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

Apr 9, 2020 • 4 comments

In recent weeks, hydroxychloroquine (Plaquenil) has been the subject of much media attention, due to debated findings indicating 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 US under brand names Plaquenil and 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 recounted 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 shared 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 described 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 behavior 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 stay-at-home orders and social distancing guidelines.

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

Plaquenil is available in the US by prescription only. Hydroxychloroquine has not been approved by the US Food and Drug Administration to treat the coronavirus, so your pharmacist can only dispense it as indicated, i.e. in the case of rheumatoid arthritis, lupus, or certain dermatological conditions.) Currently, Plaquenil is only prescribed for COVID-19 in authorized clinical trials or in the treatment of hospitalized individuals for whom a clinical trial is not available or participation is not feasible.

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

Comments

Bkeilholtz
on 4/11/20

Lord I hope I don't run into the shortage problem. I got ahold of my doctor when I first heard word about the drug being used for covid19 he said there wasn't a shortage and hasn't heard back of one. Well that was 2weeks ago. It's ridiculous that us with lupus have to be on the back burner. I'm sorry this is something we need everyday and I can't kiss a dosage. I'm sure alot of you can't either. My insurance has already jacked me around with my infusions I was doing for almost a year and a half. Which was helping. But now to get shorted not just me all of us. Lupus isn't something we can cure or make go away. There's tons of ppl that don't understand what we go through on a daily basis. God do I wish more ppl would understand more. Sorry to rant. This struggle is so real for us everyday but add this to it doesn't help. 

Mark-IL
on 4/12/20

Received a letter from the VA, that due to the interest in your medication, it will now only he dispersed on a 30 day schedule instead of the usual 90 day.  Your doctor has been notified.

probably the most stressful thing about this is that it now triples the co-pay amount. And for many veterans this can cause financial stress.  
since ai see my doctor before I run out, probably will have the conversation on changing to another medication.

As I take Plaquenil for RA, and also having Polumnary Fibrosis, some medications that is normally used for RA, I cannot take.

looks like it might be a bumpy ride for a bit, tighten up the seat belts. I am thinkin

genepoll
on 4/13/20

I have suffered from RA for about three years. My first rheumatologist put me on Sulfasalazine and Plaquenil because I didn't want to go on methotrexate. That didn't work, so my second rheumatologist convinced me to go on 15mg methotrexate only. That went on for six months and didn't seem to work even though dosage was temporarily increased to 17.5mg. My third rheumatologist is head that department at the Univ of Washington in Seattle. He described "triple therapy" (Sulfasalazine, Plaquenil, and methotrexate) which some believe to be as effective, or nearly as effective as a biologic (Humira, etc.) but at much lower cost. Biologics are horribly expensive here in the U.S. because of our terrible health care system and the profit motive of pharmaceutical corporations that prevents them from authorizing a generic. Biologics can cost $40 - $60,000/year here, which is impossible for people without the right kind of health insurance or no insurance. Unfortunately, we don't have a universal single-payer system in the U.S. unlike other advanced countries. My fourth rheumatologist was a top student of my third rheumatologist and has his complete confidence. I had an appointment with him on May 13, but because of COVID-19, that will have to be rescheduled. Meanwhile, he also prescribed the triple-therapy and planned to evaluate its effectiveness when we meet. I acquired a supply of Plaquenil and Sulfasalazine to go with my methotrexate, but I did not take either. Instead, I halted methotrexate cold turkey. Why? Because all three in the triple-therapy are immunosuppressants that would lower my resistance to COVID-19.  Unfortunately, halting methotrexate didn't work. After a month of no meds, I had to begin methotrexate (only) again because of RA pain. Now I see that the U.S. president (an idiot/moron/nut) , in looking for a magic pill for political purposes, has caused the rush on Plaquenil. I feel sorry for lupus victims whose supply of this medication, essential to their care, is now unavailable or in extremely short supply. (This despite the fake U.S. president announcing that "millions" of pills have been ordered.)  For others, however, taking Plaquenil without a prior EKG and getting clearance from a cardiologist could have fatal results. The cure could be worse than the disease. I would appreciate it if this site would address the dilemma of taking immunosuppressant drugs like Plaquenil, methotrexate, and Sulfasalazine in the current environment of COVID-19 infection and death. Wouldn't taking these immunosuppressants make the patient more liable to become infected with the novo corona virus? Please consider my experience, perspective, and the best medical advice on this issue. Of course, all say don't change your medications without talking to your doctor. I regard that as defense against liability lawsuits that are so prevalent in the U.S. because of the lawyers. Remember what Shakespeare said about lawyers in Hamlet. I believe we must be in charge of our own health care and seek the best advice, not simply turn ourselves over to physicians, who range from charlatans to geniuses. Tell me what you think, personally or professionally. THANKS!

p.s. Viv' la France!

LisaPA
on 8/1/20

I didn’t have any problems getting my prescriptions filled.  When my physicians were able to see me in person again, they asked was I able to get my meds.  Maybe it was easier for me because I’m on the generic form.

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