Living With Symptoms of Sarcoidosis

Our story began about seventeen years ago. My wife was dealing with difficulty breathing because her throat was closing off. When we went to the hospital to see what was going on, she was diagnosed with sarcoidosis. It was settled in her lymph nodes in her upper chest and was causing her current problem. Before I continue my story about living with sarcoidosis, let's look at what is sarcoidosis and the symptoms of sarcoidosis.

According to the National Heart Lung and Blood Institute, "Sarcoidosis is an inflammatory disease. It starts as tiny, grain-like lumps called granulomas, which most often appear in your lungs or lymph nodes. They can clump together and form larger lumps that attack other organs. Sarcoidosis often affects your skin, eyes or liver. Sarcoidosis may be mild, or it can be severe and do lasting damage. It does not always cause symptoms, so you can have it without knowing it. Symptoms vary, depending on which organs are affected. No one is sure what causes sarcoidosis. It affects men and women of all ages and races worldwide. However, it occurs mostly in people ages 20 to 40, African Americans, especially women, and people of Asian, German, Irish, Puerto Rican and Scandinavian origin." 

The lungs, lymph nodes, spleen, liver, heart, skin and eyes are some of the areas that can be affected by sarcoidosis. Some of the symptoms with the lungs are wheezing, trouble breathing, dry coughing, or possibly pain with breathing. Some of the symptoms related to the lymph nodes are swelling in the areas where the lymph nodes are. The lymph nodes in my wife's upper chest were swollen and this is what caused her breathing and swallowing to be impacted. This swelling of the lymph nodes can cause them to press against organs and blood vessels thus causing some potential problems. For a more detailed description of the symtoms of sarcoidosis, I encourage you to check out the Foundation for Sarcoidosis Research website.

I have to say that I was indeed taught by the Lord to have compassion, patience, love and understanding as my wife went through treatment of her sarcoidosis. The doctor's drug of choice to treat my wife's sarcoidosis was prednisone. We weren't fully apprised of the side affects of this drug at the beginning of her regimen. It didn't take long for us to see the results of the side affects because of the large dosage she was taking. She experienced a large weight gain, extra hair growth and swelling throughout her body. Each time the doctors would try to back off of the prednisone, the sarcoidosis symptoms would return. We were in a catch-22. After years of dealing with this cycle, in 1998, we were fortunate enough to move back to our home town of Columbus, Ohio. This was a true blessing as we were able to find a doctor who was not a fan of prednisone. 

After my wife poured out her heart to this doctor about her frustrations with the side affects of prednisone, she was told that there is another drug that could be tried. My wife was introduced to Mexthotrexate. She began a regimen of this drug and in short order, the side affects of the prednisone were going away. Even better than that, my wife was able to totally get off of all medication for her sarcoidosis. She has had a few flair ups, but she has been able to deal with them without having to go back on any drugs. There is another part to this story, but you will need to read my hub article, "Why Nutrition is Important When Exercising," to get a sense of it. In short, losing weight with the Atkins Diet, proper exercise and a good selection of high quality nutritional supplements, all contributed to my wife's ability to get off of the drug regimen because her sarcoidosis was under control. 

My wife continues to do very well in regards to her sarcoidosis. We are truly blessed that we had the resources to beat this disease and are now able to keep it under control. We want to share our story with others so that they might have hope. Also, we want people to know that there are alternatives to prednisone to help with sarcoidosis. The rewards of sharing have been so great for us, not only in this arena, but in many others. Feel free to comment if we can help you in any way. God's Blessings and Peace be with you.