Can Someone explain Sarcoidosis to me ?

[RainbowRising]

I need to understand this condition in laymans terms...including the syptoms...what to look for....how is it treated, or how are the symptoms monitored or kept in check somewhat.....

I am studying a lot of Gulf War Illness conditions and get many of these things mixed up.

Sincerely,

Thomas W. Trefts
Co-Founder of the UNIFIED VETERANS COALITION
UNIFIED VETERANS COALITION

Special Links For : All Allied Forces


Agent Orange, Gulf War Illness
Veterans Health Issues, Homeland Security
Political Action, Women‘s Vet Issues & Bible Studies
xsorbit27.com/users5/unifiedveteranscoalition/

[Sarcoidawareness]

Sarcoidosis is a multisystem granulomatous disease. This means there
are scattered collections of mixed inflammatory cells (granulomas)
affecting many different parts of the body. Characteristically these
are non-caseating epithelioid granulomas (a pathological description
distinguishing sarcoidal granulomas from the caseating or cheese-like
granulomas seen in tuberculosis).

Sarcoidosis usually starts in the lungs or lymph nodes in the chest.
It is thought that inflammation of the alveoli (tiny sac like air
spaces in lungs where carbon dioxide and oxygen are exchanged) is the
start of the disease process in the lungs. This may either clear up on
its own or lead to granuloma formation and fibrosis (scarring). Over
90% patients have some type of lung problem. Once considered a rare
disease, sarcoidosis is now the most common of the fibrotic lung
disorders.

Other commonly affected organs (i.e. outside the lungs) include the
following:

* Skin 20-35%
* Eye 20-30%
* Liver 30-40%
* Heart 5-25%
* Nervous system 1-5%
* Musculoskeletal 2-38%

Who is at risk of sarcoidosis?

Sarcoidosis occurs worldwide, affecting persons of all races, age, and
gender.

* Risk appears to be greater if you are of African-American,
Scandinavian, German, Irish or Puerto Rican descent.
* Mainly affects people between 20-40 years of age.
* Risk is two times greater in black women than in black men

What causes sarcoidosis?

Not much is known about sarcoidosis and to date there is no known
cause or causes. It is thought to be a disorder of the immune system
where there is a malfunction in the body's natural defence mechanisms.
Whether this abnormal immune response is a cause of sarcoidosis or an
effect of the disease still needs to be answered.

Continued research is necessary to answer remaining questions such as:

* Is sarcoidosis triggered by a hypersensitivity response to one or
many agents (bacteria, virus, fungi, chemical toxin)?
* In which body organ does sarcoidosis actually start?
* Do hereditary, environment, and lifestyle play a role in how the
disease presents and progresses?
* How can sarcoidosis be prevented?

What are the signs and symptoms of sarcoidosis?

Sarcoidosis may not result in symptoms and the disease may come and go
without the patient or doctor ever being aware of it. Symptoms can
appear suddenly and then just as quickly resolve spontaneously.
Sometimes, however they can continue over a lifetime.

Symptoms can be related to the specific organ affected, or they can be
non-specific general symptoms, including:

* weight loss
* loss of apetite
* fatigue
* fever
* chills and night sweats.

Sarcoidosis may involve one organ system or several.

Symptoms and signs of specific organ involvement
Organ Comments
Lungs

* Respiratory symptoms include coughing (dry or with phlegm) and
shortness of breath
* Occasionally chest pain and a feeling of tightness in the chest
* In some patients upper respiratory tract involvement produces
hoarseness, nasal obstruction and recurrent or persistent sinusitis

Skin (cutaneous sarcoidosis)

* About 1/3 of patients with cutaneous sarcoidosis have no involvement
of other organs
* Lesions may be non-specific (similar to several other skin
conditions) or specific
* Non-specific lesions include:
o erythema nodosum: tender, 1-2cm bumps mostly on the shins; often
accompanied by arthritis in the ankles, elbows, wrists and hands
o nummular eczema
o erythema multiforme
o calcinosis cutis (deposition of calcium salts within the skin)
o pruritus (itch)
* Specific lesions show granulomas on histology (microscopic
examination of a skin biopsy) and include:
o lupus pernio: large bluish-red and dusky purple infiltrated nodules
and plaque-like lesions on nose, cheeks, ears, fingers and toes
o skin plaques: purple-red or brown, thickened, circular skin lesions
o maculopapular eruptions
o nodular lesions deeper in the skin
o infiltration (thickening) of old scars (scar sarcoidosis)

Eye

* Red or watery eyes
* Any part of the eye can be involved:
o granulomatous uveitis: most common, results in blurred vision,
watery eyes and photophobia (dislike of light)
o iris nodules
o retinochoroiditis
o conjunctivitis
o lacrimal gland involvement
o optic nerves
o proptosis (protruding eyeball)
* Uncommonly, cataracts, glaucoma, and blindness can result

[Sarcoidawareness]

Liver

* Up to 1/3 have hepatomegaly (enlarged liver) or changes in their
liver enzyme levels
* Liver disease resulting in serious symptoms is rare
* May result in fever, malaise and fatigue

Heart

* Sarcoidosis of heart muscle (myocardium) is much more common in the
Japanese than in other races and is the leading cause of death from
sarcoidosis in Japan
* Chest pain, palpitations and rarely sudden death
* Symptoms and signs associated with congestive heart failure,
pericarditis or papillary muscle dysfunction (valvular heart disease).
These include shortness of breath, ankle swelling, irregular heart
beat and chest pain.

Nervous system

* Granulomas can appear in the brain, spinal cord, and facial and
optic nerves
* May result in headache, confusion and malaise
* Facial paralysis

Musculoskeletal

* Arthritis (inflammation of the joints), periarthritis (inflammation
of surrounding tissues) or arthralgia (painful joints) may occur
* Arthritis is most commonly acute (coming on suddenly), resulting in
swelling of the lower legs and tenderness of ankles, knees and fingers
* Chronic (long term) sarcoid arthritis is rare

Calcium metabolism

* Raised serum calcium levels in 2-63% of sarcoidosis patients due to
overproduction of vitamin D by sarcoid granulomas. It may not require
treatment.
* Kidney stones (nephrolithiasis) may result from the abnormal calcium
metabolism

Cutaneous sarcoidosis

Sarcoid plaques
Sarcoid on knee
arising in scars
Sarcoid granulomas
on forehead

Enlarged lymph nodes
on chest X-ray
Lupus pernio
Sarcoid papules
How is sarcoidosis diagnosed?

There is no single or specific diagnostic test for sarcoidosis. The
following tests may be performed when sarcoidosis is suspected.
Test Comments
Chest x-ray

* Changes in appearance of lungs, heart and lymph nodes can be first
indication of sarcoidosis

Lung function

* Tests to see how well the lungs are doing their job of exchanging
CO2 and O2 with the blood
* Granulomas and fibrosis of lung tissue reduces lung capacity and
disturbs the normal flow of gases

Blood

* Mild anaemia occurs due to granulomatous bone marrow involvement, or
chronic disease state
* Increase in serum calcium levels and abnormal liver function tests
often accompany sarcoidosis

Biopsy

* Microscopic examination of specimens of lung tissue or other tissue
of organs involved can show where granulomas have formed in the body
and confirm diagnosis. Multiple biopsies may be necessary.

Slit-lamp eye examination

* Examines the inside of the eye
* Used to detect silent damage such as asymptomatic uveitis

Other tests

* CT scanning, echocardiography, gallium scanning
* ECG
* Kveim test: an injection of sarcoidal spleen, biopsied to determine
whether granulomas have formed (this test is no longer available in
New Zealand)
* Liver and kidney function tests
* 24-hour urinary calcium excretion
* Angiotensin converting enzyme

These tests will not only be used to help confirm diagnosis but can
also help the doctor to monitor the progress of the disease over time
and determine whether the condition is improving or deteriorating.
What is the treatment for sarcoidosis?

For most patients with sarcoidosis no treatment is required. Symptoms
are usually not disabling and tend to disappear spontaneously. In
mild-to-moderate cases, because the disease can resolve on its own
spontaneously, a 3 months observation period is recommended before
commencing any treatment. When treatment is necessary the aim is to
keep the lungs and other affected organs functioning and to relieve
symptoms.

In most patients initial treatment is with corticosteroids; these are
used to treat inflammation and granuloma formation. Prednisone is the
most often prescribed corticosteroid. This may need to be continued
for several years as the disease can often relapse once treatment stops.

If prednisone fails to improve symptoms, other immune-modifying agents
such as methotrexate, azathioprine, ciclosporin, hydroxychloroquine or
chlorambucil may be used.

Eye and skin lesions may be managed with topical corticosteroids (eye
drops, creams or injections). Laser surgery has been used in treating
disfiguring skin plaques and lupus pernio.

It is often difficult to know when to start treatment, what drugs and
dose to prescribe, and how long to treat for, as the disease can often
resolve without any tratment. The decision depends on the organ
systems involved and how far the inflammation or granuloma formation
has progressed.

Monitoring the disease is essential as treatment can then be modified
accordingly.
How serious is sarcoidosis and what is the prognosis?

In general, sarcoidosis appears briefly and resolves without relapse
in most cases. 20-30% of patients are left with some permanent lung
damage and 10-15% develop chronic sarcoidosis that may last for many
years.

In 5-10% of cases the disease can become fatal if either granulomas or
fibrosis seriously affects vital organs such as the lungs, heart,
nervous system, liver or kidneys. End-stage lung disease may need lung
transplantation.

Cutaneous sarcoidosis usually has a prolonged course. Papules and
nodules tend to resolve over months or years, whilst plaques may be
more resistant. Lupus pernio is often present in patients with chronic
fibrotic sarcoidosis and is associated with involvement of the upper
respiratory tract, advanced lung fibrosis, bone cysts and eye disease.

With correct diagnosis and proper management, most patients with
sarcoidosis continue to lead a normal life.
Related information
On DermNet:

* Erythema nodosum
* Erythema multiforme
* Nummular eczema

Other web sites:

Sarcoidosis from emedicine dermatology, the online textbook

* Sarcoidosis: U.S. Department of Health and Human Services, Public
Health Service, National Institutes of Health, National Heart, Lung,
and Blood Institute
* Sarcoidosis: A Primary Care Review — American Academy of Family
Physicians

[Susan]

I have been diagnosed with sarcoidosis and feel that my local hospital are not taking this seriously. My breathing is frightening followed with a cough and I know that this disease is the one thing that is going to end my days. Instead of the treatment I have had making me better and the sister saying the treatment has not worked, I am still to continue with the medication and I did not get to see the consultant regarding this and I know I am getting worse. Is Sarcoidosis life threatening or not because I do know it is debilitating and life is no longer what it used to be. I live on my own with no-one to turn to or sound off with this matter. I am a white English girl age 55 feeling that I no longer have any prospects or proper help here.

[Shaun]

I can not. What I can say is I'm going through what your going through and everything will be okay. I recently had a biopsy that everyone thought to be cancer throughout my chest stomach and clavical area. They wanted to start chemo last Tuesday. The surgeon biopsied my lymph gland in my left arm. Lumps in both so it was my choice. Not Cancer I was relieved. My breath is also short sometimes painful, heart attack like, as if I know what that may feel like. I know you need to stay strong, remove what gets you down in life and find support. I'm going through this alone myself, some people do worry. But for the most part my oncologist whom misdiagnosed me with recurring Hodgkin's lymphoma wants to see me a month from sometime. I have radically changed my diet, cleansing my body of toxins and always staying positive. Your not alone. Thats the reason behind this. Thank you.

[Shaun Jonilionis]

I just last year was diagnosed correctly with sarcodosis. But prior to that I have been through surgery, radiation and chemotherapy for Hodgkin's lymphoma. Who believes that? I had mono when I was younger. And had tonsils removed at common 13 year mark. Tonsils are now known to be pretty vital in the human bodies immune system. After all the tonsils are the first line of defense in (immune) system. I had lumps in my groin that after three years of showing them to people(you could grab them like golf balls) I finally had them biopsied. I haven't ever seen the lab test results proving POPCORN cells in my blood(pathology) so I'm not convinced I ever had Hodgkin's lymphoma. I believe after my tonsils removed my immune system had a problem. That problem was simply not being able to keep up so now sarcoid(immune system response is messed up. Especially after having glands removed in my groin. The lymph system is just that a system. Mine was altered. I still have a my port from chemo I didn't need. I also had the choice after noticing lumps by each elbow and chose the left. A P.E.T. scan ( I think I have had 8 of those unneeded doses of radiation) thus whole time I was told a few weeks ago that I have not been needing P.E.T. scans but CT scans. Anyway sarcoid yeah. man life is somethin.

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