Advocate for Your Health

The surest path to securing the best possible treatment for a complex disease like sarcoidosis is for you to become a fierce advocate for your medical care.

Finding the Right Doctors

Although knowledge of sarcoidosis is growing, not every doctor is well versed in the disease and not every doctor will be the best partner in managing your healthcare. Take the time to find a general practitioner who impresses you with their knowledge of and willingness to research sarcoidosis, as well as their ability to collaborate with you to manage this complex disease.

“It is important to have a working relationship with your doctor. If you don’t trust your doctor, if you can’t discuss things with your doctor and even debate things with your doctor, then you don’t need to be with that doctor.”– Cascenta Whyte, Sarcoidosis patient

Similarly, devote time and persistence to finding and getting appointments with pulmonologists, rheumatologists or other needed specialists who have deep knowledge of sarcoidosis. Ask your GP and other trusted physicians for recommendations. Good doctors usually know other good doctors.

Finally, if there is a sarcoidosis clinic in your area, research the process for getting referred and diligently pursue an appointment.

“This disease is rare and you need to see doctors who understand it and have seen many patients with the disease. Because the disease comes in so many shapes and sizes, there are symptoms that can be easily overlooked or downplayed by doctors who are not familiar with it.”– Heidi Junk, Sarcoidosis patient

Handling Medical Appointments

When you are dealing with a complex medical condition, doctors’ appointments can include unfamiliar terms, unexpected information and conversations that feel too rushed. There are ways to make those appointments more informative, productive and satisfying.

  • Set the agenda – Before each medical appointment, research the topics, treatments, tests, procedures or other issues that prompting the appointment. Based on your research, decide what you really need to get out of that appointment and write out a series of questions that will elicit that information.

“You can say to your doctor at the beginning of the appointment, there are five things I would like to go over with you. You can even hand him or her a copy of your agenda or a list of your questions. And if the doctor gets anxious that you are taking up too much time, then too bad.” – Elizabeth Schuler, founder and president of Patient Navigator, LLC

  • Keep a notebook – Create a comprehensive record of your medical appointments by bringing a notebook with you to each appointment. Record the physician’s answers to all or your prepared questions, and note any additional information that arises during the visit. Review your notes later and determine if there are other questions you need to ask, topics you need to research or issues you need to raise with other specialists. Bring that notebook to every appointment with every doctor so that you can share relevant information and flesh out issues.
  • Bring a partner – As a patient, it is nearly impossible to absorb all the information coming at you during some medical appointments. If you expect an appointment to include a complex discussion, bring a spouse or other trusted soul with you to serve as a second set of ears.

Coordinating Multiple Doctors

The complexities of sarcoidosis often require patients to see multiple medical professionals. That presents a healthcare challenge: Different doctors’ offices and testing facilities don’t always communicate well amongst themselves. However, that information flow is vital to quality care. Here are some things you can do to ensure all your medical caregivers are properly informed.

  • Make introductions among caregivers. Create a list of all your physicians and other caregivers, complete with their contact information, and give that list to every medical professional who treats you. Ask them to share copies of your medical reports with each other. Then follow up to find out if medical information is being properly circulated.
  • Create a medication cheat sheet – specifically, a list of all the medications you are currently taking (include dose and frequency) – and provide a copy to each of your doctors. This will help prevent conflicts and interactions among medications.
  • * Designate one doctor to be the overall coordinator of your care. Ensure that person receives all of your medical reports from all sources and is willing to review everything and maintain a thorough understanding of your medical status. That physician won’t necessarily drive all medical decisions. However, he or she can help you and other physicians stay abreast of medical issues, and address any potential conflicts in treatment, such as negative interactions between drugs prescribed by two different specialists.

“Because sarcoid impacts so many systems, you need to figure out which doctor is going to be your organizer. You need one doc to organize all the specialists and to see you as a whole, not just as one organ or system.”– Heidi Junk

  • Develop a central repository of all your medical information. Obtain copies of all of your medical reports and test results, and create a filing system to keep them organized. Some sarcoid patients create separate files for each organ or system effected (lungs, joints, etc.) and separate files for regular blood work or other tests. Bring copies of your reports – or at least the most recent reports – to each medical appointment. Determine if the physician has received the most recent documents. If not, provide them with a copy.

Build Your Expertise

Empower yourself and improve your healthcare by steadily learning about sarcoidosis and the associated tests and treatments. If a doctor recommends a medication, therapy or test, research it. Ask questions about its success rates and side effects. Ask about possible alternatives and about future options if the recommended treatment fails.

Research may help you avoid negative impacts or prolonged discomfort from ineffective treatments, and access successful treatments more quickly. In addition, make a point of studying your own test results and compare them to how you were feeling at the time. Eventually, you will recognize patterns.

“This disease is complicated and unpredictable. As a patient, you know your body better than anyone. You need to become an expert on listening to your body and learning the signs of when it is doing well and when it isn’t. It might be that your lung tests are fine but it’s the CT scans that really show the truth. Or maybe most liver levels are normal but your GGT and alkaline phosphatase levels are very high and those are the signs that your liver is not happy. By learning your personal markers, you can become a better advocate for yourself and help your docs along the way.”– Heidi Junk

Follow-up Care

Regular followup care is important, even if you aren’t taking medication for your Sarcoidosis. New symptoms can occur at any time, and your condition can get worse slowly. Followup exams usually include: a review of your symptoms, a physical exam, a chest x-ray and CT scan, breathing tests, an eye exam, blood tests and an electrocardiogram (EKG).

How often you have your examinations and tests depends on how severe your symptoms are, which organs were affected, what treatment you are using and any complications you developed during treatment.

You will probably need routine followup care for several years. Whether you see your regular doctor or a sarcoidosis specialist for this depends on your symptoms during the first year of followup.

Here are some examples of how your follow-up care can be managed. They are based on either your condition when you were diagnosed with Sarcoidosis or the treatment used.

Follow-up After Initial Diagnosis

If at diagnosis, you have no symptoms, a normal breathing test, and an abnormal chest x ray, you should plan for a follow-up exam every 6 to 12 months until your condition is stable or improving and repeat your breathing test, depending on your symptoms and ability to be active.

If at diagnosis, you have some symptoms, an abnormal chest x ray, but you don’t need treatment, you should plan for a follow-up exam in 3 to 6 months.

If at your first follow-up visit, you have no new symptoms and your chest x ray is normal, you can go to your regular doctor for future follow-up care.

If at your follow-up exam, your condition has gotten worse (i.e., you now have more symptoms, an abnormal x ray, or abnormal lab tests) you may need treatment. If treatment is started, you may need followup tests more often.

Follow-up Based on Your Drug Treatment

If treatment is begun with prednisone, you should be checked for the side effects of high blood pressure, too much weight gain, diabetes, loss of calcium from your bones, and pain in one or both hips.

If treatment is begun with hydroxychloroquine, you should have an eye exam every 6 months while taking this drug.

If treatment is begun with methotrexate, you should have blood tests every month or every other month to see if you have anemia, low white blood cell or platelet levels, or liver inflammation.

Other Follow-up Tests

Depending on how serious your condition is and what organs are affected, you may also need to have certain tests done regularly.

Eye Tests

Everyone who is diagnosed with Sarcoidosis, even if they don’t have eye symptoms, should see an ophthalmologist (eye doctor) for eye tests. This is important because you may have eye damage even if you don’t have symptoms.

These tests may include:

  • A slit lamp examination. Your doctor uses an instrument with a high-intensity light source to look at the front of your eyes.
  • A visual fields examination. Your doctor will ask you to you to look at a light through an instrument.
  • Inspection of your retina and optic nerve.

If you develop eye symptoms, your doctor will have you repeat the tests.

You should also have regular eye exams if you are being treated with:

  • Chloroquine or hydroxycholoroquine (Plaquenil)
  • Corticosteroids.

Breathing Tests

These tests are used to check the course of Sarcoidosis in your lungs. The results are compared over time.

Blood Tests

A blood test for calcium should be done. If your calcium level is high, you probably will need to be treated. You also should not take vitamin and mineral supplements containing calcium or vitamin D, and you should avoid too much exposure to the sun.

Electrocardiogram

This test is needed to make sure that your heart is still not affected by sarcoidosis. The heart can be affected at any time if the sarcoidosis is active.

“Ensure the accuracy of what is in your medical records. A lot of times, inaccurate information gets into medical records and that can cause problems with insurance companies and medical providers. So whenever you have a procedure or test, always ask for a copy of the results and check them for accuracy.” – Elizabeth Schuler, Patient Navigator, LLC