Current medication for FCS, evaluating the risk versus benefits of medicines that raise triglyceride levels, and therapies on the horizon

Medications for high triglycerides

There are currently no treatments available specifically for people with FCS, and lipid-lowering drugs in general use have only a limited effect for people with with condition.  The only treatment that significantly helps to minimise symptoms is dietary management.  For more information on the dietary restrictions and strategies for managing the diet, go to Living with FCS.

As the expression of FCS differs among patients, the impact of different medications can be varied. If a medication is offered to you, discuss with your health professional what benefit is expected and any side effects. Check also if it will interact with any other medication you are taking.

When starting a new medication agree a trial period with your prescribing professional.  It is best to start one new medication at a time as it will be important to identify the cause of any side effects.  If you experience side effects you will able to decide whether the benefit of the new medication outweighs  the impact of the side effects on your daily quality of life.

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Lipid lowering therapies often have limited effect.

Medications that may be beneficial

Fibrates can reduce total triglyceride levels almost by half in some individuals who have FCS, but for most the response is limited.

Sitagliptin is used for diabetes but can also be given to those without diabetes to lower triglyceride levels.

Omacor is a fish oil that lowers triglyceride levels for people with high lipid levels for reasons other than FCS. The benefits of Omacor are uncertain for people with FCS.

Statins may be of benefit to those who have high cholesterol levels, thought to be as a result of other causes than FCS.

Risks versus benefits

Some medications are known to raise triglyceride levels.  If you are prescribed a new medication, ensure that you discuss any potential effect on your lipid levels and any potential risk vs potential benefit the new medication might offer.  Some medications known to raise triglyceride levels are:

Oestrogens, most likely to be prescribed for contraception or to manage the symptoms of menopause.

Diuretics,
sometimes called water pills and used to treat oedema.

Corticosteroids, anti-inflammatory medicines used for auto-immune diseases, skin conditions and asthma.

Tamoxifen, used for homorne-positive breast cancers.

There are many other medications which can raise triglyceride levels. Always read the patient leaflet of any medication you are prescribed to check whether this is the case.

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Therapies on the horizon

Volanesorsen is a therapy licensed in February 2019 by the European Medicines Agency (EMA). You will find the EMA’s decision in the resource panel below.

On 18th September 2020 NICE issued a positive Final Evaluation Document (FED) for Volanesorsen for the treatment of FCS for routine care on the NHS in England.

"Volanesorsen is recommended as an option for treating familial chylomicronaemia syndrome in adults with genetically confirmed familial chylomicronaemia syndrome who are at high risk of pancreatitis, and when response to diet and triglyceride- lowering therapy has been inadequate."

You can find the FED on the NICE website, as well as information about what happens next, in the resource panel below.

EMA and NICE decisions

EMA decision on volanesorsen

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NICE decision on Volanesorsen Download

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