Sarcoidosis
In sarcoidosis the immune system starts gathering dense clusters of cells, called granulomas, in the tissues.
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Medicines commonly prescribed for Sarcoidosis
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: INJECTABLE, 15 mgActive substance: methotrexateManufacturer: Medac Gesellschaft Für Klinische Spezialpräparate GmbhPrescription requiredDosage form: INJECTABLE, 25 mgActive substance: methotrexateManufacturer: Medac Gesellschaft Für Klinische Spezialpräparate GmbhPrescription requiredDosage form: INJECTABLE, 25 mg/0.50 mlActive substance: methotrexateManufacturer: Accord Healthcare S.L.U.Prescription required
In sarcoidosis the immune system starts gathering dense clusters of cells, called granulomas, in the tissues. It is not a tumour and not an infection: sarcoidosis cannot be caught and cannot be passed on to anyone. Granulomas can turn up in almost any organ, but the lungs and the lymph nodes inside the chest are much the commonest sites. Why the immune system behaves this way is not fully understood; the assumption is that in someone with a certain inherited susceptibility the process is triggered by something breathed in, or by an infection that has been and gone. The first thing worth knowing is this: in most people sarcoidosis settles on its own, which is precisely why not everyone is treated.
How sarcoidosis shows itself
What you notice depends on where the granulomas have settled, so the picture varies enormously. Quite often the condition gives no sign at all and is found by chance on a chest X-ray taken before an operation or for work, which shows enlarged lymph nodes at the roots of the lungs.
The lungs are involved in around nine people out of ten. That brings:
- a dry cough that drags on for weeks and does not respond to the usual remedies;
- breathlessness, at first only on exertion and later with less and less effort;
- a feeling of tightness or a dull ache in the chest, less often.
General complaints are just as typical: a low-grade temperature that lasts, night sweats, weight loss and, above all, a heavy fatigue that rest does not fix and that gets in the way of working. This tiredness is often blamed on anything else going on, when in sarcoidosis it is one of the commonest and most wearing symptoms of all.
The skin is affected in many people: firm reddish-brown or purplish lumps and plaques appear, frequently over old scars and tattoos, which suddenly become raised. A distinct and very characteristic form is erythema nodosum — painful, hot, red nodules on the shins. Also seen are a persistently blocked nose, enlarged and tender lymph nodes in the neck and armpits, aching joints and bones, a dry mouth and swollen salivary glands.
A dramatic start is often the good news
Sarcoidosis behaves in two quite different ways, and telling them apart matters, because the outlook is not the same.
The acute form arrives suddenly and noisily: fever, erythema nodosum on the shins, swollen painful ankles and enlarged lymph nodes in the chest on the X-ray. That combination is known as Löfgren's syndrome. It looks alarming, yet it is in fact the most favourable version: in the great majority of cases everything clears within a few months and does not return.
The chronic form does the opposite — it creeps along over months with no dramatic beginning. Here enough granulomas can build up in an organ to stop it working properly, and over time the site of the inflammation is replaced by scar tissue. It is this form that calls for monitoring and, often, for treatment.
How the diagnosis is reached
There is no single test that answers yes or no. The diagnosis is assembled from several parts, and at the same time the doctor has to rule out the conditions that produce a similar picture — above all tuberculosis, fungal infections, lymphoma and occupational lung diseases caused by dust.
The usual work-up includes:
- a chest X-ray and, if needed, a CT scan, which show the enlarged nodes at the roots of the lungs and the changes in the lung tissue itself;
- breathing tests — spirometry and a measure of how well oxygen crosses from the lungs into the blood. The same tests are repeated later to track the direction of travel;
- blood tests: full blood count, liver and kidney function and, without fail, the calcium level;
- a biopsy — a small piece of tissue from a lymph node, the lung or the skin, so that the granulomas can be seen under the microscope. Nodes inside the chest are reached with a bronchoscope through the airway, often guided by an ultrasound probe on its tip;
- an electrocardiogram and an eye examination, arranged for almost everyone even without symptoms, because involvement of the heart and the eyes can stay silent for a long time.
Why not everyone is treated
Someone given a serious diagnosis and sent home without a single tablet usually takes fright and assumes they have been written off. That is not what has happened, and the reasoning is straightforward.
Sarcoidosis very often retreats by itself — by various estimates in half or more of people within the first two or three years, and in Löfgren's syndrome almost always. Treatment, meanwhile, means mainly steroids, and they are far from harmless: weight gain, rising blood sugar and blood pressure, thinning of the bones, mood swings, greater vulnerability to infection. Handing them to everybody would harm many people for the benefit of a few.
So in mild or symptomless disease the approach is called active monitoring, and it is genuinely an approach rather than doing nothing. You will be called back regularly for examination, imaging, breathing tests and blood tests, and the moment the picture starts to slide, treatment will be started. The point is to give the body its chance to sort the problem out without paying for it in side effects.
Treatment does begin when the disease threatens how an organ works: breathlessness is progressing and the lung function figures are falling, the heart, eyes or nervous system are involved, calcium is rising, the kidneys or liver are suffering, or you simply feel too ill to get on with life.
What changes the urgency
A handful of situations should not wait for the next routine appointment. They are worth knowing about in advance precisely because many people are given no treatment and are left alone with their monitoring.
The eyes. Sarcoidosis often affects the uvea, the middle layer of the eye. Eye pain, redness, discomfort in bright light, blurring or loss of vision, floating specks — these mean getting to an eye specialist within hours or a day, not whenever there is a free slot. Untreated inflammation inside the eye can damage sight permanently, whereas treated early it responds well.
The heart. Granulomas in the heart muscle disturb the conducting system and the rhythm. The warning signs are blackouts and near-blackouts, noticeable skipped or irregular beats, bouts of racing heartbeat, breathlessness that is worsening without explanation, and swelling of the legs. It is desperately easy to put all of this down to the fatigue of the illness itself, and that is the most dangerous mistake on this page: cardiac sarcoidosis can cause the heart to stop. For a blackout or severe palpitations call an ambulance (in Spain, Italy, Portugal, Poland and Ukraine the single European number is 112); for milder symptoms, press for the heart to be assessed rather than letting it drift.
The nervous system. Weakness or numbness in an arm or leg, a drooping face, double vision, loss of hearing, a stubborn headache, unusual thirst with very heavy urination, or a seizure all need urgent assessment.
Calcium, vitamin D and the kidneys
Hardly anyone is warned about this, and it matters. Sarcoid granulomas manufacture the active form of vitamin D themselves, so the body starts absorbing more calcium from food than it needs. The calcium level in the blood rises, the excess is cleared through the kidneys, stones form there, and if the situation persists kidney function itself suffers.
High calcium is suspected from signs that are vague individually but recognisable together: marked thirst, passing large amounts of urine, nausea, constipation, muscle weakness, apathy and muddled thinking, loin pain or an attack of renal colic. If these appear, a blood calcium test is needed within days — and straight away if there is pronounced weakness and confusion.
From this follows an important practical rule: in sarcoidosis you should not take vitamin D or calcium supplements on your own initiative, even though they are recommended to everyone "for the bones" and sold without a prescription. Here they may do harm rather than good. The situation is awkward, because steroids thin the bones and bone protection genuinely is needed — but it is chosen by the doctor and always with the calcium in blood and urine being checked. For the same reason it is sensible not to overdo sun exposure and to discuss your usual intake of dairy foods if your calcium has already run high.
If treatment is prescribed after all
The mainstay is steroid tablets. The usual pattern is a higher dose for some weeks, then a gradual reduction to the smallest maintenance dose, taken for months and often for a year or longer. There is no quick version of this: the medicine damps down the inflammation but does not cancel the disease, so a short course nearly always ends with the symptoms coming back.
Steroids must never be stopped abruptly. With long-term use the adrenal glands cut back production of their own hormone, and a sudden stop can lead to a severe illness as well as flaring the sarcoidosis. The dose is reduced only on the schedule your doctor has set out, even if you feel perfectly well. If the tablets have run out or you have missed several days, contact your doctor rather than deciding for yourself.
When steroids are not enough, or the dose needed is too high to keep up, medicines that damp down immune activity are added, and in severe disease biological treatments are used. If only the skin is involved, creams and ointments are sometimes all that is required.
Alongside all this, some things genuinely help: stopping smoking, keeping up regular activity within your limits — for sarcoid fatigue this works better than rest — watching weight and blood pressure while on steroids, having the recommended vaccinations, and not skipping follow-up appointments, including the yearly eye check.
Online consultation
Sarcoidosis throws up a great many questions between appointments. What the words in the report mean, why such a diagnosis came with no prescription at all, how long this exhaustion will last, whether you can work and exercise, what to do about steroid side effects and when to reduce the dose — all of that is easy to settle without travelling to a clinic.
In an Oladoctor consultation the doctor will go through your scans and blood results with you, explain what exactly is being watched in your case and on what grounds a decision about treatment will be made, help you draw up a list of what to keep an eye on at home, and point out which of your symptoms need urgent attention and which can safely wait for the routine appointment. It is worth going through supplements and any new medicines separately: in sarcoidosis that is not a minor detail.
This material is for information only and does not replace medical advice.
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