Can SLE Patients Safely Sunbathe for Vitamin D?

Can people with SLE really not be exposed to sunlight?

Hello Doctor, I am an SLE patient.
About three years ago, I was diagnosed with RA because I did not meet four criteria.
Later, I experienced abdominal pain and vomiting after eating, which led to suspicion of small intestine bleeding and an emergency surgery.
However, it was not a small intestine issue but rather abnormal swelling of the colon.
After the surgery, I still could not eat and was transferred to a large teaching hospital, where I was diagnosed with SLE.
Subsequently, I developed a urinary tract infection that caused a fever and infected my brain nerves, resulting in paralysis of my limbs.
Due to my inability to eat, I had to receive intravenous nutrition.
After nine months of treatment, I can now eat food orally, but I still cannot stand or walk and must remain in bed.

Six months ago, I experienced tailbone pain and was unable to sit or stand.
An X-ray showed that my coccyx segments 2, 3, and 4 were flattened, possibly due to long-term malnutrition combined with steroid use causing osteoporosis, or due to lupus attacking the coccygeal bones.
Recently, following my doctor's advice, I received a treatment similar to immunoglobulin, and my tailbone pain has improved.
I would like to supplement calcium, but calcium requires sunlight to activate Vitamin D for better absorption.
Therefore, I sunbathe before 10 AM and after 4 PM for about 20 minutes without a coat.
However, my father scolds me, saying that I shouldn't be exposed to the sun and should cover up tightly.
Is it really not okay? If I wear a coat, hat, and mask while sunbathing, can that still activate Vitamin D? I have been diagnosed with osteoporosis, and is it true that supplementing calcium is ineffective? Also, why can't SLE patients eat mushrooms? I kindly ask for your answers, thank you...
Wishing you good health, Xin Yi.

Lily, 30~39 year old female. Ask Date: 2011/04/09

Dr. Gao Jiankai reply Internal Medicine

Hello, Xin-Yi.
Thank you for your inquiry! Patients with systemic lupus erythematosus (SLE) have a 60-100% chance of being sensitive to sunlight and ultraviolet (UV) rays, which can trigger disease exacerbation.
Additionally, some patients may not be aware of their photosensitivity, so we approach sun exposure with caution.
Therefore, we recommend the following:
1.
Avoid sun exposure between 10 AM and 3 or 4 PM, as advised by your physician.
2.
Avoid medications that may cause photosensitivity; you can consult your doctor about this.
3.
When going outdoors, use a sunscreen with an SPF of at least 50, applying it 30-60 minutes before going out and reapplying every 4-6 hours.
This is crucial; while you should not completely avoid sun exposure, you should avoid peak hours and use sunscreen!
Additionally, vitamin D is typically included in calcium supplements available today.
This vitamin D can be utilized by the body through metabolism, so there is no need for additional sun exposure.
Therefore, I recommend using calcium supplements that contain vitamin D to reduce the risk of bone loss.
If you already have osteoporosis, you will need to consider other medications to effectively prevent further bone loss, which should be discussed with your physician.
Regarding the consumption of mushrooms, current literature does not indicate any contraindications.
Your concern may stem from reishi mushrooms.
There is currently no strong evidence that reishi mushrooms worsen lupus, although some animal studies suggest it may be safe.
However, we maintain a conservative approach regarding the use of traditional Chinese medicine in SLE.
Therefore, I believe you can safely consume mushrooms, as a balanced diet is most important.
Best regards from the Allergy, Immunology, and Rheumatology Department at Changhua Hospital.

Reply Date: 2011/04/09

More Info

As a patient with Systemic Lupus Erythematosus (SLE), your concerns about sun exposure and vitamin D are very valid. SLE is an autoimmune condition that can make individuals particularly sensitive to sunlight, which can trigger flares of the disease. This sensitivity is due to the immune system's overreaction to UV radiation, leading to skin rashes and exacerbation of systemic symptoms.

Sun Exposure and Vitamin D for SLE Patients
1. Sun Sensitivity: It is widely recognized that SLE patients have a heightened sensitivity to UV light. Studies indicate that between 60% to 100% of SLE patients may experience adverse effects from sun exposure. Therefore, it is crucial to approach sunbathing with caution.

2. Timing and Protection: The recommendation to avoid sun exposure between 10 AM and 4 PM is sound. During these hours, UV radiation is at its peak, increasing the risk of skin damage and potential disease flares. If you choose to sunbathe, wearing protective clothing such as long sleeves, hats, and sunglasses is advisable. Applying a broad-spectrum sunscreen with an SPF of at least 50 is also essential, and it should be reapplied every two hours, especially if you are sweating or swimming.

3. Vitamin D Absorption: While sunlight is a natural source of vitamin D, it is not the only way to obtain it. Vitamin D can be synthesized in the skin when exposed to direct sunlight; however, if you are concerned about sun exposure, you can consider dietary sources of vitamin D or supplements. Many calcium supplements also contain vitamin D, which can help improve calcium absorption without the need for sun exposure.

4. Supplementation: Given your diagnosis of osteoporosis, it is crucial to ensure adequate calcium and vitamin D intake. If you are unable to get sufficient vitamin D from sunlight due to your condition, taking a vitamin D supplement (typically 800-1000 IU daily) can be beneficial. This approach can help mitigate the risk of further bone density loss.

Dietary Considerations
Regarding your question about mushrooms, there is no substantial evidence to suggest that all types of mushrooms are harmful to SLE patients. However, certain mushrooms, like reishi, have been associated with immune modulation, which could theoretically impact autoimmune conditions. It is always best to consult with your healthcare provider regarding specific dietary restrictions or recommendations tailored to your health status.

Conclusion
In summary, while sun exposure can help with vitamin D synthesis, SLE patients must be cautious due to the risk of triggering disease flares. It is advisable to limit direct sun exposure, use protective clothing, and consider vitamin D supplementation as a safe alternative. Always consult your healthcare provider before making significant changes to your sun exposure habits or dietary supplements, especially given your complex medical history. Maintaining a balanced diet rich in nutrients, alongside appropriate medical treatment, is vital for managing your health effectively.
Stay safe and take care of your health!

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