What I Wish I Knew Before Starting Lupus Treatments

I was officially diagnosed with Lupus in May of 2021. I say officially because my symptoms started long before that, I just didn’t know it. Lupus is a chronic autoimmune disease that can cause inflammation and pain in different parts of the body. Your immune system is meant to help your body fight infection. But when you have an autoimmune condition like lupus, your immune system attacks healthy tissue like your skin, joints, muscles, and internal organs instead. There is currently no cure for lupus. The goal of treatment is to manage symptoms and decrease organ involvement and disease progression.¹

My lupus symptoms began about two years before my diagnosis. In 2019, some routine bloodwork came back showing a low white blood cell count. White blood cells help the body fight infection. A low white blood cell count is a common symptom of immune disorders, and can make it difficult for your body to fight infection.² I was sent to a hematologist to follow up on my blood test results and was told my abnormal results were nothing to worry about.

I began experiencing more odd symptoms early in 2021. I was unnaturally tired after not doing very much, my hair was shedding in large amounts, and the muscles in my legs and arms became particularly achy after spending time in the sun. I reported these symptoms to my doctor, who ordered some lab work. The tests seemed to indicate an autoimmune issue, so my doctor sent me to a rheumatologist.

The next part was surprisingly easy. After listening to me explain my symptoms and reviewing my labs, the rheumatologist explained I likely have lupus. Based on my experience navigating multiple rare conditions, I thought getting a lupus diagnosis in three years was pretty great! Little did I know that getting my diagnosis was going to be the easier part of my lupus journey. I wish I knew what challenges lay ahead; how hard it would be to find an effective treatment that my body tolerated.

The first medication my doctor prescribed was an antimalarial medication. Antimalarials are typically used to treat malaria, a disease caused by a parasite, but they can also help manage lupus. Antimalarials work to reduce pain and inflammation, prevent lupus flares, and lower the dosage needed for other potentially harmful lupus medications like steroids.³ My rheumatologist referred to this medication as “the Tylenol of rheumatology,” and advised that I avoid reading the very long list of side effects it came with.

I didn’t follow that advice and learned that one of the scarier side effects of this particular antimalarial was the potential for permanent eye damage. The risk felt worth it to me, in hopes that this medication would be enough to calm down my overactive immune system for good. Antimalarials take some time to build up in your system, so it can take three to six months to know if they are truly working.

Within one week of starting the medication, I knew my body did not agree with it. I began experiencing very intense anxiety, insomnia, and loss of appetite. My doctor and I decided to decrease my dose to a fraction of what I was taking, and increase it slowly each week to give my body time to adjust. Thankfully, this method worked and I was able to tolerate the full dosage. I thought, “Great! We’re on auto-pilot from here!” But, alas, I was wrong.

After four months on the antimalarial, I was back to about 75% of my former self. My energy was better. I didn’t need naps to make it through the work day and was able to exercise again. Although it seemed like I was making progress, I began experiencing more distinct flares: a heightening of my lupus symptoms that would appear out of nowhere. The strongest dose of ibuprofen barely touched my muscle pain, and sleeping ten hours straight didn’t relieve my fatigue.

I typically tried to ride out the symptoms for five days or so before reaching out to my rheumatologist. Each time, my doctor would prescribe a short course of steroids, and everything would be better in about a week.

The steroids were miraculously good at calming down the inflammation in my body, so we decided I’d stay on them along with the antimalarial. The steroids were a game-changer for me. I found myself having longer stretches of “good days” and fewer flares. But it wasn’t all good. The steroids come with a host of side effects, but the one that affected me most was weight gain. In just four months, I gained 12lbs. None of my clothes fit, and my appetite was insatiable. I told myself it was worth it to feel better.

I learned that steroids aren’t the safest medication to be on long-term since they can cause a number of issues, including high blood pressure, eye conditions like glaucoma and cataracts, and osteoporosis.⁴ My doctor suggested adding another, less harmful medication to my regimen so that I didn’t have to be on steroids for long.

The next drug I tried was monoclonal antibodies, which help fight infection. However, these too have side effects, namely immunosuppression, headaches, and nausea.⁵

Unlike, steroids and antimalarials, I can’t just take a pill. I need to go to an infusion center once a month for two hours. If monoclonal antibodies work, I could be on this drug for the rest of my life. If they don’t, then more trial and error.

Treating lupus often feels like being forced to choose the lesser of two evils: flare-ups or side effects. Knowing what I know now, I would have gone into this journey with a little more patience and a lot more realistic expectations. Now I know that living with a disease like lupus brings a lot of uncertainty that requires the utmost flexibility, acceptance, and grace.

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