Sarcoidosis Symptoms, Stages, Statistics

Instead of putting all this information in Surviving Sarcoidosis Against All Odds, a book & audio series about overcoming this seemingly incurable disease naturally, we decided to add it here to help you get more information and education about Sarcoidosis symptoms, common treatment, side effects of medication and some facts and figures.  Be sure to subscribe below to get 4 chapters of our book about how to overcome Sarcoidosis symptoms naturally, avoid side effects, costly and invasive surgeries and many more nights spent searching for hope to heal this nasty disease.



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Sarcoidosis Symptoms, Treatment, Stages, Facts & Figures

Sarcoidosis knows no cause or cure & has no proof of being hereditary.  Sarcoidosis almost always involves the lungs, but it can also affect the skin, eyes, nose, muscles, heart, liver, spleen, bowel, kidney, testes, nerves, lymph nodes, joints, and brain.

As of October 2013 there are only 1 million people on the planet that have been diagnosed with Sarcoidosis.  Sarcoidosis is most common in Scandinavian countries where more than 60 people per 100,000 get Sarc. It almost never occurs after the age of 60 and is very rare in children.  40 out of every 100,000 African Americans get Sarcoidosis and 5-10 of every 100,000 Caucasians.

What Is Sarcoidosis?

Sarcoidosis is a disease that causes inflammation of the body’s tissues.  It affects multiple systems and is characterized by the formation of granulomas (small lumps) that can be either inside the body or on the body’s exterior.  Sarcoidosis predominantly affects the lung and the lymphatic system, but virtually any organ can be involved.  Sarcoidosis can easily escape diagnosis and to this date is considered and autoimmune related disease but there is much debate about classing it as and autoimmune disease itself.

In sarcoidosis, immune system cells that cause inflammation overreact and cluster together to form tiny lumps called granulomas. If too many of these granulomas form in one organ, it may not be able to work correctly. For example, if the granulomas damage healthy tissue in the lungs, scarring and stiffness may occur and limit how much air the lungs can hold. This condition is known as pulmonary fibrosis. The most common cause of mortality associated with sarcoidosis is pulmonary fibrosis resulting from the disease.1  These lumps are not malignant but cause several different Sarcoidosis symptoms which we will discuss further but first let’s talk about what causes Sarcoidosis.

Cause Of Sarcoidosis

Some researchers believe that sarcoidosis results from a respiratory infection caused by a virus, bacteria, or an unidentified environmental toxin. There is also some evidence of a genetic basis for sarcoidosis. Current theories are that sarcoidosis develops from an interaction between a preexisting genetic risk for it and a triggering event, such as an infection or environmental exposure.2

Truth be known, there is no confirmed cause or cure for Sarcoidosis.  More research is needed to determine the exact cause for this disease but the epigenome is what we believe to be the key to unlocking all the answers and as the science of epigenetics advances we get closer and closer to finding a cure.  For those suffering with Sarcoidosis symptoms this is great news because it means there are several lifestyle changes they can make now to stop the progression and possibly reverse Sarcoidosis completely.

Sarcoidosis Symptoms

In more than 90 percent of cases, sarcoidosis affects the lungs. Respiratory symptoms are present in one-third to half of cases, such as shortness of breath, dry cough, and chest pain.3  In the last 9 years that we have been helping people with Sarcoidosis and fighting it ourselves, the 3 most common sarcoidosis symptoms people bring up are extreme fatigue, body aches and pain and difficulty breathing.  Flare ups come and go but for those with chronic Sarcoidosis that lasts many years it can be more than debilitating.

Other common symptoms include fatigue, shortness of breath, lymph node swelling or soreness, weight loss, and reddened, watery, or sore eyes. In some cases, symptoms can also appear outside of the lungs, such as lumps, ulcers, discolored skin or skin sores on the back, arms, legs, scalp and face.4

Skin — Skin lesions of different types can occur on the face, neck, arms, legs, or trunk. These lesions range from subtle, painless rashes to deep scars. People with more severe disease involving the internal organs often have more severe skin lesions.

Eyes — Involvement of the eyes can cause inflammation of different eye structures, including the iris, retina, or cornea. Glaucoma, cataracts, and blindness are late complications of untreated sarcoidosis. Because some sarcoidosis-related eye problems do not cause symptoms, it is important that all patients with sarcoidosis have an annual eye evaluation that includes an examination while the eyes are dilated.

Kidney — Abnormalities in the way the body handles calcium can occur and, if untreated, it may rarely lead to kidney failure. Small nodules (granulomas) may also develop in the kidney, leading to abnormal kidney function. Patients with sarcoidosis should have kidney function testing (usually with blood and/or urine tests) as part of their initial evaluation and follow up testing.

Heart — Nodules may develop in the heart, interfering with its electrical conduction system. This can result in abnormal heart rhythms and even death. An electrocardiogram (also referred to as an ECG or EKG) can generally detect abnormalities in the heart’s electrical conduction. Damage and scarring of the lung and lung blood vessels (called pulmonary hypertension) rarely makes it more difficult for the heart to pump blood through the lungs. This condition can lead to failure of the heart’s right ventricle.

Nervous system — Neurologic involvement affects approximately 5 percent of patients with sarcoidosis, and may be the first sign of the condition. In the late stages of the disease meningitis, or inflammation of the membranes covering the base of the brain, it can cause impaired function of certain brain structures, including the pituitary gland, in addition to facial weakness or paralysis. The disease may also affect the nerves in the arms and legs, resulting in muscle weakness, numbness or tingling, and pain.

Musculoskeletal system — 10 to 15% of people have musculoskeletal involvement, resulting in joint pain and swelling, changes in bone structure, or muscle discomfort and pain.

Reproductive system — Sarcoidosis can affect the male reproductive system, particularly the testes, and may cause male infertility. The disease rarely affects the female reproductive system. Sarcoidosis does not increase the risk of complications during pregnancy; however, the disease may worsen after the birth of the child. Therefore, a chest x-ray is recommended for women with sarcoidosis within six months after delivery.

Other organs — Enlargement of lymph nodes, especially those in the chest, occurs frequently. The liver or spleen can also be affected. Involvement of the spleen may lead to anemia and other blood abnormalities.


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Stages Of Sarcoidosis

It was an honor to share the podium with Dr Raghu at this years 2013 Sarcoidosis Conference at OHSU.  He is one of very few Sarcoidosis specialists in the world and has spoke at WASOG.  He explains the stages of Sarcoidosis as:

Stage 1:  Involving only the lymph nodes

Stage 2: Lymph node involvement and some scaring

Stage 3: Sarcoidosis is present in multiple organs of the body

Stage 4: lungs are distorted, with scar tissue and progressive granulomas, possible lung transplant needed

Traditional Medications For Sarcoidosis

Sarcoidosis symptoms emedicineImmune suppressants are the most commonly given but they will not necessarily reduce the symptoms you are suffering.  30-50% of people experience relief while using prescriptions medication but they come with an added price to your health so be aware of the many side effects.  It is also common for Sarkies to have multiple diseases which makes it even more difficult to tell the difference between Sarcoidosis symptoms and side effects due to medications.  Surviving Sarcoidosis Against All Odds offers several natural lifestyle changes that help to relieve these side effects without adrenal crisis.

Corticosteroid – Prednisone, methylprednisolone, etc.  Corticosteroids are the mainstay of Sarcoidosis treatment  and have been used since 1952.

Side effects include mood swings, bone demineralization, obesity, hirsutism, acne, gastric irritation, insomnia, and hypertension as well as mild facial changes resembling Cushing’s syndrome.   Prolonged use can cause osteoporosis, diabetes, high blood pressure, cataracts, glaucoma and other serious conditions.

Azathioprine –  side effects: upset stomach, stomach pain, mouth sores, muscle aches, flu-like symptoms, yellowing of the skin or eyes and blurred vision.

Methotrexate – A chemo medication originally used for leukemia.  Methotrexate therapy has allowed some patients undergoing treatment to discontinue or reduce prednisone use.  Side effects – vomiting, upset stomach, headache, dizziness, tired feeling; or blurred vision.

Serious: dry cough, shortness of breath; diarrhea, vomiting, white patches or sores inside your mouth or on your lips; blood in your urine or stools; swelling, rapid weight gain, little or no urinating; seizure (convulsions); fever, chills, body aches, flu symptoms; pale skin, easy bruising, unusual bleeding, weakness, feeling light-headed or short of breath; nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or severe skin reaction — fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.6

Hydroxychloroquine – When taking this medication you should have your eyes checked every 3 months.  Some people taking this medication over long periods of time or at high doses have developed irreversible damage to the retina of the eye. Stop taking hydroxychloroquine and call your doctor at once if you have trouble focusing, if you see light streaks or flashes in your vision, or if you notice any swelling or color changes in your eyes.

Serious side effect: muscle weakness, twitching, or uncontrolled movement; loss of balance or coordination; blurred vision, light sensitivity, seeing halos around lights; pale skin, easy bruising or bleeding; confusion, unusual thoughts or behavior; or seizure (convulsions).

Less serious: headache, ringing in your ears, spinning sensation; nausea, vomiting, stomach pain; loss of appetite, weight loss; mood changes, feeling nervous or irritable; skin rash or itching; or hair loss.

Cyclophosphamide – side effects can include nausea, weight loss, hair loss, acne, darkened and thickened skin, mouth blisters, and fatigue.

Infliximab – common side effects: stuffy nose, sinus pain, headache; mild stomach pain; mild skin rash; or flushing (warmth, redness, or tingly feeling).

Serious: fever, night sweats, weight loss, tiredness; feeling full after eating only a small amount; pain in your upper stomach that may spread to your shoulder; easy bruising or bleeding, pale skin, feeling light-headed or short of breath, rapid heart rate; or nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes). signs of infection (fever, chills, flu symptoms, confusion, or pain, warmth, or redness of your skin); chest pain, ongoing cough, coughing up mucus or blood; shortness of breath with swelling of your ankles or feet, rapid weight gain; numbness or tingling; weak feeling in your arms or legs; problems with vision; neck stiffness, seizure (convulsions); pain or burning when you urinate; or red, purple, or scaly skin rash, hair loss, joint or muscle pain, mouth sores.

sarcoidosis symptoms treatment


All of these drugs cause numerous side effects and rob the body of much needed nutrients which keep us healthy.  In our book & wellness series, we share multiple ways in which you can help your body fight back naturally even if you are currently taking any of these drugs and undergoing traditional Sarcoidosis treatment.   If you are looking for effective and non-invasive options that are proven to help your body fight back and live a better quality of life, please consider purchasing Education Beats Medication Against All Odds for $27.  It’s everything we wish we knew the day Jack was diagnosed with Sarcoidosis and everything he’s done to remain in remission since 2009.

Thank you,

Dani Walker

1. Nunes H, Bouvry D, Soler P, Valeyre D.Sarcoidosis. Orphanet Journal of Rare Diseases. 2007; 2(46)
2. National Heart, Lung and Blood Institute. Diseases and Conditions Index. Sarcoidosis: Causes. February 2009. Available at November 9, 2009.
3. American Thoracic Society.Statement on Sarcoidosis.American Journal of Respiratory Critical Care medicine.Vol.160(2); 1999.
4. National Heart, Lung and Blood Institute. Diseases and Conditions Index. Sarcoidosis: Signs & Symptoms. February 2009. Available at November 9, 2009.
5. National Heart, Lung and Blood Institute.Diseases and Conditions Index.Sarcoidosis: Diagnosis.February 2009.Available at December 8, 2009
6. Methotrexate side effects  sarcoidosis symptoms

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