Familial Hypercholesteremia

A message board to discuss personal experiences of Crestor and its side effects.

Familial Hypercholesteremia

Postby Brigand » Mon Jul 24, 2006 10:07 am

I have been on Crestor and other statins for a long time now and, although thay have lowered my cholesterol dramatically, I feel the side effects of fatigue, weakness, muscle pains, leg pains etc are getting too much. My problem is that my high cholesterol levels were caused by familial hypercholesteremia and I am concerned that it might not be enough to manage it by Q10, vitamins C & E, niacin, fish oils etc that other people are talking about.
Has anybody else faced this particular problem? And if so what has been the outcome? Can anybody suggest the best alternative regime for my particular circumstances?
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Familial high cholesterol

Postby Ray Holder » Mon Jul 24, 2006 3:41 pm

I would be wary about dropping all your statin, as your problem is that your body cannot totally dispose of LDL cholesterol and it can accumulate in various spots if not kept at a low level.

I think you should take some Q10 to counteract the deficit being made by the statin, you will probably need more than you would if you were able to stop the statin, and you will have to increase your dose until you get some relief.

Some carnitine will most probably be needed as well if the Q10 alone is not sufficient to give relief for the muscle problems.

Best of luck
Ray Holder
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Familial hypercholesterolemia

Postby Brigand » Mon Jul 24, 2006 3:59 pm

Thank you Ray

I think probably the best thing is to change from rosuvastatin to either atorvastatin or simvastatin because I believe the side effects are probably lesser, but so are the results. I have been taking 120mg of Q10 daily for a few weeks, but I understand that the full effect of taking them will not be felt for at least 8 weeks. I will do some research on carnitine, which I have never heard of until looking at the postings here.
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Postby cls » Wed Apr 25, 2007 4:16 pm

Hello, I am a 52 y o female, taking 10 mg zocor for about 6 years. My experience is in the statin heading under "myositis a side effect of zocor."

Today I saw my gp for a diabetic checkup. In Dec 06, my total cholesterol was 167. After a round of pt for neck pain, lifting 1 lb. weights caused biceps soreness that lasted 4 months. In March, my gp said to stop the 10 mg of zocor after I asked if that could be why I could not recover from the weight-lifting. My lab work from last week showed that my total went up to 232. Now my gp wants me to start crestor. I am afraid I will have the same problems as before which are detailed in the previously mentioned post.

I have started taking a Super B complex, and ester c 1000 mg, co Q-10 100 mg. I have stated to eat more nuts, more dark green veggies, raw carrots, and have always eaten whole grain breads and crackers as a part of my diabetic diet. I do eat a variety of fruits and do not eat much dairy, if I do it is low or fat free. I only eat about 3 real eggs a week, usually eat egg beaters.

What exactly is Familial hyerclolesterolemia? My gp lists this as one of the diagnosis on my lab request form.

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Postby cjbrooksjc » Wed Apr 25, 2007 4:32 pm

Connie:Take a look at the following url. It may be more than you wanted to know, but it's one view. Remove the * before you copy and paste this into your browser.



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My experiences...

Postby aussie_mike » Wed Oct 10, 2007 7:51 am

Hi Brigand,

Like you I have FH. I am a 52 year old guy in Sydney Australia. Untreated my total cholesterol is 510 or 13.2. Currently my total cholesterol is 97 or 3.8 and I am fit and healthy.

And yes I take the maximum dose of Crestor - 40mg...

I have taken one statin or another for over 10 years now and can identify with the experiences that I read on these boards. I have had most of those side effects including muscle and joint pain and effects upon memory and cognition.

However I have slowly developed a lifestyle that counters these side effects. This lifestyle includes resistance training, cardiovascular training, diet and supplements.

So if you can't live without Statins, I am here to tell you that it does take discipline but it can be done. If you are interested to know more, let me know.

Kind regards

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Postby Brian C. » Wed Oct 10, 2007 9:42 am

I am 63 and was diagnosed as having FH 21 years ago. For 17 of those years I was taking a statin (Zocor 40mg then Lipitor 80mg). I have been off the Lipitor for 6 months now and still have "the usual problems".

I have told my GP and endocrinologist I will be quite happy to have a "high normal" level, i.e sufficiently lowered to keep the tissue accumulation (xanthoma) at bay. The only prescription I have now is for Niaspan, the slow-release niacin from Merck. I am experimenting with taking berberine hydrochloride along with alfalfa and artichoke extract plus the usual combination of supplements that are regularly recommended here.

When I next visit my endocrinologist I will request blood testing to see how I am fareing.

As one ages a high cholesterol level is much to be preferred to a low one for reason of both longevity and mental health. There is an increasing number of studies demonstrating this, some of which are summarised on - and linked from - fellow forum member xrn's website at talkingstatins dot com. This excellent site is undergoing extensive work in progress and is not yet in final form.

There is, of course, substantial information on spacedoc's site.

Brian C.
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F.H. and its problems

Postby Liz » Wed Nov 21, 2007 10:57 am

Hi all, I too have FH and have been on statins for 17 years along with a low fat diet, I have had all the usual statins and now on Rosuvastatin 20mgs and Ezetrol 10mgs as just over 5 weeks agoI had a heart attack (M I ) I was very fortunate to have got to hospital quickly where I was given a clot busting drug, I then had a cardiac arrest but was given cpr and 2 shocks to get me going again, after a few days I was give an Angiagram and Angiplasty to fit a stent to a blocked artery I was so grateful as other members of my family where not so fortunate.I am a young 56 and hope to continue to look after myself, the condition FH is a real problem and needs support from other sufferers to understand its problems and how to deal with it, so all you other people out there you are not alone and sites like this can help us to do the best we can to lead a good healthy life. Take care all Liz. ( UK ) :D :) :lol:
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Postby Brian C. » Wed Nov 21, 2007 11:11 am

Basically, those of us with true FH (i.e. figure above 3 standard deviations from the mean, above 300 from an early age) need to take special care of our arteries.

Unfortunately only one, to my knowledge, study over several generations of a family carrying the defective gene has been published. It was in the Netherlands and 40% of those affected lived a normal lifespan without any cardiac problems.

I am sure control of inflammation is the important factor and that is the one that I address with diet, lifestyle and supplementation.

Problems didn't affect me until we had children and abnormally (we have never found any other family with the same experience) prolonged sleep-deprivation (over the first two years of each of our 3 children), the first child being born with liver disease. Stress, prolonged intense stress, culminating in angina at the age of 42.

Brian C.
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