• Introduction
• What is vitamin D and how does it affect the body?
• What do the studies show about vitamin D deficiency and lupus show? (Dr. Vickers video)
• What are the symptoms for vitamin D deficiency?
• How is a vitamin D deficiency diagnosed?
• What is considered a good level for vitamin D?
• Are certain people more likely to develop a vitamin D deficiency?
• Where can you get more vitamin D?
• In Conclusion

Introduction

Over the past several years, the scientific and medical communities have begun to make a connection between Vitamin D (25-hydroxyvitamin D or [25(OH)D]) levels and the body’s immune response. We are writing this blog, not to promote the use of vitamin D as a lupus treatment, but rather to help inform you as to some of the important research and information that is currently available on vitamin D deficiency and its role in lupus.

• Some studies have shown that as many as 67% (and even a higher percentage in other studies) of individuals with systemic lupus erythematosus (SLE) are vitamin D deficient which makes this research all the more relevant to gaining more understanding about the connection between vitamin D levels and lupus disease activity.
• A 2022 study showed that out of the 25,871 participants who took vitamin D supplements over the course of five years, the incidence of autoimmune disease decreased by 22% compared to those who took a placebo.  This study was not specific to lupus, but it showed promise and a basis for future studies.
• In 2023, a study described in greater detail the relationship between SLE and vitamin D, including its effects on inflammation, bone densities and organ damage.

It is also common for those with lupus to have poor bone health and are twice at risk for having a bone fracture than those without SLE.  Since vitamin D is necessary for the body to absorb calcium – a primary building block of bones – it is something for lupus patients to pay close attention to!

What is vitamin D and how does it affect the body?

What is vitamin D?

1. Vitamin D is a nutrient (specifically a steroid hormone) that helps the digestive system absorb calcium and a few other things.
2. It is the only vitamin that the body can produce on its own – though that requires the skin to be exposed to sunlight. The body needs to get all other vitamins from the foods you eat or by taking supplements.
3. Once your the body absorbs vitamin D, it turns it into a hormone (called either activated vitamin D or calcitriol). It is the ONLY vitamin that does this.

Here are some of the systems and processes that vitamin D (and calcium) affect:

• It is essential for strong bones because it helps the body takes the calcium from food and gets it into the blood. Without vitamin D, all of the calcium that is ingested would just pass through the digestive tract unabsorbed and leave the body.
• It also encourages bone cells to create stronger bones by ensuring they have enough calcium.
• Muscle function
• Cellular growth and changes
• The circulatory/cardiovascular system
• Respiratory system
• Brain development
• Anti-cancer effects
• The immune system’s T-cells and dendritic cells. Dendritic cells play an important role in protective immunity.
• Vitamin D is also thought to have antibacterial and anti-inflammatory properties

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What do the studies about vitamin D deficiency and lupus show?

Many studies have now shown that there is a link between vitamin D and lupus. Here are some fast facts based on these studies:

• Individuals with lupus are more likely to have low levels of vitamin D.
• Individuals with lupus who have higher levels of vitamin D tend to have fewer lupus symptoms.
• In particular, low vitamin D levels are associated with higher inflammation, significant organ damage and more likely to take more corticosteroids.
• The risk factors for heart disease in individuals with lupus increases if vitamin D levels are low.
• The risk for high blood pressure and elevated lipids is higher in individuals with SLE and with a vitamin D deficiency.
• Some studies have shown that giving vitamin D supplements to individuals with lupus can reduce the chances and occurrences of flares.
• Adding vitamin D in vitro (test tube experiments performed with cells or biological molecules) has been shown to reverse abnormalities in the immune system characteristic of SLE.

There is some conflicting information as to the efficacy of vitamin D supplements in individuals with lupus, but for the most part the results looks promising.

Dr. Edie Vickers of the An Hao Natural Healthcare Clinic in Portland, Oregon believes that vitamin D supplements can provide benefits to individuals with lupus. Dr. Vickers briefly discusses her thoughts about vitamin D in this KFL video:

The results from several recent studies is a bit less clear.  A study conducted by researchers from Universities of Medical Sciences in Tabriz and Urmia, Iran showed promise for supplementing diets with vitamin D to decrease disease activity.  By contrast, however, a study conducted by researchers at the Department of Rheumatology at Al Zahra Hospital in Iran concluded there were no significant improvements in SLE symptoms for the individuals who were given vitamin D supplements. So, though promising, clearly, more research is needed.

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Symptoms and Diagnosis for Vitamin D Deficiency

The symptoms for vitamin D deficiency can be very subtle but can include fatigue, general aches and pains or frequent infections. Some people may have no noticeable symptoms at all. If you have pain in your bones or weakness that causes mobility issues (this can be a symptom of severe vitamin D deficiency), please seek medical attention immediately.

..How is a vitamin D deficiency diagnosed?

According to the Vitamin D Council,  a blood test is the only accurate way to test for a vitamin D deficiency. There are several ways to test for vitamin D:

1. Asking for the test at a doctor’s office: Ask your doctor to specifically give you the 25(OH)D blood test. FYI, there is another test called the 1,25(OH)2D test but the 25(OH)D is the only way to test whether or not a person is getting enough vitamin D.  Sometime medical insurance will cover this test.
2. At-home blood test: It is actually possible to order an in-home vitamin D test kit from the Vitamin D Council through their website (https://www.vitamindcouncil.org) for around $60.  In-home tests are easy to use and involve pricking a finger to get a small blood sample. This sample is sent to a laboratory for results. We cannot confirm the accuracy of this particular test, but The Vitamin D Council has very good information on a variety of issues regarding vitamin D health.
3. Ordering a test from a website: There are a few websites with labs recommended by the Vitamin D Council for sending tests:  healthcheckusa.com, and privatemedlabs.com. All of these companies sell the 25(OH)D test. The price of these is a bit higher than the order-at-home blood test.

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What is considered a good level for vitamin D?

There is some debate on this:

• According to Dr. Thomas, author of The Lupus Encyclopedia, a good level for vitamin D is 30ng/ml if on steroids, although he states that a Johns Hopkins study suggests around 40 ng/ml.
• Formerly, the Vitamin D Council recommended levels of 50 ng/ml, and that would require a daily dosage of 5,000 IU/day of vitamin D supplements.
• To reach and stay above the 30ng/ml level recommended by the Endocrine Society, a supplement of around 2,000 IU/day would be advised.  To read more on this and other guidelines for reaching certain levels of vitamin D, please visit this link.

IMPORTANT NOTE: Nobody with lupus should attempt to take high doses of vitamin D to control their disease activity, and as always, please speak with your treating physician before starting or stopping any medication or supplement. There is no study as to the long term effects of high dosages of vitamin D. Currently the recommended daily allowance is 600IU a day until age 70, please consult with your physician before taking more than the recommended daily allowance.

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Are certain people more likely to develop a vitamin D deficiency?

The answer is yes. Here are a several groups of people who are more likely to develop this deficiency:

• People with darker skin tones: Melanin protects the skin from UV rays. People with darker skin have more melanin and therefore absorb fewer UV rays. This means that people with more melanin make vitamin D much more slowly than those with lighter skin after sun exposure.
• People who spend a lot of time indoors during the day: Naturally, these people will have the least amount of UV exposure.
• The elderly: With thinner skin, the ability to produce vitamin D is reduced.
• Infants who are breastfed and not given a vitamin D supplement: If the mother takes a supplement, this can help.
• People who cover their skin all of the time or wear sunscreen to block out UV rays: This often includes many individuals with lupus who suffer from photosensitivity and need to avoid UV rays. Wearing sunscreen is still recommended but can limit your body’s ability to produce vitamin D.
• People who live in the Northern US, Canada or other locations in the upper Northern hemisphere: This has to do with the reduced number of hours of sunlight as you get further from the equator.
• During times of year where there is less sunlight (winter, for example): Interestingly, individuals with lupus often suffer higher incidence of flares during these months as well.
• Women who are pregnant
• People who are very overweight or obese

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Where can you get more vitamin D?

There are only three ways to get vitamin D:

1. By exposing the bare skin to the sun
2. By taking supplements
3. Dietary intake from foods

Vitamin D has long been known as the “sunshine vitamin” because it is produced by the body in response to ultraviolet light exposure from the sun. Therefore, exposure to sunlight is one way to get more vitamin D, with 20-25 minutes per day being a helpful amount to affect  vitamin D levels positively. If you have photosensitivity or live in a climate with less available sunshine, this may not be an option for you.  Ultraviolet lamps and bulbs are also available for indoor use. Vitamin D supplements are commonly prescribed to raise vitamin D levels. With supplements dosage can be controlled to meet the individual’s needs. Please speak with a doctor about finding the right dosage of vitamin D supplements.  Do not begin taking any supplements without first speaking to a physician. Taking too much vitamin D may lead to hypercalcemia and can cause a feeling of sickness, loss of appetite, being thirsty, frequent urination, pain in the abdomen, muscle pain or weakness, fatigue and/or confusion. Special care should be taken when taking vitamin D supplements for those who have the following conditions:

• Kidney disease
• Kidney stones
• Liver disease
• High blood calcium levels
• Hyperparathyroidism
• Hodgkin’s or non-Hodgkin’s lymphoma
• Granulomatous disease
• Hormonal disease
• If you are taking certain medications: This can include high blood pressure medications, medications for irregular heartbeat, and other drugs that may interfere with vitamin D and may require more than the usual dosage of vitamin D.
• Let your doctor know all medications and supplements that you are currently taking.

Vitamin D can also be found in certain foods as well. Some foods that contain high amounts of vitamin D are fatty fish (such as mackerel, trout, salmon, tuna and eel) and fish oils, egg yolks, cheese, fortified– meaning vitamin D has been added- cow’s milk (contains 100 IU’s in one 8 ounce glass), fortified cereals, fortified orange juice, and beef liver.

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In Conclusion

While the research is certainly interesting and even promising, there is no conclusive research that shows that low vitamin D levels cause lupus nor can the physiological and clinical significance be confirmed. It is also difficult for researchers to determine whether low levels of vitamin D cause lupus or whether the lupus causes the low levels of vitamin D. Overall, more research and experimentation is needed to determine a more clear answer about the helpfulness of vitamin D to help manage and treat lupus. What we do know is that, given its relative safety in combination with the beneficial effects on the immune system, there is optimism that correcting a vitamin D deficiency in individuals with SLE may lead to better outcomes.  We will keep reading and watching for any developing studies and information on this topic and, as always, keep you informed.

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References

Am I deficient in vitamin D? (2018). Retrieved from: http://www.vitamindcouncil.org/

Bishak, Y. Ghavamzadeh, S., Hassanalilou, T., Khalili, L., Payahoo, L., Shokri, A. (2018). Role of vitamin D deficiency in systemic lupus erythematosus incidence and aggravation. Autoimmunity Highlights, 9(1) Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5743852/pdf/13317_2017_Article_101.pdf

Hahn, J., Cook, N. R., Alexander, E. K., Friedman, S., Walter, J., Bubes, V., Kotler, G., Lee, I., Manson, J., & Costenbader, K.H. (2022). Vitamin D and marine omega 3 fatty acid supplementation and incident autoimmune disease: VITAL randomized controlled trial. BMJ (376)  Retrieved from https://www.bmj.com/content/376/bmj-2021-066452

Karimifar, M., Karimzadeh, H., Shirzadi, M. (2017). The effect of Vitamin D supplementation in disease activity of systemic lupus erythematosus patients with vitamin D deficiency: a randomized clinical trial. Journal of Research in Medical Sciences, 22(4), Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5361443/?report=printable

Laino, C. (2011). Vitamin D shows early promise against lupus. Retrieved from: http://www.webmd.com/lupus/news/

Ludwig, J. (n.d.). Everything you need to know about vitamin D: functions, sources, possible benefits, and more. Retrieved from: https://www.everydayhealth.com/vitamin-d/

Quittner, E. (n.d.). 12 ways to get your daily vitamin D. Retrieved from: http://www.health.com/

Shevchuk S, Marynych L, Malovana T, & Denyshchych, L. (2023). Vitamin D level in patients with systemic lupus erythematosus: its relationship to disease course and bone mineral density. Lupus Science & Medicine, 10(2).e000968. doi: 10.1136/lupus-2023-000968

Thomas, D. E. (2014). The lupus encyclopedia: A comprehensive guide for patients and families. Johns Hopkins University Press. https://www.amazon.com/Lupus-Encyclopedia-Comprehensive-Patients-Providers/dp/1421446847

Walsh, N. (2014). Low vitamin D linked with worse lupus. Retrieved from: http://www.medpagetoday.com/

Author: The KFL Staff (revised 2023)

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