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Wednesday, December 11, 2013
Sarcoidosis and specialists - One for all
My mother was diagnosed with sarcoidosis 3 years ago after seeing an ophthalmologist because of redness in her eyes. The ophthalmologist recommended that she see a pulmonary specialist to evaluate her condition, which she did. She was prescribed prednisone drops, which she tried to use as sparingly as possible and she started seeing a naturopathic specialist to look at alternatives to steroids for treating the sarcoidosis. Around 6 months ago, she was put on antibiotics to treat a sinus infection and ear infection that wouldn’t go away. When the infection persisted, they tried a variety of antibiotics from penicillins to keflex. In addition to being on antibiotics for 48 out of the last 55 days, she is also taking pentoxifylline to help with the fatigue. She has lost nearly 40 pounds since fall and 2 weeks ago, after her GFR dropped to 21, she saw a Nephrologist and was diagnosed with acute kidney failure due to hypercalcemia. The Nephrologist has now started her on a low dose of prednisone (20mg/day) to help reduce her calcium level. The list of doctors and specialists my mother is currently seeing includes a Primary Care Physician, Ophthalmologist, Pulmonologist, Nephrologist, and an Otolaryngologist (ENT). She is no longer able to work because of the fatigue and seeing all of these specialists is more exhausting than anything. I am extremely concerned with the rapid decline in her health and I’m afraid that treating each symptom separately could be harming another part of her health. I know that the prednisone from the Nephrologist will help with the sarcoidosis, but I want to find her a doctor that will look at all of the symptoms resulting from the sarcoidosis and evaluate the best treatment for her in order to restore her health. Any suggestions on finding that doctor? Where do we go from here?
Dear Sir or Madam,
Because sarcoidosis involves many organ systems, we often recruit multiple specialists to help manage the disease. Pulmonologists often take the lead because the disease usually affects the lung.
In the case of your mother, uncontrolled hypercalcemia led to serious kidney disease. Thus, a nephrologist is needed, and aggressive treatment to control the hypercalcemia is needed. Prednisone is effective in this regard, and usually low-doses are sufficient.
The primary director of care for patients with sarcoidosis depends on the level of comfort. Depending on your location, the regional sarcoidosis expert may be a pulmonologist or a rheumatologist...or there may be nobody who is very familiar with the disease. Almost every major city has at least one sarcoidosis specialist. Your local doctors may be able to help connect you to these experts. That would be best since it will be important for all the doctors to coordinate care for your mother.
I hope this information is helpful.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University