Sarcoidosis - Symptoms

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What are signs and symptoms of sarcoidosis?

Shortness of breath (dyspnea) and a cough that won't go away can be among the first symptoms of sarcoidosis. But sarcoidosis can also show up suddenly with the appearance of skin rashes. Red bumps (erythema nodosum) on the face, arms, or shins and inflammation of the eyes are also common symptoms and signs.

It is not unusual, however, for sarcoidosis symptoms to be more general. Weight loss, fatigue, night sweats, fever, or just an overall feeling of ill health can also be clues to the disease.

Signs and symptoms that suggest possible sarcoidosis

In addition to the lungs and lymph nodes, the body organs more likely than others to be affected by sarcoidosis are the liver, skin, heart, nervous system, and kidneys, in that order of frequency. Patients can have symptoms related to the specific organ affected, they can have only general symptoms, or they can be without any symptoms whatsoever. Symptoms also can vary according to how long the illness has been under way, where the granulomas are forming, how much tissue has become affected, and whether the granulomatous process is still active.

Even when there are no symptoms, a doctor can sometimes detect signs of sarcoidosis during a routine examination, usually a chest X-ray, or when checking out another complaint. The patient's age and race or ethnic group can raise an additional red flag that a sign or symptom of illness could be related to sarcoidosis. Enlargement of the salivary or tear glands and cysts in bone tissue are also among sarcoidosis signals.

The lungs are usually the first site involved in sarcoidosis. Indeed, about nine out of 10 sarcoidosis patients have some type of lung problem, with nearly one-third of these patients showing some respiratory symptoms -- usually coughing, either dry or with phlegm, and dyspnea. Occasionally, patients have chest pain and a feeling of tightness in the chest.

It is thought that sarcoidosis of the lungs begins with inflammation of the alveoli (alveolitis), the tiny sac-like air spaces in the lungs where carbon dioxide and oxygen are exchanged. Alveolitis either clears up spontaneously or leads to granuloma formation. Eventually, fibrosis can form, causing the lung to stiffen and making breathing even more difficult.

Eye disease occurs in about 20%-30% of patients with sarcoidosis, particularly in children who get the disease. Almost any part of the eye can be affected -- the membranes of the eyelids, cornea, outer coat of the eyeball (sclera), retina, and lens. The eye involvement can start with no symptoms at all or with reddening or watery eyes. In a few cases, cataracts, glaucoma, and blindness can result.

The skin is affected in about 20% of sarcoidosis patients. Skin sarcoidosis is usually marked by small, raised patches on the face. Occasionally, the patches are purplish in color and larger. Patches can also appear on limbs, face, and buttocks.

Other symptoms include erythema nodosum, mostly on the legs and often accompanied by arthritis in the ankles, elbows, wrists, and hands. Erythema nodosum usually goes away, but other skin problems can persist. Virtually any organ or organ system can be involved in sarcoidosis.

Occasionally, sarcoidosis can lead to nervous system problems. For example, sarcoid granulomas can appear in the brain, spinal cord, and facial and optic nerves. Facial paralysis and other symptoms of nerve damage call for prompt treatment with medications such as high doses of cortisone (see below). Rarely, the heart may be involved in sarcoidosis, which can be a serious problem. People with sarcoidosis can have depression that is unrelated to the activity of the disease and is felt to be, in part, because of a misdirected immune system.

Symptoms can appear suddenly and then disappear. Sometimes, however, they can continue over a lifetime.

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See what others are saying

Comment from: Jenn, 45-54 Female (Patient) Published: March 08

I was officially diagnosed with sarcoidosis after a blood test revealed I had a high calcium level with severe dehydration which was exacerbating already present stage 3 kidney disease. At first I was diagnosed with cancer (so scary) due to what appeared to be metastatic lesions in my lungs which were visible on a CT scan. But blood tests revealed I had a high active form of vitamin D which was causing the calcium spike and a high ACE level which confirmed sarcoidosis which was causing the high active vitamin D level even though my regular vitamin D level was low. I had been taking high levels of vitamin D prescribed by my nephrologist too which is a big no-no when you have sarcoidosis but I didn't know I had it at the time. I believe I have had this disease for most of my life with intermittent bouts of various symptoms. I've had gastrointestinal issues, dry cough, rash under nose, sores in nose and mouth, hearing issues, eye issues, asthma, migraines and neck pain, back pain, joint pain, foot and toe pain, numbness in fingers, sinus issues, heart palpitations with chest pain, cold/night sweats, weight loss, chronic anemia, fatigue and now the worsening chronic kidney disease that I have been experiencing for the past decade has been determined to be caused by sarcoidosis. Prior to the diagnosis I had taken myself to many doctors including naturopaths explaining that I felt awful and no one was able to make a diagnosis, not even my internist of over 25 years could put the pieces together. The naturopaths all made it worse by putting me on vitamin D supplements. I have been misdiagnosed with several disorders including IBD (inflammatory bowel disease), plantar fasciitis, hair line fractures, gluten intolerance, hypertensive kidney disease, etc. I have always been sensitive to strong smells like moldy, musty odors and dust. Also, a lot of my symptoms would occur during times of emotional stress. Since my diagnosis in 2014, I avoid vitamin D and limit high calcium foods. I was on prednisone for 9 months and it helped slightly. I have been off of it for the last 8 months and I am experiencing ridiculous pain in both feet, neck, and finger joints. Just searching for a natural way to kick this into remission and trying to stay positive. This too shall pass.

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Comment from: LE, 45-54 Female (Patient) Published: March 15

I am 51 years old and was diagnosed 5 months ago with sarcoidosis. I thought I had Lyme disease due to all the join pain, swelling, and night sweats. The most noticeable pain was in my legs, upper and lower and a day later, red bruises appeared on the underside of my forearms; my wrists were swollen and painful too. My primary care doctor diagnosed it very quickly, not so much due to the swelling and pain, but due to the red bruises on my arms and around my ankles. She ordered a chest x-ray which showed something on my right lung so she then ordered a CAT scan which she confirmed was sarcoidosis. She put me on 40 mg of prednisone and referred me to a pulmonary doctor to monitor me since it was on my lung. I was on 40 mg for 2 weeks, then 30 mg for 2 weeks, then 20 mg for 2 weeks, then 10 for 2 weeks then 5 mg for a month. I felt great on 40 mg of prednisone, I didn't have one ache or pain! I did have trouble sleeping on that dosage so I took melatonin. It took 10 days for the swelling to go down in my ankles. I have been off of prednisone for 1 month. I walk 2 miles a day and try to drink lots of water. I am going to try taking fish oil based on what I read here and I do take an extra dose of vitamin D but after reading here that I shouldn't with this disease, I will ask my doctor about that. I am also going to increase my vegetable intake. I have no idea what caused it, something in the air I guess. I work at home and live in upstate New York where the air is pure. I am starting to think it was from leaf mold since I got it in the fall after the leaves all fell and we do have a camp in the woods. It seems to be at bay but every time I get an ache or pain, I think oh no! I will visit this site regularly for support.

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