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Treatment for FH - FAQ'S

These FAQs have been compiled by Lipid clinic consultants and FH specialist nurses working in the Wales FH service.  Some of the answers may change as new research evidence becomes available, so you should discuss any concerns you have with your own doctor as well.

What are the aims of treatment for FH?

The aim is reduced the risk of cardiovascular disease by
1.    Lowering LDL cholesterol
2.    Avoiding additional risk from smoking
3.    Enhancing lifestyle and dietary factors for a healthy heart.

Is it possible to control blood cholesterol in FH without medication?

Almost always not.  FH is an “inbuilt” change in cholesterol handling by the body and is not caused by diet or lifestyle.  Therefore almost all individuals with FH will need medication and diet will have only a small effect on blood cholesterol.

Having said that, a healthy diet will help keep the heart healthy in many other ways, most of which are not measured on a blood test.

How important is it to quit smoking?

Very important.  Smokers approximately treble their risk of early heart disease and when combined with FH this is a very risky combination.

How effective are statins in reducing risk of early heart disease?

Statins are very effective.  Observations from research in Britain and Holland suggest that individuals with FH who are effectively treated with statins probably restore life expectancy to that of the general population.  

How low should I aim to get my cholesterol on treatment?

In adults NICE guidance advises that the target for LDL cholesterol is more than 50% from starting point.  However this figure needs to be adjusted according to individual clinical circumstances and you should consult your doctor, preferably a lipid specialist to discuss your own particular requirements.  

NICE  guidance advises a “High Intensity” statin – what does that mean?

This means that the more potent statins, particularly atorvastatin and rosuvastatin are often needed and clinically indicated in FH.  Lower intensity statins e.g. simvastatin and pravastatin may be effective in some people but usually do not lower cholesterol sufficiently to reach the NICE target values.

What about Ezetimibe (Ezetrol)?

A  This may be indicated in people with FH in combination with a statin.  The evidence that it prevents heart attacks is not as clear as for statins.  However it is good at lowering LDL cholesterol when combined with a statin and this the specific problem in FH.

Should I be worried about the safety of statins?

The safety record of statins is very good.  Statins have been extensively researched in many studies with large numbers of patients.  In FH the benefits or statin therapy generally substantially outweigh any safety concerns.  However you should read the patient information leaflets and discuss any concerns you may have with your doctor.

What about about side effects of statins?

Statins are well tolerated in more than 90% of people who take them.  You should check the list of possible side effects on the patient information leaflet, but be aware that most of these only occur in a very small proportion of patients.  Side effects do occur in a few people of which the most common is aches and pains in the muscles.
 

What if I do get aches and pains in my muscles?

If the pains persist for more than a few days, and are generalised (a bit like having flu), it is usually a good idea to have your blood tested for a marker of muscle inflammation (creatine kinase) while you are still taking the tablets.  Depending on how troublesome your symptoms are you may wish to stop the tablets to see if symptoms improve.  It is best to have your blood checked before you stop the tablets because the blood test can return to normal within a few days, making it difficult to work out if it was indeed the cause if you had stopped the tablets already..  Sometimes it is difficult to work out if muscle aches are due to statins, because these can occur for other reasons.  Also the blood test for creatine kinase can be raised in some individuals for other reasons most commonly recent exercise.  Therefore it is important that your situation is carefully reviewed by a doctor who has specialist experience in looking after people on treatment with statins (usually a lipid clinic consultant).
 

At what age should children with FH be on treatment with statins?

Generally from age 10 years onwards though under specialist supervision treatment can sometimes be started earlier or delayed, depending on individual circumstances.

Are statins safe in pregnancy?

Statins are not regarded as safe in pregnancy and effective contraceptive precautions should be taken.  Please see a separate page on statins and pregnancy.

What about bile acid sequestrants?

These medications (Colestipol, Cholestyramine and Colesevelam) work in the intestine (gut) to prevent uptake of bile acids which are made from cholesterol.  They are indicated for FH and generally very safe, but often have troublesome gastro intestinal side effects, so are now generally second or third line after statins.
 

 

The aim is reduced the risk of cardiovascular disease by

1.    Lowering LDL cholesterol
2.    Avoiding additional risk from smoking
3.    Enhancing lifestyle and dietary factors for a healthy heart.

 

 

Almost always not. 

FH is an “inbuilt” change in cholesterol handling by the body and is not caused by diet or lifestyle. 

Therefore almost all individuals with FH will need medication and diet will have only a small effect on blood cholesterol

Having said that, a healthy diet will help keep the heart healthy in many other ways, most of which are not measured on a blood test.

 

Very important. 

Smokers approximately treble their risk of early heart disease and when combined with FH this is a very risky combination.

 

 

Statins are very effective.

Observations from research in Britain and Holland suggest that individuals with FH who are effectively treated with statins probably restore life expectancy to that of the general population.  

 

NICE guidance advises that the target for LDL cholesterol is more than 50% from starting point. 

However this figure needs to be adjusted according to individual clinical circumstances and you should consult your doctor, preferably a lipid specialist to discuss your own particular requirements.  

 

This means that the more potent statins, particularly atorvastatin and rosuvastatin are often needed and clinically indicated in FH. 

Lower intensity statins e.g. simvastatin and pravastatin may be effective in some people but usually do not lower cholesterol sufficiently to reach the NICE target values.

 

 

 

This may be indicated in people with FH in combination with a statin.  The evidence that it prevents heart attacks is not as clear as for statins.  However it is good at lowering LDL cholesterol when combined with a statin and this the specific problem in FH.

 

The safety record of statins is very good.

Statins have been extensively researched in many studies with large numbers of patients.  In FH the benefits or statin therapy generally substantially outweigh any safety concerns.  However you should read the patient information leaflets and discuss any concerns you may have with your doctor.

 

Statins are well tolerated in more than 90% of people who take them.  You should check the list of possible side effects on the patient information leaflet, but be aware that most of these only occur in a very small proportion of patients.  Side effects do occur in a few people of which the most common is aches and pains in the muscles.

If the pains persist for more than a few days, and are generalised (a bit like having flu), it is usually a good idea to have your blood tested for a marker of muscle inflammation (creatine kinase) while you are still taking the tablets.  Depending on how troublesome your symptoms are you may wish to stop the tablets to see if symptoms improve.  It is best to have your blood checked before you stop the tablets because the blood test can return to normal within a few days, making it difficult to work out if it was indeed the cause if you had stopped the tablets already..  Sometimes it is difficult to work out if muscle aches are due to statins, because these can occur for other reasons.  Also the blood test for creatine kinase can be raised in some individuals for other reasons most commonly recent exercise.  Therefore it is important that your situation is carefully reviewed by a doctor who has specialist experience in looking after people on treatment with statins (usually a lipid clinic consultant).

 

Generally from age 10 years onwards though under specialist supervision treatment can sometimes be started earlier or delayed, depending on individual circumstances.

 

Statins are not regarded as safe in pregnancy and effective contraceptive precautions should be taken.  Please see a separate page on statins and pregnancy.

 

These medications (Colestipol, Cholestyramine and Colesevelam) work in the intestine (gut) to prevent uptake of bile acids which are made from cholesterol.  They are indicated for FH and generally very safe, but often have troublesome gastro intestinal side effects, so are now generally second or third line after statins.