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Plaquenil as a Treatment for COVID-19: What are the Consequences for Chronic Patients?

Published 9 Apr 2020 • By Camille Dauvergne

In recent weeks, hydroxychloroquine (Plaquenil, Quinoric) has been the subject of much media attention, due to debated findings that it might be an effective treatment for the COVID-19 infection. The public’s knowledge of Plaquenil has skyrocketed!

However, Plaquenil is an indispensable background therapy for many patients with chronic diseases such as lupus, rheumatoid arthritis or polymorphic light eruption.

Does this strong interest in hydroxychloroquine create a threat of shortage or deterioration in care for these patients? We asked Carenity members to take stock of the situation. The results presented in this article are based on a study conducted from March 24 to 30 with 244 patients living with lupus and/or rheumatoid arthritis in France, Germany, Italy, Spain, the United Kingdom, and the United States.

Plaquenil as a Treatment for COVID-19: What are the Consequences for Chronic Patients?

Plaquenil is a medication prescribed to countless chronic illness patients each year

Hydroxychloroquine is marketed in the UK under brand names Plaquenil and Quinoric, but also as a generic. This compound has anti-inflammatory and analgesic properties, which is why it is indicated in rheumatology and dermatology:

Since the start of the pandemic, 40% of patients have had difficulty obtaining Plaquenil

A 27-year-old French lupus patient recounts her struggle to find Plaquenil: “I had to call 10 pharmacies to find 3 boxes. I hope this treatment will work for COVID-19, but we mustn't forget about chronic patients. My internist called and said she would have some Plaquenil for me but it would be nice if I could find 1-2 boxes as well. My pharmacist is going to order some for me."

Another lupus patient in the UK shares her difficulty in getting her Plaquenil prescription: "I had a prescription ordered but the pharmacy hasn’t been able to fill my full prescription and has only given me 12 tablets in total so far. It has been two weeks waiting for the remaining tablets."

A 52-year-old American patient living with rheumatoid arthritis also describes her experience at the pharmacy: “I was told by my pharmacist that they were out at his store, he had to order it from the central fill service, but I got my medication in a couple days. I do already refill my prescription as soon as my insurance allows, so fortunately I have a little extra.”

To be able to continue their background treatment, 51% of patients had to make special arrangements to get their Plaquenil. Here are the measures they took:

Carenity Plaquenil Graph

Despite the fact that most of their countries are in self-isolation, 17% of patients had to visit several pharmacies to find their hydroxychloroquine background treatment.

25% of patients anticipated refilling their prescription by ordering their treatment at a pharmacy. Given the current shortage, almost 10% of patients have stockpiled Plaquenil. Though it is understandable, this behaviour contributes to the depletion of the available supply of the medication. For this reason, some pharmacies may reduce the quantities of Plaquenil dispensed or prolong wait times for refills.

Several patients have expressed concern about Plaquenil becoming unavailable:

"It's scary to not only have to take care of ourselves, but also because we don't have access to our medication. I did get a 2 months prescription, but I can tell this is going to be more of a medium or long-term problem and dealing with lupus is stressful enough without this."
(41-year-old Lupus patient in the UK)

"Due to the high demand right now, my insurance has denied me the medication. I got in touch with my pharmacy and doctor to get it covered again. I am worried that there won't be enough of it in the future when I need to reorder it."
(37-year-old patient living with rheumatoid arthritis in the US) 

Almost 15% of patients have had to reduce or stop taking their treatment due to the Plaquenil shortage

Since the start of the outbreak, 12% of patients have reduced their Plaquenil intake, while only 2% completely stopped. Among the patients who have changed their dosage, one in ten have done so without consulting their doctor! 

The main reasons given by patients for modifying their treatment are related to the difficulties encountered in acquiring their Plaquenil (stock shortages in certain regions, long delivery times, etc.). Often, they did not voluntarily modify their treatment, but rather were forced to by the current situation and the difficulties encountered in contacting their referring physician.

A 45-year-old lupus patient in France commented on this, saying: "For me, it was impossible to find Plaquenil. Now I am worried about my health. I'm afraid of another relapse because I've lowered the doses. I really hope the pharmacies will deliver soon."

A rheumatoid arthritis patient in the US also shared her fears: “My rheumatologist instructed me to ration my Plaquenil to make it last. Without Plaquenil I am unable to function. With it, I am able to live my life and go to work.” 

It is important to remember that you should avoid stopping or changing your Plaquenil regimen without consulting your doctor as best you can. You should therefore anticipate renewing your prescription as far in advance as possible.

Furthermore, Plaquenil does not protect you from becoming infected with the coronavirus, so it is vital that you continue to implement the barrier gestures and rigorously follow the self-isolation and shielding guidelines.

You are on a long-term course of Plaquenil, what is the procedure to follow to get your medication?

Plaquenil is only available in the UK by prescription. Hydroxychloroquine is not currently licensed to treat COVID-19 related symptoms or to prevent infection, so your pharmacist can only dispense it as indicated, i.e. in the case of rheumatoid arthritis, lupus, or certain dermatological conditions. Clinical trials are underway to investigate Plaquenil as an effective agent in the treatment or prevention of COVID-19 infection, but no conclusions may yet be reached on its safety or efficacy. Until clear, definitive evidence has been found, Plaquenil should only be used for this purpose within a clinical trial.

Accordingly, you may want to inform your pharmacist of your condition and who prescribed your Plaquenil (i.e. your rheumatologist, internist, dermatologist, nephrologist, neurologist or pediatrician) so he or she understands the urgency of your prescription..

Are you also one of the 40% of patients who have had difficulty in obtaining their Plaquenil? What solutions have you found?

Tell us about your experience in the comments below!

avatar Camille Dauvergne

Author: Camille Dauvergne, Junior Community Manager France

Camille Dauvergne is currently a Junior Community Manager at Carenity. She assists the France Community Manager in animating the platform, easing member navigation of the site and encouraging them to interact.... >> Learn more

3 comments

Raythebaker
on 10/04/2020

I have been quite lucky here in the uk and have had no problem getting hold of it from my pharmacy and doctor and hope it continues in this way just hope it does not get to the stage where I can’t get hold of it stay safe everyone x

robjmckinney
on 17/04/2020

My wife has been taking it for 40 years and as yet not experienced any shortages. My wife did contact the Chemist and they stated they don't expect any shortages in the present crises. Like my Metformin which the Australians are testing as a possible help against Covid-19 no shortages are expected there!

martadon
on 09/05/2020

I get 4 weeks supply every 4 weeks, probably because here in the UK we only get what the Dr prescribes and mine only prescribes 4 weeks at a time. If people stuck to ordering sensible amounts there wouldn't be a shortage. The story above about the french person wanting 3 boxes disgusted me and is a prime reason for shortages. 

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