“Hydroxychloroquine is especially important for people with lupus, which can be life-threatening. The drug can lower the risk of dying from lupus and prevent organ damage, and is considered the standard of care. If patients stop taking it after using it regularly for a long time, they can gradually become quite ill.” - Dr. Michael Lockshin, of the Hospital for Special Surgery in Manhattan
With the ever evolving world health situation known as COVID-19, has come a panicked frenzy to discover possible treatments. More and more the drug hydroxychloroquine has been appearing in headlines as a potential treatment for the coronavirus disease related pneumonia. As of March 30th, the FDA issued an Emergency Use Authorization (EUA) to use it for COVID-19 treatment, with the caveat that even though it has not been specifically approved as safe and effective, it is available to be used. Due to this, hydroxychloroquine, its brand name Plaquenil, and its sister drug chloroquine, have exponentially increased in demand. The result is shortages around the globe and in many cases, patients with rheumatic diseases like lupus and rheumatoid arthritis, have been denied access to this life-saving medication.
We, at More Than Lupus, know this is a scary time for lupus patients. This blog is intended to provide information, update you on pharmaceutical developments, and help you to hopefully find a way of obtaining the drug if you have not been able to do so.
WHAT IS HYDROXYCHLOROQUINE?
Hydroxychloroquine or the brand name Plaquenil is in a class of medications that was first used to prevent and treat malaria. Today it is most commonly used to treat lupus, rheumatoid arthritis, and other lupus-overlap conditions. It is considered a disease-modifying anti-rheumatic drug (DMARD). It is believed to help decrease pain, prevent joint damage, and decrease the risk of organ involvement by interfering with the communication of overactive cells in the immune system.
Hydroxychloroquine or the brand name Plaquenil is the most commonly prescribed and well tolerated antimalarial available. In instances where it cannot be used, chloroquine is the next line of defense. Though the outcome is similar, the drug can cause more side effects than hydroxychloroquine. Lastly, quinacrine is the least prescribed alternative in this category, usually available by compound pharmacists and given if other antimalarials are not adequately managing symptoms.
When used for lupus or other rheumatic diseases, hydroxychloroquine is not generally a fast-acting drug. This is an interesting fact to mention, since it appears fast-acting with the speculative reports regarding its usage against COVID-19. With most diseases, it can take 4-6 months to experience the full benefits of this medication. The primary goal of hydroxychloroquine is to control lupus long-term, in fact, most patients may be on it for the rest of their lives. For this reason, many of the top rheumatologists around the world deem it the “lupus life insurance policy.”
Since the drugs FDA approval in 1956, there have been multiple studies that have proven hydroxychloroquine, when taken as prescribed, can help lupus patients live longer and healthier lives.
In addition to increased life-expectancy, here are some other reasons WHY it is so important for lupus patients to have access to hydroxychloroquine:
It prevents lupus flares by as much as 50%
It is effective in treating rheumatoid arthritis
It reduces lupus related rashes and skin lesions
It protects against pleuritis (inflammation of the lining of the lungs)
It protects against pericarditis (inflammation of the lining of the heart)
It can prevent kidney damage
It prevents lupus from affecting the brian and spinal cord
It reduces fevers and fatigue
It restrains the immune system without increasing the odds for infections
It protects against UV light
It can lower cholesterol and blood glucose levels
It can lower blood clots associated with antiphospholipid antibodies such as the lupus anticoagulant and anticardiolipin antibodies
It can help treat other forms of lupus, such as discoid lupus, scarring and non-scarring cutaneous lupus
It can decrease mouth and nose sores associated with lupus
It can be effective with treating lupus overlap diseases such as Sjogren’s Syndrome, mixed connective tissue disease, and other types of arthritis.
Let’s be clear, hydroxychloroquine is not a cure for lupus. However, many patients, including myself, would call it a game changer, a proverbial light at the end of a very dark lupus tunnel.
Now, with every medication, it is important to understand how to safely take it and what potential side effects may present. The benefits clearly out weigh the side effects for most, however, some may have severe reactions to it. Here are some important things to note when taking hydroxychloroquine:
*It is recommended to have regular monitoring by an ophthalmologist (eye doctor) while taking this drug. Most rheumatologists suggest an eye exam every six months.
Take it exactly as prescribed by your physician.
Increasing your dose on your own can actually hurt you. Dosing is based on your height and weight. Taking too much can make you sick and could affect your vision permanently.
Do not stop taking the medication without speaking to your doctor.
Take it at the same time everyday.
Do not smoke with this medication. It will counteract any positive effects.
If you experience stomach upset, you can take it with food or milk.
It can be taken with other lupus medications.
90% of those who take hydroxychloroquine experience no side effects, but if they occur, they are usually mild. These include: nausea, diarrhea, dizziness, loss of appetite, dry skin, changes in pigment of skin, and headache.
*There is a rare chance that retinal damage will occur while taking hydroxychloroquine. This is known as hydroxychloroquine retinopathy. This sort of damage occurs only in 1 out of 5,000 people who take the drug for five years or more.
WHAT IS THE HYDROXYCHLOROQUINE - CORONAVIRUS DISEASE CONNECTION?
Why would an antimalarial that has been around for decades be the first offense against a newly discovered coronavirus? The answer is not a simple one. In fact, it is STILL unclear how this category of medications work against COVID-19. Malaria, which the drug and all its various types was originally developed for, is caused by a parasite that is spread by mosquitoes. The COVID-19 virus does not originate from a mosquito, nor does it come from a parasite. It is believed COVID-19 is caused by the SARS-CoV-2 virus.
To add even more fuel to the confusion fire, parasitic infections and viral infections are very different, so researchers and medical professionals wouldn’t expect for one to work for the other. Other theories have been speculated, as to how maybe the medication affects the surface of cells and therefore, prevents the virus from infecting it, or the more popular theory, that the chloroquines help with the immune response (which is the case with lupus).
Due to some small studies in China and Europe, where COVID-19 patients were given hydroxychloroquine and had positive results, the FDA is fast-tracking (as mentioned above) the medication to be used in the fight against the coronavirus. The FDA clearly states that there is not enough evidence to support the effectiveness of this drug, however, daily briefings by the White House are appearing to state otherwise. Most doctors suggest that the quality of clinical data supporting hydroxychloroquine in COVID-19 is “poor and heavily confounded.” As Dr. Alfred H.J. Kim, MD, PhD, of the Washington University School of Medicine, in St. Louis, Missouri goes on to state, “The impact of the lack of guidelines for HCQ/CQ use opens up the possibility for over-utilization in COVID-19 patients, such as use in any hospitalized patient or more worrisome, in prophylactic use where absolutely no data currently exist for this use.”
Interestingly, even with the lack of clinical data, hydroxychloroquine has sky-rocketed to the top of a very short list for being the best option to apply to COVID-19 under what is deemed “reasonable management.”
WHAT TO DO IF YOU CANNOT REFILL YOUR MEDICATION? Lupus and other rheumatology patients across the country are reporting that they are unable to fill prescriptions for hydroxychloroquine because the drugs are being set aside only for use in COVID-19. Patients are being forced to ration their medication or even go without it altogether, placing them at risk for gradually worsening disease and endangering their health.
We have even been made aware that in certain cases, even if the drug is available, the patient must first obtain approval from a third party certifying that they are eligible to receive the medication. This not only puts stress on the patient, but the delay in accessing the medication places an administrative burden on rheumatologists and other practices, when the medical community is already suffering from burn-out.
So what do you do?
If you are unable to refill your prescription for hydroxychloroquine here are some suggestions.
Try another pharmacy. Smaller “mom and pop” pharmacies may have more of a supply than larger chain pharmacies.
Try having your doctor write another prescription. Some pharmacies will not refill hydroxychloroquine without a governmental clearance code.
Try calling your insurance company.
Try using a mail order pharmacy like expressscripts.com or honeybeehealth.com.
Write your local legislators here.
Because of the demand for hydroxychloroquine, More Than Lupus, in collaboration with numerous rheumatic focused nonprofits, were included in a American College of Rheumatology's group letter regarding the proper prescribing of hydroxychloroquine and chloroquine during the COVID-19 crisis. The letter was sent to state governors, pharmacy board managers and other state officials in hopes of urging practical and ethical disbursement of the drug, to ensure those who are currently taking it for chronic rheumatic conditions, will be able to continue to access the medication.
It is important more than ever for people with lupus to follow the guidance of their doctors and the safety guidelines being issued by the CDC. Despite the rumors, there is NO evidence that taking hydroxychloroquine is effective in preventing a person from contracting COVID-19, nor is there data suggesting lupus patients are at a decreased risk if they have been taking it. In fact, the Lupus Foundation of America states the opposite. Per their website: “People with lupus are less able to fight off bacteria and viruses, like COVID-19. When people with lupus do get sick their illness may also trigger a lupus flare. People with lupus may also have other conditions that put them at higher risk for serious illness from coronavirus such as diabetes, cardiovascular disease, kidney disease, and a weakened immune system.”
Please keep away from others who are sick, limit close contact, wash your hands often, and avoid non-essential travel. More Than Lupus will do our best to keep you abreast on any changes regarding lupus, COVID-19, and the hydroxychloroquine debate.
Lupus Foundation of America: https://www.lupus.org/resources/coronavirus-and-lupus
Lupus Research Alliance: https://www.lupusresearch.org/coronavirus-disease-info-for-people-with-lupus/
American College of Rheumatology: https://www.rheumatology.org/announcements
World Health Organization: https://www.who.int/emergencies/diseases/novel-coronavirus-2019
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.
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