Hydroxychloroquine

What are the aims of this leaflet? 

This leaflet has been written to provide information for patients about hydroxychloroquine. It tells you what it is, how it works, how it is used to treat skin conditions, and where you can find out more about it.

What is hydroxychloroquine and how does it work? 

Hydroxychloroquine is one of several antimalarial drugs that have anti- inflammatory effects useful in other diseases.

Hydroxychloroquine is particularly effective for systemic lupus erythematosus (SLE) and discoid lupus erythematosus (DLE). By reducing inflammation, hydroxychloroquine can decrease pain, swelling and stiffness of joints, and improve or clear some rashes.

Which skin conditions are treated with hydroxychloroquine? 

These include:

How long will I need to take hydroxychloroquine before I see an effect?

Hydroxychloroquine does not work immediately, and it may be 12 weeks or longer before any benefit is noted.

When should I take hydroxychloroquine? 

You should take hydroxychloroquine with or immediately after food.

What dose should I take? 

Your doctor will advise you about this. Usually you will be started on a full dose (for example, 400 mg daily or 2 tablets of 200 mg and later your doctor may reduce the dose (for example, to 200 mg daily). Some patients may only need to take hydroxychloroquine two or three times per week or only during the summer months when their disease when their disease typically flares up.

What are the possible side effects of hydroxychloroquine? 

Possible general side effects:

Side effects are uncommon; however, a few people may develop one of the following: rash, indigestion, diarrhoea, headache, blurred vision, cramps or muscle weakness, darkening of the skin, or bleaching of the hair.

Hydroxychloroquine can make psoriasis worse.

Possible side effects on the eyes include:

A rare, side effect of long-term hydroxychloroquine is “hydroxychloroquine retinopathy”. In this condition, hydroxychloroquine affects the function of the light-sensitive film at the back of the eye called the retina. If not identified early through regular eye screening, severe retinopathy can cause permanent loss of sight. If severe, sight loss can may continue to worsen after the drug is stopped.

Specialised eye tests, available most commonly in the hospital eye service, are able to detect very early signs of retinopathy before symptoms develop. If detected at this early stage, stopping hydroxychloroquine prevents further worsening of sight. Monitoring for these early changes of hydroxychloroquine retinopathy is recommended in the United Kingdom.

Very rarely, depression or other severe mental health problems can occur, particularly in the first month of treatment.

How common is hydroxychloroquine retinopathy?

Most people who take hydroxychloroquine will not develop retinopathy. Furthermore, the development of retinopathy is very rare in people taking the drug at standard doses for less than 5 years.

With specialised eye tests, signs of hydroxychloroquine retinopathy may be detected in around one in thirteen people who have taken the medication for more than 5 years. Most of these will not have noticed any changes in their sight.

For those taking the medication for more than 20 years, the risk of retinopathy increases to between a fifth and half of people.

What are the additional risk factors for hydroxychloroquine retinopathy?

It is known that individuals with additional risk factors are at higher risk for hydroxychloroquine retinopathy. These additional risk factors include:

  • a high daily dose (greater than 5 milligrams per kilogram of body weight)
  • Kidney disease (stage 3 kidney disease or worse)
  • those also taking tamoxifen (a medicine sometimes used in people who have had breast cancer).

When will I be monitored for the development of hydroxychloroquine retinopathy?

The doctor who prescribes hydroxychloroquine will assess whether you have any additional risk factors for hydroxychloroquine retinopathy, as listed above.

If no additional risk factors are present, it is recommended that you are referred for yearly monitoring after 5 years of taking hydroxychloroquine. This referral will need to be made within a year of the retinal monitoring visit being due. It is useful to keep a note of the date at which monitoring will be due, so that referral can be made at the appropriate time, about a year before.

If you have one or more of these additional risk factors, it is recommended that you are referred to the hospital eye service for monitoring every year from 1 year after starting hydroxychloroquine. This referral may be made when it is clear that you will continue on the medication for the long-term.

What should I do if I am worried about my vision?

If you notice a change in your vision, it is recommended that you make an appointment with your local optometrist as soon as possible. It is important that you tell your optometrist that you are taking hydroxychloroquine.

If you are already having yearly monitoring for hydroxychloroquine retinopathy by the screening service, it is very unlikely that any problems with vision are due to hydroxychloroquine retinopathy. This is because the condition progresses very slowly. For this reason, the next monitoring visit does not need to happen sooner than planned. It is more likely that another condition of the eye might explain your new symptoms. You should make an appointment with your local optometrist.

How will I be monitored for other side effects of hydroxychloroquine treatment? 

Before starting on hydroxychloroquine your doctor may wish to carry out a blood test to check that your liver and kidneys are working normally. It should not be necessary to carry out regular blood tests during treatment, unless your medical condition means you should have tests.

Does hydroxychloroquine affect fertility or pregnancy? 

The latest evidence does not show any increased risk of death of an unborn baby, miscarriage, premature labour, or increased risk of stillbirth if hydroxychloroquine is taken during pregnancy. However, there is a small increased risk of defects in the unborn baby, especially at doses higher than those normally used in lupus of the skin. It is advisable that hydroxychloroquine be used at the lowest effective dose during pregnancy. If you are planning to have a baby or discover that you are pregnant, consult your healthcare professional.

May I drink alcohol while taking hydroxychloroquine? 

There is no particular reason for you to avoid alcohol while taking hydroxychloroquine, although it is advisable to adopt sensible drinking habits in line with the NHS guidelines.

Can I take other medicines at the same time as hydroxychloroquine? 

Most other drugs can be taken safely with hydroxychloroquine. There are important interactions with amiodarone and digoxin (taken for heart disease) and with drugs used for epilepsy or depression. However, if you start any new drugs, you should remind the doctor that you are already taking hydroxychloroquine.

People taking tamoxifen are at greater risk of developing hydroxychloroquine retinopathy and should be referred for annual retinal monitoring after 1 year of starting hydroxychloroquine.

Usually, antibiotics called ‘macrolides’ should not be taken with hydroxychloroquine as these can increase the risks of heart problems. Common macrolide antibiotics include azithromycin, clarithromycin and erythromycin.

Indigestion remedies, including some that are sold over the counter, can stop hydroxychloroquine from being absorbed.

Always discuss other medications with your doctor or pharmacist before taking them.

Where can I find out more about hydroxychloroquine? 

If you want to know more about hydroxychloroquine, or if you are worried about your treatment, you should speak to your doctor or pharmacist.

This information leaflet does not list all the side effects of hydroxychloroquine. For full details, please look at the drug information sheet enclosed in the hydroxychloroquine leaflet:

https://www.medicines.org.uk/emc/product/1764/pil

Jargon Buster: https://www.skinhealthinfo.org.uk/support-resources/jargon-buster/

Please note that the British Association of Dermatologists (BAD) provides web links to additional resources to help people access a range of information about their treatment or skin condition. The views expressed in these external resources may not be shared by the BAD or its members. The BAD has no control of and does not endorse the content of external links.

This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your doctor. 

This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel

 BRITISH ASSOCIATION OF DERMATOLOGISTS PATIENT INFORMATION LEAFLET

PRODUCED AUGUST 2004

UPDATED FEBRUARY 2010, JANUARY 2013, APRIL 2016, JUNE 2019, AUGUST 2021

NEXT REVIEW DATE AUGUST 2024

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