Lupus is a chronic autoimmune disease that occurs when your body's immune system attacks your tissues and organs. Inflammation caused by lupus can affect any part of your body. Lupus is often difficult to diagnose because the symptoms are “invisible” with no outward proof. Symptoms may mimic other ailments, which puts further stress on patients when they’re misdiagnosed.
May is Lupus Awareness Month. Last year, we interviewed Senior Medical Writer Sudipta Chakraborty about her experience living with lupus. This year’s Lupus Month is unlike any other, given we’re in the midst of a global coronavirus (COVID-19) pandemic. The pandemic has caused a shortage of hydroxychloroquine, a drug commonly used to treat lupus, due to its potential for being a COVID-19 treatment.
We checked in with Sudipta to see how she’s managing her diagnosis and coping with the effects of the COVID-19 crisis as a lupus patient.
Looking back at your piece from last year, it gives such great insight into the disease and how it affects you, your family, and your friends. How have things changed since 2019?
When you interviewed me last year, I was recently diagnosed, and I had just started treatment on hydroxychloroquine. I still wasn’t sure if the treatment was going to help me or what kind of side effects I would have. I was never on a long-term treatment for anything in the past. I'm definitely one of those people who tends to be wary of things like side effects, probably even more so now after working in the pharma space and writing about them every day.
Since then, the treatment definitely helped. It took away many of my intense flare-ups that caused me to start the treatment to begin with. I’m grateful for it.
I’ve had some more continuous checkups that I wasn't really used to doing in the past. I have to get my vision checked and do these very specific vision tests that aren’t typically part of anyone's annual eye exam—they’re a separate checkup. That’s because one of the rare but serious side effects for hydroxychloroquine is that it can mess with your vision.
Eye exams are just one thing impacted by COVID-19. I’ve only been able to get my eyes checked once since I started the treatment because my eye doctor is only doing emergency checkups. I don't have any actual vision issues, but it is something that I have to keep track of.
My flare-ups can still occur occasionally under certain periods of stress. Obviously, COVID-19 has been pretty stressful, between my husband and I balancing our work schedules and childcare. It has been difficult for the past 2 months trying to make both of those things work in our home.
Because of COVID-19, I was initially unable to take my full dose. Back in March, my rheumatologist called all of her patients to let them know that there was a national backorder on the drug. This was because they were using it to treat more critically ill COVID-19 patients once it was discovered that it may help them. I was forced to go down to half my dose. That, combined with the constant high stress that we've all been experiencing, has caused some of my symptoms to come back.
However, my flare-ups are not as bad right now, even on half the dose, so the treatment is definitely helping me. Even though it typically takes a long time to get diagnosed for an autoimmune disease, I’m grateful that there are treatments that can help.
Just as an update, as of last week (week of April 27) I was able to get a full prescription. I’m still unable to get a 90-day refill, which is what doctors are recommending right now in case a backorder happens again, but I’m back to a full dose. I haven’t seen the benefits yet of going back to my full dose, but it’s manageable and tolerable—thankfully much better than before I started treatment.
The Lupus Foundation of America’s theme this year is to “make lupus visible.” Many symptoms of lupus can be invisible. Tell us a little about your experience with that sentiment and how we can all do better to make lupus more transparent.
Let’s start by talking about what the “invisible aspects” of lupus are. This is one of the issues that many patients face who are not yet diagnosed or could be.
I still have a mild level of disease. When I started this treatment, my doctor joked and called it “the lupus vitamin.” I'm committed to taking it long-term because it can help prevent my lupus from getting worse—so much so that my original symptoms are essentially all invisible. If you saw me on the street, you wouldn’t be able to look at me and tell that I have lupus.
The symptoms that are challenging and continue to be challenging are extreme fatigue, joint stiffness and swelling, and muscle aches. Those are the symptoms that flare up the most. Again, they're not obvious symptoms, like rheumatoid arthritis (RA). My mother has RA— in patients with advanced RA, anyone could look at their swollen hands and know something’s wrong. You can't necessarily see that with me. I can feel it, my doctor can feel it during an exam, but you can’t outwardly see it. Those are the main invisible symptoms.
I've actually been struggling with another invisible symptom right now, probably from all the current stress. Many lupus patients have what's called “brain fog,” which is an inability to concentrate. The problem with this symptom is that it's hard for doctors to decipher whether it’s even attributable to the disease or not, since anyone can have it.
One aspect of lupus that is visible, especially for more severe forms, is a “butterfly rash” that spreads across the cheeks and over the nose. That's something people commonly associate with lupus, but it doesn’t happen to everyone. Back when I saw a primary physician before my diagnosis, she told me that since I didn’t have the rash, lupus was unlikely. Of course, I did have it—I just didn't have that outward symptom.
So, these “invisible symptoms” can also impact diagnoses. Doctors who aren't as specialized in this area may not realize that common lupus symptoms may not apply to everyone, especially when you can’t outwardly see them.
In terms of awareness, I think hearing people’s stories helps us understand it better. COVID-19 absolutely brought it to a lot of people's attention. My own friends obviously have my best interests at heart, but it wasn't until there was more media attention around hydroxychloroquine that people were suddenly calling me, texting me, and talking about the treatments.
Especially during times like these, it's important to emphasize that this condition affects so many people. It could be your neighbor or a friend who seems perfectly healthy in your eyes. It’s a lifelong situation that people need to think about.
Issues have arisen around the access to hydroxychloroquine due to the COVID-19 pandemic. How has it affected you, your family, and your friends? Are you worried about the future?
I probably gave my rheumatologist a little too much credit. I didn’t actually get a call from my doctor’s office—I called in myself.
I was up for my next refill around the same time that the virus first received attention in the press. One or two days after I learned that hydroxychloroquine was being considered to treat COVID-19, I immediately reached out to my doctor’s office to ask about it. That's when my rheumatologist told me there was a national backorder. She said, “I've never had to say this before, but unfortunately, you should go down to half a dose.” She was essentially asking me to ration my own medication.
It was shocking to me that as a patient, I had to advocate for myself and find out what I could do. It just goes to show you how often patients have to stand up for themselves. Since then, I’m still a little on edge about what my next prescription will look like.
In the back of my mind, I still worry. That was the first time I've ever been told to ration my own medication. To make matters worse, I haven’t seen much lupus advocacy outside of major advocacy groups like the Lupus Foundation of America. They try to reach out to policy makers and whoever they can to make sure that access to lupus patients is untouched. Unfortunately, I wouldn't expect it really to be any other way. I’m grateful for those types of foundations, but from my personal experience, it seemed like I was on my own advocate.
How have patient advocacy groups managed the hydroxychloroquine news and help to support and provide info for lupus patients? Are you interacting with other lupus patients?
I haven't necessarily reached out to anyone since the pandemic started, but I did have an uplifting experience recently.
I had a friend from elementary school who had come back into my life. I went to elementary, middle, and high school with her and had no idea that the entire time she had lupus since age 10. She was on the same drug that I am now. We’ve reconnected and I've asked her questions about side effects and what to expect. It has definitely rekindled our friendship because we’ve bonded over something we're both dealing with. She’s honestly the only other person I've reached out to who has lupus.
I would say, however, that I’ve also bonded a bit more with my own mother. Her RA is not the same disease, but it’s within the same category of autoimmune diseases. She's been fighting hers for well over a decade now. Since her situation is similar to mine, that's honestly why I think I was able to catch mine much earlier than hers. I was able to see things that could happen, things that led to her diagnosis that weren’t caught early enough.
In terms of advocacy groups, the only one that I’ve paid attention to is the Lupus Foundation. Through social media, they’ve been trying to raise awareness for patients to get access to treatment and maintain their access. They've put out great stuff like templated letters that people can copy and paste, fill out, and send to their policy makers. But with COVID-19 patient access, it's primarily been through the Lupus Foundation’s social media posts that I knew there was a group out there trying to do things for patients and advocating for them to have access.
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