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High Cholesterol


helen.t
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Hi Folks,

I've not posted in a while due to bad health and computer problems. I am struggling to tolerate the drug Simvastatin since I've been put on it as my cholesterol is quite high. I have Pots and coeliac disease as well as other problems and my body doesn't cope with any change well. I am hoping that someone might have some information as to why I'm feeling so bad on this drug and any advice on how I might help minimise the side effects which are; numbness, tingling, pain and weakness in legs; general weakness and exhaustion; nausea and fluctuating heart rate, missing beats; more dizziness. I also take midodrine. Any information or advice will be gratefully received.

Take care you guys. Helen

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Hi,

I am a 50 year old female and was prescribed Lipitor a couple of months ago for high cholesterol. I read about it and there is no evidence that lowering cholesterol in women who don't have heart disease has any positive effects. In fact, in one study, the women on Lipitor had 10% more heart attacks than the control group. There are numerous law suits against the company for promoting it for healthy women. (Lipitor is the only drug I looked into on the internet but it is a Statin, just like Simvastatin)

There are studies that show lowering cholesterol in men who have heart disease helps. That's about it. I might have found one study on women who had heart disease that said lowering cholesterol helped, but you know how few and far between heart studies using women are.

I decided not to take it. If I live to be 80 that is 30 years on an expensive drug with side effects and no known positive effects.

I don't know your medical history or about the drug you are on, or if you have heart problems but if you don't have heart issues, other than tachycardia from POTS, I would discuss with your doctor if you even need the med. They minimize the side effects, but those drugs have tons of them.

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Hi Jan,

Thanks for your reply. I was of the same frame of mind asyou about taking anything for it but my Dr. is insisting since it is genetic with me and I do get a lot of chest pain as well as some scary crushing feeling in my chest. I am almost 50 years old too and have been chronically unwell for more than half of my life. I don't have heart disease as such but I do have a lot of vascular problems which may be related to the high cholesterol. I don't know why but my health has been deteriorating rapidly over the last 3-5 years. Thanks for showing an interest and for your views. Helen

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Helen, I'm in the exact same spot as you right now--I took simvastatin for just one week, and I had really bad side effects: stomach pain, nausea, heart burn (despite nexium 2x a day), and it dropped my bp too low and made me too dizzy to drive or go to work. I stopped taking it yesterday after a few calls back and forth with my doctor. I feel a little better today--went to work, but my stomach is still recovering.

Like you, I have ceoliac/sprue and pots/ncs (I also have EDS type III).

Nina

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Guest tearose

Statins are very dangerous in people with ANY type of connective muscle disorder!!! Please be careful. Not all doctors understand this relationship...they just think about the "lowering cholesterol" benefit.

I know this as fact.

If you must be on a cholesterol lowering drug try asking for Welchol or another family of drugs, just NOT a statin.

take care, tearose

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Hi, I can understand why your doctors want to lower your cholesterol if it is genetically raised but there are different sorts of tablets that you can take. From the symptoms that you describe I am worried about the muscle aches / pains and weakness. One of the main problematic side-effects of statins is rhabdomyolysis (?spelling). This is muscle breakdown caused by the statin and causes aches, pains and muscle weakness. The excess protein breakdown can lead to kidney problems. As statins work slowly over a long period of time it won't do you any harm to stop it for a while. If I was you I'd stop taking the statin and see your PCP urgently to get blood drawn for CK (muscle breakdown measure) and kidney function. Hopefully the tests will come back normal and then you and your doc can decide what treatment to use for your cholesterol.

Hope you're feeling better soon,

Flop

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Statins reduce CoQ10 to almost nothing, I have heard lots of times. You need CoQ10 for all energy functions in the body. Maybe you can/should take it.

I have heard a study completed in January where a vegan diet (which can be gluten free) had really reduced cholesterol among many other goodies. With some people, policosanol or red rice yeast extract have lowered cholesterol.

I know someone who developed the muscular pain from her statin and the pain and weakness were unbearable. It took months for her to convince her doctor.

At the very least, get yourself checked often to be sure it is working since there are symptoms and risks.

OLL

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My doctor insisted I start Tricor for my slightly elevated triglycerides - apparently it is not a statin - but it gives me horrible headaches. Needless to say, I quit it. I mean, my good cholesterol was 91, bad was 180 - I decided not to worry about the 230 triglycerides! :unsure:

I figure I'm more likely to die from fainting and hitting my head on this huge coffee table hubby loves so much.....

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Hi Everyone, Thanks so much for your replies and advice. It is great having your support!! I am not happy with having to take this medicine but I've had blood taken to find out about the muscle breakdown element but not got result back yet. my fasting cholesterol was a good bit higher than non fasting one and it is almost double what it should be. This was a surprise to my Dr as I'm not overweight. I already have a healthy diet so I would be hard pushed to make it any better. I'm not sure whether that to persevere might help me in the long run as I'm clearly not getting enough blood to my brain as I now have damage to my balance due to lack of circulation and wonder if having the high cholesterol is maybe a contributing factor. I think I'm just cracking up and my body is getting tired of the struggle!! I will definately explore the possibility of a different drug as I don't think I can hack this one for much longer!! Thanks again for all your help! Please take care, Helen :unsure:

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I had very high cholesterol (over 300) and triglycerides (over 900). My PCP urged me to go on Lipitor and TriCor but I wanted to stay away from them because the side effects are nasty. After several discussion, my PCP recommended that I begin Niacin therapy. In less than three months, my cholesterol is normal and triglycerides are slightly elevated. I'm currently taking 3000mg of Niacin (1000mg/three times a day). The only side effect is flushing... but since I'm always cold the flushing is a good thing. Just recently, I started taking a small dosage of TriCor to lower my triglycerides into the normal range.

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I've had high cholesterol since a very young age (before I got 'sick'). I always had wonderful HDLs which were determined protective. I was very thin, ate well (for a college student! no fast food, etc), and was in good physical shape.

At my last appt. we took a cholesterol check (not fasting--so I want to get a fasting one to be sure). My HDLs had dropped to a miserably low level and are no longer protective. I'm only 31--I eat well, am not overweight, but I am not able to exercise.

So, I see that many of us are in this bind. I am going to discuss options at my next appt. with my PCP. I am too young to want to go on meds and I don't think he will push it.

I would first like to try fish oil or other options. Also, if you are not allergic to bees you can take this stuff (mental block on the name) that is made from bee pollen and my mom's PCP has had a lot of success with it. I had not heard of using Niacin--very interesting.

As for statins Helen, the side effects you are having can be from them. Our neighbor had the same thing happen after his heart attack and had all this pain in his arm and weakness. Finally the doctors figured out it was the statin and he changed medication (not sure what to...sorry)...

Interestingly, I mentioned my miserable cholesterol to my ANS doc just to make sure it didn't add to anything (my grandfather had multiple strokes, etc) and he said that statins are being studied in MS patients and are being shown to act as anti-inflammatories for these patients.

So, as negative as we can all feel about them...I thought this was a very interesting and hopeful use for them.

Gayla, that HDL is AMAZING!

Thanks Jan for your info. on those studies...I am going to really talk this all over with my doctor at our next visit (assuming I'm not having some other medical crisis at the time, which I usually am :) ).

Honestly, the cholesterol keeps getting put on the backburner b/c of everything else.

I also thought that the test for C-Reactive protein was a better predictor of heart attack???

Also, a possible culprit for me could be the birth control pill, but I honestly think that it's genetic--which is what a cardiologist we consulted when I was 22 determined.

Hmmmmmmmmmm................tough decisions...

Emily

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Wow i have high cholesterol too and had it even when I was 84 lbs so for me too it must be genetic.But i wonder with so many of us with it if it is just another lovely part of this disease. Very interesting!

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My HDL was only 50 and my LDL was over 200, my total cholesterol was 317...in the past, my cholesterol was at least this high or higher, but my HDL and LDL were the opposite of what they are now, and I was told no meds were necessary. As for taking niacin, tried that in the past and it was really, really bad--because of the vasodialation that comes with "flushing", I was all "fainty" all the time.

I did post an inquiry on the EDS forum about statins and EDS-- no one there cited any known research saying we shouldn't take it, but many concurred with the comment here that those with joint/muscular issues probably aren't the greatest candidates for this class of medicaitons.

Nina

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Hi Helen. Do you take essential fatty acids (EFA)? High cholesterol runs in my family so I'm guessing that's why mine is somewhat high. I started taking EFA's a few years ago to help with inflammation and overall health. My bad cholesterol actually went down and my good cholesterol went up. EFA's are supposed to help with cholesterol and in my case it looks like they helped. I started taking EFA's after a medical professional in one of my support groups introduced me to them. She had dozens of scientific journal articles on the benefits of EFA's. What I think is interesting is that there have been studies done on people who consume diets high in EFA's (salmon, for example) and they have been found to have very low incidences of heart disease. Maybe you could talk to your doctor about taking EFA's?

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I also have high cholesterol. It is genetic.

When I hit age 48 (3 years ago) my doctor insisted I take a statin.

I had tried Niacin, garlic, no fat in my diet, omega 3 supplements etc.

I tried zocor and lipitor which both gave me GI problems.

I have found that lovastatin works well for me. No side effects. My

liver function tests have been fine. I'm on 20 mg daily.

My total cholesterol went from 301 to 185 in 6 months. My LDL and

HDL are normal as well as my triglycerides now.

So far, so good.

We are all so different. It's hard to know what to do.

Dawn

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Hi there, Ive tried to use EFA's in the recent past, not for cholesterol purposes but to see if it would help my circulation problem. I have not been successful as it actually makes the vascodilation worse for me. I'm pretty much dizzy all the time and so I've tried countless things to get some help but so far most things I try just make me worse. I can't understand why this is happening because I used to respond quite well to self help and healthy eating, pacing myself etc. but nothing I do or take these days has any real positive effect. It's as if something has changed as I also have symptoms now I never had before but I will make that a new topic in the future.

Thanks again for all your input! It has made interesting reading and it looks like it's another aspect of the illness which we have to deal with. helen

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