2 posts tagged “lupus community”

Lupus and vitamin D deficiency – get the lowdown

Posted March 8th, 2018 by

Vitamin D is nicknamed “the sunshine vitamin” because catching some rays on bare skin triggers your body to produce it naturally.

But what if lupus-related sun sensitivity (not to mention the winter weather) restricts your sun exposure? Take a peek at some key info on vitamin D deficiency, plus learn some dietary sources of this important nutrient.

What are the effects of limited sunlight?

Vitamin D deficiency is a common health issue in general, and reduced exposure to sunlight is one of the main factors. Researchers estimate that almost 50% of the world’s population – across all ethnicities and age groups – have a vitamin D deficiency. When the sun’s rays hit bare skin, it signals the body to produce its own vitamin D.

Getting vitamin D via sunshine can be especially tricky for some people with lupus who are taking steps to limit sun exposure or protect the skin with sunscreen and clothing. Ultraviolet (UV) light from the sun or artificial light sources can make lupus worse in 40 to 70% of people with the condition, according to Lupus.org. Sunlight may exacerbate skin disease or skin-related symptoms in people with lupus, such as the “butterfly” rash, discoid lesions and photosensitivity.

Not everyone with lupus is affected by skin problems or sun sensitivity, so completely avoiding sunlight may not always be necessary. Talk with your doctor about sun safety and healthy levels of sunlight, in your case, as well as other factors in vitamin D deficiency (such as darker skin, kidney problems and obesity) and other good sources of vitamin D (read on!).

Why is vitamin D important?

Vitamin D plays an important role for all people. Here are just a few of the health benefits for the general population:

  • Helps the intestine absorb calcium
  • Supports bone health and helps prevent osteoporosis
  • Helps with muscle movement and nerve function
  • Supports immune function and reduction of inflammation

For those with lupus, vitamin D is also vital because:

  • Low levels of vitamin D may increase the risk of kidney complications or kidney failure
  • Some initial research shows that vitamin D may play a role in controlling lupus symptoms and bolstering kidney function (but more research is needed on the role of vitamin D in lupus treatment)

What are some other sources of vitamin D?

Talk with your doctor about testing your blood level of vitamin D and the best sources of this nutrient for you. For the general population, good sources of vitamin D beyond sun exposure include:

  • Foods that contain it naturally, such as the flesh of fatty fish like salmon, mackerel and tuna (small amounts are also found in beef liver, cheese, egg yolks and mushrooms)
  • Foods fortified with vitamin D, such as milk, yogurt and cereal (fortified foods provide most of the vitamin D in the American diet)
  • Oral vitamin D2 or D3 supplements, taken as directed by a doctor, usually in the case of vitamin D deficiency. Talk with your provider before taking a new supplement.

The most common test for vitamin D deficiency is called 25-Hydroxyvitamin D (or ’25-OH Vit D’).

How do you get your vitamin D? Add a comment or join PatientsLikeMe today to talk about this topic with 10,000+ members living with lupus.

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Posted December 18th, 2017 by

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad).

If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus.

A mix of symptoms

Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects.

“I was really flaring…”

PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just a couple of the forum posts researchers highlighted.

Living with more than lupus

“…and then I had a flare of lupus, RA and Sjogren’s that still has not gone away,” one member wrote in the forum. Many members who’ve discussed their flares have also shared which other conditions they’ve been diagnosed with in addition to lupus.

If you’re living with lupus, how would you describe what happens during your flares? How long do they tend to last? Do you have other conditions that make your flares worse or hard to identify? Share your experiences here, or — even better — join PatientsLikeMe to learn from and connect with nearly 30,000 people living with lupus.

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