Living With Sarcoidosis

Sarcoidosis is a disease primarily of the lymphatic system. However, since the lymphatic system goes throughout the entire human body, it can and does eventually effect every soft tissue organ (lungs, heart, central nervous system, liver, kidneys, pancreas, skin, muscles, tendons, etc.).

There are primarily three categories of people with sarcoidosis.

• Those who have the disease and never know it and it goes away on its own.
• Those who have it and are diagnosed and treated and it goes away and never comes back.
• Those who are diagnosed with the disease and have to receive treatment for the rest of their lives.

Let's talk about the third category in keeping with the title of this report. At the tissue or cellular level, sarcoidosis disease progression can be divided into three phases:

• The first change that is seen is inflammation.
• In the second phase, granulomas form. Granulomas are masses or nodules of chronically inflamed tissue and are the classic sign of sarcoidosis
• In the third phase, fibrosis (scarring) of tissues or organs occurs. If scarring is extensive in a vital organ, sarcoidosis is sometimes fatal.

In some people, the disease advances from one phase to the next in the tissues of the organ affected. In others, the different phases of tissue changes take place within the same organ at the same time. In many patients with sarcoidosis, the granulomas go away on their own in 2 to 3 years without the patient knowing or doing anything about them. In others, the granulomas progress to irreversible fibrosis. The immune system changes that allow one person’s disease to progress while another person’s disease resolves are not well understood and continue to be investigated.

I was diagnosed by biopsy and other means with sarcoidosis in 1973 at Brooke Army Medical Center and Hospital in San Antonio, TX. Since that time I have been in and out of remission a number of times. The first couple of times it seemed to rotate around a ten year time frame. The disease would crop up and last for two to three years then go into remission for seven to eight years then start all over again. The treatment was massive doses of steroids in the form of prednisone.

I have been on prednisone now for the past five years and every time I try to taper off it complications arise and I have to go back up with the dose. I am currently at 20mg per day.
Prednisone is a wonder drug. It is a catch-all for many health problems, but...like any other drug, it has it's negative side affects. The most obvious side affect is massive and immediate weight gain due to insatiable appetite.

In December of 1983 it was determined that my sarcoidosis was out of remission and I went on 60mg per day of prednisone. At the time I weighed around 175 pounds which was already a little overweight for my height, but in three months when my dosage was droped to 40mg per day I had gained a total of 85 pounds putting me up to 260. Right now I weigh in at around 250 and I have never been any lighter since the mega dose of prednisone.

People who are living with sarcoidosis should:

• Adopt a healthy lifestyle.
• Join support groups for ideas on how to do this.
• Regular follow-up care is important for people with sarcoidosis.
• How often you see your doctor and the tests used to monitor your sarcoidosis depend on your diagnosis and whether you have any symptoms.

You should take steps to stay healthy when living with sarcoidosis. For example:

• Don't smoke
• Avoid substances like dust and chemicals that can harm your lungs
• Try to follow a healthy eating plan
• Be as active as you can, but don't strain yourself.

Sarcoidosis in itself is usually not fatal, but complications in other organs due to the affects of sarcoidosis sometimes is fatal. It is a disease that is not curable, but can be controllable if followed regularly with competent health care professionals. The patient also has a big roll in controlling the disease. See the bulleted points above and take an active roll in the treatment of your disease.