Book Review: The Lupus Encyclopedia

The subtitle of Dr. Donald Thomas’ newly released book, The Lupus Encyclopedia, is “A Comprehensive Guide for Patients and Families”–and indeed it is. As someone who is insatiably curious, a lover of random bits of info (I’m the gal you want on your Pub Quiz team), it’s been a frustrating process to glean useful, reliable information on lupus since I was diagnosed in 2009. So when I learned of Dr. Thomas’s forthcoming book, I hoped for the best but expected some shortcomings.

Well, I’m thrilled to write that The Lupus Encyclopedia is an excellent resource–not only for people with lupus, but their caretakers, their family and friends. To say it is thorough is a gross understatement. The book discusses in detail each system that can be affected by lupus, complications, treatment, financial issues and more.

Because everyone’s experience with lupus is different, the book is wide-ranging and addresses everything. So while the book’s roughly 805 pages may seem daunting, it’s very likely that you will be able to skip entire chapters and focus on the ones that pertain to you. With that said, I’ve outlined a few parts that I found particularly useful to me.

The in-depth description of symptoms is hugely useful. I’ve experienced many symptoms that were ignored by doctors or dismissed as not lupus related; Dr. T’s book not only validates my suspicion that these symptoms were indeed related but also gave me some insight as to which symptoms may not in fact be lupus-related at all. And perhaps more importantly, his recommendations will help me seek medical attention when I need it. One point, specifically, that I found helpful was Dr. T’s discussion of fever and his recommendation that all lupus sufferers seek medical attention immediately if they have a fever–not because of a possible lupus flare but because of the high potential for infection.

Another aspect of the book that I found useful is the in-depth explanation of how UV rays affect your body when you have lupus. Everyone knows the importance of minimizing your exposure to UV, but I’m still pretty spotty about putting on sunscreen and wearing protective clothing. However, understanding exactly how UV rays affect my body and trigger symptoms has, for whatever reason, finally made me resolve to wear sunscreen every time I go outside and to try to avoid prolonged sunlight exposure more than I have been.

One last section I want to bring to your attention–although, I found many other parts useful–is on the history of treatment. While this section doesn’t give me the immediate benefits like, say, a better understanding of UV, knowing the darkly ridiculous treatment history of lupus and, better still, understanding how current treatment (like Plaquenil) works, satisfies that geeky, curious side of me. I’ve often been asked how an anti-malarial drug works to treat lupus, and now… I still can’t answer that. Ha! But I can direct them to this book.

There is one point that Dr. T discusses that I disagree with, however. He explores the pros and cons of HMOs versus PPOs, and ultimately, he recommends that people with lupus choose a PPO, if they have a choice. As someone who has had health insurance with both an HMO and a PPO, I disagree. Dr. T explains his reasoning thusly:

“One downside [to using an HMO] is that it can be a hardship when someone must see a specialist… plus having to get a referral for each visit” (750).

From personal experience, I can attest to the first part of Dr. T’s claim. While my primary care provider immediately (hassle-free) referred me to a rheumatologist, and my rheumy provided excellent care, he routinely refused to refer me to other specialists when I experienced symptoms that affected my eyes or my skin, instead dismissing those symptoms as unrelated to lupus. Despite these negative experiences, I had no trouble at all getting a referral to an eye doctor for annual eye exams (for Plaquenil). And once an ongoing need for a specialist was established (with the rheumatologist and annually with the eye doctor), I was never required to get new referrals for each visit.

PPOs, Dr. T argues, avoid the issue altogether, as most PPOs allow patients to self-refer. While this is true, I’ve discovered that PPOs are also prohibitively expensive. My PPO offers a small selection of specialists, and if you want to see someone else–you have to pay more. A lot more. I’ve spent thousands of dollars just in 2014 alone on my labs and doctors visits. My insurance gives me a choice of two rheumatologists–both of whom work together in the same practice. For various reasons, I determined that I was not receiving quality care from my doctor, but I didn’t feel comfortable seeing his partner. This means I’m outside the PPO’s circle of trust, and I’m being financially penalized for seeking better care. For all the stress that my financial situation has put me through and the dearth of covered rheumies I’ve been offered, I’ll take the inconvenience of referrals any day.

Insurance arguments aside, I highly recommend The Lupus Encyclopedia. It’s an amazing source of information, and I feel empowered by the fact that I have a reliable resource to turn to whenever I need it. No matter what your symptoms are or the level of severity, you owe it to yourself to get this book.

Photo credit: Wired

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