"Lupus Secrets": Lupus information you need to know
We were so incredibly impressed by the “Lupus Secrets” that Dr. Donald Thomas shared with Molly’s Fund Fighting Lupus, our patients and caregivers at our Lupus and Autoimmune Conditions Patient Forum that we just knew we needed to share this important lupus information with all of the populations that we serve. This is one blog that you will absolutely not want to miss!
Who is Dr. Thomas?
Dr. Donald Thomas is a board-certified Rheumatologist at the Arthritis and Pain Associates of P.G. County in Maryland with a particular interest in Systemic Lupus Erythematosus (SLE) and treats all forms of arthritis, systemic autoimmune diseases and metabolic bone diseases. He is also the author of The Lupus Encyclopedia.
We are also pleased to be sharing the video of his ”Lupus Secrets” webinar with Molly’s Fund, videos from his engaging and enthusiastic live presentation for the Molly’s Fund Fighting Lupus Patient Forum, as well as the full listing of the 28 “Lupus Secrets”.
Please watch them to learn at least a few things you may not have already known! All of us at Molly’s Fund learned several new tips, including new medication indication information for Plaquenil. Be your own best advocate and stay educated to live your best life with lupus.
What did others think of the webinar and is it worth watching?
Below are just a few comments from people who attended the webinar. Please watch it and let us know your thoughts in the comments section at the bottom of this blog:
“Thank you so much for the very informational webinar! I immediately got on Amazon and pre-ordered the book The Lupus Encyclopedia by Dr. Donald E. Thomas Jr. I can’t wait to get my hands on it. I was in awe as he explained every topic.
I was diagnosed with Fibro almost 20 years ago and have struggled with pain and complications. Later I was diagnosed with neuropathy unrelated to diabetes and then eventually diabetes years later. My Mentally Challenged 31 year old daughter was recently diagnosed with SLE; three weeks later my 34 year old son was diagnosed with Discoid Lupus. Your web site has been a blessing to me. I thought I would just lose my mind until I found your website. Thank you for being there!” ~Heidi
“Thank you very much for the very informative webinar. I feel empowered.” ~Monica
“I consider myself very educated about lupus and related health issues. I read journals and access both patient- and doctor-oriented materials, stopping frequently to look up terms, etc. And Dr. Petri was my rheumy for a while, and she throws a lot of info at her patients. Anyway, sometimes, lupus info. sessions are so basic & there’s nothing new for me. BUT I learned several new things during the webinar. Some were from very recent research and some were just explained super well. And Dr. T. answered a couple of questions of mine very thoroughly and accessibly. He is an excellent resource for lupus patients and their caregivers.” ~Beth L
“This was such a helpful webinar. I am so grateful to Dr. Thomas and Molly’s Fund. I feel so much more in control of my disease and my conversations with my doctor with the Lupus Secrets. Thank you! ~Anonymous
I appreciated Dr. Thomas’s talk, it was very informative. I really enjoyed his style too, he was very clear and approachable. ~Anonymous
I learned some new information about otc fish oil capsules and the need for additional protection from uv light even indoors.” ~Michele
Dr Thomas is an excellent educator and has a gift for presenting relevant information in an easy to understand manner. We are lucky that he is so generous to share all this information through social media, I have already learned so very much from him and am looking forward to his book. ~Rosemary
The “Lupus Secrets” Webinar
Video Recording of the “Lupus Secrets” Presentation
To watch the complete “Lupus Secrets” presentation from Dr. Thomas when he came to speak for us in Portland, OR, you can find them in three parts below. They contain a great deal of valuable lupus information, and we hope you enjoy them!
If you enjoyed this and found it useful, please comment below and share with friends and family.
The 28 Lupus “Secrets” by Dr. Donald Thomas
Here we provide a condensed version in text of the 28 secrets, and you can find the accompanying handout with even more details and lupus information by clicking here.
Avoid sulfa antibiotics (add to your allergy list):
Trimethaprim-sulfamethosaxole (Bactrim, Septra)
Keep a personal record of:
Lab results, biopsy results, x-rays, doctor notes. Especially keep those that established your diagnosis of lupus.
Take aspirin (81 mg a day) if you are at an increased risk for heart attacks, strokes, blood clots
High blood pressure, high cholesterol, diabetes, have a strong family history for heart attacks, or if you are positive for antiphospholipid antibodies.
Do you ever feel down in the dumps, have problems with memory, concentration, have severe fatigue, trouble sleeping, loss of interest in enjoyable activities, ache all over? If so, consider possibilities of: Fibromyalgia, Depression, Anxiety Disorder.
Do you have dryness? Dry eyes, dry mouth; itchy, dry skin in Winter; Dry vaginal area
30% of lupus patients have and overlapping disease called Sjögren’s Syndrome: especially possible if +SSA/SSB antibodies
Keep blood pressure below 140/90
Or below 130/80 if you have: Protein in your urine, had a heart attack, had a stroke
High HDL ≠ Good cholesterol in lupus
Do not smoke cigarettes! It keeps Plaquenil from working, increases lupus disease activity (Tobacco smoke contains hydrazine that makes lupus more active), causes heart attacks and strokes, increases lung cancer, causes broken bones (osteoporosis) Call 1-800-QUIT-NOW or visit www.smokefree.gov.
- Decreases heart attacks and strokes, decrease the bad HDL that causes inflammation
- Decreases fat and excess weight, improves sleep, improves sense of well-being
- Decreases pain levels and stress, lowers symptoms of fibromyalgia and depression
- Dance classes especially felt to be good for memory problems
If you get a fever:
- Most dangerous possible cause = Infection
- Call and see a doctor immediately (primary care physician, urgent care centers, or emergency room)
- Don’t assume it is your lupus or assume it may be a “mild” infection that will go away
Get the flu shot every Fall:
- Information from the Centers for Disease Control (CDC): 20,000 – 50,000 Americans die yearly from complications of influenza
- Most are elderly, babies, and immunosuppressed
Get vaccines against pneumonia if you are on immunosuppressants:
- Pneumovax (2 vaccines 5 years apart, then another one at age 65 yo)
- Prevnar PCV-13 (once in a life time)
Some Immunosuppressant Medications:
Prednisone > 7 mg a day, Methotrexate, Arava (leflunomide), Imuran (azathioprine), CellCept (mycophenolate), Myfortic (mycophenolate), Cytoxan (cyclophosphamide) , Benlysta (belimumab), Rituxan (rituximab), Humira, Enbrel, Remicade, Orencia, Actemra
Get the Gardasil vaccine (protection from human papilloma virus):
- Everyone 9 years old – 26 years old (This is most effective before sexual activity and can prevent additional infections in those who have already been infected).
- Use in those over 26 years old? (Sexually active and not in a monogamous relationship)
- HPV cancers are more common in lupus: Anal, cervical, vaginal and vulvar, penile, throat, and nonmelanoma skin cancers
Keep up on cancer screening tests:
- Studies show that people with lupus get less cancer screenings
- Cancer = 4th most common cause of death
- Screening tests: colonoscopy, mammogram, pap smear,yearly low dose chest CT if smoker
Take a vitamin D supplement if your level is low:
Goal level of vitamin D?: At least 30 if on steroids, allthough Johns Hopkins study suggests around 40.
If you take steroids (prednisone, methylprednisolone) ask your doctor if you should be on a medicine to prevent osteoporosis.
If you take steroids regularly, wear a medical alert bracelet.
Take medications regularly as prescribed:
- A large percentage of patients don’t take their Plaquenil regularly
- Noncompliance is the number 1 reason for lupus flares and medicines “not working”
Carry an up to date medication list at all times:
Show it to anyone who asks you what medicines you are taking; Update it every time a change is made; discard old medicines.
All patients should be on an anti-malarial: Plaquenil (hydroxychloroquine), Chloroquine (Aralen), Quinacrine
Benefits of Antimalarial Medicines:
Increase life span, Decrease internal organ involvement, decrease risk of worsening of lupus, decreases doses needed of steroids,better control of severe disease when used with stronger medicines, decreases blood clots, decreases neonatal lupus births, improves chances of a successful pregnancy, decreases risk of getting diabetes
Preventing eye side effects from Plaquenil (American Academy of Ophthalmology):
Recommended dosing for women
- ≥ 5’7” = 400 mg a day
- 5 ½” – 5’6 ½ “ = 300 mg a day
- Less than 5 ½” = 200 mg a day
- If you weigh < 135# and are not over weight (otherwise go by ht) = 300 mg a day
- If you weigh < 100# = 200 mg a day
Use an Amsler grid monthly to check your vision: See eye doctor yearly after 5 years on Plaquenil
Ask eye doctor to do:
- Visual Field 10-2 yearly
- SD-OCT or FAF or mfERG yearly
- Use it every day! Even if you don’t go outside, on all exposed skin areas
- Use several times a day if you go outside
- Abide by strict UV protection measures (see the list at end of the Secrets)
Avoid alfalfa and mung bean sprouts: They contain L-canavanine (Increases immune system and lupus activity)
Eat a diet rich in Omega-3 fatty acids:
- Cold water fatty fish (salmon, sardines, mackerel), walnuts, flax seed
- Decrease inflammation, decrease cardiovascular disease, iImproves dry eyes from Sjögren’s syndrome
- Use diet… NOT pills
- Use more olive oil and canola oil in cooking (reduces bad omega-6 fatty acids)
Don’t take the herb Echinacea: It is sold to reduce colds and “boost immune system” and causes lupus to flare
Consider taking DHEA:
- 200 mg a day if approved by your rheumatologist
- May help lupus by improving bone density, improving energy, decreasing steroid doses, help with minor lupus problems
- Potential side effects: Acne, hair growth
- Only get from a compounding pharmacist (e.g. Village Green Apothecary, Bethesda)
- Learn to say “no”
- Get plenty of sleep
- Live within your means
- Work on arriving early for meetings
- Run errands during off hours
- Don’t have high expectations of others
Learn as much as you can about lupus:
- Join Molly’s Fund: www.mollysfund.org for support groups (both online and local) programs and services, resource network, or on facebook, twitter, pinterest to join a very active and engaged online community.
- Join the BMJ online lupus journal here. Click on “email alerts”
- “Like” Dr. Thomas at www.facebook.com/LupusEncyclopedia for regular lupus tips, facts and research updates
- Follow Dr. T on Twitter @lupuscyclopedia
We would like to thank Dr. Thomas for sharing his insights, lupus information, and time with us here at Molly’s Fund! We consider him to be a fantastic ally and resource when it comes to educating the public and medical community aboug lupus as well as spreading lupus awareness. We look forward to partnering with him on future projects.
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus.
**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.