 The following information is provided as a
monthly resource to patients and professionals seeking up-to-date information on sarcoidosis.
If you would like to submit a question, please use the 'Contact
FSR' form. If your question is used, we will not publish
your name.
Question of the Month:
Although I was diagnosed two years ago, I have been having new problems
recently and I feel very isolated. How can I find someone to talk
to who understands my symptoms?
Answer: Sarcoidosis is a
multi-system disorder. Symptoms typically depend on which organs the
disease affects and often the physical symptoms are life-altering.
In addition, about one-third of all patients experience non-specific
symptoms that include fever, fatigue, night sweats and an overall
feeling of ill-health, forcing many patients to limit activities they
once enjoyed. Unfortunately, patients report these symptoms are the most
likely to be dismissed by their doctors and sometimes their family and
friends.
It is probably no surprise that long term illness can cause emotional
problems along with the physical ones. Research shows that more than
half of people with sarcoidosis symptoms also show signs of clinical
depression. Among the most likely to be depressed are people who have
severe disease, who have limited access to medical care, or who have
trouble paying for their medical care. Being a woman is also a risk
factor. Persistent feelings of sadness, emptiness and anxiety are
all signs of depression that you should discuss with your doctor.
Talking with and learning from others who have had similar experiences
may also help you face the challenges of coping with sarcoidosis.
FSR has two programs that can help put you in contact with other
sarcoidosis patients. More than 1000 patients are actively
participating in an online support group called the FSR Sarcoidosis
Community - in addition to finding topics of common interest you can
search for patients who are in your area. Through our new Sarcoid Life Directory you can
also locate active in-person support groups.
Recently Asked Questions
For questions submitted more than six months ago, please visit our Archive.
What new research is being done in
sarcoidosis, and how can I offer my support?
Research is currently underway
to improve the diagnosis and treatment of sarcoidosis and to find new
medicines that are as effective as corticosteroids, like prednisone, but
have fewer side effects. In addition, genetic researchers are
trying to find out how people become predisposed to develop sarcoidosis
in the first place and why people of different races are affected
differently. You can learn about physicians who are
conducting research on sarcoidosis by searching in 'Computer
Retrieval of Information on Scientific Projects' (CRISP),
a database of federally funded biomedical research projects
conducted at universities, hospitals and other research institutions.
Use their online query form to select the search term 'sarcoidosis'. In addition, clinical studies (sometimes
called trials or protocols) are medical research studies in which people
participate as volunteers are another way of developing new treatments
and medications. Visit the Clinical Trials section of this site for more details on active
trials and how you can participate. Tissue donation can provide patients with
another way to help diminish the impact of diseases like sarcoidosis.
The National Disease Research Interchange (NDRI), is a non-profit
organization dedicated to the collection and preservation of human
cells, tissues and organs and distribution of these tissues to
researchers. Learn more about FSR's partnership with NDRI to accelerate tissue collection.
FSR's Research Grants Program is the
nation's first and only privately funded program for sarcoidosis
research. This year, we will continue to focus our funding efforts
on critical gaps facing sarcoidosis research. Our most recent
financial award seeks to determine how blood cells become over-activated
in sarcoidosis patients and how these cells are involved in the
formation of granulomas. Researchers hope this information will
lead to an understanding of what causes the disease and suggest new
treatments. The Awards section of our site lists details about our most recent grants. We
hope you will consider a Donation to support our research programs.
What new
treatments are available for sarcoidosis patients?
Some people with sarcoidosis will not require any treatment at all.
However, estimates suggest that in up to 30 percent of people, the
disease lasts a long time or a lifetime. It can also worsen over
time. Corticosteroid medications are still considered the first
line of treatment for sarcoidosis that requires treatment.
Corticosteroids are also called glucocorticoids or steroids, and there are many different
medicines within the corticosteroid class of drugs, including cortisone,
prednisone, and prednisolone. For people who cannot take
corticosteroids, or when a combination drug treatment approach is
warranted, doctors might prescribe any of a host of other medications
that suppress the immune system and reduce inflammation, such as antimalarial medicines (hydroxychloroquine, chloroquine) and
immunosuppressant drugs. As their name implies, immunosuppressant
drugs suppress the immune system. While that might not seem like a
good idea, in a disease like sarcoidosis – where the immune system is
overactive – suppressing the immune system can help control symptoms,
reduce inflammation and prevent organ damage. There are a
number of different drugs in this category including: methotrexate,
mycophenolate mofetil, azathioprine and cyclophosphamide. A number of new treatments as well as
older medications that have not yet been tested much in people with
sarcoidosis might hold promise as sarcoidosis treatments.
Researchers are particularly interested in treatments that target
specific parts of the immune response. Among those with limited
study data are infliximab, etanercept, adalimumab, thalidomide,
pentoxifylline and tetracyclines. For a comprehensive listing of
current and potential treatments for sarcoidosis, visit the Treatment page of this Web site.
My sister was just diagnosed with sarcoidosis, what can we expect?
If you, or a family member, is diagnosed with sarcoidosis, you will
need to visit your doctor or team of doctors regularly, and you will
have frequent laboratory and imaging tests to monitor your treatment’s
progress. If you have the chronic type of sarcoidosis that doesn’t
resolve on its own, you might be on certain drugs for a long time, even
a lifetime, and you might also have to use certain medical devices or
undergo various medical procedures. Doctors can sometimes predict whether you
will have temporary or long-term sarcoidosis based on your symptoms.
Certain groups of symptoms seem to go with certain types of sarcoidosis.
The five x-ray stages of sarcoidosis can also help predict outcome.
For more information on factors associated with chronic sarcoidosis,
order the FSR brochure 'Sarcoidosis
and the Body'. Most people who receive an early and
accurate diagnosis can lead active lives if they receive competent care
and ongoing, effective treatment to prevent or halt organ damage.
Managing the side effects of your medications and making common-sense
lifestyle changes – such as quitting smoking, adopting healthy eating
habits, and getting enough exercise – are also crucial for staying
healthy when you have sarcoidosis.
My doctor has ordered a pulmonary function test, what can
I expect?
In addition to imaging scans and biopsies, your doctor might recommend
other tests to identify the extent of lung damage. Lung function tests, (also called
pulmonary function tests), measure how well your lungs are working, and
they can provide your doctor with a baseline measurement against which
disease progression or improvement can be measured in the future. The two most frequently used tests for
sarcoidosis are the spirometer test and the diffusion capacity test.
The spirometer uses a machine to measure how
fast you can exhale breath from your lungs. The diffusion capacity
test involves breathing in a very small amount of carbon monoxide gas for a breath or
two, then measuring the difference between the amount of the gas that
you inhaled vs. the amount you exhaled. The spirometer detects whether
you have trouble moving air in and out of your lungs and the capacity
test assesses how fast gas travels from your lungs to your blood. Since the tests can involve some forced
breathing and rapid breathing, some temporary shortness of breath or
lightheadedness may be experienced. Risks are minimal for most
people.
I have sarcoidosis, should I get a flu shot?
The ‘flu shot’ is an inactivated vaccine (containing killed virus)
that is given with a needle, usually in the arm. It is approved for use
in people 6 months of age and older, including healthy people and people
with chronic medical conditions like sarcoidosis.
In general, anyone who wants to reduce their chances of getting the flu
can get vaccinated. However, certain people should get vaccinated each
year because they may be at higher risk of having serious flu-related
complications. Sarcoidosis patients who have lung involvement or are
taking medications that suppress their immune system (corticosteroids,
methotrexate, and others) should discuss an annual flu shot with their
physician.
October or November is the best time to get vaccinated, but getting
vaccinated in December or even later can still be beneficial since most
influenza activity occurs in January or later in most years.
The nasal-spray flu vaccine (sometimes called LAIV for ‘Live Attenuated
Influenza Vaccine’) is made with live viruses and is not recommended for
those with chronic diseases. You should also talk with your doctor
before getting a flu shot if you have ever had a severe allergic
reaction to eggs or to a previous flu shot or if you have a history of
Guillain-Barré syndrome.
I have been experiencing joint pain in my ankles lately, is this common?
Sarcoidosis affects the bones and joints in up to one-third of people
who have the disease. Joint pain, stiffness, and/or swelling,
referred to as early-onset arthritis usually occurs in the first six
months of the disease, begins suddenly in one or both of the ankles
and/or feet, and sometimes spreads to the knees, toes, fingers, wrists,
and/or elbow joints. When it accompanies painful or red, raised bumps on the legs or arms (called erythema
nodosum) it usually goes away on
its own in a few weeks or months. Late-onset arthritis, which usually
occurs six months or more after sarcoidosis develops, is less painful
and affects fewer joints than early-onset arthritis (usually just the
knees and/or ankles). It is often associated with chronic skin symptoms
rather than with erythema nodosum. This type of arthritis can last a
long time or a lifetime, or it may come and go. It can cause
permanent joint damage and should be treated even when it is not
painful. It is a good idea to keep track of
changes in your condition and make a list of any new symptoms that you
have and mention them to your doctor at your next visit. This can
help your doctor find the most appropriate treatment for all of your
symptoms.
My doctor recommended I wear a Holter monitor, why?
In addition to imaging tools like computed tomography (CT) scans and
magnetic resonance imaging (MRI),
other tests are sometimes used to help diagnose sarcoidosis in the
heart. Electrocardiography and Holter monitoring are among the
simplest and most widely available tools for initial heart evaluations. An electrocardiograph test monitors your heart’s
electrical activity, producing an electrocardiogram (an ECG, or EKG, for
short), which is a graph of your heart rhythm and blood flow pattern
over a certain period of time.
Like an electrocardiograph test, a Holter monitor records your heart’s
electrical activity, but over a longer period – usually one or two days
– so your doctor can check for irregular heartbeats. With Holter
monitoring, you wear or carry with you a monitor that is attached to
electrodes on your chest. The device then produces a report that your
doctor can compare against the symptoms and activities you reported over
the time period that you wore the monitor. Although the test is not
specific for sarcoidosis, combined with other information, the results
can help give your doctor a more complete picture of your risk for
cardiac sarcoidosis. For more information, order the FSR
brochure, 'Sarcoidosis
and the Heart'.
My medical report says I have splenomegaly, is this serious?
The spleen is a large organ on the left side of your body under the
ribs that produces, filters, and maintains red blood cells and some
types of white blood cells. Along with the lymph nodes, the spleen is
part of the lymphatic system, which regulates blood cells and plays a
role in immunity. Splenomegaly
literally means enlarged spleen (splen = spleen and megaly =
enlargement). In sarcoidosis patients, spleen enlargement occurs when
inflammation and the formation of granulomas cause the spleen to swell.
Physical symptoms you might notice include pain or pressure in your
upper left abdomen under your ribs. Some of the problems sarcoidosis might cause when it
affects the spleen include anemia, which means that your
blood does not contain enough healthy red blood cells to carry a good
supply of oxygen to your body’s tissues, making you feel tired, leukopenia, which means that you do not have a healthy number of
white blood cells circulating through your body making you prone to
infections and thrombocytopenia, which means your body is
not producing enough blood platelets, which are necessary for blood
clotting. Your doctor may order laboratory tests to check for
anemia and other blood problems and if your white blood cell, red blood
cell, and/or platelet counts have dropped, your doctor might prescribe
medications or supplements to try and normalize these counts. In rare
cases, the spleen can become so enlarged from inflammation that all or
part of it must be removed. Good communication with your doctor
may mean that your treatment plan is more successful. Ask questions when
you do not understand what your doctor has said or understand the
meaning of a word. Tips for
talking with your doctor can be found here.
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. |
