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.

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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 PTH 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.

Read more: Sarcoidosis and Children

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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

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

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).

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. 

Sarcoidosis affects everyone differently, and so some people may need to inform the DVLA about their sarcoidosis. This is a conversation you should have with your GP or consultant as it depends on the individual case. 

For example, if you have eye, neuro, or cardiac sarcoidosis, there may be complications that qualify you to inform the DVLA. It is always best to check with your specialist for any concerns and it may be worth letting your insurance know, just to be safe. 

For more information on informing the DVLA of medical conditions, see here. 

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.

Read More: SarcoidosisUK Patient Information Leaflets

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 Facebook Groups – there are lots of knowledgeable members there who may have had similar experiences. You can join our online community here.

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 clinicians 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.

During hormonal changes, in particular relating to oestrogen, sarcoidosis symptoms may increase. It has not been studied scientifically whether the disease gains momentum during these periods. Indeed, sarcoidosis is primarily diagnosed in women aged between 20 and 40 years, before these hormonal changes occur. Those with acute sarcoidosis are likely to have recovered by this time.

You may read about stages of sarcoidosis.  This usually refers to pulmonary (lung) sarcoidosis and reflects 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? 

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.

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. 

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.

Read more: Sarcoidosis Consultant Directory

Read more: UK Strategy for Rare Diseases

Read more: NHS Patient Choice leaflet

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.

In 1999, WASOG published its sarcoidosis guidelines, which were then updated with more emphasis on treatment by the European Respiratory Society in 2021.

The BMJ also has some best practice guidelines published.

There is currently no official Care Pathway for sarcoidosis used in the NHS.

The BTS Sarcoidosis Clinical Statement covers the diagnosis, evaluation and management of pulmonary sarcoidosis. In addition to pulmonary sarcoidosis, there is a dedicated section on cardiac sarcoidosis.

Read more: WASOG Guidelines (1999), ERS Treatment Guidelines, BMJ Best Practice, BTS Clinical Statement

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.

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.

The NHS provides detailed guidance on the long-term side effects of prednisolone here: https://www.nhs.uk/medicines/prednisolone/   

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.

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).

If your GP thinks you need to see a specialist and you want to pay for it privately, they can write a letter of referral to a private consultant or specialist explaining your condition and your medical history. You may be charged for this.

Your GP will only refer you to a specialist if they believe that specialist assessment or treatment is necessary. If they do not think it is, they do not have to refer you – either privately or on the NHS.

If you disagree with your GP’s decision, you can ask them to refer you to another healthcare professional for a second opinion (an opinion about your health from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.

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.

None of the SarcoidosisUK research projects involve animals.

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/