Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: RosiePosie, 65-74 Female (Patient) Published: May 30

I did not have any symptoms. I had an abnormal chest x-ray. (I have to have one per year because I take Humira, a TNF blocker for rheumatoid arthritis. I then had to have a CT scan, which showed extensive non-calcified hilar adenopathy. A blood test then showed I had sarcoidosis. I have to have a bronchoscopy done as soon as a pulmonologist can see me, and I am so scared of the procedure because I have severe problems with anesthesia. Also, I must use my voice the next day and fear injury to my vocal cords.

Was this comment helpful?Yes
Comment from: DEBRA, 55-64 Female (Patient) Published: April 24

I've had sarcoidosis for about 10 years now and still have a feeling of fatigue. I have been experiencing some symptoms that are troubling. It's like I am having an allergic reaction to things: my lips will swell, sometimes an eye, I have been getting hives, and I have a rash-like eruption on my left foot. Also, the tips of my fingers get hot, swollen and sore. I looked this one up and it is called Raynaud's syndrome or phenomenon. This is very troubling and bothersome. I'm also wondering if this is something else.

Was this comment helpful?Yes
Comment from: kwolfe, 55-64 Female (Patient) Published: April 17

I was diagnosed with sarcoidosis last August when I was hospitalized with atrial fibrillation. I had received a double fracture to my leg and ankle and then a brown recluse spider bite on my non-fractured leg. The spider bite caused severe edema of my foot and leg and my fractured leg also developed edema. A chest CT scan showed five swollen lymph nodes and blood work showed a high level of antigens. Fluid pills did not work. I had lots of IV antibiotics and those were slow to work. I developed a rash all over my body. I finally used essential oils on my leg, and after five days the swelling began to subside. I had been having sarcoid symptoms for about 10 years before the diagnosis. I had pneumonia three times in one year and strep five times. I also had numerous sinus infections and severe leg cramps and bone pain. After three months of steroid treatments, I began to improve. Then I started experiencing severe weakness in my legs and arms and had to stop the steroids. I was put on nonsteroidal anti-inflammatory meds and kept having numbness in my arms, along with dizziness. I stopped those meds and now have continuous pain in my legs and back. I also get lots of headaches and have visual disturbances. I feel tired and sickly on a daily basis. I have difficulty concentrating and memory loss, depression, and general malaise.

Was this comment helpful?Yes
Comment from: Cynthia, 55-64 Female (Patient) Published: March 29

I've had sarcoidosis for more than 20 years and am a caregiver for my mother. My symptoms include hair loss, lung and breathing problems, along with pain in my eyes and back. I hope I can continue with my life.

Was this comment helpful?Yes
Comment from: mags, 55-64 Female (Patient) Published: March 13

I have been experiencing funny turns were I feel very unwell nausiated and have a taste in my mouth I also have dry eyes and mouth and keep developing very large red inflamed lumps on and around my nose when they finaly calm down they leave scarring. .

Was this comment helpful?Yes
Comment from: minnie40, 35-44 Female (Patient) Published: March 08

I have had sarcoidosis for 5 years my doctor said I have a very hard case. I had thyroid cancer before the sarcoidosis. It started with very high fevers weight loss, night sweats and feeling very tired. I went through a battery of testing for every other disease out there. I finally went to a specialist and was told I have this disease.

Was this comment helpful?Yes
Comment from: njguy, 45-54 Male (Patient) Published: February 19

I am a white male 53 years old, and I have had sarcoidosis since 1987. Like many people, I was diagnosed with lymphoma at first, then by a gamma scan and a biopsy it came to sarcoidosis. My symptoms started with night sweats and joint pain. I refused to take steroids when initially diagnosed and still never have, and I believe that has been a benefit. I still have symptoms such as out of breath easily and fatigue. I think most of the management of joint pain and other aches is handled best for me by working out at the gym. I started on a pretty intense regimen about six years ago. Since I don't have the lung capacity to run, I do uphill on treadmill for cardio, and for the last 3 years I have done lots of weight lifting with machines. The weight lifting makes me feel great all day long.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Sarcoidosis - Describe Your Experience Question: Please describe your experience with sarcoidosis.
Sarcoidosis - Treatment Question: What kinds of treatment, including medication, did you receive for sarcoidosis? Did they help?
Sarcoidosis - Coping Question: How have you been able to cope with your sarcoidosis?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors