Sarcoidosis Foundation
Of WV
 Inc
   
 A 501(c) 3 Organization

 

                                                                                    DISCUSSION  (PAGE 2)           

                                           SARCOIDOSIS-CORTICOSTEROIDS-AND PNEUMONIA

 

Pneumonia is a lung disease, and the lungs of a patient with sarcoidosis are greatly weakened by the chronic intraphagocytic metagenomic bacteria that cause the illness. Though it is truly a deadly disease, people don't realize this.

 

Many are likely convinced by their doctors that sarcoidosis could be successfully kept at bay by high doses of immunosuppressants. People state that their  sarcoidosis has “gone into remission". The evidence says that sarcoidosis doesn’t go away. The 2003 NIH ACCESS study followed 215 sarcoidosis patients for two years. Two years is the period during which it is sometimes mistakenly thought that the disease can go into remission. NIH ACCESS found that measures of sarcoidosis severity remained unchanged over the two-year period, despite the fact that many patients were using corticosteroids and other immunosuppressive drugs– and despite the fact that the study’s authors went to great lengths to equivocate about what their data really meant.

 

In fact, in the NIH ACCESS study there were no documented cases of spontaneous remission. Even in the positive-sounding “improved” category for clinical markers, the percentages described were at best “improved”, not “better” and certainly not “cured.” The study also concluded that most patients with persistent sarcoidosis at two years were “unlikely to have resolution of the illness” and that “end-stage pulmonary sarcoidosis usually develops over one or two decades.”

In simple terms, the study found that not one patient recovered over a two year period, and that any patient to remain ill with sarcoidosis for two years is likely to die from the disease over the following ten to twenty years.

 

Pneumonia is sometimes said to be unrelated to sarcoidosis, but those of us who know better realize that the opposite is true. Many of the chronic bacterial species that cause sarcoidosis create substances that block the Vitamin D Receptor - a fundamental receptor that controls many components of the innate immune response including transcription of the bulk of the body’s antimicrobial peptides.

 

Our choice to be treated with the “first-line treatment” for sarcoidosis - immunosuppressants including prednisone no doubt - is doubly unfortunate. Doing so inactivates the innate immune system, which allows a heavier load of VDR-dysregulating bacteria to accumulate… which, in turn, further inactivates the innate immune system. In such a state of disrepair, the immune system has little recourse in its fight against an otherwise easily dispatched strain of pneumonia.

Clearly, our doctors incorrectly fault an overactive immune response for the disease. Without being too dramatic, it’s also clear their ignorance has deadly repercussions.

 

Sarcoidosis is deadly. Also, it is an apt example of how mortality associated with sarcoidosis goes underreported in cases where opportunistic infections are erroneously attributed to be the cause of death. No wonder statistics on sarcoidosis and death are inaccurate. If a patient succumbs to a co-infection directly related to the sarcoidosis disease process the co-infection is blamed rather than sarcoidosis itself.

 

We can do a service to the community by communicating the actual seriousness of this disease to the public, but instead we make the mistake of accepting the statements of our doctors as an accurate depiction of sarcoidosis

 

How long will it take before sarcoidosis is given full credit for the deadly disease that it is? The ample use of corticosteroids that weaken immune function - puts patients in a place where they can easily succumb to infections.

Conventional treatment for sarcoidosis is not only ineffective but also quite dangerous and even life threatening.

We also can hope that while tragic, Bernie Mac’s death may at least cause the medical community and the public to raise an eyebrow about the fact that attempts to deny the seriousness of sarcoidosis do little to stop the disease from taking lives.


                                                         Sarcoidosis Fact Sheet

                                                                                         November 2006

Sarcoidosis is a disease that causes inflammation of the body's tissues and is characterized by the presence of granulomas -- small areas of inflamed cells.  Sarcoidosis can attack any organ and often affects more than one.  However, more than 90 percent of patients with sarcoidosis will have pulmonary involvement.1 Pulmonary sarcoidosis can cause loss of lung volume and increased lung stiffness.

  • The cause of sarcoidosis remains a mystery.  Researchers have several theories including an altered immune system that gives off an exaggerated defense reaction against some event or substance perceived as a threat and/or genetic factors. One study found that the risk for sarcoidosis was increased 4.6-fold in parents and siblings of patients with the disease.2
  • Sarcoidosis is often asymptomatic.  Symptoms of pulmonary sarcoidosis, when they occur, may include a dry cough, shortness of breath, raised bumps on the shins; these may be accompanied by fatigue, weakness, weight loss and unexplained fever.
  • Pulmonary sarcoidosis is found mainly in adults between the ages of 20 and 40.  Females tend to have slightly higher rates of sarcoidosis than males. Sarcoidosis appears to occur more commonly in nonsmokers than in smokers.3
  • African Americans, along with Swedes and Danes, have the highest prevalence rates of sarcoidosis in the world.  In the U.S., the lifetime risk of sarcoidosis is three times higher among African Americans than whites.4  Although deaths due to sarcoidosis are uncommon, the mortality rate among African Americans is more than 16 times that of whites.5
  • Studies have shown that certain populations have a greater likelihood of manifestations outside the lung.6  African Americans are more likely to have chronic uveitis (inflammation of the eye) and lupus pernio (painful skin lesions associated with discoloration of the nose, cheeks, lips and ears). Puerto Ricans, Mexicans and Europeans tend to suffer from Erythema nodosum (tender, red bumps, usually found on the legs).
  • Heart and eye sarcoidosis appear to be more common in Japan, where the most frequent cause of death for sarcoid patients is related to heart problems.  Elsewhere, mortality is due most commonly to lung failure.
  • Diagnostic tests include chest x-rays, pulmonary function tests and special blood tests. In most cases a biopsy is necessary to fully establish the diagnosis. It has also been suggested that with the even with the mildest cases of sarcoidosis should be evaluated at regular intervals, such as annual examinations.7
  • Sarcoidosis is not disabling in a majority of cases.  The condition appears only briefly and disappears on its own without treatment.  About 20 to 30 percent of people with sarcoidosis are left with some permanent lung damage and in 10 to 15 percent the disease is progressive.  Fatality occurs in fewer than one in 20.8
  • Oral corticosteroids and other drugs that control inflammation represent the mainstay of sarcoidosis treatment. As a second line therapy, immunosuppressive agents may be of some benefit. Making healthy lifestyle choices, including not smoking and maintaining a healthful diet, is an important component of living with sarcoidosis. Lung transplantation can be considered as the treatment of last resort for intractable sarcoidosis unresponsive to immunotherapy.9

For more information call the American Lung Association at 1-800-LUNG-USA (1-800-586-4872).

 

 

 

 

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