Sarcoidosis Care in Grand Rapids, Michigan
Sarcoidosis is an inflammatory condition in which small clusters of immune cells, called sarcoid granulomas, form in the body’s tissues. These granulomas can develop in almost any organ, but in about 90% of cases they affect the lungs and the lymph nodes in the chest.
Sarcoidosis can occur at any age but is most common in adults in their late 20s to early 40s. It is not cancer and is not the same as tuberculosis (TB), although it can look similar on imaging tests. In the United States, including here in Grand Rapids, MI, most people with sarcoidosis improve within one to three years, often with little or no medication.
If you live in the Grand Rapids area, sarcoidosis is typically managed by specialists at major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health, often in collaboration with your primary care provider.
Sarcoidosis in Grand Rapids: Local Context
Sarcoidosis appears to be more common in cooler climates, which makes it particularly relevant in West Michigan, where we experience:
- Long, cold winters with fluctuating indoor/outdoor air quality
- Seasonal respiratory infections that can complicate lung symptoms
- Possible vitamin D and calcium changes related to limited winter sunlight and summer sun exposure
The Kent County Health Department and Grand Rapids Public Health provide general respiratory health resources and can help with referrals for ongoing care.
Many People with Sarcoidosis Have No Symptoms
In Grand Rapids, sarcoidosis is often found by accident, for example:
- On a chest x-ray done before surgery at a local hospital
- During an evaluation for a persistent cough or shortness of breath
- During a work-up for fatigue or abnormal blood tests
Because many people feel well, sarcoidosis may be monitored with regular checkups and imaging at clinics throughout the Grand Rapids metro area, without starting medication right away.
When Symptoms Do Occur, They Depend on the Organ Involved
Symptoms vary widely and depend on which organs are affected.
Common General Symptoms
- Fatigue or feeling unusually tired
- Low-grade fever
- Unintentional weight loss
- Night sweats
Lung and Chest Symptoms
Since sarcoidosis most often affects the lungs and chest lymph nodes, many Grand Rapids patients notice:
- Dry cough that doesn’t go away
- Shortness of breath, especially with activity (climbing the hills or stairs downtown, walking in cold winter air)
- Chest pain or discomfort
- Wheezing or tightness in the chest
Cold, dry winter air in West Michigan can make these symptoms feel worse, especially when walking outside or shoveling snow.
Skin Symptoms
One of the classic skin signs of sarcoidosis is:
- Painful red lumps on the front of the legs, called erythema nodosum
Other possible skin changes:
- Reddish or brownish patches on the face, arms, or trunk
- Bumps around scars or tattoos
- Areas of discoloration or thickened skin
Joint and Muscle Symptoms
- Joint pain or swelling, especially in large joints like the knees and ankles
- Arthritis-like symptoms, which may be more noticeable in damp or cold Michigan weather
Eye Symptoms
Sarcoidosis can affect the eyes, sometimes without obvious redness. Symptoms may include:
- Blurred vision
- Eye pain or redness
- Dry eyes
- Sensitivity to light
Because eye involvement can lead to vision problems, regular eye exams with a Grand Rapids ophthalmologist are important if you have sarcoidosis.
Heart and Brain Symptoms (Less Common but Serious)
In a small number of people, sarcoidosis affects the heart or nervous system:
Heart involvement may cause:
- Palpitations (feeling like your heart is racing or skipping beats)
- Dizziness or fainting
- Chest pain
- Shortness of breath not explained by lung disease alone
Brain or nerve involvement may cause:
- Headaches
- Weakness in the face, arms, or legs
- Numbness or tingling
- Vision changes
- Problems with balance or coordination
These symptoms need urgent evaluation at a local emergency department such as Corewell Health Butterworth Hospital or Trinity Health Grand Rapids Hospital.
What Are Sarcoid Granulomas?
Sarcoid granulomas are tiny clumps of immune cells that form when the body’s defense system is overactive or misdirected. In sarcoidosis, these granulomas:
- Are non-cancerous
- Can cluster in organs like the lungs, lymph nodes, skin, eyes, liver, heart, brain, and salivary glands
- Can interfere with normal organ function if they become numerous or large
In about 10% of cases, organs other than the lungs and chest lymph nodes are significantly involved.
Calcium Problems and Kidney Risk
Sarcoidosis can sometimes cause the body to handle calcium abnormally. This may lead to:
High calcium levels in the blood (hypercalcemia), causing:
- Increased thirst
- Frequent urination
- Nausea or constipation
- Confusion or fatigue
High calcium in the urine, which can:
- Increase the risk of kidney stones
- Lead to kidney damage if not treated
In West Michigan, where many people enjoy summer activities on the Grand River and nearby lakes, too much sun exposure can sometimes worsen calcium problems in people with sarcoidosis. Your doctor may advise:
- Limiting very prolonged sun exposure
- Staying well hydrated, especially in warm weather
- Periodic blood and urine tests to monitor calcium levels
What Causes Sarcoidosis?
The exact cause of sarcoidosis is unknown. Current theories suggest:
- A combination of genetic susceptibility and
- An environmental trigger, such as:
- An infection
- An inhaled substance
- An abnormal immune reaction
We know:
- It is more common in cooler climates, which may partly explain its presence in the Great Lakes region.
- It sometimes runs in families, suggesting a genetic component.
However, no single infection, allergen, or environmental factor has been proven to cause sarcoidosis. Research is ongoing at medical centers across the U.S., including academic partners that work with hospitals in Michigan.
How Sarcoidosis Is Diagnosed in Grand Rapids
Sarcoidosis can be challenging to diagnose because its symptoms mimic many other conditions. Your Grand Rapids healthcare provider may use a combination of:
Medical History and Physical Exam
- Review of symptoms (cough, fatigue, skin changes, joint pain, etc.)
- Family history of sarcoidosis or autoimmune diseases
- Detailed exam of lungs, skin, eyes, heart, and lymph nodes
Imaging Tests
- Chest x-ray – often the first test that shows enlarged lymph nodes or lung changes
- CT scan of the chest – provides more detailed images of the lungs and lymph nodes
- Sometimes PET scans to look for active inflammation in different parts of the body
These imaging tests are commonly available at Corewell Health, Trinity Health Grand Rapids, Metro Health, and many outpatient imaging centers in the metro area.
Laboratory Tests
- Blood tests to look for:
- Signs of inflammation
- Calcium levels
- Liver and kidney function
- Markers that may support a diagnosis of sarcoidosis
- Urine tests to check for:
- High calcium levels
- Kidney function problems
Breathing and Heart Tests
Because sarcoidosis often affects the lungs and heart, you may have:
- Pulmonary function tests (PFTs) – measure how well your lungs move air in and out
- Electrocardiogram (ECG) – checks heart rhythm
- Echocardiogram (ECHO) – ultrasound of the heart to evaluate structure and function
These tests are commonly performed in pulmonology and cardiology clinics across Grand Rapids.
Neurological and Eye Tests
If you have symptoms suggesting eye or brain involvement, your doctor may recommend:
- Comprehensive eye exam with an ophthalmologist
- Neurological tests or brain imaging (MRI) if nerves or the brain may be affected
Biopsy: Confirming the Diagnosis
In many cases, your doctor will want to confirm sarcoidosis with a biopsy, which means taking a small tissue sample to examine under a microscope. Common biopsy sites include:
- Lung tissue – often obtained using a fiber-optic bronchoscope:
- A thin, flexible tube is passed through the mouth into the airways
- Small samples of lung tissue or lymph nodes are taken
- Lymph nodes – in the neck, chest, or other areas
- Skin lesions – if you have visible skin changes
- Salivary glands – sometimes used if they are enlarged
The biopsy sample is reviewed by a pathologist at a Grand Rapids hospital to look for the characteristic sarcoid granulomas and to rule out other diseases, such as infections or cancer.
Treatment for Sarcoidosis in Grand Rapids
Mild Sarcoidosis: Observation and Monitoring
In the United States, including Michigan, sarcoidosis is often mild. Many people:
- Get better within one to three years
- May not need any medication, only close observation
Your Grand Rapids provider may recommend:
- Regular office visits (every few months)
- Periodic chest x-rays or CT scans
- Breathing tests
- Blood and urine tests to monitor organ function and calcium levels
- Eye exams to check for silent eye involvement
When Medication Is Needed
Medical treatment is recommended if:
- The disease is progressive
- Important organs (lungs, heart, brain, eyes) are significantly affected
- Symptoms are severe or interfere with daily life
The most common treatment is steroid medication, such as:
- Prednisone (prednisolone)
- Cortisone-type drugs
These medications:
- Reduce inflammation and granuloma formation
- Are often started at a higher dose, then gradually lowered as the disease comes under control
In some cases, if steroids alone are not enough or cause side effects, other medications may be used, such as:
- Immunosuppressive drugs (for example, methotrexate, azathioprine)
- Biologic therapies in select cases, often coordinated with specialists
These treatments are typically managed by pulmonologists, rheumatologists, or sarcoidosis clinics within Grand Rapids health systems.
Important Medication Safety Tips
- Never stop steroid medications suddenly unless your doctor specifically tells you to.
- Stopping steroids abruptly can cause serious side effects, including adrenal crisis.
- Always follow the tapering schedule given by your provider.
If you have questions about your medication plan, contact your Grand Rapids clinic or on-call provider before making any changes.
Long-Term Outlook for Sarcoidosis
In most people in the U.S., including those in West Michigan:
- Sarcoidosis resolves within a few years
- Once it improves, it rarely comes back
- Most people can expect to lead a normal, active life
However:
- About one in three people may have some long-term organ damage (often mild).
- Chronic, severe sarcoidosis affecting the heart, brain, or lungs can be serious and, rarely, life-threatening without treatment.
Serious Complications Are Uncommon
While severe complications can occur, they are uncommon. With:
- Early diagnosis
- Regular follow-up
- Appropriate treatment
Most Grand Rapids patients with sarcoidosis have good outcomes and maintain a high quality of life.
Lifestyle and Self-Care in Grand Rapids
Your doctor may recommend lifestyle changes to support your health:
- Quit smoking if you smoke. Smoking can worsen lung damage and reduce treatment effectiveness.
- Protect your lungs from irritants:
- Avoid exposure to dust, fumes, and chemicals at work or home when possible.
- Use appropriate masks or ventilation if you work in construction, manufacturing, or other industries common in West Michigan.
- Stay active, as tolerated:
- Walking, light exercise, or pulmonary rehabilitation may help maintain lung function and energy.
- Manage sun exposure:
- Avoid excessive, prolonged sun exposure, especially if you have calcium issues.
- Use sunscreen and protective clothing during summer activities on local lakes or trails.
- Stay up to date on vaccines, such as flu and pneumonia shots, especially if you are on immune-suppressing medications or have lung disease.
Sarcoidosis and Pregnancy
For most women, pregnancy is not significantly affected by sarcoidosis. In many cases:
- Symptoms improve slightly during pregnancy
- Very occasionally, symptoms worsen after delivery
If you are pregnant or planning pregnancy in Grand Rapids:
- Discuss your medications and disease status with your OB/GYN and sarcoidosis specialist.
- Care is often coordinated between maternal-fetal medicine specialists and pulmonologists or rheumatologists.
When to Seek Medical Help in Grand Rapids
Contact your healthcare provider or seek urgent care if you have sarcoidosis and notice:
- New or worsening shortness of breath
- Chest pain, palpitations, or fainting spells
- Sudden vision changes or eye pain
- Severe headaches, weakness, or numbness
- Signs of high calcium (intense thirst, confusion, or severe constipation)
In emergencies, call 911 or go to the nearest emergency department, such as:
- Corewell Health Butterworth Hospital
- Trinity Health Grand Rapids Hospital
- Metro Health – University of Michigan Health
Local Resources for Sarcoidosis Support
If you live in the Grand Rapids, MI area and have questions about sarcoidosis, consider:
- Your primary care provider or GP – first point of contact for evaluation and referrals
- Pulmonology and rheumatology clinics at:
- Corewell Health (Spectrum Health)
- Trinity Health Grand Rapids
- Metro Health – University of Michigan Health
- Mercy Health
- Kent County Health Department – for general public health information and local health resources
- National organizations such as the Foundation for Sarcoidosis Research (FSR) and the American Lung Association for education and support
Key Points About Sarcoidosis in Grand Rapids
- Many people with sarcoidosis have no symptoms and are diagnosed by chance.
- When symptoms do occur, they depend on which organs are affected (lungs, skin, eyes, heart, brain, joints).
- A classic symptom is painful red lumps on the front of the legs (erythema nodosum).
- Sarcoidosis can cause high calcium levels in blood or urine, increasing the risk of kidney stones and kidney damage.
- The exact cause is unknown, but genetics and environmental triggers likely play a role.
- In the U.S., including Grand Rapids, sarcoidosis is often mild, and most people recover within one to three years.
- Regular monitoring, appropriate treatment when needed, and healthy lifestyle choices help most patients lead active, normal lives.
Grand Rapids Care