What is sarcoidosis?

Sarcoidosis is an inflammatory disease that affects one or more organs but most commonly affects the lungs and lymph glands. As a result of the inflammation, abnormal lumps or nodules (called granulomas) form in one or more organs of the body. These granulomas may change the normal structure and possibly the function of the affected organ(s).

What causes sarcoidosis?

The exact cause of sarcoidosis is not known. The disease can appear suddenly and then disappear, or it can develop gradually and produce symptoms that come and go for a lifetime.

Researchers believe that the disease is caused by an abnormal immune response. (The body’s defense system does not react as it should to a foreign substance “intruder.”) In a healthy person, inflammation occurs as the cells of the body’s immune system come together to fight the intruder at an organ or tissue site. In a person with sarcoidosis, however, cells that come to fight end up clumping together into small lumps called granulomas.

It’s still uncertain which foreign substance “triggers” the body’s abnormal response. Some researchers suggest that fungi, viruses, or bacteria are likely triggers. In fact, cases of sarcoidosis have occurred in groups of people who had close contact with each other, as well as in recipients of heart, lung and bone marrow transplants. But, so far, no data have been able to convincingly and consistently establish this “infectious” connection as the cause of the disease. However, some types of bacteria have recently emerged as possible candidates and continue to be closely studied.

What are the symptoms of sarcoidosis?

The symptoms of sarcoidosis can vary greatly from individual to individual, and depend on which tissues and organs are affected. In some people, symptoms may begin suddenly and/or severely and subside in a short period of time. Others may have no outward symptoms at all, even though organs are affected. Still others may have symptoms that appear slowly and subtly, but last or recur over a long time span.

Most common initial symptoms:

  • Shortness of breath (dyspnea)
  • Cough that won’t go away
  • Reddish bumps or patches on the skin or under the skin
  • Enlarged lymph glands in the chest and around the lungs that produces cough and shortness of breath
  • Fever, weight loss, fatigue, night sweats, general feeling of ill health

Other disease characteristics include:

  • Red and teary eyes or blurred vision
  • Swollen and painful joints
  • Enlarged lymph glands in the neck, armpits, and groin
  • Nasal stuffiness and hoarse voice
  • Pain in the hands, feet, or other bony areas due to the formation of cysts (an abnormal sac-like growth) in bones
  • Kidney stone formation
  • Development of abnormal or missed beats (arrhythmias), inflammation of the covering of the heart (pericarditis), or heart failure
  • Nervous system effects include hearing loss, meningitis, seizures or psychiatric disorders (for example, dementia, depression, psychosis)

How is sarcoidosis diagnosed?

Because the symptoms and laboratory findings associated with sarcoidosis can occur in other diseases, there is no single test that can diagnose it. However, the classic sign of the disease is the formation of granulomas (abnormal masses or nodules consisting of inflamed tissue) in one or more of the major organs of the body. Sarcoidosis-related granulomas are not different from granulomas that occur in other diseases. As a result, a complete physical exam and medical history–including occupational history, medication history, and environmental exposures–must be made before concluding that the illness is, in fact, sarcoidosis.

How is sarcoidosis treated?

There is no cure for sarcoidosis, but the disease may get better on its own over time. Many people with sarcoidosis have mild symptoms and do not require any treatment at all. Treatment, when it is needed, generally falls into two categories: maintenance of good health practices and drug treatment. Good health practices include:

  • Getting regular check-ups with your health care provider
  • Eating a well-balanced diet with a variety of fresh fruits and vegetables
  • Drinking 8 to 10 8-ounce glasses of water a day
  • Getting 6 to 8 hours of sleep each night
  • Exercising regularly, and managing and maintaining your weight
  • Quitting smoking
  • Avoiding exposure to dust, chemicals, fumes, gases, toxic inhalants, and other substances that can harm your lungs
  • Avoiding excessive amounts of calcium-rich foods (such as dairy products, oranges, and canned salmon with bones), vitamin D, and sunlight. Daily sunbathing is an example of excessive sunlight and should be avoided; sunlight received from activities of everyday living is acceptable. (The advice in this bullet point is limited to patients with high blood or urine levels of calcium.)

Drug treatments are used to relieve symptoms, reduce the inflammation of the affected tissues, reduce the impact of granuloma development, and prevent the development of lung fibrosis and other irreversible organ damage.

Corticosteroids are particularly effective in reducing inflammation, and are typically the first drugs used in treating sarcoidosis. The oral corticosteroid prednisone is the most commonly used corticosteroid. For patients who cannot take prednisone or for whom a longer course of treatment is necessary, there are other anti-inflammatory medications that can be used.

Above Information Taken From:

Other links:

My Thoughts As A Person With Sarcoidosis:

As a person with this disease I have found a few things to be of great importance. The first is education. Because this disease is not well known, there are doctors who do not know how or when to treat it. Do not be shy about getting more than one opinion whenever needed.

Because this disease can impact multiple organs, different specialists may be needed.

This is a disease of exclusion so sometimes the process to diagnosis can take years. Try to be patient through it but this is one of the reasons self education is so important.

Secondly, learning to take care of your body is vital. This means both exercising it and resting it. Making sure to get moderate amounts of exercise can keep some symptoms in check. Too much exercise will exacerbate symptoms. Finding a balance is key but giving up and siting on the couch because you don’t feel well does NOT help anything as this will lead to self isolation and depression as well as an overall weakened condition. Don’t to it!

Changing habits is often required. I had to change some parts of my diet to avoid foods that seem to make my symptoms worse. I now avoid caffeine, sugar and all processed foods. I was already a vegetarian when I was diagnosed but ensuring a diet rich in fresh vegetables and fruits has helped me feel better. In my case, avoiding dairy also helps. Different diets work differently for different people but dietary changes may be needed if you are diagnosed with this disease. Be prepared for that!

I cannot stress enough that there is no cure for this disease. It does go into remission for some…for a lot actually but for others it is a life long process of ups and downs, aches and pains and bizarre symptoms. You have to learn to live in a new skin while you are managing symptoms of this disease whether you end up going into remission or not. During active phases of this disease you will not feel good and there is no way around that.

Generally this disease does not kill people but it does have a morality rate of 5% and for those of us suffering the more chronic version, it can shorten life expectancy so LIVE YOUR LIFE WELL AND STOP WORRYING ABOUT ALL THE STUPID STUFF.

For me this disease has been difficult but it has also been an excellent wake up call to reexamine my life.

 Places For Support: 

14 thoughts on “Sarcoidosis

  1. I first heard of this in House MD. It was mentioned several times with “It is not lupus” 🙂
    Thanks for opening the blog. I do not have this but have other otoimmune diseases so I see the soldier thing in me too.

    Keep on soldier!


    1. Thanks for following my blog! I don’t know if it matters what auto immune disease a person has, they all have some similarities and living with a chronic condition, no matter what it is, is hard. House, MD loved to use sarcoidosis as a diagnosis, I think because it sounds interesting and relatively rare.

      Liked by 1 person

      1. Actually in most of the “rare” cases they came up with sarcoidosis and lupus at first.
        I have been suffering from fibromyalgia and lichen planus. Doctors say your immune system is over-working. Then I got candida and they say oh your immune system is not working 🙂 I found out that both of them are linked to leaky gut syndrome and when I told my diagnosis to my doctor he said. Oh yes, this can be it :))) Thanks doc 🙂

        Liked by 1 person

      2. I guess everyone’s story is different. It took three biopsies for me to get my diagnosis of sarcoidosis and it took nearly 2 years. I was told I might have lupus, MS, an infection of some sort or cancer first. They just didn’t know for sure until they cut into my lungs. I’m sorry to hear your story…YIKES! Leaky Gut Syndrome does NOT sound like fun. Hang in there!

        Liked by 1 person

  2. paula

    Hi thanks all the info has been really helpful as well 5 years ago I went blind and was told it was uveitis then 3 years ago the started talking about this sarcoidosis and until ive taken ill cant breath thought I was having a heart attack ive not had treatment etc as the chest doc said yer its ok now your better since then I have had 12 weeks off work 9 bouts of sarc xx


  3. nancy

    I am so glad I found your blog….thank you for all the info. I was diagnosed after a mamograme show 3 spots on my breast. ..all I could think was cancer…but it came back as sarcoidosis. …which finally after years of painful joints, aches pains and tiredness….and doctors dismissing my symptoms …I am on meds and doing a little better. ..but the depression hits hard on some days…so thank you for the info and all the positive reassurances..God bless you

    Liked by 1 person

  4. Peter D

    Excellent blog, great information, very impressive indeed.

    There is a sarcoid association with excellent leaflets:

    There are also two very active and good sarcoid groups on facebook:

    So impressed by everything you are doing with this site: I wish sarcoid was more well known. I have had it for over 30 years now – such a difficult illness to cope with and keep on going. Onwards!

    Liked by 1 person

    1. Thanks! Glad you like the blog and thank you for reading it. I am the admin for two sarcoid groups on FB. One of them is for healthy living with this disease and the other is a general support group. I’ll have to get the links and post them here.

      Liked by 1 person

  5. Peter Devonald

    Great – I am in the healthy living one, fantastic resource and recipes, excellent work. Not sure about the other one – but great work, very impressive indeed.

    Liked by 1 person

  6. Rachel Reid

    I’m a sarcoid sufferer…..diagnosed by an open lung biopsy in 1989…life goes on,but when the condition raises its ugly head….like it still tends to do so, it’s not pleasant..

    I’m at present going through countless test once again to confirm yet another bout..Everyone’s case is different,and we all deal with it in our own way!! So good luck to all you other sufferers out there….:)


    1. Hi Rachel – Sorry to hear that it is raising it’s ugly head for you again. We do all deal with this in our own way. My blog is one way that I deal with it…sharing my experience. I hope this flare for you isn’t too awful. Thanks for taking the time to say hello and good luck to you!


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