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There are many myths surrounding sarcoidosis that have been dispelled.

Myth- sarcoidosis often goes into remission

The NIH 6-year ACCESS 2003 study, one of the most expensive and revealing studies ever done on sarcoidosis actually reversed this common misconception about sarcoidosis remission.

This table compares clinical parameters of lung function tests (FVC, FEV1), the Scadding stage of chest radiograph (CXR), and dyspnea scale between ACCESS enrollment and the two-year follow-up:

Table III:
_____________FVC________FEV1_______CXR_______DYSPNEA
IMPROVED........20.5% (44)...... 21.9% (47)..... 37.7% (81).....19.5% (42)
UNCHANGED...57.7% (124)....56.7% (122)... 41.4% (89)......67.0% (144)
WORSE..............11.6% (25)..... 11.2% (24)..... 16.3% (35)......13.5% (29)

 2/3 of the subjects in the ACCESS study group saw no improvement.

The FVC, FEV1, Scadding stage, and the dyspnea scale remained unchanged over the two-year period in the majority of the patients.

Even in the positive-sounding "improved" category for clinical markers, the percentages described were at best "improved." There is no column for remission because nobody went into remission.

If nobody went into remission before 2 years, what about after 2 years? The study reports states: "Therefore most patients with persistent disease at two years were unlikely to have resolution of Sarcoidosis."

It is also worth noting that the study reported "end-stage pulmonary sarcoidosis usually develops over one or two decades".

Myth - Vitamin D supplementation is good for everyone

May 2003 Expert Group on Vitamins and Minerals - Safe Upper Levels for Vitamins and Minerals
See page 138:
Excessive vitamin D intake may lead to hypercalcaemia and hypercalciuria. Vitamin D promotes the absorption of calcium and the resorption of bone resulting in the deposition of calcium in soft tissues, diffuse demineralisation of bones and irreversible renal and cardiovascular toxicity. Patients with sarcoidosis are abnormally sensitive to vitamin D, due to uncontrolled conversion of the vitamin to its active form in the granulomatous tissue. Although the condition is uncommon, it would be a potential hazard if affected individuals were to take supplementary vitamin D.

Royal Brompton & Harefield NHS Foundation Trust - Sarcoidosis FAQ
Can I take vitamins and supplements?
You should avoid taking vitamin D,
as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

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.

Vitamin D supplementation may be dangerous for patients with low serum 25(OH) and increased 1α-hydroxylase activity due to granulomatous disease.
Undetectable serum calcidiol: not everything that glitters is gold

Calcium and Vitamin D supplementation in Sarcoidosis
Hypercalcemia improved in 90% of patients, including eight patients treated solely with vitamin D supplement withdrawal. Renal insufficiency, documented in 41 (42%) of SAHC patients, improved with hypercalcemia treatment. 

Myth- sarcoidosis isn’t communicable

The ACCESS study confirmed what many doctors and researchers have noted; sarcoidosis is often found in more than one family member. "One analysis has proved what previous anecdotal reports only hinted at—that sarcoidosis aggregates in families. It found that the risk for sarcoidosis was increased 4.5-fold in parents and siblings of patients with the disease. Familial aggregation was much more prominent in whites than in African-Americans, but an important risk factor in both races.” Lead ACCESS study investigator Benjamin A. Rybicki, PhD

Pulmonary Reviews.com

Myth – sarcoidosis affects primarily African-Americans

According to the ACCESS study "The second analysis revealed that the initial presentation of sarcoidosis varies by age, sex, and race. This finding challenges the widely held stereotype that the patients most often affected are African-Americans and young adults.” Lead ACCESS study investigator Robert P. Baughman, MD, Professor of Medicine at the University of Cincinnati."

Myth – sarcoidosis is rarely fatal

According to this 1997 report from the National Institute of Allergy and Infectious Disease, which is on file in the Library of Congress, "approximately one-fourth of the chronic sarcoidosis cases are dying due to respiratory failure, or other pulmonary dysfunctions."

Myth – sarcoidosis should be treated according to a ‘standard of care’

There is no ‘standard of care’ for treating sarcoidosis as there are no studies showing long-term efficacy of any conventional sarcoidosis therapy. The NIH/NHLBI guidelines states that researchers continue to look for new and better treatments for sarcoidosis.

Myth - There is no way to produce an animal model for sarcoidosis.

This is due to researcher's misconceptions :
- of what constitutes sarcoidosis (usually looking for pulmonary disease) and
- about likely causes. (It cannot be a pathogen because we would have seen it.)

Fact is: An animal model of sarcoidosis can be produced by injecting mice with sarcoid tissue obtained from sarcoid patients.

Examples:

The nature and physical characteristics of a transmissible agent from human sarcoid tissue.

Transmissible agents from human sarcoid and Crohn's disease tissues.

Also of interest:

Epidemiology of sarcoidosis in the Isle of Man--1: A case controlled study.

Epidemiology of sarcoidosis in the Isle of Man--2: Evidence for space-time clustering.

 

Updated December 1, 2015