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Sarcoidosis (rare) problems when taking vitamin D

Summary:Very very rare for a person to have Sarcoidosis AND problems with Vitamin D & Calcium

Sarcoidosis WIKIPEDIA

Vitamin D dysregulation
Sarcoidosis frequently causes a dysregulation of vitamin D production with an increase in extrarenal (outside the kidney) production.[25] Specifically, macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems. Physiological compensatory responses (e.g., suppression of the parathyroid hormone levels) may mean the patient does not develop frank hypercalcemia. This condition may be aggravated by high levels of estradiol and prolactin such as in pregnancy, leading to hypercalciuria and/or compensatory hypoparathyroidism.[26] High levels of Vitamin D are also implicated in immune-system dysfunctions which tie into the sarcoid condition.

Epidemiology – fewer than 2 in 10,000
Sarcoidosis most commonly affects young adults of both sexes, although studies have reported more cases in females.
Incidence is highest for individuals younger than 40 and peaks in the age-group from 20 to 29 years; a second peak is observed for women over 50.[37][51]

Sarcoidosis occurs throughout the world in all races with an average incidence of 16.5/100,000 in men and 19/100,000 in women.
The disease is most prevalent in Northern European countries, and the highest annual incidence of 60/100,000 is found in Sweden and Iceland.
In the United States, sarcoidosis is more common in people of African descent than Caucasians, with annual incidence reported as 35.5 and 10.9/100,000, respectively.52 Sarcoidosis is less commonly reported in South America, Spain, India, Canada, and the Philippines.

The Marshall protocol, developed by an electrical engineer diagnosed with sarcoidosis Trevor Marshall, hypothesizes that bacteria lacking cell walls can live inside immune cells and thus evade detection and elimination by the immune system. The theory is not accepted by most doctors, and is supported only through anecdotal evidence.[27]


Vitamin D REDUCES the probability of Sarcoidosis Hypercalcemia - Nov 2014

Calcium and Vitamin D in Sarcoidosis: Is Supplementation Safe?
Journal of Bone and Mineral Research, Volume 29, Issue 11, pages 2498–2503, November 2014
Lieke S Kamphuis1,2,*, Femke Bonte-Mineur3, Jan A van Laar1,2, P Martin van Hagen1,2 andPaul L van Daele1,2
Article first published online: 20 OCT 2014
DOI: 10.1002/jbmr.2262
© 2014 American Society for Bone and Mineral Research

Granulomas in sarcoidosis express high levels of 1α-hydroxylase, an enzyme that catalyzes the hydroxylation of 25-OH vitamin D to its active form, 1,25(OH)2 vitamin D. Overproduction of 1α-hydroxylase is held responsible for the development of hypercalcemia in sarcoidosis patients. Corticosteroids are used as first-line treatment in organ-threatening sarcoidosis. In this light, osteoporosis prevention with calcium and vitamin D (CAD) supplementation is often warranted. However, sarcoidosis patients are at risk for hypercalcemia, and CAD supplementation affects the calcium metabolism. We studied calcium and vitamin D disorders in a large cohort of sarcoidosis patients and investigated if CAD supplementation is safe. Retrospectively, data of 301 sarcoidosis patients from July 1986 to June 2009 were analyzed for serum calcium, 25-hydroxy vitamin D (25-(OH)D), 1,25-dihydroxy vitamin D (1,25(OH)2D), and use of CAD supplementation. Disease activity of sarcoidosis was compared with serum levels of vitamin D. Hypercalcemia occurred in 8%. A significant negative correlation was found between 25-(OH)D and disease activity of sarcoidosis measured by somatostatin receptor scintigraphy. In our study, 5 of the 104 CAD-supplemented patients developed hypercalcemia, but CAD supplementation was not the cause of hypercalcemia. Patients without CAD supplementation were at higher risk for developing hypercalcemia. During CAD supplementation, no hypercalcemia developed as a result of supplementation. Hypovitaminosis D seems to be related with more disease activity of sarcoidosis and, therefore, could be a potential risk factor for disease activity of sarcoidosis. Thus, vitamin D–deficient sarcoidosis patients should be supplemented
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Very very rare for a person to have sarcoidosis AND problems with Calcium+Vitamin D (1 in 100,000)

About 1 in 10 patients with Sarcoidosis had problems with combination of Calcium and Vitamin D
Calcium and Vitamin D in Sarcoidosis: Is Supplementation Safe? JBMR April 2014


Marshal Protocol


Heart Lung Blood Institute of NIH February 2009

What Is Sarcoidosis?
Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation.
It can affect various organs in the body.

Normally, your immune system defends your body against foreign or harmful substances.
For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance.
Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn't go away.
Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.
Overview
Sarcoidosis can affect any organ in your body. However, it's more likely to occur in some organs than in others.
The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

The disease also often affects the eyes and the liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works.
This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected.
Many people who have sarcoidosis have no symptoms or mild symptoms.

Lofgren's syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis.
Lofgren's syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-i-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis also varies depending on which organs are affected.
Your doctor may prescribe topical treatments and/or medicines to treat the disease.
Not everyone who has sarcoidosis needs treatment.

Outlook
The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis.
"Remission" means the disease isn't active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis.
People who have Lofgren's syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease.
Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal.
Death usually is the result of complications with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis.
This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PAR-ne-o).
Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.
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Common Signs and Symptoms
In both adults and children, the disease most often affects the lungs.
If granulomas (inflamed lumps) form in your lungs, you may wheeze, cough, feel short of breath, or have chest pain. Or, you may have no symptoms at all.

Some people who have sarcoidosis feel very fatigued (tired), uneasy, or depressed.
Night sweats and weight loss are common symptoms of the disease.

Common signs and symptoms in children are fatigue, loss of appetite, weight loss, bone and joint pain, and anemia.
Children who are younger than 4 years old may have a distinct form of sarcoidosis.
It may cause enlarged lymph nodes in the chest (which can be seen on a chest x ray), skin lesions, and eye swelling or redness.

Other Signs and Symptoms
Sarcoidosis may affect your lymph nodes. The disease can cause enlarged lymph nodes that feel tender.
Sarcoidosis usually affects the lymph nodes in your neck and chest.
However, the disease also may affect the lymph nodes under your chin, in your armpits, or in your groin.

Sarcoidosis can cause lumps, ulcers, or areas of discolored skin.
They may itch, but they don't hurt. These signs tend to appear on your back, arms, legs, and scalp.
Sometimes they appear near your nose or eyes. These signs usually last a long time.

Sarcoidosis may cause a more serious skin condition called lupus pernio.
Disfiguring skin sores may affect your nose, nasal passages, cheeks, ears, eyelids, and fingers.
These sores tend to be ongoing. They can return after treatment is over.

Sarcoidosis also can cause eye problems. If you have sarcoidosis, it's important to have an annual eye exam.
If you have changes in your vision and can't see as clearly or can't see color, call 9–1–1 or have someone drive you to the emergency room.

You should call your doctor if you have any new eye symptoms, such as burning, itching, tearing, pain, or sensitivity to light.

Signs and symptoms of sarcoidosis also may include an enlarged liver, spleen, or salivary glands.

Although less common, sarcoidosis can affect the heart and brain.
This can cause a number of symptoms, such as abnormal heartbeats, shortness of breath, headaches, and vision problems.
If sarcoidosis affects the heart or brain, serious complications can occur.
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Key Points

  • Sarcoidosis is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.
  • Sarcoidosis is more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest). The disease also often affects the eyes and the liver.
  • In people who have sarcoidosis, immune system cells cause inflammation and cluster to form lumps called granulomas.
  • If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no symptoms or mild symptoms.
  • Some researchers think that sarcoidosis develops when your immune system responds to a trigger, such as bacteria, viruses, dust, or chemicals. Genetics also may play a role in sarcoidosis.
  • Sarcoidosis affects people of all ages and races. In the United States, the disease affects African Americans somewhat more often and more severely than Whites. The disease also is slightly more common in women than in men. It usually develops between the ages of 20 and 50.
  • In both adults and children, the disease most often affects the lungs. If granulomas form in your lungs, you may wheeze, cough, feel short of breath, or have chest pain. Some people who have sarcoidosis feel very fatigued (tired), uneasy, or depressed. Night sweats and weight loss are common symptoms of the disease.
  • Lofgren's syndrome is a classic set of signs and symptoms that appear in some people when they first develop sarcoidosis. Signs and symptoms may include fever, enlarged lymph nodes, arthritis, and erythema nodosum (a rash of red or reddish-purple bumps on your ankles).
  • Your doctor will diagnose sarcoidosis based on your medical history, a physical exam, and the results from tests. He or she will look for granulomas (inflamed lumps) in your organs. Your doctor also will try to rule out other causes of your symptoms.
  • Whether you need treatment and what type of treatment you need depend on your signs and symptoms, which organs are affected, and whether those organs are working well.
  • Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment. In some cases, the disease goes away on its own.
  • If the disease affects certain organs, such as your eyes, heart, or brain, you may need treatment even if you don't have any symptoms.
  • Sarcoidosis has no cure. However, you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk to your doctor if you're pregnant or planning a pregnancy.
  • Getting ongoing care is important, even if you don't take medicine for your sarcoidosis. New symptoms can occur at any time. Also, your condition can slowly worsen without your noticing.
  • The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.
  • Rarely, sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain. Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Vitamin D Council 2008 on Marshall Protocol and Sarcoidosis


Hypercalcaemia in asymptomatic sarcoidosis unmasked by a vitamin D loading dose.

Eur Respir J. 2011 Feb;37(2):470-1.
Amrein K, Schilcher G, Fahrleitner-Pammer A.
Division of Endocrinology and Metabolism, Dept of Internal Medicine, Medical University of Graz, Auenbruggerplatz 15, A-8036 Graz, Austria. E-mail: karin.amrein at medunigraz.at. PMID: 21282814
Note from the PDF: about 2% of the people with Sarcoidosis have excessive Calcium = 2% of 2 in 10,000 = 4 in 1 million people
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Editorial: 10-20 ng appears best for rare patients with Sarcoidosis - May 2014

Goldilocks, vitamin D and sarcoidosis.
Arthritis Res Ther. 2014 May 23;16(3):111. [Epub ahead of print]
Baughman RP, Lower EE.

While low levels of vitamin D can increase the risk for osteoporosis, excessive amounts of vitamin D may also be problematic. Hypercalcemia and hypercalcuria due to increased vitamin D activity occur in a significant proportion of sarcoidosis patients. Saidenberg-Kermanac'h and colleagues compared vitamin D levels with bone fragility fractures in their sarcoidosis clinic. They found that a 25-(OH) vitamin D level between 10 and 20 ng/ml was associated with the lowest risk of bone fractures and paradoxically higher levels increased the risk of bone fractures. Using less vitamin D supplementation may simultaneously lower the risk for bone fracture and hypercalcemia in sarcoidosis.
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PMID: 25166268
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  # of studies as of 12/20/14