Lesser-known disease

6 things to share with patients about sarcoidosis

This uncommon inflammatory disease affecting the lungs is often misdiagnosed. Here’s what your patients who have sarcoidosis should know.

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Sarcoidosis is an inflammatory disease that can affect any organ. Most people who have sarcoidosis have few signs of the disease. It is most often diagnosed when a chest x-ray is done for another reason, and is found to be abnormal. However, because sarcoidosis can affect the entire body, a wide variety of symptoms may be seen with the disease, including fatigue, night sweats, headaches, joint pain and more.

Sarcoidosis is no longer considered a rare disease but it is still relatively uncommon and often missed by health care providers.

If you have patients with sarcoidosis, the following is useful information to share with them:

1. They are not alone. While the disease is not well-known, it is estimated that there are more than 200,000 people living with sarcoidosis in the U.S.

2. It’s often misdiagnosed. “About 90 percent of patients suffer from granulomas in the lungs that result from inflammation,” says Daniel Culver, DO, director of the Interstitial Lung Disease Program at the Cleveland Clinic. “The symptoms, which can include coughing, wheezing and chest discomfort, are often misdiagnosed as asthma.”

3. Adults in their 20s and 30s are most susceptible. Sarcoidosis can affect people of any age, race and gender. Mostly, though, the disease strikes adults between the ages of 20 and 40, although a number of studies have suggested a second peak after 50 years, especially in women. In the U.S., the average age of sarcoidosis diagnosis is over 55 years old, according to Dr. Culver. It is most common in African-Americans and people of Northern European—particularly Scandinavian—descent. The disease is slightly more common in women than in men.

4. The disease manifests differently in different groups of people. While the lungs and lymph nodes are affected in almost everyone who has sarcoidosis, African-Americans and people of Japanese descent are more likely to have eye involvement than Caucasians. Skin lumps are most likely to affect people of Northern European descent, and those with a Japanese background.

5. Symptoms may come and go. Sarcoidosis can mimic a bad cold leading patients to believe they are suffering from the flu rather than a chronic disease. Additionally, sarcoidosis symptoms often overlap with other illnesses, which can hinder diagnosis.

6. Steroids are not always the treatment answer. Prednisone, a potent anti-inflammatory steroid, is the standard treatment for sarcoidosis. However, Dr. Culver urges caution due to the drug’s long-term side effects such as cataracts, bone loss and weakening of the immune system. Because sarcoidosis often takes years to resolve, treatment regimens should be developed with that timeline in mind, he says. A steroid-sparing regimen, which can include an immunosuppressant such as methotrexate, may be an option, says Dr. Culver.

Further reading:

What physicians need to know about sarcoidosis

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7 comments

  2. Tepora

    Hi my name is Tepora and I have Sarcoidosis and living in Brisbane Australia. I am a Polynesian and 53 years old. My Sarcoidosis is on my skin arms, ear and nose and neck. I cope by living each day as it approaches and am thankful to God for my life.

    Reply

  3. Tammy

    Hi all-

    I recently had a cyst removed from my forearm, only to find out it was a sarcoid granuloma. I have had bilateral joint pain that came and went before I got to see the rheumatologist, my heart is good and lungs are clear, however, I have enlarged lymphnodes in between my lungs and upwards towards my esophagus. I have had a problem with sinusitis a lot and get a good case of bronchitis every other year it seems. My primary doctor only has 1 other sarcoid patient and is very slow at getting me referred to the specialists I feel that I need. Is it unreasonable for me to want an ear, nose, and throat specialist given my history of chronic sinusitis issues? I feel as if I need a scan head to toe to see where else this sarcoidosis stuff resides. Also found a dent or small groove at the top of my skull recently. Knowing this disease can be just about anywhere I am kind of freaked out about ot masking something more serious like Hodgkins lymphoma or something. Is it best to seek out medical advice from a sarcoidosis specialty group of doctors so they can coordinate my care? I feel like I am the only one pushing for answers. Any suggestions would be appreciated.

    Reply

  4. Sandy Knight

    I was diagnosed in March with Pulmonary Sarcoidosis. It has attacked my kidneys and I currently have shingles and another UTI. I have a new PCP and I’m not sure if he is able to take care of me. I am very insecure presently. I take 40 mg of prednisone every day, that’s enough to make you crazy in it’s self. I have been hospitalized three times since March. The prednisone has turned me into a full-fledged diabetic. I’m really not sure which way to turn.

    Reply

  5. Ray

    I hope this helps your community. I have it. I FOUND OUT AT 22 AND IM 35. IT TOOK MY SIGHT FROM MY RIGHT EYE. IM ALWAYS IN BODY PAIN AND IYZ DEGENERATIVE IN MY CASE. THE SPECALIST I SAW EXPLAINED MY CASE IS MOST RARE. AS I DONT SHOW A SURFACE REATION FOR THE PAIN. I WOULF URGE YOU TO BE AWARE OF THR COGNITIVE AND BEHAVIOR CHANGES THAT COME WITH MY CASE. SCARDOSIS WILL CHANGE YOU

    Reply

  6. Gina Garrison

    I was 58, and within a month I had myocardia and couldn’t get my heart rate down from 135 and had multiple test ran. After 5 months my heart rate dropped to 47 and then 35 and I was rush to the hospital for a pacemaker. I was able to get stable enough to get a PET scan. With a biopsy done on my left eye gland, I was diagnosed with Sarcoidosis in my left eye, heart, lungs, spleen, spine and pelvic. After learning more able the disease, I realized a lot of my health issues throughout the years was Sarcoidosis. I’m now with a Sarcoidosis Clinic and my team is working on my treatment with Prednisone and Methotrexate, etc. I just turned 59 and now I have a pacemaker and I’m dealing with Sarcoidosis in multiple areas of my body. It can really be scary at times to think how close I came to complete heart failure with a Sarcoid giving me an electrical block in my heart.

    Reply

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