An online survey consisting of 10 questions relating to the medication hydroxychloroquine was shared through LUPUS UK’s social media channels and HealthUnlocked forum from 13th June 2019 and results were collected for two weeks. 989 people living in the UK participated in the survey. Of these, 71.4% reported a primary diagnosis of systemic lupus erythematosus (SLE), 6.6% undifferentiated connective tissue disease (UCTD), 5.3% mixed connective tissue disease (MCTD), 5.2% cutaneous (skin) lupus and the final 11.5% reported conditions including rheumatoid arthritis, Sjögren’s syndrome and antiphospholipid syndrome (APS).
Participants were asked whether they had ever experienced side effects that they or their doctor/specialist clinician attributed to hydroxychloroquine;
– 56.4% of respondents reported never experiencing side effects from hydroxychloroquine
– 23% reported experiencing side effects which abated after continuing the treatment
– 12% of respondents reported that they were currently experiencing side effects
– 8.6% of respondents stopped taking the medication as a result of side effects
The chart below displays the most commonly experienced side effects of hydroxychloroquine reported by respondents. Gastrointestinal (stomach/digestive/bowel) disorders were by far the most commonly reported (55%) followed by headache/migraine (32.7%). Commonly reported ‘other’ side effects included dizziness and disturbed sleep. It should be noted that in some cases it can be difficult for patients to discern whether they are experiencing a symptom of lupus, symptoms from an overlapping condition, or a side effect from medication. For those taking multiple medications it can become increasingly difficult to identify the source of the problem.
Differentiation between brands/versions of hydroxychloroquine
There are a few different versions of the drug hydroxychloroquine available in the UK. Plaquenil® was the original brand or trade name for hydroxychloroquine and the only other branded product is Quinoric® (produced by Bristol Laboratories). Since the patents for these two brands expired (and production of Plaquenil was discontinued) generic versions (produced off-patent and cheaper than the originals) have been produced by a variety of companies. Every version (with a brand name or generic version) includes the same quantity of the active ingredient hydroxychloroquine, but the formulations differ in terms of the tablet fillers. The generic tablet versions are sometimes known by the name of the company that produces them. The versions currently dispensed by pharmacists in the UK are Zentiva (produced by Zentiva), Blackrock (produced by Blackrock Pharmaceuticals, Teva (produced by Teva UK Ltd) and Bristol (a generic version of Quinoric produced by Bristol Laboratories).
The chart below lists the brands/versions of hydroxychloroquine regularly taken by respondents. Quinoric is the most regularly taken version reported by respondents, followed by Plaquenil. It is worth noting that Plaquenil is probably so highly reported due to the large number of patients receiving this brand historically over many years, prior to discontinuation. Many respondents in the comments state that the version they take changes regularly, dependent upon which their pharmacist dispenses.
“It varies from month to month depending on what the pharmacy gets in, but usually Quinoric.”
We asked whether the respondents had a particular version of hydroxychloroquine specified on the prescription from their doctor/specialist clinician and 62.7% stated that they do not and take whichever is dispensed by their pharmacist. The version most commonly specified on prescriptions was Zentiva (10.9%) and a further 10.9% don’t currently have a specified brand but would like one to be.
Of those respondents who have a specific version on their prescription approximately 63% have experienced difficulty obtaining the version they require; every time (6.5%), regularly (18.4%) and occasionally (38%). The reasons given by pharmacists are in the chart below;
The results from our online survey suggest that many UK lupus patients and healthcare professionals may not be aware that certain versions of hydroxychloroquine tablet are associated with more side effects. Over 17% of respondents didn’t know which version of the tablet they regularly take and almost 63% do not currently have a version specified by their prescribing clinician.
“Is there a problem with the side effects of different brands?”
“I have always assumed that one brand is the same as another as they contain the same amount of the same medicine. This has made me think now about how the fluctuations in my symptoms could be related to the brand.”
Previous research published in The Journal of Rheumatology (HERE) has indicated that the Quinoric version of hydroxychloroquine is attributed to higher rates of gastrointestinal disorder reported as a side effect by people with lupus. Some lupus patients may benefit from avoiding certain versions of hydroxychloroquine and having an alternative specified on their prescription. More than 55% of respondents who had experienced side effects from the medication reported experiencing gastrointestinal disorders and in some cases this could potentially be avoided, improving quality of life for the patient, possibly reducing the need for additional prescription medications such as proton-pump inhibitors and/or reducing the need for investigations. There could also be a beneficial impact on adherence to hydroxychloroquine treatment which has been shown to improve long-term survival of SLE patients (HERE).
“Hydroxy was an effective drug that helped with some of my symptoms, which are now significantly worse as I cannot tolerate Quinoric which is all they would supply.”
|LUPUS UK would like all health professionals prescribing hydroxychloroquine in the UK to be aware of the potential side effects from some versions of the tablets. If an SLE patient is experiencing gastrointestinal side effects from their hydroxychloroquine then we would like their doctor to discuss whether a change in version may be worth considering before a change in medication.|
For those patients who do have a specific version of hydroxychloroquine prescribed, action needs to be taken to ensure that they are able to obtain this from their pharmacy; particularly if they have experienced side effects from other versions. Approximately 63% of respondents with a specific version on their prescription had experienced difficulty obtaining it. If these patients are unable to obtain the version that suits them, it can result in increased side effects (from taking an unsuitable brand) or non-adherence. This can lead to a generalised flare of lupus symptoms and a need for other more expensive medications with the potential for more serious side effects and a need for additional regular monitoring tests.
“If I cannot find a supply of Zentiva I may have to stop taking hydroxychloroquine”
“If I couldn’t get Zentiva I simply wouldn’t take it.”
“…none of my local pharmacies in my new area supply Teva. This can often result in me not taking my medication as often as I should.”
|LUPUS UK would like pharmacists to assist SLE patients in obtaining the version of hydroxychloroquine that they require. In some cases this may require contacting the manufacturers’ customer service teams to enquire about availability. Further information about this is available HERE.|
It is important to note that not all patients with SLE will necessarily experience adverse effects from any particular version of hydroxychloroquine. This can be observed from the 56.4% of respondents never experiencing a side effect despite Quinoric/Bristol versions being the most commonly dispensed. At present it is not possible to predict which patients are more at risk of side effects from certain tablets than others.
“I’ve had various brands over the years and never noticed a difference between any.”
For further information about the versions of hydroxychloroquine available in the UK and advice for patients, please visit www.lupusuk.org.uk/hydroxychloroquine-prescriptions/
If you have experienced side effects from your hydroxychloroquine then you should report them using the Yellow Card Scheme. It is important to specify which company’s version of hydroxychloroquine you experienced the adverse reaction to, especially if a change of version has reversed these effects for you. You can lodge a report online HERE. Without many more yellow card reports we will never get the NHS contracts changed.
We would like to express our thanks to Prof Caroline Gordon (Consultant Rheumatologist) and Rebecca Gilman (Lupus Research Clinical Nurse Specialist) for their valuable contributions to the provision of this information.