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The Lupus Encyclopedia, edition 2: Now Available!

The Lupus Encyclopedia, edition 2: A Comprehensive Guide for Patients and Health Care Providers is now available at all major book stores and from Johns Hopkins University Press.

Click the video below to see me (Donald Thomas, MD) unbox and talk about what is new in the 2nd edition of The Lupus Encyclopedia: Is it worth getting?

New in the 2nd edition of The Lupus Encyclopedia

–     Practical information for healthcare providers (non-lupologist rheumatologists, other doctors, physician assistants, nurse practitioners, and nurses) that will help them improve care for lupus patients

–     Worldwide experts have edited each chapter, improving this edition’s quality

–     The following are just some of the new, updated information in this edition:

A Note to Healthcare Providers

You may find it strange that this book states it is for both patients and healthcare providers. However, I was approached by doctors, physician assistants, and nurse practitioners who told me how much the 1st edition helped them care for their lupus patients better by providing practical, easy-to-find information. Therefore, we expanded on this for the 2nd edition.

            One place to start is to read the last chapter: “The Lupus Secrets.” I give this list of “dos and don’ts” to all my lupus patients. After reading this, you will sense how complex it is in caring for SLE patients. Please consider making copies of this list and giving it to your patients.

            Lupus is an incredibly complicated disease with many nuances regarding the lab test meanings, disease manifestations, and management. This book helps to clarify many of these. Note that the index is purposefully comprehensive. You can look up almost any lab test, disease manifestation (even rare complications), and medication to find them. For example, suppose one of your patients has a high amylase and lipase level. In that case, you will learn it is not uncommon for SLE patients to have elevated levels without having pancreatitis. This sort of information can help prevent misdiagnoses and unnecessary tests.

            The chapters on the disease manifestations (chapters 5 through 18) include the most appropriate testing and which medications may be best. The medication sections are designed to be concise and practical. For example, they discuss what to do with each drug around dosing, surgery, pregnancy, and breast-feeding. However, these sections do not replace sources for reviewing important drug interactions and more complex issues.

            Chapters 38 and 39 include important information about dietary and dental habits (including microbiome effects) that may help improve SLE inflammation. Research builds suggesting that practicing mindfulness is important (chapter 39). In addition to prescribing medications, chapters 38 and 39 include many “wellness” measures. 

            Of course, as we all know, medical information is constantly expanding and improving over time. All medical texts will have incorrect information as new research makes information obsolete. For example, soon after the 1st edition was published, dosing recommendations had changed for hydroxychloroquine. Therefore, please always double-check information in this book with the latest research. Never hesitate to ask someone who specializes in lupus. This includes me. You can easily find my email in the online directory at www.rheumatology.org. I am always open to answering any questions about lupus management.

Contributing Chapter Editors

Every chapter has one or more “chapter editors”: an important strength of this 2nd edition. This method is usually reserved for the highest quality medical textbooks. However, lupus is such a complex disorder that a patient education book (and non-lupologist healthcare provider management book) deserves the same approach.

I, Don Thomas, MD, wrote each chapter. However, I then had each chapter scrutinized by an expert in the field to ensure the highest accuracy and include the latest medical information.

            Every chapter editor donated their valuable time to this endeavor. We all share in common that we want the very best for lupus patients worldwide.

If you know these doctors or are a patient of one of these doctors, please give them a sincere “Thank You!”

List of Contributing Chapter Editors

Jemima Albayda, MD Assistant Professor, Division of Rheumatology, Johns Hopkins University School of Medicine, Director, Musculoskeletal Ultrasound and Injection Clinic, Baltimore, Maryland: Chapter 7.

Divya Angra, MD Dermatology Chief Resident at Howard University Hospital in Washington, DC: Chapter 8.

Alan N. Baer, MD Professor of Medicine, Johns Hopkins University School of Medicine; Director, Jerome L. Greene Sjögren’s Syndrome Clinic, Baltimore, Maryland: Chapter 14.

Sasha Bernatsky, MD, PhD James McGill Professor and Senior Scientist, Centre for Health Outcomes Research and Division of Clinical Epidemiology at the Research Institute, McGill University Health Centre, Montreal, Quebec, Canada; member of the Systemic Lupus International Collaborating Clinics: Chapter 23.

George Bertsias, MD, PhD Associate Professor in Rheumatology-Clinical Immunology, Rheumatology Clinic, University Hospital of Heraklion, University of Crete Medical School: Chapter 32.

Ian Bruce, MD, FRCP Professor Rheumatology,Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, University of Manchester; National Institute for Health Research Senior Investigator at the Centre for Epidemiology, Versus Arthritis, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, Manchester, UK; and past Chair of the Systemic Lupus International Collaborating Clinics: Chapter 1.

Jill Buyon, MD Sir Deryck and Lady Va Maughan Professor of Medicine, New York University Grossman School of Medicine, Director of Rheumatology, Director of the NYU Lupus Center,  New York, New York; member of the Systemic Lupus International Collaborating Clinics: Chapter 41.

Yashaar Chaichian, MD Clinical Assistant Professor, Medicine – Immunology & Rheumatology, Director, Stanford Lupus Clinic, Stanford Health Care, Stanford, California: Chapter 30.

Maria Chou, MD Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland: Chapter 6.

Sharon Christie, Esq Social Security Disability Lawyer, Sharon Christie Law, Hunt Valley, Maryland: Chapter on Working and Dealing with Disability (online).

Angelique N. Collamer, MD, FACP, Lt Col, USAF, MC Associate Professor, Uniformed Services University;  Service Chief, Rheumatology Clinic, Walter Reed National Military Medical Center, Bethesda, Maryland: Chapter 36.

Ashté Collins, MD, FASN Associate Professor of Medicine, Division of Kidney Diseases and Hypertension, Department of Medicine, George Washington School of Medicine and Health Sciences, Washington, DC

Caitlin O. Cruz, MD, FACP Assistant Professor of Medicine, Uniformed Services University, Bethesda, Maryland; Naval Medical Center Portsmouth, Department of Rheumatology; Portsmouth, Virginia: Chapter 17.

Mark M. Cruz, MD, FACP Assistant Professor of Medicine, Uniformed Services University, Bethesda, Maryland; Naval Medical Center Portsmouth, Department of Endocrinology, Portsmouth, Virginia: Chapter 26.

Dana DiRenzo, MD, MHS Instructor of Medicine, Johns Hopkins University School of Medicine; Johns Hopkins Jerome L. Greene Sjögren’s Center, Johns Hopkins Arthritis Center, Johns Hopkins Division of Rheumatology, Baltimore, Maryland: Chapter 39.

Jess D. Edison, MD Associate Professor of Medicine, Department of Medicine, Uniformed Services University of the Health Sciences; Division Director, Rheumatology, Bethesda, Maryland: Chapter 31.

Titilola Falasinnu, PhD Postdoctoral Fellow, Stanford School of Medicine, Stanford, California: Chapter 19.

Andrea Fava, MD Instructor of Medicine, Lupus Center, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland: Chapter 33.

Cheri Frey, MD Assistant Professor, Program Director, Department of Dermatology, Howard University College of Medicine, Washington, DC: Chapter 8.

Neda F. Gould, PhD Assistant Professor, Department of Psychiatry and Behavioral Sciences; Director, Mindfulness Program, Johns Hopkins University School of Medicine, Baltimore, Maryland: Chapter 39

Nishant Gupta, MD Director, Interstitial and Rare Lung Disease Program, Division of Pulmonary, Critical Care and Sleep Medicine, University of Cincinnati, Cincinnati, Ohio: Chapter 10.

Sarthak Gupta, MD Assistant Research Physician, Lupus Clinical Trials Unit, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, Maryland: Chapters 40 and 43.

Sarfaraz Hasni, MD, MSc Director Lupus Clinical Research, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD: Chapter 37.

David Hunt, MD, BChir, PhD Wellcome Trust Senior Clinical Fellow, Neuroinflammation Group Leader, United Kingdom Dementia Research Institute at University of Edinburgh, Edinburgh, UK; Head of Neuroinflammatory Medicine, NHS Lothian, UK: Chapter 13.

Mariana J. Kaplan, MD Chief, Systemic Autoimmunity Branch; Acting Director, Lupus Clinical Trials Unit, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, Maryland: Chapter 21.

Alfred Kim, MD, PhD Assistant Professor of Medicine, Founder and Co-Director, Washington University Lupus Clinic, Washington University School of Medicine, St. Louis, Missouri: Chapter 5.

Deborah Lyu Kim, DO, FACR Arthritis and Pain Associates of Prince George’s County, Clinton, Maryland: Chapter 42.

Rukmini Konatalapalli, MD Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland: Chapter 27.

Fotios Koumpouras, MD Assistant Professor of Medicine, Director of Education and Training Rheumatology, Director Yale Lupus Program, Yale School of Medicine, New Haven, Connecticut: Chapter 12.

Vasileios C. Kyttaris, MD Assistant Professor of Medicine, Harvard Medical School, Director, Rheumatology Training Program, Beth Israel Deaconess Medical Center, Boston, Massachusetts: Chapter 38.

Jerik Leung, MPH Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, Georgia: Chapter 5.

Hector A. Medina, MD Assistant Professor of Medicine, Uniformed Services University of the Health Sciences, Bethesda, Maryland; Chief, Rheumatology, Landstuhl Regional Medical Center, Landstuhl, Germany: Chapter 25.

Timothy Niewold, MD Judith and Stewart Colton Professor of Medicine and Pathology; Director, Colton Center for Autoimmunity, New York University Grossman School of Medicine, New York, New York: Chapter 34.

Julie Nusbaum, MD Assistant Professor, New York University (NYU) Long Island School of Medicine, Department of Medicine, Division of Rheumatology, NYU Langone Health, NYU Langone Hospital – Long Island, NYU Langone Rheumatology, Allergy, and Immunology, Mineola, New York: Chapter 18.

Ginette Okoye, MD, FAAD  Professor & Chair, Department of Dermatology, Howard University College of Medicine, Washington, DC: Chapter 8.

Sarah L. Patterson, MD Assistant Professor, UCSF Department of Medicine, Division of Rheumatology; Affiliated Faculty, UCSF Osher Center for Integrative Medicine: Chapter 38.

Ziv Paz, MD Chief, Department of Rheumatology, Chief Innovation Officer, Galilee Medical Center, Galilee, Israel: Chapter 30.

Darryn Potosky, MD, AGAF Clinical Assistant Professor of Medicine, University of Maryland School of Medicine, Baltimore, Maryland; Capital Digestive Care, Columbia, Maryland: Chapter 15.

Rachel C. Robbins, MD, FACP, MAJ, USA, MC: Assistant Professor, Uniformed Services University;  Associate Program Director, Rheumatology Fellowship, Walter Reed National Military Medical Center, Bethesda, Maryland: Chapter 11.

Neha S. Shah, MD Assistant Professor of Medicine – Immunology & Rheumatology, Program Director, Adult Rheumatology Fellowship, Stanford University School of Medicine, Stanford, California: Chapter 39.

Matthew A. Sherman, MD Division of Rheumatology, Children’s National Hospital, Washington, DC: Chapter 20.

Yevgeniy Sheyn, MD, MPH, FACR Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland: Chapter 24.

Julia F. Simard, ScD Associate Professor, Department of Epidemiology & Population Health, Stanford School of Medicine, Stanford, California: Chapter 19.

Jonathan Solomon, MD Adjunct-Assistant Professor, Cornea, Cataract, and Refractive Surgery, Department of Ophthalmology and Visual Sciences, University of Maryland School of Medicine; Director of Research, Bowie Vision Institute, BowieHealth Campus, Bowie, Maryland; Refractive/Cataract Director, Solomon Eye Physicians & Surgeons, Greenbelt, Maryland: Chapter 16.

Rodger Stitt, MD WellSpan Rheumatology, York, Pennsylvania: Chapter 28.

George Stojan, MD Assistant Professor of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; currently SLE Global Medical Affairs Director, Union Chimique Belge, Brussels, Belgium: Chapter 29.

Sangeeta Sule, MD, PhD Chief, Division of Rheumatology, Children’s National Hospital, Washington, DC: Chapter 20.

Barbara Taylor, CPPM, CRHC Office Manager, Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland: Chapter on Health Insurance (online)

Donald Thomas, MD, FACP, FACR Associate Professor of Clinical Medicine, Uniformed Services University of the Health Sciences, Bethesda, Maryland; Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland

George Tsokos, MD Professor of Medicine, Harvard Medical School; Chief, Division of Rheumatology and Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, Massachusetts: Chapters 3 and 22.

Ian Ward, MD, FACP, FACR Assistant Professor of Medicine, Department of Medicine, Uniformed Service University, Bethesda, MD; Chief, Rheumatology Service, Department of Medicine, Dwight D Eisenhower Army Medical Center: Chapter 35.

Emma Weeding, MD Rheumatology Fellow, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland: Chapter 9.

Arthur Weinstein, MD, FACP, FRCP, MACR Clinical Professor of Medicine (Rheumatology), Loma Linda University, Clinical Professor Emeritus of Medicine (Rheumatology), Georgetown University: Chapter 2.

Sean A. Whelton, MD, FACR, FACP Associate Professor of Medicine, Division of Rheumatology, Allergy, and Immunology; Internal Medicine Residency Program Director and Vice-Chair for Medical Education in the Department of Medicine, Internal Medicine Residency Program, Georgetown University, Medstar Georgetown University Medical Center, Washington, DC: Chapter 4.

14 Comments

  1. Congrats, and I love forward to read through your new book – I have always found good resources through your work.

    I am sure your book may answer my question (as I show it covered in chapter 1), but can you clarify the diagnostic criteria for me? The previous diagnostic criteria, I did not meet the standard for a Lupus diagnosis just yet (so I was classified as UCTD). With the new, if I read the criteria correctly, Joint involvement + Leukopenia + Low c3+c4 = satisfaction for a Lupus diagnostic. Is Leukopenia and low c3/c4 that specific to lupus in the autoimmune world? The reason I ask that, is primarily because joint involvement is universal (I suspect most would agree) – it just seems a lot of weight is put on those other two items.

    I plan to ask for a referral to try and get a capillaroscopy exam – as I suspect that would help narrow down exactly what is happening. Though, I read a study that did show a small % 10-20 of Lupus patients had a SSc/DM pattern – so I guess nothing is full proof. Do you ever use capillaroscopy in your practice?

    Respectfully,
    Gabriel

    • Gabriel:
      The classification criteria are primarily for research. You can have SLE yet not meet criteria. With the new ACR/EULAR criteria the above would satisfy criteria. I agree.
      I do perform capillaroscopy. It is easy using an ophthalmoscope with the 40 magnification setting and using some immersion oil on the nail fold.
      However, it is very nonspecific. We can see similar abnormalities in SLE, scleroderma, and dermatomyositis. It is most helpful if we have an ANA positive patient and are unsure if the patient has a systemic autoimmune disease or not.

      I hope you like the new book. There are many fantastic updates. If you like it please consider putting a review on Amazon.

      Donald Thomas, MD

      • Dr Thomas,

        Thank you for your reply. I just got your book over the weekend and am trucking my way through it (I will put a review up!). You actually have a little part on page 167 that related to my question. I hope you don’t mind me asking something a little further. Related to capillary hemorrhages, is this something that is common among SLE patients that you see? I suspect once an SLE patient is diagnosed, their capillaries are never checked, so this would probably only be identified on pre-lupus / suspected lupus patients.

        Respectfully,
        Gabriel

        • Gabriel: thank you very much for your kind review and I hope you find it helpful… You are correct about when we check capillaroscopy. It is primarily when we are making a diagnosis in a situation where the diagnosis is unclear. Research is currently looking for other uses, but thus far, this is the main use… Dr T

  2. I look forward to reading your book

    • Cherie: I hope you like it. There are many fantastic updates. If you like it please consider putting a review on Amazon.

      Donald Thomas, MD

  3. Hey there! 1st edition has been my go to resource since getting my SLE dx in March’23. I pre-ordered 2nd ed & Amazon sent my copy a wee bit early, and I spent some time looking through it this morning. I really appreciate the expanded info on the newer drugs and therapies and a look at what is in the pipeline! I added some things to my lists of things to try, things to avoid, and things to ask my rheumatologist about.

  4. I very much interested. I have been fighting Lupus for over 30 yrs! I lost my mother due to this disease n my Aunt just received a kidney… she was on dialysis for 19 yrs…

    • Thanks for you comment, Pamela. That is exactly why I wrote this to be even more comprehensive so doctors could use it as well as patients. I sure hope you find it helpful.

      Donald Thomas, MD

  5. I have really enjoyed the updated book, and thank you for continuing to help this community.

    Something in your book that I was hoping you would comment on. You talk about periungual telangiectases AKA Periungual Erthema. Is that something you look with your patients? My nailfolds are noticeably red compared to the rest of my skin on my fingers. I have noticed this in the past, and even asked my rheumatologist about this, but it has always been shrugged off. I have never had a name to put to this until now. Is there any medical significance to this?

    • Bethany: Unfortunately, doctors can be less interested in things that worry patients more (and we need to change this). We often focus on the “bad things” and if those are not occurring (like major organ involvement), then we may appear like we are shrugging something off (as they are not so dangerous). Your rheumatologist may just not realize how their reaction comes off.

      Periungual erythema tends to be more important in helping us diagnose lupus and other systemic autoimmune diseases more so that helping us monitor the disease or to be worried about it. For example, if I have a young woman who has Raynaud’s phenomenon, most of the time, it is “benign” primary Raynaud’s as occurs in 10% of young women. However, if I see periungual erythema on physical exam, it immediately increases my suspicion for the possibility of lupus or related conditions.

      I really have never seen it cause any bad problems in any of my patients other than the cosmetic problems it causes. HOwever, the cosmetic problem should not be under estimated. Skin problems of lupus can be one of the biggest causes of poor quality of life in patients. We all want to look nice and attractive. That would be the primary problem with periungual erythema.

      Also, thanks for the kind words about the 2nd edition of my book. If you find it helpful, I hope you’ll consider leaving a review in Amazon so others may know your experience.

      I hope you do well!

      Donald Thomas, MD


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