How to Succeed after Lupus Diagnosis [New & Veteran Patients]
Everyone with a lupus diagnosis: You are in the right place!
August 2023 Update:
Congratulations for coming to this page in the 1st place. It shows that you want to learn and get better from lupus.
If I were diagnosed with lupus, this is what I would do. This comes from taking care of lupus patients for over 30 years and continuously keeping up on the latest research.
This information is pertinent to systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE). Note, I’ll use these abbreviations throughout. Though it is evident why this would be important for SLE (striving for remission and preventing organ damage), the person with CLE needs to work on getting theirs into remission and prevent further permanent damage to the skin and stop hair loss if it is occurring.
Don’t be overwhelmed: Take this journey with your lupus step by step with the following advice
How to use this page?
If you have a lupus diagnosis, go step by step, starting with the first step. When you have put that step into place in your life, go on to the next step.
Sign up for the email list of www.lupusencyclopedia.com
As I have time, I will put new blog post articles up on the site that gives information on new research in lupus and practical information on living with lupus. You will get emails notifying you about when recent articles are posted.
If you have a copy of “The Lupus Encyclopedia: A comprehensive guide for patients and families”:
Go straight to the Preface at the beginning of the book. It gives similar, practical information as on this page. However, it provides practical information on how to use the book. My book offers more helpful, accurate information than what you find on the internet.
However, one outdated item in the 1st edition of “The Lupus Encyclopedia” is that the dosing for hydroxychloroquine (HCQ, Plaquenil) has changed. We currently use no more than 5 mg/kg of actual body weight. We can also measure HCQ drug levels to help us with proper dosing.
In addition, it does not discuss the newest FDA-approved drugs for lupus: anifrolumab (Saphnelo), voclosporin (Lupkynis), nor does it talk about the new FDA-approved indications for using belimumab (Benlysta). The FDA approved Belimumab for children with lupus as young as 5 years old and for adults with lupus nephritis (kidney inflammation).
The 2nd edition of “The Lupus Encyclopedia” will contain this information and much more. A team of world experts on lupus and myself are currently working on the 2nd edition. I will announce when it will be ready for publication as soon as we near that point. However, this will probably not occur until around October 2022 or later.
If you cannot get a copy of “The Lupus Encyclopedia” ask your local library if they can get a copy or borrow a copy from another library.
What if you do not have a copy of “The Lupus Encyclopedia?”
If you have a lupus diagnosis, go step by step, starting with the first step. When you have put that step into place in your life, go on to the next step.
Start including the “Lupus Secrets” into your lifestyle.
Download and print out the Lupus Secrets and read it over regularly if you have a lupus diagnosis.
Practice all these measures regularly if you have a systemic or cutaneous lupus diagnosis. Do this even if you do not understand why they are important. As you read more about lupus, the purposes behind these recommendations will become clear and help to make these practices part of your lifestyle.
Suppose you would like a quicker reason or explanation. In that case, search for it on www.lupusencyclopedia.com by putting it into the “Search” bar towards the top of the main blog post page. I am currently working on adding blog posts about each “secret.” However, this will take quite a while before I get each up on the website.
Once a habit on the list becomes a natural and constant part of your life, you can put a checkmark next to it. Your goal is to make all of them regular habits and have checkmarks next to all the recommendations.
Download pertinent free handouts (such as ultraviolet light protection, stress management, and sleep hygiene) from the Lupus Secrets page.
If a subject or “secret” is not on this website, go to one of the trusted websites listed under “Education Websites about Lupus.” However, have some caution even when reading these websites. Most of these sites do not have physicians regularly reading over and correcting outdated information.
The “Lupus Secrets” are not secrets. They are practices that help lupus patients live longer better lives.
Most websites are not updated regularly by doctors
For example, even the Johns Hopkins site (Johns Hopkins has one of the world’s best lupus centers) still states that patients should avoid garlic. Today, garlic is an accepted part of the anti-inflammatory diet for lupus patients.
To learn about your medications: For the most accurate and practical drug information, look at a copy of “The Lupus Encyclopedia.” Reading about any lupus medication in the drug chapters 30-37 will give you truly practical information. For example, instead of just a list of “side effects,” it will tell you the “potential side effects,” how often they occur, and what to do about them if any occur. It also gives practical information such as what to do if you miss a dose, what to do around the time of surgery or vaccinations, whether it can truly be used during pregnancy or breastfeeding, and much more.
If you do not have a copy of the book, check out websites such as www.drugs.com. However, information about medications is notoriously inaccurate online. They typically contain information that comes directly from the “package insert.” Package inserts are created using data from the formal clinical trials and rarely include updated information.
The 1st three things I recommend doing:
- Take hydroxychloroquine and never miss doses
- Use sunscreen daily, even if you don’t go outside
- Take vitamin D religiously!
What are the 3 top things to do first after getting a lupus diagnosis?
If I had to pick the three most important things to do first for those with a lupus diagnosis, it would be:
- Take hydroxychloroquine (or chloroquine)
- Practice ultraviolet light protection
- Take vitamin D regularly (if your level is lower than 40 ng/mL)
These are the safest treatments for lupus. Read about each of these (look them up in the index of “The Lupus Encyclopedia”) or on a trusted website so that you can understand their importance. Get into the habit of never missing any doses of medications. This is one of the best habits you can get into right away.
What if my doctor did not prescribe hydroxychloroquine, sunscreen or vitamin D?
If your doctor has not prescribed an anti-malarial (hydroxychloroquine or chloroquine) and vitamin D (if your level is low), ask them to do so. This is the standard of medical care worldwide. Unfortunately, not all doctors treating lupus patients prescribe these important therapies.
Your lupus treatment should be a “team approach” with your doctor. If it is not so, consider getting a second opinion if this is a viable option for you.
Practicing “The Lupus Secrets” should be a lifelong practice
NOTE: Learn to practice “The Lupus Secrets” your entire life. If you do this, I guarantee you will live longer and better with your lupus diagnosis than if you did not practice them.
There are few promises we can make in practicing medicine. However, this is one I am confident about.
Get a copy of your records, notes, labs, x-rays, and other results
- Especially get the records that contain how your lupus diagnosis was made. Learn exactly how your doctors diagnosed your lupus and how you are doing. You should keep these records yourself just in case you need them for future reference or if you need to give them to other doctors. You never know if your insurance may change or if you’ll need to move and have to change rheumatologists.
- Antinuclear antibody (one of the most important diagnostic tests) becomes negative in around 20% of SLE patients after successful treatment. This can lead to the diagnosis of SLE being questioned by new doctors. But, if you have your original labs available, this mistake can be prevented.
- Get a copy of your labs, notes and test results each visit. You may have to pay a fee to have your records copied. Doing this can create a lot of work for the staff at your doctor’s office, but the information provided can be invaluable.
- The best way to get copies is to ask for a copy of the most recent notes, lab results, and other test results at each visit. Your doctor’s office will usually not charge you anything if you ask for a small amount at a time like this.
Especially read the subjects and chapters below. Use the internet if you do not have my book.
- Look up every term, lab, word, or diagnosis in your notes in the index at the end of “The Lupus Encyclopedia.” You can also search for them on this website. Or go to one of the trusted websites listed.
- The book’s index will direct you to the parts of the book that discuss subjects specific to your lupus. I have tried to be as complete as possible, so most lupus problems are in this book. (Note that I will include rare complications in the 2nd edition).
- Discuss with your doctor any diagnoses or lab results not included in my book.
- Look at your lab results. Look up each abnormal lab in the index to find specific discussions. Chapter 4 discusses important lupus labs and what they mean.
- Learn to collect a proper urine sample. Make sure to read the section on how to collect a urine specimen accurately. This is one of the most important tests we need, and doing it properly makes a big difference in accuracy. This exhaustive chapter is primarily used as a reference tool to help you understand what lab results may or may not mean.
Prepare for lupus flares
When someone with lupus is doing well, then they unexpectedly have a worsening of or recurrence of their lupus problems (such as joint pains, fatigue, fever, rash, hair loss, pleurisy, etc), this is called a “lupus flare.” Prepare for the possibility of a flare ahead of time. Don’t wait until one occurs.
A good way to do this is to download and print out the “Lupus Flare Plan” that I developed along with The Lupus Foundation of America.
Print out your Lupus Flare Plan. Fill out as much as you can, then take it to your doctor to help fill out the rest.
What I recommend to my patients varies from patient to patient. Common actions I have them take include the following:
- Contact me immediately on the patient portal and explain what is going on
- If you have severe problems, like shortness of breath, chest pain, bleeding, loss of sensation, sudden weakness of the face/arms/legs, difficulty thinking, or trouble speaking, go immediately to an emergency room.
- If a mild flare resembles previous flares, contact my medical assistant to come in immediately for a shot of cortisone in the buttock, similar to the Johns Hopkins FLOAT study. This is quick and easy. While you are in the office, make sure to give me blood and urine samples. I have permanent “future labs” in the computer under your name that assessess how your lupus is doing. Send me a patient portal message a week later asking how your labs look.
- If you are flaring and you have done the above and/or feel like I must see you, send me a patient portal message.
- Our office has many doctors, nurse practitioners, and physician assistants. If I am absent (such as on vacation), ask to see any of them ASAP. We almost always have open slots on the schedule. I keep very detailed notes about your lupus. Any of the providers can easily tell from my notes what has gone on with your lupus and know how to help you.
Read the following subjects (or book chapters)
The following subjects and book chapters give essential information that makes it easier to understand what lupus is and why it is important to do many things that your doctor recommends that you do. I’ll list them in the order I consider most helpful and practical:
Anti-malarial Drugs (Chapter 30)
Everyone with SLE (and most people with discoid lupus) should be taking anti-malarial medications, such as hydroxychloroquine (Plaquenil) and chloroquine (as long as they can). It also covers the important eye tests that should be done regularly while taking these drugs.
Non-Drug Treatments (Chapter 38)
Treating lupus is not just about taking pills. Lifestyle changes such as ultraviolet light protection, eating a diet that may lower inflammation, exercising, getting enough sleep, and learning to reduce stress play a role in helping those with lupus. We also discuss the latest regarding medical marijuana and CBD. The “Lupus Secrets” includes many of these recommendations as well.
Common symptoms and how to navigate your doctor’s office (Chapter 40)
This chapter covers subjects that are often missing in books aimed at specific diseases. Knowing how to navigate your doctor’s office and communicating effectively with your doctor and their staff can go a long way in your doing well. This chapter takes some of the mystery out of how to effectively deal with your doctor.
It also discusses important symptoms you may encounter and how to deal with them. For example, what should you do if you get chest pain, shortness of breath, or fever, and what could they mean in someone with lupus?
Heart attacks, strokes, and blood clots (Chapter 21)
These are some of the most common causes of death in lupus. Knowing what you can do to decrease your risk of developing these is essential to living longer.
Most deadly infections in lupus can be prevented
Infections (Chapter 22 )
Many people overlook this important topic. Infections are one of the most common causes of death in lupus. However, most are preventable. Learn how to prevent them in the first place.
If an infection occurs, this chapter tells you what to look out for and what measures you need to take to have it treated. Learning and practicing everything recommended in chapters 21 and 22 takes a lot of work but is guaranteed to increase your lifespan compared to if you did not do them.
If you do not have the book, read on the internet about pneumonia, influenza (the flu), human papillomavirus, shingles, and COVID-19. Ensure to read about the vaccines that help prevent these common and dangerous infections.
Cancer (Chapter 23)
Some cancers occur more commonly in lupus, and there are things you can do to prevent them. If you do not have the book, read about what tests you should regularly get to identify and prevent cancers. Important cancers to learn to prevent include cancer of the lungs, skin, cervix, breasts, colon, and prostate.
Osteoporosis (Chapter 24)
Osteoporosis (weak, fragile bones) occurs more commonly in lupus. This chapter contains practical prevention advice and how to treat it if it does happen. Do not skip this chapter. There are very good reasons that doctors call osteoporosis a “silent killer.” However, it is possible to prevent broken bones from this problem.
Steroids (Chapters 26 and 31)
If you take prednisone, methylprednisolone, or other steroids, make sure to learn about them. These chapters give detailed information about steroids and practical advice on how to prevent their side effects.
General treatment of lupus (Chapter 29)
Osteoporosis (weak, fragile bones) occurs more commonly in lupus. This chapter contains practical prevention advice and how to treat it if it does happen. Do not skip this chapter. There are very good reasons that doctors call osteoporosis a “silent killer.” However, it is possible to prevent broken bones from this problem.
Complementary and Integrative Medicine (Chapters 38 and 39)
Since the 1st edition, more research points towards practices such as mindfulness, breathing exercises, yoga, tai chi, and ingesting substances such as ginger and turmeric (curcumin) as possibly helping inflammatory disorders such as lupus. The second edition of the book will go into detail about the latest on these important subjects.
Sjögren’s Disease (Chapter 14)
If you have noticed dry mouth, dry eyes, dry skin, or have dry vaginal problems, read about Sjögren’s. Many people with lupus have no idea that these problems may be due to Sjögren’s disease (an autoimmune disorder commonly occurring along with lupus). It is important to address these problems to prevent avoidable medical issues, feel better, and have a better quality of life.
What Lupus is and How it is Diagnosed (Chapter 1)
This information is especially important because it makes it easier for you to communicate to health professionals and doctors about exactly what type of lupus you have and what problems it causes you. It also goes into detail on how lupus is diagnosed. An easy-to-understand way it is diagnosed is the 1997 ACR criteria.
What Causes Lupus (Chapter 3)
This includes an exhaustive list of labs used in lupus. Do not read this chapter from start to finish. Instead, read the first part of the chapter through the section on collecting a urine sample. Everyone with a systemic lupus diagnosis needs to give regular urine samples. Then refer to specific sections (using the index) regarding any abnormal lab test results you may get so that you can understand them.
Be proactive and understand what your lab test results mean
Labs (Chapter 4)
This includes an exhaustive list of labs used in lupus. Do not read this chapter from start to finish. Instead, read the first part of the chapter through the section on collecting a urine sample. Everyone with a systemic lupus diagnosis needs to give regular urine samples. Then refer to specific sections (using the index) regarding any abnormal lab test results you may get so that you can understand them.
Skim chapters that sound interesting to you; read those that pertain to your situation and interest
There is a lot of information, facts, and related healthcare concerns in this book. Whenever a new problem occurs with your lupus or a new test becomes abnormal, look it up in the index to investigate it.
On this website, you can search for a topic in the “Search” bar that appears towards the top of the main blog page.
Consult the Patient Resources at www.lupusencyclopedia.com
Many helpful resources are available to help people who have lupus. This includes patient support groups, financial assistance, and other books on lupus.
Follow me on Twitter @lupuscyclopedia to find out the latest news about lupus
I post important information regularly on Twitter. Medical knowledge and lupus treatments are constantly changing. I will keep you updated on this website as well.
Join a Lupus Patient Advocacy Group if You Have a Lupus Diagnosis
Joining a lupus patient advocacy group provide many advantages. They can help you keep up with the latest lupus research, learn if revolutionary treatments are coming, find out what research is being done, connect with others who have lupus, and learn how to better manage the disease. Consider volunteering with lupus-related events. Raising money for research and non-profit organizations is an important ongoing task, and you can help with this important mission. Depending upon your motivation and how much time you want to commit, you can even help advocate for lupus research and better healthcare with these groups by interacting with your politicians.
The Patient Resources page of this website lists many important groups, such as The Lupus Foundation of America, Kaleidoscope Fighting Lupus, Lupus LA, Lupus Research Alliance, Lupus Europe, Lupus UK, Lupus Canada, British Columbia Lupus Society, Lupus Australia, and Lupus Western Australia. This is only a small sample. Make sure to read over the entire list on the Patient Resources page and choose those that best suit you and your location. If you do not have a local group, joining organizations far from you is easy. The internet connects all of us. Many of these organizations hold virtual conferences and support groups over the internet these days.
Thank you for visiting www.lupusencyclopedia.com, and I wish you the best in life and health