Dear Doctor: Living With Neurosarcoidosis


Dear Doctor:

I have neurosarcoidosis and taking steroids but experiencing a lot of side effects from the medication. Are there other medications that I can start to avoid long term use of steroids?


Dear Patient:

Steroids are an anti-inflammatory medication, used at initial diagnosis of neurosarcoidosis or during relapses to decrease inflammation in the nervous system contributing to your symptoms. The steroids are decreased or tapered very slowly to control the significant inflammation in the nervous system from neurosarcoidosis.

At this point in time, there is no cure for neurosarcoidosis. However, several steroid-sparing agents in oral or infusion form are available to avoid permanent use of steroids. Many of these medications were developed for inflammatory conditions outside the nervous system such as lupus or rheumatoid arthritis. Through small studies and research that has been aggregated from years of experience with neurosarcoidosis, management strategies have been created based on expert opinion. 

A common medication that is used is methotrexate, an oral therapy which suppresses inflammatory markers contributing to neurosarcoidosis. This is thought to be an effective medication in mild-moderate neurosarcoidosis. An infusion medication that has been used for more severe neurosarcoidosis in several centers, is infliximab, a TNF alpha inhibitor. These medications do have side effects to consider and therefore usually involve routine blood tests and close monitoring. 

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