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 The following information
taken from previously submitted questions is provided as a resource to patients and professionals seeking information on sarcoidosis.
For answers to questions submitted within the last six months, please
visit the Ask the Expert page.
If you would like to submit a question or ask for an update on one of
the questions below, please use the 'Contact
FSR' form. If your question is used, we will not publish
your name.
Previously Asked Questions (2006)
2004-2005 Questions
I have Stage III sarcoidosis, will I need
oxygen?
Oxygen is a gas that is necessary for all cells in the body to generate
energy and function properly. The air we breathe normally has about 21%
oxygen. This amount is enough for people with healthy lungs and most
patients with sarcoidosis. In some cases, however, patients may
have severely reduced lung function making them unable to gather enough
oxygen through normal breathing. Sarcoidosis patients with
hypoxemia (hypox = low levels of oxygen and
emia = in the blood) may need to use extra, or supplemental, oxygen to
continue normal bodily function. Supplemental oxygen is a medical treatment that requires
a prescription. How much you need and for how long is dependent on your
medical condition. In addition to your history and chest x-ray, your
doctor may use a variety of tests to assess your individual need
including pulmonary function tests which measure how well the lungs take
in and exhale air and how efficiently they transfer oxygen into the
blood as well as blood gas and oxygen saturation tests which measure
oxygen levels in the blood. Certain exercise tests can also help
determine how much oxygen you need. Although higher x-ray stages
may suggest worse symptoms and lung function, X-ray stages do not tell
the severity of the disease and alone would not determine need for
supplemental oxygen. The symptoms of hypoxemia can range from
difficulty breathing, headaches and fatigue to memory loss and mental
confusion. It is a good idea to
talk to your doctor
about any new symptoms you experience.
Why do some people with cardiac sarcoidosis need
pacemakers?
Sarcoidosis most commonly targets the lungs, but the disease can also
affect the heart, a condition called cardiac sarcoidosis. Any part
of the heart can be affected, ranging from the heart’s electrical
signaling system to the heart muscle and valves and the layers of tissue
that cover the heart. Most doctors treat cardiac sarcoidosis
with corticosteroid medications, which are also called glucocorticoids or steroids. These are powerful
drugs that can stop or prevent heart injury by reducing the inflammation
caused by sarcoidosis. Corticosteroids will reduce the
inflammation associated with granulomas, but they might not correct
irregular heartbeats or improve the heart’s pumping ability once
inflammation has already seriously damaged the heart muscle. For these
problems, doctors might prescribe an antiarrhythmia drug based your
specific symptoms and your medical and medication history. For people with serious arrhythmias or heart blockages, a
pacemaker or an automatic implantable defibrillator might also be
recommended. A pacemaker is a battery-operated device that is placed
under your skin to regulate your heart’s rhythm. An implantable
defibrillator is implanted near your heart, and it uses electrical
impulses to shock the heart back into a regular rhythm if it starts to
beat irregularly. If your heart stops altogether, the defibrillator can
shock it into beating again. More information on this topic can be
found in the
FSR
Brochure Sarcoidosis and the Heart.
My doctor has ordered a lung
biopsy, what is the process that I should expect?
A biopsy is the removal of a small piece of tissue for microscopic
examination and/or culture. Along with your office exam, biopsies are
used to help your doctor make a diagnosis of sarcoidosis. A thin,
flexible lighted tube called a bronchoscope (pronounced BRON-ko-skope) which examines the airways is
often used to guide your doctor in obtaining tissue samples from the
lungs. In addition to viewing abnormalities in your trachea and
bronchi (large air passages) and the mucosal lining of these
passageways, instruments may be passed through the tube to be used for
biopsy. Transbronchial needle aspiration uses a needle inserted
through the bronchoscope to penetrate the walls of the large airways
near enlarged lymph nodes. With the procedure known as transbronchial
lung biopsy, forceps are guided by an x-ray to obtain pieces of the lung
tissue including the alveoli (air sacs) and small airways. If the mucosa
(lining) looks abnormal, your doctor may do an endobronchial biopsy
which also uses foceps but takes samples of the lining of the airway in
the part of the lung seen directly through the scope. Your doctor
may also perform a procedure known as lavage to wash out the air sacs to
gather cells for culture and possibly identify infection. After they are removed, tissue samples are put in
fixative, then put on slides and stained for examination under a
microscope. Your doctor may have the results from staining in just a few
days. A culture is used to grow any micro-organisms found in your
sample. If a culture for infection is positive, meaning there is an
infection, you would normally know in about one to two weeks.
A biopsy which shows non-caseating granulomas with negative stains and
cultures for organisms can be used to diagnose sarcoidosis.
I have Carpal tunnel syndrome (CTS), should I have surgery?
Sarcoidosis can affect almost any organ in the body - this includes the
nervous system (the brain and all the body’s nerves). An organ is
affected when granulomas (masses of
inflamed tissue, or lumps) form and cause an abnormality. Carpal tunnel syndrome (CTS) is a painful progressive
condition caused by compression of a key nerve in the wrist. There are
some data suggesting that CTS is more common in sarcoidosis patients
than in the general population. However there are many other systemic
reasons for CTS and these should be considered when making treatment
decisions. Some patients with CTS may need to have surgery. However,
it depends on the underlying reason for the development of CTS. In sarcoidosis patients with CTS, the mechanism of the
CTS symptoms should be considered very carefully to determine the
specific cause. In cases where the condition is due to peripheral nerve
involvement from sarcoidosis or due to granulomatous inflammation in the
carpal tunnel, patients may respond to local or systemic treatment. If
the CTS is caused by anatomical narrowing of the tunnel, surgical
approaches could be considered.
How can I volunteer for a
research study?
Clinical studies (sometimes called trials or protocols) are medical
research studies in which people participate as volunteers and are one
way of developing new treatments and medications for diseases and
conditions. Clinical studies can also provide researchers
information that may be an important first step toward developing a
treatment. For example, research may show how a disease progresses
or how it affects others systems in the body. It is important to understand that some risks are
involved in clinical research, just as in routine medical care and
activities of daily living. The specific risks associated with any
research study should be described in detail in a written consent
document and by a member of the research team. Before deciding to
participate in a study, you should carefully weigh these risks against
possible benefits. You may or may not receive direct benefit for
yourself and your condition as a result of participating in research,
however, you will know that the knowledge learned by researchers may
help others. The National Institutes of Health has developed an
on-line searchable database that contains current information on
clinical research studies. Research studies typically provide free care
to those who participate. Visit
www.clinicaltrials.gov
and search 'sarcoidosis' to find information on current clinical trials.
If you conduct a ‘Focused Search’, you can learn about those studies on
sarcoidosis within your geographical area. Also, the Patient Recruitment
and Public Liaison Office at NIH maintains a toll-free number at
1-800-411-1222.
Is it OK for me to get a tattoo?
Although the lungs are the organ most often affected by patients with
sarcoidosis, the disease can affect almost any organ in the body,
including the skin. There are reports in the scientific literature of
the occurrence of sarcoidosis nodules, or lumps, affecting the skin
around previous scars from tattoos, piercings,
laser surgery and other areas of local skin injury (including
injections). For some people skin lesions in scars or tattoos may be
the first symptom of systemic sarcoidosis. It is important to keep in
mind, however, that the reaction in the tattoo is a manifestation, or
symptom, of sarcoidosis and not the cause. In terms of getting a new tattoo, it is possible that
nodules would form at the site of a new injection. Since tattooing
involves multiple injections of dye under the skin there may be other
health issues to consider. Poor infection control practices before,
during and after the procedure can lead to risk of infection. Talk to
your doctor about your plans and be sure to ask about any medications
that you are taking that might increase your risk for infection.
What is pulmonary
hypertension?
Pulmonary hypertension, also known as pulmonary arterial hypertension (PAH, is continuous high blood
pressure in the pulmonary artery, the primary blood vessel of the lungs.
PAH can be a serious complication of fibrosis, or scarring, in the lungs
due to sarcoidosis. When scar tissue forms due to sarcoidosis, the small
arteries in the lungs narrow and may eventually become blocked. As a
result, the heart must work harder to pump the blood through them. Over
time, the overworked heart muscle becomes weak and loses its ability to
pump enough blood to the lungs. Common symptoms of PAH include
difficulty in breathing, fatigue, dizziness, fainting spells, swelling
in the ankles or legs, bluish lips and skin, chest pain, and
palpitations. To diagnose PAH, your doctor may conduct a series of
tests to determine the pressure in your pulmonary artery and to find out
how well your heart and lungs are working. These tests can include chest
x-rays, electrocardiogram (ECG, EKG), echocardiogram and cardiac
catheterization. In addition to continuing their treatment for
sarcoidosis, patients may also receive treatments for PAH which include
specific heart medications, oxygen and, if needed, lung transplantation.
I have sarcoidosis, is it OK for me to
exercise?
Almost anyone, at any age, can improve their health by doing some type
of physical activity. And, you do not have to exercise at a high
intensity to get most health benefits. But, for people with certain
diseases, like sarcoidosis, it is important to check with your doctor
about how much and what type of exercise is right for you, particularly
if you plan to do strenuous activity (the kind that makes you breathe
hard and sweat). Research shows that even for patients with lung diseases,
avoiding activity altogether can have negative consequences. For
example, a patient with shortness of breath who avoids activity will end
up with weaker muscles, which in turn makes it harder to do exercise.
This creates a cycle leading to increased shortness of breath upon even
simple exertion. Scientists recognize the role that exercise can have on
our quality of life and research to test the specific effects of
exercise training in patients with sarcoidosis is ongoing, in the United
States and abroad. Before starting any exercise program, FSR recommends that
you consult with a knowledgeable physician about your personal risks.
Patients with heart involvement may have different restrictions than
those with sarcoidosis that affects their eyes or skin. However, some
risks are less obvious, for example, some medications can change your
natural heart rate, so your pulse rate may not be a good way to judge
how hard you should exercise. As a general guideline, if you are not already active,
you should begin slowly. Walking is an easy form of exercise for almost
everyone, and can be done using a shopping cart or walker for support if
needed. You can help your body prepare by taking time for a warm up and
cool down with deep breaths and stretching. Pay special attention to how
your body reacts to exercise. If you feel tired or short of breath, stop
and rest. Be sure to contact your doctor if you experience symptoms of
‘exercise intolerance’ which include: extreme fatigue, lightheadedness
or dizziness, severe muscle cramps, chest pain or pressure, severe joint
pain, coughing and excessive sweating or nausea.
I have sarcoidosis in my lungs, do I need to have my
eyes tested?
Sarcoidosis is a multi-system disorder that occurs most often in the
lungs. However, the disease can affect almost any organ in the body
including any part of the eye. In the U.S. about 12-30% of those
diagnosed with sarcoidosis will have ‘ocular’ involvement. When
sarcoidosis affects the eyes, common symptoms can include: burning,
itching, tearing, pain, red eye, sensitivity to light (called
photophobia), dryness, seeing black spots (called floaters) and blurred
vision. A condition called uveitis, which is
inflammation of the membranes (uvea) of the eye, can result in many of
these symptoms. In more serious cases, chronic uveitis can lead to
glaucoma, cataracts and blindness. Certain medications used to treat
sarcoidosis can also cause side effects related to vision. These drugs
include hydroxychloroquine (brand name Plaquenil®) and chloroquine
(brand name Aralen®). Use of corticosteroids can also lead to cataract
development. It IS important for everyone diagnosed with
sarcoidosis to have regular eye exams whether or not they have eye
symptoms. Eye tests that look at different parts of the eye can be used
to help diagnose and to monitor the disease. An opthamologist is a
doctor specially trained in the diagnosis and treatment of vision and
eye disorders. Patients should talk to their doctor to find out
how often eye tests need to be done. Tips for talking with your
doctor can be found here.
Can I reverse scarring in my
lungs caused by sarcoidosis?
In patients with sarcoidosis, the immune system does not function
properly and a type of blood cell becomes overactive. These overactive
cells release chemicals which cause granulomas (masses of inflamed tissue or lumps) to form in organs of the
body, most often the lungs. Factors which influence why some patients
with sarcoidosis develop fibrosis, or scarring, and others do not are
not well understood. Chest x-rays are often used to diagnose sarcoidosis
because x-ray beams cannot pass as easily through granulomatous or
scarred tissue as through normal tissue. Although x-ray stages do not
tell the severity of the disease, in general the higher the stage of the
x-ray, the worse the person’s symptoms and lung function. A 'Stage 4'
x-ray result shows scar tissue in the lungs. Once formed, scar tissue
can not be reversed. Scientists are currently testing several new drugs
which have been shown to reverse pulmonary fibrosis in animals. Two
abstracts recognized by the FSR through the 2005 WASOG meeting focus on
the development of pulmonary fibrosis.
Learn
more.
What is the difference between sarcoidosis and
Lofgren's syndrome?
Named for the Scandinavian
researcher Sven Löfgren who in the 1940's contributed new insights into
understanding sarcoidosis, Lofgren's syndrome is a form of acute
sarcoidosis that occurs for a short period with specific symptoms and
which affects specific areas of the body. Inflammation usually includes
the skin of the legs (erythema nodosum), the joints and the lymph glands
in the chest and occurs along with a fever. Patients with Lofgren's are
less likely to have chronic disease. Sarcoidosis is considered chronic
when symptoms last for more than three years. Many patients with
Lofgren's will experience remission, meaning their disease will go away
on its own without treatment.
I recently stopped treatment because my doctor said my
sarcoidosis is in remission, is it possible that
it will come back (or relapse)?
Sarcoidosis is a disease that causes inflammation. Treatment (such as
corticosteroids) can suppress the inflammation in almost everyone with
sarcoidosis. Treatment does not cause the underlying disease to undergo
remission. Once sarcoidosis inflammation develops, the disease generally
follows one of two courses. In about 50% of patients the inflammation
goes away on its own—that is, undergoes remission. This means that the
inflammation goes away and does not return even if treatment is stopped.
When sarcoidosis undergoes remission, it usually does so in the first
two to three years. In the other 50% of patients, the inflammation does
not undergo remission on its own, but is chronic. This means that when
treatment is stopped, the inflammation returns. It may take weeks or
months for symptoms to return after stopping treatment in chronic
sarcoidosis, because the inflammation may be slow to develop and it make
take awhile before organ function is affected. Current research does not
suggest that treatment with drugs such as corticosteroids has an impact
on whether sarcoidosis will undergo remission or become chronic.
Certain features of sarcoidosis may help predict whether sarcoidosis
will undergo remission or become chronic. For example, patients with a
skin eruption called erythema nodosum as part of a form of sarcoidosis
called Lofgren syndrome undergo remission about 80% of the time.
Patients with extensive scarring in the lungs or heart, who have spleen
enlargement or who have skin lesions on the face called lupus pernio
usually have chronic sarcoidosis. Sarcoidosis that continues for longer
than three years is also usually the chronic form. In most other cases,
particularly early in the course of sarcoidosis, it is impossible to
predict whether sarcoidosis will undergo remission or become chronic. In
these situations, treatment is often gradually stopped to see if the
inflammation returns in order to see whether the sarcoidosis has
undergone remission on its own, or may be chronic.
My family doctor recently diagnosed me with
sarcoidosis and suggested I see a specialist, what is a
pulmonologist?
A pulmonologist is a doctor who
specializes in the diagnosis and treatment of lung disorders and
breathing problems. This is the doctor often seen by sarcoidosis
patients because sarcoidosis affects the lungs in the majority of
patients. Pulmonologists can also treat asthma, COPD, cystic fibrosis
and tuberculosis. After medical school, pulmonologists complete three
years of hospital-based training (or residency) in internal medicine and
additional training in pulmonology. A 'board certified' pulmonologist is
someone who received board certification in internal medicine and then
completed additional training and passed the American Board of Internal
Medicine test in pulmonary disease. For more information on
understanding medical specialization, visit the
How to Find a Specialist section of this Web site.
The results of my chest x-ray
indicate ‘Stage 1’ sarcoidosis, what does this mean?
Because a chest x-ray may show granulomas, which appear as shadows or enlarged lymph glands in the
chest, they are one tool that doctors use to diagnose sarcoidosis. A
scale, from Stage 0 to Stage 4, is used to classify chest x-rays taken
to detect sarcoidosis. X-ray stages do not tell the severity of the
disease. However, in general the higher the stage of the x-ray, the
worse the person’s symptoms and lung function. Stage 0 is a normal chest
x-ray and Stage 4 shows scars (or fibrosis) in the lung tissue. There is
a lot of individual variation, and persons at Stages 0 through 3 may or
may not have symptoms. For more information on what each stage means,
talk to your doctor or read the FSR handout on Diagnosis for more
information.
What is the
ACCESS
study and how is it relevant to me?
ACCESS is an acronym which stands for A Case Control Etiologic Study
of Sarcoidosis. Sponsored by the National Heart, Lung, and
Blood Institute, this study was designed to determine the etiology
(or cause) of sarcoidosis and to look at socioeconomic
status of and disease progression in different patients.
Between 1997 and 1999, more than 700 patients with
sarcoidosis were registered at 10 clinical centers throughout the
United States.
Until ACCESS, studies in the United States focused on patients from
limited geographic regions or from selected populations
such as the Veterans Administration. More than half (64%) of
the patients enrolled in ACCESS were women and almost
half (44%) were African American. The sex and minority
representation in this study provided researchers with an
opportunity to compare sarcoidosis in these groups. However,
those with lung involvement may have been over-represented while
Hispanics, Asians and Native Americans may have been
under-represented. Data collection from ACCESS is ongoing and
has produced information on the risk for sarcoidosis among family
members and disease progress over time. (Visit the
Research News Archive
on the FSR
Web site for links to articles on ACCESS.)
Why is
sarcoidosis treated with the steroid Prednisone?
A
corticosteroid is a type of hormone naturally produced by the body's
adrenal glands. Prednisone is a synthetically produced (man-made)
corticosteroid. Corticosteroids are often referred to as
'steroids'. They are different than the anabolic steroids used by
athletes to build muscle. Corticosteroids reduce inflammation and
reduce activity of the immune system. In sarcoidosis, the immune
system causes inflammation that can damage different organs.
Treatment for sarcoidosis is generally done to control symptoms or
to improve the function of organs affected by the disease.
Prednisone almost always relieves symptoms due to inflammation.
I have trouble sleeping,
is this caused by my sarcoidosis?
Many people who are diagnosed with sarcoidosis find they cannot
sleep because they are worried about their disease. Compounding this
anxiety, about one-third of patients experience non specific
symptoms that include fever, fatigue, night sweats and an overall
feeling of ill-health. Additionally,
the standard medical treatment for sarcoidosis is corticosteroid
therapy (for example, Prednisone) which can cause sleep disruption. If you
are experiencing sleep problems, discuss them with you doctor or refer
to the FSR Press Release
from National Sleep Awareness Week for a list of sleep tips.
Is sarcoidosis contagious?
There is no evidence to suggest that sarcoidosis is contagious
or that someone can 'catch' the disease from another person.
What effect will sarcoidosis have on my pregnancy?
Sarcoidosis should not interfere with pregnancy if treated
appropriately. Sometimes, your condition
may actually improve during pregnancy because of the hormones
produced by your body. Occasionally the disease can worsen after
delivery of a baby. You and your doctor may want to discuss a
chest x-ray within six months of delivery to monitor possible
recurrence. If you plan to become pregnant, it is important to
talk to your doctor about the medications that you may be taking to
treat your sarcoidosis. All pregnant women, with or without
sarcoidosis, should have regular check-ups throughout pregnancy.
What is berylliosis
or beryllium disease?
Answer: Beryllium is a naturally occurring metal.
Because it is a good electrical and thermal
conductor it is used by a number of
industries. Unlike sarcoidosis, whose
cause is unknown, beryllium disease is an allergic reaction that
occurs when people are exposed to beryllium dust, mist or fumes.
Like sarcoidosis, beryllium disease primarily affects the lungs and
can cause inflammation and granulomas. Symptoms can include an
unexplained cough, shortness of breath, fatigue, weight loss and a
skin rash. Chest x-rays and blood tests are used to make a
diagnosis. Beryllium does not cause sarcoidosis. |
