The Autoimmune Disease Known As Sarcoidosis: One Person's Experience

What is sarcoidosis? It is an autoimmune disease. What it does, how it's treated, and a brief explanation of my experience with it.

A Brief Introduction To Myself And Sarcodosis

I am Theresa Schmidt but everyone calls me Terrie. About 6 ½ years ago, I got really sick with what I thought was the flu. I got well or so I thought. But then I got sick again and got well. I kept doing this cycle for about 2 years, including seeing my doctor at the HMO that carried my health insurance. Finally, I was diagnosed with an autoimmune disease known as sarcoidosis. I am hoping to explain what sarcoidosis is and what it is like living with it. At the end of the information, I'll give you some of my experience with this.


I am going to give definitions of Sarcoidosis and a few other terms so it will be clear what I mean when I use them.

Sarcoidosis is a chronic, systemic, granulomatous, autoimmune disease of unknown origin, though there is currently no known cure, there are medication treatments available. It's also known as sarcoid.

Chronic means it occurs over a long period of time. As there is still no known cure, one sarcoid is contracted, it could stay with the patient for the rest of his or her life, however there have been cases of sarcoidosis clearing up.

Systemic refers to the fact that sarcoidosis can affect virtually any body system and/or organ in the body.

Granulomatous refers to small inflammatory nodules, called granulomas, which form in the affected tissue.

Granulomas are groups of immune cells, which are normally a part of the body's defense system.

A.C.E or Angio-tensin Converting Enzyme. This regulates arterial pressure. An elevated level may show up in a blood test. This is one way that people are accidentally diagnosed with sarcoidosis. An elevated A.C.E. level can also indicate other diseases like leprosy.

Autoimmune diseases are characterized by a specific response against components of the body's own tissues. The body's immune system identifies tissue, organs, and bodily systems as alien matters. So it reacts to eliminate them.

Signs And Symptoms

Sometimes when only the lungs are affected, there may either be no signs or symptoms. And sometimes signs and symptoms could be minimal. As this disease progresses, the signs and symptoms may include:

1. Vague feeling of discomfort and fatigue.

2. Fever.

3. Weight loss.

4. Shortness of breath.

5. Cough.

6. Raised skin eruptions.

As many as half of all people with sarcoidosis won't exhibit any signs and symptoms. They might be accidentally diagnosed when they are examined for other reasons. One way is through a blood test to determine an A.C.E. Level.

Approximately 90% of cases, the lungs are affected.

Screening And Diagnosis

Often sarcoidosis is not discovered in the early stages when there is only a few symptoms.

A lot of times, a routine chest x-ray reveals abnormalities in the lung tissue or the enlargement of lymph nodes in nearby areas.

Chest x-rays

A series of chest x-rays can give the doctor a better view of the effects and changes in the lungs.

Lung Function Tests

This tests the lungs and the lungs' ability to put oxygen into the blood and take carbon dioxide out of the blood. Sarcoidosis can impair the way that the lungs do these functions.


A bronchoscopy is when a doctor inserts a thin, flexible tube into the airway to see inside the air passages and get a tissue sample to examine. This tissue sample is called a biopsy.


Sometimes a tissue sample might be taken from the skin, lymph nodes, or the eye's outer membrane to be examined for granulomas, if these areas seem to be affected.


Treatment depends on the organs and systems involved. It can also depend on the severity and the disease's overall course. Sometimes treatment might not be necessary. If it is necessary to be treated, it could involve taking a medication called Prednisone. The amount of time that the patient spends could depend on the same considerations that I already mentioned. It could be a year, or in my case, since I was diagnosed, which was 4 ½ years ago.

Prednisone is an anti-inflammatory corticosteroid that is prescribed for helping to control sarcoidosis. Corticosteroid means it's a steroid like cortisone. The doctor depending on the severity of the sarcoidosis determines whether or not the patient needs Prednisone and what the dosage should be.

Side effects, like with any medication, can be a worry. Prednisone is no exception. Because of the side effects, prednisone is only prescribed if the impairment is severe enough.

The side effects include:

1. Bone thinning-Osteoporosis

2. Weight gain

3. Diabetes

4. Increased risks for some infections*

5. Redistribution of body fat.

* Prednisone suppresses the immune system.

My Story

Back in 1993, around Thanksgiving, I got sick with what I thought was the flu. I was sick for about a week. I thought that I had gotten well.

Well, the "flu" kept coming back. Since it was winter, being in Washington State, and having a really bad flu season that year, I figured it would be just one of those things that I got it 2 or 3 times. But I kept getting it, even in the spring, summer, and fall. I had my primary doctor at my HMO, where I was met with his bad attitude and diagnosis' of bronchitis, asthma, and walking pneumonia. This went on for approximately 2 years.

Finally, I was sent to an internist. She and I talked about my family medical history. We also talked about what types of conditions that I might have, such as cystic fibrosis, tuberculosis, etc. We ruled out cystic fibrosis because there was no genetic history of it in my family. Between a TB skin and chest x-rays, we ruled out tuberculosis. She ordered a blood test to be done. It included an A.C.E level, which turned out to be 100+. She referred me to a pulmonary specialist at another facility.

I met with him and we scheduled a bronchoscopy in December 1995. It meant going to the hospital as an outpatient for the bronchoscopy. In order to do this, they gave me a shot to put me to sleep and a breathing treatment that would freeze my throat. In the middle of talking to my doctor, I fell asleep on him mid sentence. I am sure he was grateful since it was one of the few times that I was left speechless.

I went for my follow-up in January 1996. The diagnosis was made. I had sarcoidosis. The doctor prescribed 40 mg of prednisone daily. I worked for about 1½ years after the diagnosis was made when I needed to go on disability.

We have been decreasing the amount of prednisone that I take over the last few years. Currently I take 10 mg of prednisone on alternating days. I am doing okay but I have good and bad days. A lot of things cause me to have difficulty with breathing and there are limits to what I can do. I am grateful that I am still here.

When I started taking prednisone, I noticed the side effects immediately. Prior to getting sick, I was a runner. I ran from 1 to 10 miles daily. That dropped to 5 or less miles daily. When I started prednisone, forget running, I had trouble walking 1 block. As for weight gain because of prednisone, I gained 100 pounds, which I have never been happy about. I catch illnesses left and right, from the common cold to pneumonia twice in the last 3 years.

Today I walk 1 ½ miles daily. I am hoping and looking forward to going back running. I feel better than I used to. Like I said, I have good and bad days, but hoping to go back to work at some point. There is hope yet.

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