SARCOIDOSIS FAQs

This page contains FAQs about many different aspects of sarcoidosis. The questions are divided into 6 sections. You can collapse / expand the answers by clicking the + symbol on the question box. Think we have missed a question? Use the form at the bottom of the page to ‘Suggest a Question’.

The information on this page has been compiled with the help of the following people: SarcoidosisUK Nurse Jo Whight; SarcoidosisUK Norwich Support Group; Dr M. Wickremasinghe, Consultant Respiratory Physician and Sarcoidosis Lead at St Mary’s Hospital; Dr H. Adamali, Consultant Respiratory Physician and Sarcoidosis Lead at North Bristol NHS Trust.
Thank you all for your input.

Section 1: Basics

What is sarcoidosis?

Sarcoidosis (pronounced sar-coy-do-sis and also known as ‘sarcoid’ or ‘sarc’) is an inflammatory, autoimmune disease that can affect any organ in the body. Sarcoidosis is most commonly found in the lungs, lymphatic system (including lymph glands) and the skin. Small nodules of inflammation or scarring called granulomas form in the affected organ. These granulomas can create problems with the proper functioning of that organ.

Read more: About Sarcoidosis

How common is sarcoidosis?

Sarcoidosis affects about 1-2 people per 10,000 in the UK. It is therefore classified as a rare disease. As a comparison, cystic fibrosis affects around 0.7 people per 10,000 and Down’s Syndrome affects around 9 per 10,000.

Who is affected by sarcoidosis?

Sarcoidosis is slightly more common in females. The disease affects all races and ethnicities. There is some evidence to suggest sarcoidosis is slightly more common in specific countries and ethnicities. Sarcoidosis is most common in those aged between 20 and 40 years.

Read more: ‘Who Develops Sarcoidosis?’, About Sarcoidosis

What causes sarcoidosis?

There are several theories about what causes sarcoidosis, none of which have been fully proven. Therefore the cause still remains unknown. However it is generally agreed that sarcoidosis may be explained as an overreaction in the immune system which is triggered by an unknown substance.

This trigger could come from the external environment or from other internal infections. This process probably occurs in individuals who have certain genes which mean they are more likely to be affected by sarcoidosis.

Read more: Pulmonary Sarcoidosis, Diagnosis and Treatment, Mayo Clinic, pg 947

Is it possible to catch sarcoidosis?

People cannot catch sarcoidosis, it is not a contagious disease. There is no evidence to suggest that the condition can be passed from one person to another.

Is sarcoidosis hereditary?

In rare cases sarcoidosis does appear to run in families. This is likely to be due to the possible genetic element of the disease.

What are the different types of sarcoidosis?

Sarcoidosis is a multi-systemic disorder which means that it can affect more than one organ or organ system simultaneously. The most common areas affected by sarcoidosis are the lungs and the lymphatic system (including the lymph glands). This is known as ‘pulmonary sarcoidosis’; 90% of sarcoidosis patients are affected in this way.

However, the disease can affect almost any organ; about 30% of patients will have ‘extra pulmonary sarcoidosis’ – affecting one or more organ(s) other than the lungs. There is liver involvement in up to 70% of cases (although the majority of patients show no symptoms), bone and joint sarcoidosis affects 40% of patients; skin and eye sarcoidosis each affects 25-30% of patients. Sarcoidosis is also known to affect the neurological system, the heart, the endocrine system and the kidneys (all <10% of patients).

Read more: SarcoidosisUK Patient Information Leaflets

How does sarcoidosis affect people differently?

There is no specific answer to this question. Two patients with the same diagnosis may have varying symptoms at different levels of severity, over different time periods. There are some common patterns of symptoms that show up when large numbers of patients are studied. However patients generally have a very individual experience of sarcoidosis. The presence of other conditions alongside sarcoidosis means even more difference in experience between patients.

Read more: ‘What are the symptoms of sarcoidosis?’, FAQs, Section 2

Read more: ‘What other health conditions are associated with sarcoidosis?’, FAQs, Section 4

Section 2: Day to Day

What are the symptoms of sarcoidosis?

The symptoms of sarcoidosis vary widely depending on which organs are involved. While it is common to be affected by sarcoidosis in multiple organs, many of these patients may not experience any further symptoms. Most patients complain of fatigue, a dry persistent cough and shortness of breath, particularly when there is lung involvement.

Other common symptoms are not limited to but may include:

  • Pulmonary: Cough, difficulty breathing (dyspnea), hoarse or dry voice, discomfort, pain or heaviness in the chest, shortness of breath and difficult breathing during sleep (sleep apnea).
  • Skin: Red bumps or patches of skin that may be itchy tender, also known as lesions.
  • Eyes: Symptoms vary depending on how sarcoidosis affects the body (see link below). However these may include pain and pressure around the eye, redness; dry or itchy eyes; blurred or segmented vision, black spots, sensitivity to light.
  • Lymphatic system: Enlarged and sore lymph glands in the neck, armpits, chest or groin.
  • Bones: Most patients with bone involvement will not experience any symptoms.
  • Joints and muscles: Aches and pains in muscular areas and/or bony areas, stiffness and rigidity, swollen and/or tender joints, sometimes with red colouring.
  • Heart: Development of an irregular pulse caused by abnormal heart beats, heart failure, inflammation around the heart, dizzy spells, blackouts.
  • Nervous system: Nerve pain, cognitive problems such as memory loss and hazy mind, hearing loss, numbness in fingers and toes (peripheral neuropathy), seizures.
  • Kidneys: Too much calcium in the blood (hypercalcemia) and too much calcium in the urine (hypercalciuria), possible kidney stones.
  • Liver: Most patients experience no symptoms. Around 20% have an enlarged liver. Some patients experience a tenderness or ache in the upper, right abdomen.

Some people may suffer with acute symptoms which start suddenly, are severe and only last for a short period of time. Others may have a more chronic condition where symptoms develop slowly over a much longer period of time.

Read more: SarcoidosisUK Patient Information Leaflets.

Read more: ‘What other health conditions are associated with sarcoidosis?’, FAQs, Section 4

How does sarcoidosis affect daily life?

How sarcoidosis affects an individual’s life will depend on many factors. For instance which part(s) of the body are affected, the type and severity of the disease, any other existing conditions, the lifestyle choices and health beliefs of the individual, reaction to medication(s) and the care and support available from healthcare professionals and personal support network.

There are three basic ways sarcoidosis will affect daily life; physically, psychologically and practically. Physical symptoms, as described above, will have obvious implications for quality of life including work and socialising. Medication may help to reduce the impacts of these physical symptoms. Sarcoidosis will affect an individual psychologically; some patients may experience anxiety, depression or other mental health problems. Practically, sarcoidosis may impact daily life through employment and financial constraints.

The impact of each of these interconnected factors will vary widely based on the individual’s personal experience of the disease and which organs are affected. It is very important to remember that there is no `one size fits all` with sarcoidosis – everyone will be affected differently.

Read more: Employers Information Leaflet

Read more: Benefits Support

Can a specific diet help support someone with sarcoidosis?

Sarcoidosis symptoms happen because of inflammation in the body. Eating a diet plentiful in anti-inflammatory foods can help to regulate and ‘calm’ the immune system. This may then reduce inflammation in the body. This technique may help to reduce the effects of sarcoidosis symptoms in short term as well as contributing towards a longer term preventative platform for the body. This preventative platform may mean less chance of flare-ups, for example. Anti-inflammatory foods are generally unprocessed, without chemicals, additives or added sugar and consumed in their whole food state i.e. wholegrains, skins-on vegetables etc. They contain lots of antioxidants, minerals and healthy oils which are essential for a healthy immune system.

How does Vitamin D affect sarcoidosis?

Sometimes sarcoidosis patients are recommended vitamin D or calcium supplements to combat the effects of bone thinning effects of corticosteroids. For most people, calcium and vitamin D supplements are very safe, but for some people with sarcoid, there is a risk of supplements dangerously increasing blood levels of calcium and vitamin D. An elevated blood calcium level is seen in approximately 1 in 10 patients with sarcoidosis. Vitamin D levels are commonly measured in the general population. Your doctor may well check your vitamin D and calcium level with a PHT test. If you have sarcoidosis there is an increase chance you would experience side effects from taking vitamin D and calcium supplements. It is essential that you have your calcium and vitamin D level measured before you start any supplements, and that these levels are monitored whilst you remain on therapy. Always mention to your doctor that you have sarcoidosis if they recommend you have any calcium or vitamin D supplements, and if in doubt discuss with your sarcoidosis specialist.

Read more: Sarcoidosis and Calcium and Vitamin D – Patient Information Guide

Thanks to Dr. K. Bechman, Rheumatology, Kings College Hospital for help with this question.

Does sarcoidosis affect fertility?

There is very little evidence to suggest that sarcoidosis causes infertility. Occasionally, however, the male reproductive system may be affected by the presence of a testicular mass(es). For women, sarcoidosis may cause menstrual irregularities due to hormone imbalances. A referral to a specialist called an endocrinologist is advised in these cases.

Read more: Sarcoidosis and Children

Are people with sarcoidosis entitled to benefits?

Sarcoidosis may be considered a life-limiting disease and therefore a disability by the Department of Work and Pensions (this depends on your specific diagnosis and symptoms). Therefore you may be entitled to one or more benefits to help you cope with any financial difficulties resulting from your sarcoidosis. Unfortunately SarcoidosisUK does not have the resources available to provide personalised benefits advice or advocacy services. You can find these services using the external links on the page below.

Read more: Disability Benefits and Financial Support 

How does sarcoidosis affect work and employment?

Sarcoidosis can affect work and employment in a number of ways. This is different for each individual and may change over time. Many sarcoidosis patients are able to work normally, particularly if their job is not physically demanding. Others may have to moderate their work activities, perhaps by pacing themselves and allowing more time for hospital appointments and sick leave. Some other patients find that working with sarcoidosis is not possible at all. If this is the case, disability benefits and financial support may be offered. It is very important for all sarcoidosis patients to start a conversation with their employer as soon as possible. Simple adjustments to the work schedule or environment can make a big difference and help the patient to stay at work in a capacity that best suits them.

Read more: SarcoidosisUK Information for Employers Leaflet

Do people with sarcoidosis pay prescription charges?

Sarcoidosis is not a medical exemption from paying prescription charges. This means you will still be expected to pay unless you are exempt from charges under one of the other exemption categories. However you can reduce your medications costs by purchasing an annual or quarterly prescription prepayment certificate (PPC). Use the links below and ask your pharmacist for advice.

Read more: More information on PPC and prescription charges exemption.

Section 3: Living with Sarcoidosis

How long will sarcoidosis remain active in the body?

There is no definite answer to this question. For most patients Sarcoidosis will burn out within 1 -2 years and they will have no further complications. Some patients will require treatment and then go into remission, see below. For some other patients the condition will become chronic and they will continue to suffer flare-ups from time to time, see below. Generally, the longer a patient has suffered with chronic sarcoidosis, the less likely they are to go into remission.

What does going into remission mean?

Going in to remission means that sarcoidosis has moved out of the active phase and has become inactive. Some people describe the disease as ‘burnt out’ or ‘lying dormant’. Spontaneous remission occurs in 60-70% of cases.

The terms ‘partial’ or ‘complete remission’ may also be used. Partial remission means that symptoms are much improved and medication is not required at this point. However, monitoring will still be required. Complete remission means that the signs of active sarcoidosis are not detectable. However, residual damage may remain.

It is important to note that remission is not the same as cured or full recovery. Some people in remission will never have another problem with sarcoidosis. However others will suffer flare ups from time to time. It is not uncommon for sarcoidosis to remain inactive for many years and to reassert itself 20 – 30 years later.

What is a flare up?

A ‘flare up’ describes a time when sarcoidosis symptoms suddenly start again after a period of inactivity or obviously worsen very quickly. No one really knows what causes flare ups but they are often preceded by stress to the body, either in the form of emotional stress or physical stress such as illness or an accident. Flare ups may last any period from one day to many months.

What is the best way to manage flare ups?

Ensure you get enough rest, eat healthily, and be aware of changes to your body.  Contact your GP for further advice – this may mean returning to your hospital consultant. Flare ups should be managed sensibly. Do not force yourself through things that you find difficult as this will not aid a speedy recovery.

What is the best way to educate family, friends and colleagues about sarcoidosis?

Sarcoidosis is a rare disease with no known cause. This creates a lack of awareness and knowledge about the condition from the general public. This is a problem for many sarcoidosis patients who struggle to educate their friends, families and colleagues about sarcoidosis. We suggest you point them in the direction of the SarcoidosisUK website – we have a wealth of resources and information to help them understand the condition. If you would prefer to give something more specific to read, we suggest you use one of our patient information leaflets.

Read More: SarcoidosisUK Patient Information Leaflets

What support is available to make living with sarcoidosis easier?

Being diagnosed with and living with sarcoidosis can be a scary time. It may help to talk to family and friends about your condition. SarcoidosisUK are here to support you in whatever way we can. We run a Nurse Helpline. This is a free, confidential, telephone service run by NHS nurses who have personal experience of sarcoidosis. It is dedicated to answering medical queries surrounding the condition. You will receive some information and reassurance, and have as much time as you need to talk through your situation with someone who understands what you’re going through. Get in touch to schedule a call.

SarcoidosisUK Support Groups meet across the UK. They are very friendly places to meet others with sarcoidosis, perhaps for the first time. This can be a very rewarding and valuable experience. Find out more about our support groups and where they happen here.

SarcoidosisUK also have a very active Facebook page and online forum – there are lots of knowledgeable members there who may have had similar experiences. You can join our online community here.

Section 4: Testing and Diagnosis

What tests are available for sarcoidosis?

There are many tests available for sarcoidosis, which one(s) you have will depend on where the sarcoidosis affects you. It is common have a chest X-ray early to discover any irregularities in the lungs or area around the lungs. Further tests may include one or more of the following: MRI scan, CT scan, PET scan, blood tests (including ACE levels), lung function tests, ECG, echocardiogram, bronchoscopy and tissue biopsies.

More specific tests may be used for particular organs, for instance slit lamp examinations may be used to investigate sarcoidosis of the eye or MRIs for suspected involvement of the heart or brain. You will find more information about which tests are used with each type of sarcoidosis in the leaflets below.

Read more: SarcoidosisUK Patient Information Leaflets

Why are there multiple tests for sarcoidosis?

There is no one specific test for sarcoidosis. Sarcoidosis is indicated by the formation of granulomas and inflammation. Specialist consultants will use various tests to confirm if and where these granulomas and/or areas of inflammation occur in the body. They may then test further to confirm that the inflammation is not caused by any other disease. This is often a process of elimination and unfortunately may take some time, particularly in complicated cases with multiple organs affected.

How are people diagnosed with sarcoidosis?

A sarcoidosis diagnosis will usually be made when tests have confirmed the absence of other related conditions. In addition, granulomas and/or areas of inflammation have been identified. Some patients may have no symptoms but sarcoidosis may be detected on a routine chest examination.

What do the stages of sarcoidosis mean?

You may read about stages of sarcoidosis.  This usually refers to pulmonary (lung) sarcoidosis and refelects whether the sarcoidosis is in the lymph nodes of the chest, the lungs themselves or both. The stages also show whether the inflammation has progressed to fibrosis.

Therefore within each stage patients may experience varying degrees of severity.  For example, one patient in Stage III may be asymptomatic (without symptoms) whilst another in the same stage may suffer with a great deal of pain, swelling and often fatigue due to sarcoidosis elsewhere in the body.

In reality, sarcoidosis consultants rarely refer to these stages as they can be misinterpreted by concerned patients. They are not used to direct treatment.

Read more: What do the Stages of Pulmonary Sarcoidosis Really Mean? 

Section 5: Treatment

How soon after a sarcoidosis diagnosis does treatment start?

Many people with sarcoidosis do not need to have treatment at all.  The Royal Brompton and Harefield Sarcoidosis Clinic states that the only reasons for treating sarcoidosis are:

  1. to prevent organ damage or dangerous disease
  2. to enhance quality of life

If you do need treatment for organ damage, this will usually start within weeks. This may be sooner for cardiac or neurological involvement.

Read more: Royal Brompton and Harefield Advice on Sarcoidosis Treatment 

When and how it is possible to get a referral to a specialist consultant?

Depending on how severe and complex symptoms are and the response to medication, patients may need to be referred to a specialist consultant. The SarcoidosisUK Consultant Directory is a useful tool for this. Patients should ask their GP for referral. Patients are also encouraged to post on the SarcoidosisUK Facebook group for recommendations in their area from other members.

Read more: Sarcoidosis Consultant Directory

What are the treatment options available?

There is no treatement that will cure sarcoidosis. Treatment options will act to reduce inflammation, reduce and relieve symptoms and help to manage the sarcoidosis.

When treatment is required corticosteroids, most commonly prednisolone, are usually the first choice of medication (unless there are any contraindications to their use such as diabetes or obesity). Corticosteroids work by supressing the inflammation. A high dose is usually prescribed at the start of the treatment, before being reduced to a ‘maintenance dose’. There is a lot of research evidence to support the use of this medication. However there are many side effects of steroids, especially when taken in high doses. These range from weight gain and mood swings to osteoporosis and insomnia.

Clinicians are also increasingly using other non-steroidal immune suppression medication such as Methotrexate, Hydroxochloroquine and Azithioprine. Again, each of these has its own set of side effects.

Each treatment decision will be based on the specific nature of that sarcoidosis and take into account a number of factors, including the views of the patient themselves. Treatment for sarcoidosis often changes over time; regular check-ups will be necessary to ensure the best treatment plan is being followed.

What treatment guidelines are available?

The most recent diagnosis guidelines available for sarcoidosis were published in 1999 by WASOG. These are currently being updated, with more emphasis on treatment, by the European Respiratory Society and will be published in Autumn 2018. SarcoidosisUK is contributing to these guidelines as part of a Patient Advisory Group, representing UK sarcoidosis patients views and concerns. Keep an eye out for how you can get involved in this project. There is currently no official Care Pathway for sarcoidosis used in the NHS – SarcoidosisUK are lobbying NICE for the creation of such guidelines. The BMJ also has some best practice guidelines published.

Read more: WASOG Guidelines (1999), ERS Treatment Guidelines (ongoing), BMJ Best Practice

Section 6: Research

What progress is being made in sarcoidosis research?

There is some encouraging progress in sarcoidosis research around the world. The discovery that mTOR (a signalling pathway) could affect the growth of granulomas has led to many subsequent studies into understanding better how this new information could lead to a viable treatment for sarcoidosis.

Read more: mTOR Research

You can find out more information about other research that is being conducted into sarcoidosis, including UK clinical trials, using the link below. There are lots of opportunities to get involved in research.

Read more: Get Involved 

What research is SarcoidosisUK funding?

SarcoidosisUK funds one major piece of research into sarcoidosis each year in partnership with the British Lung Foundation. We are one of the world’s largest sarcoidosis research funders. You can read more about our past and current research projects by clicking the link below.

Read more: SarcoidosisUK Research

Does SarcoidosisUK work with other sarcoidosis organisations around the world?

Yes, SarcoidosisUK works alongside many organisational bodies across the UK, Europe and the world to help advance our goals and find a cure for sarcoidosis. For instance SarcoidosisUK are members of or associated with Primary Care Respiratory Society, Rare Disease UK, Genetic Alliance UK, British Thoracic Society, WASOG and European Lung Foundation and have a close working partnership with the British Lung Foundation.

Does SarcoidosisUK Research involve animal testing?

None of the SarcoidosisUK research projects involve animals.

Read more: BLF Research Information 

Can sarcoiosis patients donate organs and blood to the NHS?

If more than five years have passed since finishing all treatment and a full recovery has been made, NHS Blood and Transplant can accept individuals who have Sarcoidosis as donors. If the condition is chronic, then regretfully, they will not be able to donate. People with sarcoidosis patients are encouraged to sign up to the organ donor register as organs/donors are extensively assessed prior to transplant. Please visit www.transfusionguidelines.org for more information about sarcoidosis. (Senior Nurse Practitioner, NHS Blood and Transplant Service, September 2018)

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