A Cautionary Tale About Hydroxychloroquine’s Side Effects

It seems that one can’t turn on the news, scroll through Twitter, or read Facebook these days without seeing a reference to  the antimalarial drug hydroxychloroquine and what it might do for patients with COVID-19. So, it’s important for me to share the story of how hydroxychloroquine changed my life.

About four years ago, I was prescribed hydroxychloroquine as a first line of treatment for my psoriatic arthritis. In addition to malaria, hydroxychloroquine is used to treat a range of autoimmune diseases such as psoriatic arthritis, lupus, and rheumatoid arthritis. It’s the first line of therapy because it’s an old drug and it’s cheap.

When I was prescribed hydroxychloroquine, my diagnosis pathway to Lambert-Eaton myasthenic syndrome (LEMS) had stalled. I had been struggling for years with ongoing pain and what felt like constant sickness when in the fall of 2015, my fingers swelled up like sausages, landing me at the office of my new rheumatologist. The telltale dactylitis of psoriatic arthritis led me to a script for hydroxychloroquine.

I became sicker soon after starting it. My neck felt like it could barely hold my head up. My legs felt heavy. I felt weighted down, like I had a lead X-ray vest on. And I had no idea why these things were happening to me.

I certainly didn’t correlate them with my new med. There had been a lot of stress going on in my life at the time, including an unexpected death in the family, so I assumed that my ongoing and progressive sickness was stress-related.

When the heaviness turned to numbness, spread to my face, and started to affect my swallowing, I thought, “These are some weird side effects!” I finally called my rheumatologist’s office and was told to discontinue the hydroxychloroquine and make an appointment with a neurologist.

My new neurologist knew something was up that was affecting my nerves simply by how I described the numbness in my trigeminal nerve. This was the start of my LEMS diagnosis after 10 years of coming up empty-handed while looking for multiple sclerosis. I often have said that being prescribed hydroxychloroquine was actually a gift because its side effects led to my rare disease diagnosis.

However, what if I had been put on hydroxychloroquine for a reason other than psoriatic arthritis, such as COVID-19? What if my doctor didn’t know that I had a myasthenic condition because I hadn’t been diagnosed yet? That could have been a potentially fatal disaster.

Several people in the public eye who have come down with COVID-19 have been treated with hydroxychloroquine or chloroquine, a similar antimalarial drug. Singer Rita Wilson, who was treated with chloroquine after she and her husband, Tom Hanks, were hospitalized with COVID-19, described its side effects to The Guardian: “Extreme nausea, vertigo, my muscles felt like wet noodles, so I couldn’t really stand,” she said.

Various medical journals have reported an apparent correlation between myasthenia and treatment with hydroxychloroquine or chloroquine in some people. One case involved a patient on chloroquine who suddenly developed myasthenic syndrome but had no autoantibodies. This could mean that nerve and muscle junction messaging is being interrupted with the drug, causing weakness, and for some, an inability to stand.

What does this mean for patients like me who have a myasthenic disease? Even in the best circumstances, some meds exacerbate our symptoms, which can lead to a myasthenic breathing crisis.

Another medication being touted as a possible treatment for COVID-19 is the antibiotic azithromycin. But azithromycin also is on the cautionary list of meds for people with myasthenia. Having our diaphragm muscles stop working in addition to COVID-19 pneumonia is a lose-lose situation.

Everyone, especially those of us with chronic illnesses, wants this pandemic to be behind us. It would be amazing if an old, generic antimalarial drug were the answer to the worst pandemic the world has seen since the Spanish Flu. However, according to The Wall Street Journal, patients currently taking hydroxychloroquine for other illnesses still are contracting COVID-19.

And by touting hydroxychloroquine as a miracle drug for COVID-19, we’re taking it out of the hands of patients with other illnesses who need it to live.

What the world needs is for scientists and the pharmaceutical industry to work diligently to find a treatment and a vaccine for COVID-19 so that we can safely get back to living our best lives among friends and family. We all deserve a proven treatment with known risk factors before it is announced as the solution to a pandemic.

Until then, I’ll continue to be the “Queen of my Quarantine.”

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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.