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How can one lead a normal life with sarcoidosis?

Q: I am 50 years old and have been diagnosed with sarcoidosis of lungs. The treatment has been started with steroids 60 mg a day and doxofylline. Does it affect your daily living, can I go to work? What are the chances of improvement?

A:The diagnosis of sarcoidosis is sometimes a difficult one and there are many controversies on the management of this disease. No clear cause has yet been identified although there are many theories. The use of steroids is fairly common for this disease and is usually started in patients who have symptoms or extensive disease but this is also variable. Steroids are very helpful but also have many side effects. You should discuss with your doctor in detail about this. You should be able to go to work as usual and continue with your daily activities. Make sure that you get adequate exercise since steroids can make you gain weight. Your current body mass index is over 30 and you need to lose weight to get to a healthy weight - steroids may increase the weight so pay attention to getting enough exercise and monitor dietary intake.

You should make sure you have adequate calcium and vitamin D - sometimes in sarcoidosis the Vitamin D level can be high - you may want to get this checked also. Steroids can unmask diabetes or cause high glucose so you should watch for this. The use of high dose steroids can decrease your immunity and you should discuss with your doctor if they want to place you on prophylaxis for certain infections if you are on long term high dose steroids. Sarcoidosis can affect other organ systems like the eyes, kidneys and the heart - if there is a need you should ask your doctor about getting these evaluated. Sarcoidosis can respond very well to steroids and sometimes a maintenance dose is needed - in some patients the imaging may look abnormal but they have no symptoms and this often only needs monitoring. The medication doxofylline may be helping with breathing but check with your physician if you would benefit from any inhalers (albuterol and/or inhaled steroids) in place of this medication.

In summary, although sarcoidosis can be a multi-system disease many people lead normal lives but will need to get periodic monitoring by their physician and also watch to see if they need any change in medication based on response. Again, please discuss all the possible effects of steroids and watch for them.

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