If you have sarcoidosis, your doctor may prescribe steroids at some point during your treatment. Specific types of steroids can treat the symptoms of this inflammatory condition, which often affects the lungs.
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But steroids are not for everyone. Used long-term, steroids present a long list of potential side effects. That’s why doctors often look for “steroid-sparing” treatments to address sarcoidosis over time.
Below, pulmonologist Daniel Culver, DO, describes the concerns surrounding steroids, as well as treatment alternatives.
The risks of long-term steroid use
Sarcoidosis can affect any organ, but about 90% of cases involve the lungs, Dr. Culver says. Cases that involve the heart or central nervous system are less common but more often need treatment.
Most clinicians look to steroids as the first line of treatment. Steroids treat inflammation quickly and effectively. Prednisone is the mainstay, but some doctors also will use methylprednisolone intravenously.
However, chronic use of steroids comes with the risk of side effects. Common issues include mood or personality changes, obesity, diabetes, infection, osteoporosis, hypertension, cataracts, glaucoma and thinning of the skin.
“Steroids cause obesity because it makes you more anabolic, so you tend to accumulate fat and eat more,” Dr. Culver notes, addressing a common concern. And they can affect diabetes by changing your glucose sensitivity. They can either make an existing case of diabetes worse or unmask a new case.
Because of concerns about steroids, doctors often look for alternatives. For example, Cleveland Clinic’s Sarcoidosis and Interstitial Lung Disease Program reports that it reduced average daily steroid dose for patients by more than 80% through use of steroid-sparing therapies.
Because of concerns about steroids, doctors often look for alternatives.
Choosing the right treatment depends on the organ involved or target of treatment, Dr. Culver says.
For severe sarcoidosis, doctors often use cytotoxic drugs like methotrexate, azathioprine and leflunomide. These three drugs all target roughly the same organs, and seem to work approximately equally well, he says.
More recently, clinicians have started using drugs called TNF (tumor necrosis factor) antagonists for patients who don’t respond to moderate-dose steroids or cytotoxic drugs. TNF antagonists seem especially effective for skin and neurologic issues, Dr. Culver says. Doctors may also prescribe anti-malarial medicines such as hydroxychloroquine for skin disease or calcium problems.
Of course, any drug comes with side effects. Patients on methotrexate have reported nausea, elevation of liver enzymes, suppression of blood counts, or fatigue. Azathioprine and leflunomide can cause diarrhea or cramping, as well as abnormalities of liver enzymes and blood counts.
“Most patients don’t experience those side effects, but those are some of the things I talk to patients about when I start them on these drugs,” Dr. Culver says.
In addition to these medications, new treatments are on the horizon. Several clinical trials are underway. And Acthar gel, a clinical drug first approved by the Food and Drug Administration in the 1950s for at least 20 to 30 different uses, is getting renewed attention for sarcoidosis.
What to ask your doctor
Not all sarcoidosis patients need treatment, Dr. Culver notes. For 50 to 75% of patients, the condition is likely to go away on its own.
If you do need treatment, talk to your doctor about what medications would be the best for you. Those may include steroids or other medications mentioned above, or you may be a good candidate for clinical trials.
Steroids will continue to have their place as a treatment. For patients who don’t require long-term treatment, steroids might be the most appropriate option, for example. “They work more quickly and they’re more reliable than most other medications,” Dr. Culver says.