Sarcoidosis

[Guest]

I told I had Sarcoidosis in 1994. Involvement occular some evidence of prior lung granulomas in x-ray. I have Pred te daily in both eyes. seems under control. I sent to Pulmonology. y saw no reason to treat me. I now have has a number of urology tests due to blood in kidneys. Answer (via phone) is I have some kidney stones need no treatment. Since I rely on a military medical facility, service help should I have questions can I ask to get proper c. No one knows much about disease. I had a blood clot pulmonary embolism last winter have purple toes, etc from time to time. Also pain in shoulders.I need help so I can get treatment. Of special concern to me is stones.

[Guest]

I too have high Calcium levels from Sarc and form kidney stones. I have have 4 removed over the past year and have been forming more all along this spring. I have started taking Pred this month - it is supposed to 'disolve' a stone that I have now plus remove the excess calcium from my system. I hope it will work - high calciul levels can do strange things to a person - so you should have those levels chedked often! Write & we can compare notes - it is very hard to find someone else that has stones from Sarc! Take care - Kathy

[Guest]

If you have stage I sarcoidosis in the lungs, that is hilar adenopathy, that does not require treatment but should be followed to make sure it doesn't progress to more advanced stages, stage II without progression often times therapy can be witheld but again needs to be followed by a physician. The kidney stones may be due to elevated calcium from sarcoid and usually that is evaluated at the time of evaluation of the stones, I would ask your M.D. about that. If they did not look into the calcium I would ask them to. The pulmonary embolism has not relation, if you are a female and on estrogen birth control pills that should be addressed.