Do you have random symptoms that come and go?

There are plenty of times when you don’t feel well, have swollen lymph nodes that may come and go, symptoms that are here and there, but nothing that would send you running to see your HCP.  But it could be a little something more lurking, sarcoidosis.

What is Sarcoidosis?

Sarcoidosis is basically an abnormal immune response, for an unknown reason, that causes clumps of inflammatory cells throughout your body, known as granulomas.  They are usually found in the lungs, eyes, lymph nodes, and skin but can be found in almost any organ in the body. Sometimes the symptoms come and go, sometimes they last a lifetime, and the source (or the cause) is truly unknown!

What are the Symptoms?

Unfortunately the symptoms can vary from person to person due to how long you have been affected by the disease and what organs are mainly affected.  In general, people can have unexplained fever, weight loss, swollen lymph nodes, and exhaustion, which are all pretty bland symptoms, especially if they come and go.  When the skin is affected, you might see rashes, color changes of the skin (come and go), growths under the skin (bumps may come and go, resurface especially around scars or tattoos), and lesions (can occur on the skin of your ears, nose, etc).  Again these symptoms can leave just as quickly as they come, so by the time you get ready to go to see your HCP, the symptoms have disappeared!  If your lungs are affected, you can have wheezing, dry cough, shortness of breath, and possible chest pain when taking deep breaths.  If your eyes are the source of the inflammation, you are likely to have blurred vision, eye pain, and light sensitivity.  Based  on these symptoms, you can see how it would be easy for these symptoms to mask another disease, i.e. a cough and wheezing with a fever might be bronchitis, or light sensitivity with fatigue could be a migraine.  If you persistently seem to have these symptoms you should talk to your HCP, especially if your prescribed treatment isn’t helping at all and the symptoms still come and go.

Are there any Risk Factors?

Well, women between the ages of 20 to 40 appear to me the highest sex/age group at risk, and black Americans tend to have higher rates of sarcoidosis, and worse cases than white Americans.  Although overall, Northern European heritage (like Scandinavians) tend to have the highest rates of sarcoidosis, the Japanese tend to have more complications with eye and cardiac disease related to sarcoidosis.  And really the highest risk factor?  Family history, much like anything else, if someone in your family has sarcoidosis, you are at a much higher risk.

What are long-term risks?

The chronic inflammation in your lungs can cause long-term damage and chronic lung disease, making breathing very difficult later in life, and with the inflammation in your eyes, you can have blindness.  If the disease goes into your kidneys, you can have trouble with the filtering mechanism and go into renal failure, due to this chronic inflammation.  If the granulomas (the areas of inflammation) are found in your heart or your central nervous system (like your pineal cord or nerve pathways) it can be bad; in your heart it can interfere with the electrical pathways causing abnormal heart rates/rhythms and int he nerves it can cause paralysis, tingling, or decreased motor strength.  And for both men and women, if it occurs in the testes or uterus, it can cause infertility or decreased fertility, for women, the issue can become worse after birth (if they are able to conceive once).

How is sarcoidosis Diagnosed?

It is usually diagnosed based on your history, physical exam, along with a Chest X-Ray or CT scan (based on where the areas affected are assumed to be), by finding enlarged lymph nodes or other evidence of granulomas.  Your HCP will draw labs to see if you have an active infection, how your immune system is acting currently, and also how your kidneys and liver are functioning, just to get a baseline.  If your lungs are a complaint, you may be sent to have PFT’s (pulmonary function tests) where your lungs are assess for how well you breathe, lung volumes of air, and if your breathing gets better or worse with medicated treatments.  And finally, you will most likely have a biopsy taken (a small sample of cells removed) to look at under the microscope to assess for granulomas or evidence of sarcoidosis.

What is the Treatment?

Steroids are frequently used as the help to suppress the immune system and decrease inflammation quite quickly, although if they do not work, or you do not see optimal results, your HCP may add and anti-rejection medication that also will significantly suppress the immune system.  These drugs work by stopping your bodies immune response, of course that means you are at higher risk for infections from everyday bacteria and viruses you run into because your immune system is being squelched. Steroids can cause gastric irritation and bleeding, along with mood swings, weight gain, and insomnia while anti rejection medications can increase your risk for infection but also some are linked to an increase risk of certain types of cancers. Anti-Malarial drugs can be used for the treatment of skin and nervous system based sarcoidosis, but they can have some serious long-term effects on your vision, so you need to be careful and have eye exams performed regularly.  TNF-alpha (tumor necrosis factor) inhibitors are used to treat rheumatoid arthritis primarily but a few studies have shown benefits in the treatment of sarcoidosis, again there are risks such as lymphomas from the use of this drug.  If your organs are so severely damaged, like your kidneys from chronic inflammation, one last treatment would be an organ transplant, in which you would be on steroids and anti-rejection medications for life to decrease your immune system.

Bottom Line: 

There is no treatment to cure sarcoidosis, and we have no idea what causes it or why it occurs differently in different people.  The important thing is to know the symptoms, and if you have had symptoms on and off with no long-term relief of symptoms, talk to your HCP about sarcoidosis, and your risks.  It is worth the work up I you can get earlier treatment and prevent long-term damage to your organs, right? Knowledge is power, especially in healthcare!

Yours in Good Health


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2 thoughts on “Do you have random symptoms that come and go?

  1. Thank you for the very informative piece. I was diagnosed with this disease 14 years ago. It waxes and wanes, right now it’s flaring – but one of the most frustrating parts is the fact that very few people have ever heard of Sarcoidosis. Though it is affecting my lungs, lymph nodes, bones and heart, I look fine. People will say “what was the name of that crazy thing you used to have?”…and I’m like “it’s Sarcoidosis and I still have it”.

    • Thanks for reading, Jean. I know it is a topic little known about, I hope that you are feeling well and your flare dies down soon. Be well! Bridgid

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