In early April of 2002, after working at both Ground Zero and the Staten Island Landfill in New York City, I started noticing the first symptoms of sarcoidosis. I began experiencing a lack of sleep, extreme tiredness, skins lesions, difficulty breathing and a lack of appetite. I first attributed these symptoms to a lack of rest and working so many hours, but they started to get worse. I visited my primary doctor in mid-April and she ordered a chest X-ray. She was concerned about several spots on his lungs that she noticed and ordered an MRI and further testing. In May 2002, after a lung biopsy, I was diagnosed with sarcoidosis of the lungs.
In the months that followed, my symptoms progressively worsened. I couldn't breathe well enough to walk a couple of city blocks or up a flight of stairs without medication and my skin condition worsened. My energy level was so bad, that I would spend several days in bed to recover. I was subsequently diagnosed with asthma, chronic bronchitis, acid reflux, sleep apnea and Barrett's Esophagus, as well as sarcoidosis.
Sarcoidosis is a confusing disease that can come and go, and affects many different organs. I'm always left wondering when sarcoidosis will once again rear its ugly head. Now living with this disease for 16 years, below are five questions that I wish I would have asked my doctor after initially being diagnosed with sarcoidosis.
Is sarcoidosis a life-threatening and fatal disease?
No, it is rare for sarcoidosis to be a fatal disease. In at least one-third of cases, patients do not need treatment and the sarcoidosis will quiet down or go away on its own. Another 30 percent of patients will get treated and the sarcoidosis will improve and then treatment can be stopped. In the sickest patients with sarcoidosis, treatment may need to be continued for years, if not for the rest of their lives, but many of those patients can lead normal lives. It is rare that sarcoidosis causes death, but when it happens, it is often in those patients who were not treated early enough.
What are some of the treatment options available for people with sarcoidosis?
When your doctor decides that you need treatment, the type of treatment will depend on what part of your body is affected. If it is your eyes or skin (which are two very common areas for sarcoidosis to affect) sometimes local creams or eye drops can be sufficient. In most cases, when there is more extensive organ involvement including the lung or heart, systemic medications often need to be used. Patients are often treated initially with oral steroids (e.g., prednisone) and response is assessed. Because of the long-term side effects of chronic high-dose steroids, if patients cannot be ultimately weaned to low doses of steroids or off altogether, other anti-inflammatory drugs (sometimes referred to as steroid-sparing agents) will be tried and response to these drugs is assessed. Other drugs that suppress or activate the immune system can also be used, including an older, FDA approved repository corticoptropin drug that helps your body produce its own natural steroid hormones and can be injected under your skin. Some other treatments for sarcoidosis include methotrexate, hydroxychloroquine, leflunomide, cyclophosphamide and some of the newer anti-TNF agents such as infliximab. All of these medications may have side effects and require close monitoring and adjustments by of your specialist.
What is the best kind of physician to see to monitor sarcoidosis?
It usually depends on what part of your body is being affected by the sarcoidosis but starting with a pulmonologist is your best choice as the lungs are one of the most commonly affected organs. If the pulmonologist finds that sarcoidosis has also impacted your eyes, skin or heart, they can send you to a specialist in that area as well to help assess how severe the damage is to those organs.
How do I know if my sarcoidosis is responding to treatment?
Once you are started on treatment, your symptoms will usually improve. Your physician should follow you closely while you are on treatment with regular physical exams, blood work, pulmonary function studies (if you have lung involvement) and EKG or echocardiograms if you have cardiac (heart) involvement. Other more detailed tests like CT scans, MRIs and PET scans can also give physicians information on how well you are responding to treatment.
How close are researchers to finding a cure for sarcoidosis?
At this time researchers have not found a cure for sarcoidosis. Right now, more than 200,000 Americans live with the disease and more than one million patients worldwide have the disease. There are many researchers working actively in this field to determine not only a cure but also to find out the cause of the disease and why patients present with so many different types of symptoms. Continued research holds the promise of better understanding of sarcoidosis, and possibly better treatments and even a cure in the future.
Learn more about this rare disease and hear more stories from people living with sarcoidosis.
Support for this partnership was provided by an unrestricted educational grant from Mallinckrodt Pharmaceuticals.
Blog last updated: August 30, 2023
