Lupus and Vitamin D
What is Vitamin D?
Vitamin D is an essential nutrient that every person needs for building and maintaining healthy bones and quite frankly, living a healthy life. Vitamin D (which is really a fat-soluble secosteroid hormone NOT a vitamin...but that’s a whole other blog) is crucial for the proper handling of calcium in the body, because the body can only absorb calcium when vitamin D is present. It also helps with the absorption of magnesium, phosphate, and many other biological effects. Additionally, it regulates other cellular functions in your body through its anti-inflammatory, neuroprotective and antioxidant properties that contribute to immune health, muscle function, and brain cell activity.
You may be wondering “Well, if this vitamin is so important, it MUST be found in most foods, right?” Wrong. Unfortunately, Vitamin D isn't naturally found in a large amount of foods; however, you can get it from fortified milks and cereals, and certain fatty fish such as salmon, mackerel, and sardines or like most of us, through nutritional supplements. The only other source of vitamin D is through the sun, when your body converts a chemical in your skin into an active form of the vitamin (calciferol) through direct sunlight exposure.
What is Vitamin D Deficiency?
Depending on where you live, your lifestyle, your age, and skin pigmentation, you may be at risk for developing vitamin D deficiency. This means that you do not have a sufficient and healthy amount of vitamin D in your body. Fair-skinned individuals who are younger
and live in sunny climates are far more likely to have higher levels due to how they convert sunshine into vitamin D than darker-skinned older individuals that live in areas that are rainy and gray most of the year.
Additionally, vegans or people who are lactose-intolerant, tend to not get enough vitamin D from their diets, and are at risk of developing vitamin D deficiency as well.
When you become vitamin D deficient, you can develop symptoms including:
Pain (sore muscles and bones)
Depression and/or anxiety
However, severe vitamin D deficiency can cause even more serious symptoms if left untreated. Low levels have been associated with higher likelihoods of cardiovascular events (strokes, thrombosis, and heart attacks), certain cancers (breast, colon, ovarian, prostate), immune dysfunction, and bone disorders like osteoporosis.
What is the Connection Between Vitamin D and Lupus?
Vitamin D deficiency is extremely common in lupus patients, with more than 50% of lupus patients having deficient levels and severe deficiency levels (less than 10ng/ml). There are many suspected reasons for this, including how lupus affects primarily people of color, and darker skin is associated with lower vitamin D levels. Also, lupus patients who are
overweight due to chronic steroid use and inactivity tend to have lower levels as well because fat cells have the ability to dissolve vitamin D. Lastly, and this is a big one, most lupus patients have some level of photosensitivity, and the avoidance of the sun can cause those already low vitamin D numbers to sink even lower.
There is also a correlation between lupus disease activity and low vitamin D levels. Dr. Don Thomas, our go-to rheumatologist and author of the best-selling lupus handbook, “The Lupus Encyclopedia” and creator of www.lupusencyclopedia.com urges all his patients to be diligent about taking their vitamin D. As he states, “I'm a huge proponent of vitamin D. It has made a big difference in my practice and my patients. If SLE patients were to be religious with HCQ + strict UV protection + taking their vitamin D (there is a huge poor adherence rate with all 3 of these)... it can make a big difference in needing less steroids and stronger immunosuppressants as well as prolong life, lower the risk for internal organ involvement, decrease blood clots/strokes/heart attacks, lower cancer risk, etc. (that is with doing all 3, not just vitamin D).”
Well, there you have it folks. Remember this slogan, “Take your D, and from steroids you may flee.” Okay, I may have used a little creative liberty there, but you get the point. Low vitamin D levels can take you down and I am speaking from personal experience when I say this. I am an olive-skinned Hispanic female with SLE and photosensitivity living in the Pacific Northwest. I cannot exist without my vitamin D supplements. I have had dangerously low levels in the past, and it feels terrible. Mentally and physically. Why put yourself through that when taking a daily supplement and eating the right foods can easily prevent it?
Obviously there is a correlation between low levels of vitamin D and immune regulation. This is apparent in newly diagnosed lupus patients having a very high incidence of vitamin D deficiency at disease onset. This is further validated in the evidence of increased infections with people who have vitamin D deficiency. Recently, studies have suggested that those with vitamin D deficiency have an increased risk of COVID-19 infection, poorer outcomes, and higher mortality rates than those with normal or even high levels. These studies have raised questions within medical communities and beyond whether high doses of vitamin D should be used to treat COVID-19. This conclusion is unfortunately too soon to tell, due to several studies that are either not published or still in progress. All the more reason to choose to vaccinate and protect yourself against the terrible COVID-19 virus, particularly if you have low vitamin D levels.
With infection now beating out cardiovascular disease as the #1 cause of death in SLE, it is important to remember what is at stake here when you choose to not address vitamin D levels if you have lupus. Whether it is infection or disease activity, vitamin D deficiency can cause issues with increased liver enzymes, lower hemoglobin concentrations, and higher antibody levels (including double-strand DNA)...just to name a few.
The Right Dose of Vitamin D
Most rheumatologists tend to believe anything under 40 ng/ mL is not adequate for managing lupus symptoms and 40 ng/mL or higher is the goal with SLE patients.
I am sure you are thinking, “Just cut to the chase, and tell me how much to take.” Unfortunately, I can’t. Not just because I am not a doctor and cannot give you advice, but because every person’s levels are different. Due to this, only your doctor (preferably your rheumatologist) can make that call after reviewing your lab tests and seeing what your vitamin D level is. Some people can get away with taking 2,000-3,000 IU’s daily. Others may have to go on a prescription power dose of 50,000 IU’s once a week. Whatever the suggestion, for the LOVE OF CHOCOLATE make sure you comply with your doctors orders. Your vitamin D can drop much quicker than it can raise (remember your fat cells gobble it up like little hungry Pac-Men). So it will take some weeks and consistency of dosing to get it back up.
At this juncture, you probably have gotten the point that your vitamin D levels should be a priority. If you are agreeing with me, then I have done my job as the nagging friend, advocate, and lupus nonprofit leader...and I am glad.
It is time to start treating vitamin D like it is a life-saving medication, not a superfluous supplement. The latter could not be farther from the truth. Keeping on track with taking your vitamin D is the easiest thing you can do to be proactive with your health and lupus disease activity. It is also the easiest thing you can do to sabotage your health. It is entirely up to you to choose.
And in this multiple choice question of life...I hope you choose D.
Kelli (Casas) Roseta
The Lupus Encyclopedia, Johns Hopkins Press Health Book, By Dr. Donald E. Thomas, Jr. M.D., FACP, FACR, pages 359-360
Vitamin D Deficiency: Symptoms & Treatment (clevelandclinic.org)
Vitamin D and the Immune System (nih.gov)
Vitamin D in SLE: Modest Association with Disease Activity and Urine Protein/Creatinine Ratio (nih.gov)
Does vitamin D deficiency increase the risk of SARS-CoV-2 infections? (news-medical.net)
Vitamin D deficiency and its association with disease activity in new cases of systemic lupus erythematosus - PubMed (nih.gov)
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.
Published, October 2021