Sarcoidosis: Signs and symptoms

A condition where tiny red and swollen lumps form in different parts of the body, sarcoidosis was first described by Dr Jonathan Hutchinson in London 1877. It can affect any organ of the body, but most commonly the lungs.
 
These lumps – called granulomas in the medical profession – are made from clusters of cells that are involved in inflammation. Many people who develop sarcoidosis don’t experience any symptoms, and the granulomas simply disappear within a few months or years without any treatment. In fact, up to half of people with sarcoidosis may not realise they have it (i).
 
Others, however, can develop a range of symptoms that can become worse over time and even affect their health severely – for instance, if a large number of granulomas form in an organ, they can cause permanent scarring that stops the organ working properly.
 

How many people are affected?

 
It can be difficult to determine exactly how many people experience sarcoidosis since experts believe it’s often misdiagnosed as another condition (ii). What we do know, however, is that sarcoidosis isn’t a common disease. According to the charity Sarcoidosis UK, around one in 10,000 people in the UK is thought to be affected by it (ii), while Patient UK suggests around 3,000 people in the UK are diagnosed with sarcoidosis for the first time every year (i).
 
Globally, meanwhile, rates of sarcoidosis vary greatly – up to five people in every 100,000 in South Korea, Taiwan and Japan have the condition, compared with 140 - 160 people per 100,000 in Sweden and Canada (iii).
 
While anyone can develop sarcoidosis at any age, it’s most commonly seen in people under the age of 50 (iii). It also is more common in people from some parts of the world than others – for instance, Scandinavian people, African Americans and African-Caribbeans are thought to be more susceptible to developing sarcoidosis than those from other ethnic backgrounds (i). According to the NHS, it’s also more common in women than men, but rare in childhood (iv).
 
If you develop sarcoidosis but don’t have any symptoms, you probably won’t need any treatment and the condition will typically get better on its own in time (according to Sarcoidosis UK around 60 per cent of people with sarcoidosis get better without treatment (ii)). Others, on the other hand, can develop symptoms suddenly or gradually.
 
If the symptoms start suddenly the outlook is usually good, with the condition – known as acute sarcoidosis – often clearing within a few months or years. But when symptoms start gradually, typically over a few months or so, they can get worse in time – this is called chronic sarcoidosis. When this happens – and especially when certain parts of your body are involved such as your heart or nerves – your health can be severely affected. When the lungs are severely affected it can lead to respiratory failure.
 

What are the symptoms of sarcoidosis?

 
There are many symptoms of sarcoidosis – these are dependent on where the condition affects you. Some people may have sarcoidosis in just one part of their body, while others may have it in several places. Here’s a quick rundown of some of the body parts commonly affected by sarcoidosis as well as the symptoms that are specific to those parts:
 
Lungs   According to the NHS sarcoidosis of the lungs – called pulmonary sarcoidosis – affects about nine in 10 people with the condition (iv). Symptoms include:
 

• Breathing difficulties (dyspnoea)

• Persistent dry cough

• Raised temperature

• Chest pain and discomfort

• Coughing up blood (haemoptysis) – though this is rare

 
Skin   Skin is another common organ that’s affected by sarcoidosis, but the symptoms – which can sometimes be mistaken for other skin conditions – vary from person to person, including:
 

• A facial skin rash that can be mistaken for rosacea

• Brownish-red patches on the arms, legs and trunk that can look like psoriasis

• Red, round lumps that most commonly appear on the lower legs and ankles: this is a condition called erythema nodosum (when this develops alongside joint pain and other symptoms such as swollen glands, vision problems and fever, the condition is called Löfgren's syndrome)

• Hair loss

• Raised scars

 
Lymph glands   Some people with sarcoidosis find the glands in their neck, under their arms or in their groin become swollen. A chest X-ray may also show there are swollen glands in their chest area.
 
Eyes   According to Patient UK the eyes are affected in up to 20 per cent of sarcoidosis cases (iii). When this happens it can cause uveitis, which is inflammation of the middle layer of the eye. Symptoms of uveitis include eye discomfort, redness, blurred vision, sensitivity to light and loss of peripheral vision (that is, you can’t see anything at the side of your field of vision). Severe vision problems, however, are rare, even when the optic nerve is affected.
 
Nervous system   If your nervous system is affected, the condition is known as neurosarcoidosis. When the nerves of the face or head are affected symptoms can include facial numbness (including Bell’s palsy), headache, swallowing difficulties (dysphagia), eyesight and hearing problems. Neurosarcoidosis can sometimes cause a type of meningitis called lymphocytic meningitis.
 
Heart   Problems with your heartbeat can sometimes be a symptom of sarcoidosis, including having a slower or more irregular rhythm or palpitations. Other sarcoidosis-related heart problems can include cor pulmonale, which is when the right side of your heart becomes enlarged (this can happen when sarcoidosis causes damage to your lungs). If left untreated, cor pulmonale can lead to heart failure. Sarcoidosis can also make your heart enlarged, which is a condition known as cardiomyopathy. This too can lead to heart failure.
 
Other symptoms of sarcoidosis include:
 

• Kidney stones

• Swollen joints and joint pain

• Muscle pain or soreness

• High temperature

• Night sweats

• Fatigue

• Weight loss

• Poor appetite

• Depression

• Nose bleeds

• A blocked or stuffy nose (rhinitis)

• Yellow skin and/or eyes (this can happen when the liver or spleen is affected)

• General feeling of unwellness

 

What causes sarcoidosis?

 
We don’t know exactly what causes sarcoidosis – or, perhaps more specifically, the inflammation that causes it. For some there may be genetic factors involved, as it does seem to run in a few families (Patient UK claims 3.6 - 9.6 per cent of people with sarcoidosis have the condition in their families (iii)).
 
According to the National Heart, Lung and Blood Institute (NHLBI) in the US, with sarcoidosis the inflammation – which is created by the immune system – goes off track, leading to cells from the immune system forming granulomas (v). The NHLBI also mentions there’s evidence that some immune system triggers can lead to sarcoidosis in some people – these triggers can include infections or contact with substances in the environment.
 
The NHS, on the other hand, suggests sarcoidosis may be an autoimmune condition – that is, a condition caused by the immune system mistakenly attacking healthy tissues and organs in the body (iv). Other experts agree, including the US-based Autoimmune Association, which calls sarcoidosis an autoimmune-related disease (vi). Yet others disagree, including the Foundation for Sarcoidosis Research, which currently doesn’t consider sarcoidosis for the most part to be an autoimmune disease – despite the fact that they have some similar features (vii).
 

What are the risk factors?

 
While we may not have a completely clear picture of what causes sarcoidosis, we do know that some things can increase your risk of developing it. These include:
 

• Age (most cases affect people between 30 and 40 (iv))

• Sex (women are more susceptible to sarcoidosis than men)

• Family history (there’s currently no hard evidence that the condition is inherited, but it does seem to run in some families)

• Some medicines (taking certain medicines including some for HIV, cancer or an overactive immune system may increase your risk)

• Ethnicity (African and Scandinavian people are thought to have a higher risk of developing sarcoidosis)

• Environment (the NHLBI claims living or working near insecticides, mould or other substances that could cause inflammation might raise your risk (v)

 

Are there any complications?

 
Most people with sarcoidosis don’t experience complications from their condition. But some complications have been reported, including:
 

• Chest infections

• Damage to the retina in the eye

• Kidney failure

• Infertility in men with sarcoidosis in the testicles

• Cataracts

• Glaucoma

• Dry eyes

 

How is sarcoidosis treated?

 
If your GP suspects you have sarcoidosis they may refer you for one or more tests, depending on which part of your body is affected. For instance, blood tests, urine tests, chest X-rays, imaging scans (to look for granulomas) and tissue biopsies are all used to diagnose sarcoidosis – there is no one specific test.
 
There’s also currently no cure for sarcoidosis, but there are treatments that could help you manage your symptoms. If you have mild symptoms you may not need anything more than a couple of over-the-counter painkillers every now and then. But people with more moderate or severe symptoms will usually be treated with steroid medication – this can help reduce inflammation and prevent scarring, which relieves symptoms and reduces or prevents damage to your organs.
 
According to Patient UK if you have sarcoidosis you may need to take steroid tablets for six to 24 months, but because steroid medications can cause a range of side effects your dosage will be gradually reduced over time (i). If you do experience side effects with steroid medication – such as skin thinning, reduced bone density, high blood pressure, weight gain and an increased risk of infection – or if you’re taking steroid tablets but they aren’t controlling your symptoms, you may need alternative treatment with immunosuppressive medicines. These too have side effects, some of which can be serious, so if you take immunosuppressants for sarcoidosis you’ll usually have regular blood tests to check for problems.
 
Some people who experience severe scarring of their lungs because of sarcoidosis may need a lung transplant – though this is very rare. And if sarcoidosis affects your heart there’s a slight chance you may need a pacemaker to keep your heart rhythm normal.
 

How to help yourself

 
The NHS recommends a number of lifestyle changes for those who are living with sarcoidosis (iv) – these include:
 

• Giving up smoking if you’re a smoker

• Eating healthy, balanced diet

• Keeping your weight healthy

• Reducing stress

• Staying physically active

• Getting the right amount of sleep

 
There are also some natural supplements that may help reduce inflammation that you could try, including:
 
Vitamin C   There is some evidence that people with sarcoidosis may have lower-than-normal blood levels of antioxidants including vitamin C, with researchers even suggesting oxidative damage – which is neutralised by vitamin C and other antioxidants – may play a part in the development of the condition (viii). Scientists elsewhere claim vitamin C may help reduce inflammation through its antioxidant capacity (ix), while a small study has reported that taking vitamin C reduces levels of inflammatory markers in the body (x).
 
Vitamin C supplements are available in a range of formats and doses. If you’re not sure which one would be best for you it’s a good idea to speak to a nutritionist or dietitian.
 
Vitamin E   Like vitamin C, vitamin E is an antioxidant and as such it may help reduce oxidative stress in the body. Researchers writing in the journal Clinical Nutrition claim it may also be beneficial for lung health (xi). A report in the European Respiratory Journal, meanwhile, suggests taking vitamin E alongside a drug called pentoxifylline improves or stablises pulmonary sarcoidosis in two out of three cases of those newly diagnosed with the condition (xii).
 
High-strength fish oils   The omega 3 fatty acids found in oily fish such as salmon, mackerel, sardines and pilchards are also widely thought to have anti-inflammatory properties. One study, for instance, suggests fish oils may be a safer alternative to conventional anti-inflammatory medicines (though its subject was neck and back pain rather than sarcoidosis) (xiii). Researchers examining inflammation in autoimmune diseases have also found that fish oils may be beneficial (xiv).
 
Fish oil supplements are widely available. If you’re a vegetarian or vegan you too can benefit from an omega 3 supplement, thanks to the availability of products that contain the natural triglyceride (TG) form of omega 3, which is sourced from plant organisms called microalgae rather than fish oils.
 
A note on calcium and vitamin D: if you have sarcoidosis you may have a risk of experiencing side effects from taking vitamin D and calcium supplements. According to Sarcoidosis UK, sarcoidosis granulomas increase the activity of an enzyme called 1a-hydroxylase, which in turn cause high blood levels of calcium (xv). This can be a problem because high calcium levels can cause stomach pain, constipation, confusion and – occasionally – kidney damage. So, if you have sarcoidosis, always check with your doctor before taking any vitamin D or calcium supplements (including multi supplements that contain them).
 

For more information

 
Find out more about inflammation and the health problems it’s linked to by reading our article What is inflammation? Meanwhile there’s lots more information on a range of conditions in our pharmacy health library.

 

References:

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5. Available online: https://www.nhlbi.nih.gov/health/sarcoidosis/causes.

6. Available online: https://autoimmune.org/disease-information/sarcoidosis/.

7. Available online: https://www.stopsarcoidosis.org/what-is-sarcoidosis/causes-risk-factors/.

8. Boots AW et al. (2009) "Antioxidant status associated with inflammation in sarcoidosis: a potential role for antioxidants." Respir Med. 103(3):364-372. Available at: https://www.resmedjournal.com/article/S0954-6111(08)00358-2/fulltext.

9. Ellulu MS et al. (2015) "Effect of vitamin C on inflammation and metabolic markers in hypertensive and/or diabetic obese adults: a randomized controlled trial." Drug Des Devel Ther. 9:3405-3412. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492638/.

10. Arablou T et al. (2019) "Association between dietary intake of some antioxidant micronutrients with some inflammatory and antioxidant markers in active Rheumatoid Arthritis patients." Int J Vitam Nutr Res. 89(5-6):238-245. Available at: https://econtent.hogrefe.com/doi/10.1024/0300-9831/a000255.

11. Hanson C et al. (2016) "Serum Tocopherol Levels and Vitamin E Intake are Associated with Lung Function in the Normative Aging Study." Clin Nutr. 35(1):169-174. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529394/.

12. Vizel A, Vizel I. (2016) "Combination of pentoxifylline and vitamin E for the treatment of sarcoidosis: Retrospective analysis." Eur Respir Journ. 48:OA1770. Available at: https://erj.ersjournals.com/content/48/suppl_60/OA1770.

13. Maroon JC, Bost W. (2006) "Omega-3 fatty acids (fish oil) as an anti-inflammatory: an alternative to nonsteroidal anti-inflammatory drugs for discogenic pain." Surg Neurol. 65(4):326-331. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0090301905007743?via=ihub.

14. Simopoulos AP. (2002) "Omega-3 fatty acids in inflammation and autoimmune disease." J AM Coll Nutr. 21(6):495-505. Available at: https://www.tandfonline.com/doi/abs/10.1080/07315724.2002.10719248.

15. Available at: https://www.sarcoidosisuk.org/information-hub/calcium-vitamin-d/.

 

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Disclaimer: The information presented by Nature's Best is for informational purposes only. It is based on scientific studies (human, animal, or in vitro), clinical experience, or traditional usage as cited in each article. The results reported may not necessarily occur in all individuals. Self-treatment is not recommended for life-threatening conditions that require medical treatment under a doctor's care. For many of the conditions discussed, treatment with prescription or over the counter medication is also available. Consult your doctor, practitioner, and/or pharmacist for any health problem and before using any supplements or before making any changes in prescribed medications.

 

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