big no-no for us).  look for mono fat items to include in your diet on occasion, like avacados, salmon, almonds, etc.  like teri said, though, i'm not familiar with crohn's restrictions.  i have terrible GERD, and have a hard time eating at all at the moment. 

hope this helps.

libby

Posted 5/21/2005 5:23 PM (GMT 0)

I agre with teri and Libby and  my husbands friend in calif has had 2 heat attacks and a quad by pass and his doctor told him low fat low cholesterol but hwe got into a medical study with some medical group or pharmacy grouip I cannot remmebr but as soon as he  added back some sat fats he got off one diuretic had his BP medicne cut in half and no more  Cholesterol lowering medicine. My best luck to yualso with Chrons  a frind had it and she really had to watch her diet and stress too.

Terri, Liby I am on 10 milligrams of lipitor too and sometimes I get muscle aches I donot know wehter it is from tread mill or over doing some days but maily at night no swelling though just like I ran a rce butu do treadmill 2ce a day for 15 min except for Sat and Sunday I do once a day for 15 mon on sat and not at all on Sunday.

Heidi

Posted 5/21/2005 6:14 PM (GMT 0)
Hi Ides!  tongue

I hope you got a few new ideas here?  As I was rereading your post, I was thinking of what my Dr.'s told me years ago...I have an inherited bad cholesterol that would be there no matter what I ate.  However, I can tell you (sounding like an ad, but it is true!) that for 7 years I've followed a fairly strict diet (not every day, cuz it's fun cheating sometimes! tongue ).  I've been on Zocor that long as well, and in recent tests on my carotid arteries and my right coronary arteries that my plaque levels have decreased by 20%!!  To me this is soooo important-as I've already had one carotid endarectomy and one triple bypass, along with heart failure.  I don't want anymore!

 

It sounds like your diet is great!!  Do you drink a lot of water, too?  That's another thing that is great for flushing liver and kidneys and aiding them run smoothly.

 

I wish you the best of luck-take care!!  Hugs, Teri tongue

Posted 5/21/2005 6:15 PM (GMT 0)

hi heidi and ides,

you ought to tell your doc about the leg probs.  i had the same thing on the vytorin (statin) and my legs were so ache-y and tremble-y.  it felt awful.  got off the statins and got onto niacin and feel much better.  again, the niacin flush is a pain, but worth it, to me - it's always short term.  for some peope though i know the flushing can be unmanageable.  you also have to be sure to have liver functions checked regularly.  how are you tolerating the lipitor if you've not been able to tolerate the other statins?  any different symptoms?

ides, just to sorta sum up that last "diatribe" about low-fat...what heidi said seems to be right:  a diet that is LOW fat may actually cause you to not lower cholesterol at all.  you're right to watch the cholesterol in foods, but keep an eye on mono vs. sat fats.  try to get some monos back in your diet.  i think that, with some niacin, would be worth a shot - but i'm not the doc, ask him first!

libby

Posted 5/21/2005 6:59 PM (GMT 0)
I just started a new topic re the side effects of statins...Teri :)
Posted 3/12/2011 3:36 PM (GMT 0)
Hello,
I also don't know what to be done in such condition but I want to know more about it if you have any information on it pls share it .It will be helpful to us .


_____________
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Post Edited (lancy) : 3/31/2011 3:37:32 AM (GMT-6)

Posted 3/14/2011 10:57 PM (GMT 0)
I have familial high cholesterol and don't tolerate statins either. I have gotten my cholesterol under control through understanding how itworks.

First, cholesterol in your blood is made by the liver from carbohydrates. Eating a little fat is necessary, and also helps you feel fuller sooner, which helps with weight control. I cut out bread and cut my cholesterol a bunch just from that. I never have eaten fat, but that didn't help at all!

Second, I read an article about patients who don't tolerate often being able to tolerate at least 1 pill a week. I tried that out and it worked for me. (Sorry, I don't have the citation.) I am now able to tolerate 3 a week of the lowest dose (5 mg) of Crestor.

Third, niacin is supposed to be used along with a cholystiramine (bile acid sequestrant). These little granules can be mixed with juice. I was on Colestid, now generic, but no niacin, for a couple of years, and it worked well. I was able to stop using it after getting cholesterol under control with 1 and 2.
Posted 3/16/2011 5:06 PM (GMT 0)
Hi Ides, I could not tolerate any statins until I began to take coenzyme Q10 . It's amazing that because of that I now can take Zocor 40.
Also one quarter teas. of cinnamon and 6 raw almonds per day does lower cholesterol.

scriptures
Posted 3/16/2011 6:10 PM (GMT 0)
I am not usually on this forum, but the subject caught my eye. I just returned from a visit to my GP, who told me he is now taking cinnamon for cholesterol as well. He's seen the results in various patients (he's not been prescribing this) and has been convinced of it's positive benefit. My triglycerides dropped 400 pts after 2 months of use. HDL improved and LDL also. When I was dx'd w/ Celiac Disease, Cinnamon was one of the supplements I was put on after going Gluten Free. I take a 1000 mg capsule of Cinnamon (cinnamomum cassia) about 4x a day and try to hit before meals/carbs. I also have genetic/familial high cholesteral but was unable to tolerate any of the statins my GP tried. I don't know why this isn't being shouted from the rooftops, but I imagine it has something to do with it being OTC and cheap, which keeps the drug companies from profiting. Good luck.
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