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There is NO KNOWN CAUSE and NO KNOWN CURE for sarcoidosis and I can’t stress this enough because any treatment provided for this disease is aimed at the management of symptoms and there is a big difference between taking a drug to manage the symptoms of a disease than taking a medication to cure it.

Sometimes this disease goes into remission by taking medication. Sometimes this disease goes into remission without medication. Sometimes this disease never goes into remission but is managed by medication.

To treat or not to treat this disease is the question for many patients because there are times treatment is not warranted. If there are no symptoms impacting the quality of a patient’s life and no obvious signs of organ damage as a result of this disease, than a “wait and see” approach can sometimes be the best course of action.

Prednisone is often the first line of defense when treatment is prescribed and while this medication can often reduce the inflammation caused by sarcoidosis and minimize symptoms, it also has the potential for complicated long term side effects of its own.

A wise woman I know with this disease said this about treatment for sarcoidosis especially as it pertains to the use of prednisone:

“When it comes to trying medications it’s trial and error and also a catch 22. For example, prednisone, which is the most often prescribed drug, is a double edged sword, providing some relief from sarcoidosis symptoms but causing other damage such as bone loss, increased chance of getting glaucoma, increased cancer risk, and steroid-induced myopathy (muscle pain and weakness). The latter is ironic because those with sarcoidosis get extreme fatigue, and in many cases its in connection with skeletal muscle weakness, which the prednisone can exacerbate.” – Betty JK

When prednisone doesn’t work or isn’t enough, the next step in treatment is generally to add an immune suppressor. Drugs like methotrexate, cellcept, Imuran and Leflunomide are often used. Sometimes these are used in conjunction with prednisone. Sometimes they are used on their own, for patients who either refuse prednisone or are prednisone resistant.

These drugs have their own potentially dangerous side effects. For example methotrexate is actually a chemotherapy drug. It’s used in smaller doses for sarcoidosis than cancer but there are still risks. These risks include lung damage, liver damage and hair loss to name a few. When using methotrexate, regular blood work is needed to monitor liver function and white blood counts. The use of methotrexate can also cause increased fatigue and neuropathy, another irony and catch-22 for this disease because these are also symptoms of the disease. 

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When all of these medications fail, there are infusion therapies, drugs like Remicade, but these have a tendency to cause problems with respiratory infections, headaches, stomach pain and coughing. Coughing is a very common symptom of sarcoidosis. And this type of infusion therapy can have far more serious side effects including skin cancer, lymphoma, bleeding, fevers, liver damage and lupus like syndrome.

The take away from all of this is simple. There are no easy answers when it comes to managing this disease and because of that, patients need to take an active role in understanding the risks and benefits of treatment and work closely with their doctors to determine the right course for them.

This is a very individualized disease and just as no two people seem to experience the same symptoms, patients don’t always respond to treatment the same way.

While this disease does go into remission for many and others have periods of stability managed by medications, there is no cure of this disease and if someone tells you otherwise…they are lying.

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More and much better research is needed but unlikely since this disease is considered “rare” and the financial benefits to find a cure do not exist.

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