SarcoidosisUK have teamed up with patients, nurses and top consultants to answer your questions about sarcoidosis. The questions are divided into 6 sections. You can expand and collapse the answers by clicking the + symbol on the question box. Think we have missed something important? You can 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 Norwich Support Group, SarcoidosisUK Nurse Jo Whight; Dr M. Wickremasinghe, Consultant Respiratory Physician and Sarcoidosis Lead at Imperial College Healthcare NHS Trust and Dr H. Adamali, Consultant Respiratory Physician and Sarcoidosis Lead at North Bristol NHS Trust.
Thank you all for your valuable input.
Section 1: Basics
What is sarcoidosis?
Sarcoidosis (pronounced sar-coy-do-sis), also known as ‘sarcoid’ or ‘sarc’, is an inflammatory disease that can affect any organ(s) 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?
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 commonly diagnosed in those aged between 20 and 40 years.
What causes sarcoidosis?
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.
Is it possible to catch sarcoidosis?
Is sarcoidosis hereditary?
What are the different types of sarcoidosis?
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?
Read more: ‘What are the symptoms of sarcoidosis?’, FAQs, Section 2
Read more: ‘What other health conditions are associated with sarcoidosis?’, FAQs, Section 4
Is sarcoidosis a rare disease?
Yes, sarcoidosis is classified as a rare disease. A rare disease is defined as one that affects less than 5 people in 10,000 of the general population. Sarcoidosis affects between 1 and 2 per 10,000 in the UK.
Read more: What is a rare disease?
What is the difference between pulmonary fibrosis and Sarcoidosis?
Sarcoidosis is one of the most common types of interstitial lung disease (ILD). The other main ILD is pulmonary fibrosis. There are a few different types of pulmonary fibrosis but they all involve scarring to the lung tissue. Pulmonary fibrosis is scarred, thickened, and damaged lung tissue that has lost its flexibility and function.
The way that sarcoidosis and pulmonary fibrosis each affect the lungs is slightly different. However end stage (i.e. Stage 4) sarcoidosis includes the presence of pulmonary fibrosis. In this way the conditions overlap in some people – they have what is known as ‘sarcoidosis induced pulmonary fibrosis’. About 20% of sarcoidosis patients develop pulmonary fibrosis, only a very small percentage of these are fatal.
Read more: You can find more information about pulmonary fibrosis on the BLF websute here.
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?
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?
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.
Thanks to Dr. K. Bechman, Rheumatology, Kings College Hospital for help with this question.
Does sarcoidosis affect fertility?
Read more: Sarcoidosis and Children
Are people with sarcoidosis entitled to benefits?
Read more: Disability Benefits and Financial Support
How does sarcoidosis affect work and employment?
Do people with sarcoidosis pay prescription charges?
Read more: More information on PPC and prescription charges exemption.
Can sarcoidosis cause insomnia and sleep apnoea?
Fatigue is a common symptom of sarcoidosis, affecting up to 70% patients. Insomnia (difficulty falling or staying asleep) and sleep apnoea (shallow breathing during sleep) may both contribute to fatigue. There is evidence to suggest that sarcoidosis patients are more likely to experience insomnia and sleep apnoea. However it is not known if sarcoidosis causes insomnia and sleep apnoea directly or if it is due to one, or a combination of, other factors. These factors could include the inflammation in the body, mental health problems such as stress or side effects of treatment.
Many sarcoidosis patients also report night sweats as a result of inflammation in the body. Night sweats many also disturb sleep and can contribute to fatigue.
Read more: Read an academic paper on sarcoidosis-associated fatigue (ERJ, 2012).
Read more: Read a paper about subjective sleep quality in sarcoidosis (Sleep Medicine, 2015).
Can sarcoidosis cause excessive sweating?
Yes, many sarcoidosis patients report excessive sweating, particularly night sweats. It is possible that sarcoidosis is the cause of this symptom. However it is more likely that in most patients these sweats are caused by psychological problems such as anxiety, the side effects of steroidal medication, or a combination of both these factors. Sarcoidosis patients experiencing the menopause may find that sweats worsen further.
Excessive sweating may occasionally be diagnosed as hyperhidrosis, for which treatments are available.
Read more: NHS information on excessive sweating.
Section 3: Living with Sarcoidosis
How long will sarcoidosis remain active in the body?
What does going into remission mean?
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?
What is the best way to manage flare ups?
What is the best way to educate family, friends and colleagues about sarcoidosis?
Read More: SarcoidosisUK Patient Information Leaflets
What support is available to make living with sarcoidosis easier?
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.
Are anti-inlammatory diets such as the Autoimmune Protocol Diet (AIP) beneficial for sarcoidosis patients?
Some people find anti-inflammatory diets helpful. However the impacts of these diets are not well researched or agreed upon and can be very different for different people. Some clinicans suggest that changes resulting from anti-inflammatory diets may be explained by the placebo effect. This is not necessarily a bad thing! Always check with your doctor or a qualified nutritionist before making serious changes to your diet.
Section 4: Testing and Diagnosis
What tests are available for sarcoidosis?
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?
How are people diagnosed with sarcoidosis?
What do the stages of sarcoidosis mean?
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.
I am being investigated for possible sarcoidosis. What blood tests should I ask for?
There is currently no agreed and accepted group of (or indeed single) diagnostic test for sarcoidosis. This is due to the complicated nature of sarcoidosis, affecting people in so many different ways. Sarcoidosis is therefore usually diagnosed in secondary care in a specialist clinic rather than by GPs.
Doctors will use blood tests (such as an ACE test, see next FAQ) alongside other tests and scans to build up an overall clinical picture. This will help them to recognise the signs of sarcoidosis and exclude the presence of other conditions that show similar signs and symptoms (such as tuberculosis, lung cancer and lymphoma).
Blood tests can be used to look for evidence of liver or kidney damage connected to suspected or diagnosed sarcoidosis.
How reliable are ACE tests in diagnosing sarcoidosis?
Many people with sarcoidosis make excess amounts of vitamin D and / or a chemical called angiotensin-converting enzyme (ACE). Blood tests can be used to detect high levels of these substances. However, other conditions also cause elevated levels of vitamin D and ACE. Therefore these tests are not regarded as good predictors of sarcoidosis by clinicians in the UK and cannot be used to diagnose sarcoidosis. ACE results certainty should not be used on their own as diagnostic tools and treatment plans should not be administered or modified based solely on a (high or low) ACE result.
However ACE test results can often be a useful indicator as to the effectiveness of a particular treatment plan when considered by a Doctor alongside other tests and symptomatic markers.
Section 5: Treatment
How soon after a sarcoidosis diagnosis does treatment start?
- to prevent organ damage or dangerous disease
- 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.
When and how it is possible to get a referral to a specialist consultant?
Depending on how severe and complex the sarcoidosis symptoms are and the response to medication, patients may need to be referred to a specialist consultant. The SarcoidosisUK Consultant Directory (link below) is a useful tool for this. Patients should ask their GP for referral. NHS patients have a legal right to choose to be referred to their preferred hospital / service, including referrals beyond their local area to other parts of the country. You can read more in the NHS Patient Choice leaflet, below.
Patients are also encouraged to post on the SarcoidosisUK Facebook group for recommendations in their area from other members.
What are the treatment options available?
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.
What is the safest way to reduce steroid dosage without causing side effects?
It is usually best to reduce steroid dosage slowly, and in small increments. A lower initial dosage should mean reductions in smaller increments. Your Doctor will use a variety of evidence to decide the best treatment plan for you. If you are unsure about their recommendation, you could consider asking for a second opinion. With dosages below 7.5mg per day, clinicians may want to check that your adrenal glands are starting to work effectively.
What is a normal starting dose of prednisolone?
There is no normal starting dose of prednisolone. Your treatment plan will be based on a number of factors including your medical history, height and weight and the severity and presentation of your symptoms.
As a general guide, most sarcoidosis patients take between 2mg and 10mg of prednisolone per day. The maximum any Doctor in the UK would prescribe is around 60mg per day but higher doses of steroids in the form of methylprednisolone can be given intravenously.
Some patients may be started a high ‘loading dose’ before dropping down to a lower ‘maintenance dose’. This high initial dose means that the medication can start working in the body more quickly.
What are the possible side effects of high doses of prednisolone in the long term?
The NHS provides detailed guidance on the long-term side effects of prednisolone here: https://www.nhs.uk/medicines/prednisolone/
What is the follow-up care plan for patients who are in remission?
Around 70% of sarcoidosis patients go into remission. There is no systematic follow up care plan for these sarcoidosis patients in the NHS. If doctors decide to discharge a sarcoidosis patient, they would expect the patient to report any new or returning symptoms to their GP and be re-referred if necessary. It is important to take control of your health, be aware of your symptoms and seek re-referral via your GP if you think your sarcoidosis is flaring again.
Most cardiac and neurosarcoidosis patients, and those with pulmonary fibrosis, will not be discharged. They will attend regular appointments on a schedule decided by their lead Doctor.
Should patients taking immunosuppressant medication for their sarcoidosis be more careful about being exposed to infectious diseases?
Infections can be problematic for patients on treatment for sarcoidosis, especially when immunosuppressants are used. This is because the medication is reducing the strength of the immune system, the part of the body that fights off infection. This means the body is less able to defend itself and so patients are more likely to become infected.
Patients taking immune suppression medication will be more susceptible to catching infection from others. Therefore, it is very important to ensure they protect themselves as much as possible. They should get flu vaccine on a yearly basis and to are advised to check that they have had a pneumococcal vaccination (request at GP surgery). If patients are travelling they should check to see if vaccines are required and get insurance.
Depending on level of immune suppression, live vaccines may not be advisable – always check with your clinician if these are advised. Current live vaccines available are MMR, Shingles and Yellow fever.
Read more: Read NHS guidance on this topic (FAQ at bottom of page).
Section 6: Research
What progress is being made in sarcoidosis research?
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?
Read more: SarcoidosisUK Research
Does SarcoidosisUK work with other sarcoidosis organisations around the world?
Does SarcoidosisUK Research involve animal testing?
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, patients will regretfully not be able to donate. 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)
Sign up to the Organ Donor Register: https://www.organdonation.nhs.uk/register-your-decision/register-your-details/
Is sarcoidosis involved in the 100,000 Genomes Project?
Unfortunately sarcoidosis is not a condition that can be investigated as part of the 100,000 Genomes Project. Dr Richard Scott, Clinical Lead for Rare Disease at the Project, said: “The 100,000 Genomes Project Rare Disease programme focuses on conditions with simple ‘monogenic’ genetic causes, i.e. where a single genetic change is the cause of the condition. Although there are some genetic factors that influence the risk of sarcoidosis, it’s causes are thought to be more complex and not within the grasp of the approaches we are taking in the project.”
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