Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: brownsugar, 55-64 Female (Patient) Published: October 28

My right eye became very, very teary. I constantly dried it all the time. I went to my eye doctor and he asked me about a rash on the outer circle of my nose. I thought it was fungus, he said it looked like sarcoidosis, something I had never heard of. After being tested, it was just that. I have skin irritations that itch very badly, in areas you may think you have something else. When I sneeze or yawn I get cramps in my neck that brings me to a halt. I am to see a new doctor soon, I hope she can help me deal with this pain that has almost taken me from my husband.

Was this comment helpful?Yes
Comment from: SLaing1979, 25-34 Male (Patient) Published: October 15

I am a 33-year-old male. In May 2012, I experienced swelling in both of my ankles at the same time. There was some pain, when walking or placing weight on my ankles. I am a short distance runner (10-21 Km). Some swelling with new shoes or over training happens. This persisted for about 1.5 weeks, so I went to the doctor, fearing possible heart issues or circulation issues. Doctor examined my feet, X-rayed for possible bone damages due to my running. Nothing showed up there, so he did a chest X-ray. A black mass showed up on my lungs. He said lymphoma or sarcoid as possibilities, but need further testing. He did the CT Scan, blood work, liver profiles, and the ACE blood work. Finally he thankfully ruled out lymphoma and any possible heart or circulation problems. He told me I experienced the symptoms of sarcoidosis. He explained the disease, which there is not much info about. In December 2012 I was diagnosed with bronchitis. I had a hard time trying to get over it. About 2-3 weeks, with a puffer of Ventolin to help with night breathing. Same doctor explained that any lung related disorders or diseases will be that much more difficult with sarcoid! I'm still running, and have not had symptoms of sarcoid since my first one over a year ago. To my knowledge it does not affect my aerobic abilities.

Was this comment helpful?Yes
Published: July 25

I am a 51 yr old black woman and I have sarcoidosis. I was misdiagnosed initially for 3 yrs. (1981 - 1984) my case was severe. At 24 yrs old I had sarcoid in my bones (from head to toe), my skin, and nasal passages. I was treated with prednisone for 20 years. At 24 yrs old, my joints were brittle and had holes. Granulomas formed on my face and I have had 3 surgeries on my tear ducts (both eyes). I happy to say my bones have rejuvenated, (medically impossible), I have flawless skin, and I can breathe thru my nose. I have been off prednisone to for 3 yrs. I'm now a beauty consultant and I feel good!

Was this comment helpful?Yes
Comment from: mary, 55-64 Female (Patient) Published: April 08

I am a 57 year old female and have been living with sarcoidosis since 1995, it makes me weak all of a sudden and takes my strength away. The same doctor for years has been telling me it's active and bumps up my steroid but so what, I am feeling like I am happy and ready to go but it has me feeling weak with no energy today. I am seeing another doctor this month, but one thing I am going to forbid people from smoking in my house and I suggest you all who have it do the same. Because this doctor today did ask me if am I around someone that smokes and sometimes I am around people that smoke.

Was this comment helpful?Yes
Comment from: Lee, 65-74 Female (Patient) Published: February 19

I was diagnosed with sarcoidosis approximately 30 years ago. The interesting thing is that my mother, sister and son have also been diagnosed with the same. My son who is currently 42, has had 2 pulmonary embolisms (PEs) which it was suggested were due to sarcoidosis.

Was this comment helpful?Yes
Comment from: 65-74 Female (Caregiver) Published: October 30

My wife was getting regular chest pain with exercise and I presumed that this was due to inflammation of her lung lymph nodes (she has sarcoidosis with lung involvement). I decided to try a benign experiment with her by treating her using a steam inhaler with a dab of medicated ointment (Rawleigh) containing anti-inflammatory eucalyptus oil, camphor and menthol on top of the water. After a few treatments she started to get better and now she is symptom free with no further use of the inhaler. It was worth the try.

Was this comment helpful?Yes
Comment from: L Corkery, 65-74 Female (Patient) Published: October 21

I was diagnosed with sarcoidosis at age 27. I had lymph node removed. My mother also was diagnosed with sarcoidosis. She was in her 50s. I have suffered for years from iritis. Most recently I developed granulomas on my knuckles.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Sarcoidosis - Symptoms Question: What symptoms did you 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