Written by Brenton Wight, Health Researcher, LeanMachine
Copyright © 1999-2020 Brenton Wight, LeanMachine
Updated 5th April 2020
Sarcoidosis (sar-koy-DO-sis) is an inflammatory, auto-immune condition that may affect many organs, but typically the lymph glands and lungs.
The immune system protects the body from invaders by sending special white blood cells to the invaded area, which release chemicals that recruit other cells to destroy all invaders.
Inflammation is the result, and in a healthy body the invader is destroyed, then the cells and inflammation disappear.
In Sarcoidosis, the inflammation remains, immune system cells cluster to form lumps (granulomas) in various organs and other parts of the body.
More common in people 20 to 50 years old, peaking in the range 20 to 29, particularly women, but can occur at any age and to either sex.
Nine out of every 10 cases involve the lungs and may also involve any other area or organ of the body or some part of the nervous system.
Women over 50 are in a second high-risk age group.
All races are affected, with an average incidence world-wide of 19 per 100,000 in women, and 16.5 per 100,000 in men.
Australia has an average rate of around 6 per 100,000 and generally the cases are more mild compared to other countries.
Northern European countries have a higher rate, with 60 per 100,000 in Sweden and Iceland.
In the United States, people of African or especially Afro-Caribbean descent have a higher rate of 35.5 per 100,000 compared to Caucasians with 10.9 per 100,000.
South America, Spain, India, and Canada have much lower rates.
One of the lowest rates in the world is in the Philippines (where coconuts form a major part of the diet – see more below).
A study of fire-fighters in the USA revealed a higher rate than expected.
If a person from a low-risk country moves to a high-risk country, they then have the same risk as others in that country.
Identical twins are more likely to both have Sarcoidosis than paternal twins, confirming the genetic link.
Actual cases may be much higher, as many remain undiagnosed. The majority will clear up without medical intervention, sometimes in 1 to 3 months, sometimes up to 2 or 3 years.
Some people, especially African-Americans and Northern Europeans have the gene HLA-DRB1 *03:01 and *03:02 which has been verified to be a significant sarcoidosis risk.
Also the gene HLA-DRB1*1101 is more common in sarcoidosis patients.
The HLA group of genes are primarily involved in the immune system.
Another gene, IL23R is linked to uveitis (when sarcoidosis affects the eyes). This gene can be blocked with the drug Stelara (Ustekinumab).
IL23R is also linked to ankylosing spondylitis, psoriasis/psoriatic arthritis, Crohn’s disease, ulcerative colitis, autoimmune thyroid disease, breast cancer and systemic lupus erythematosus.
It is found in multi system sarcoidosis that is difficult to treat.
Ustekinumab is used to help control interleukin 12 and interleukin 23, which are involved in immune-mediated inflammatory disorders such as Sarcoidosis, Psoriasis and MS (Multiple Sclerosis).
More gene info here
Why do some people suffer and others do not?
If the immune system is compromised, and the patient has a genetic pre-disposition, they are more likely to have a reaction to the bacteria by forming a granuloma (lump).
The lump is called a Sarcoidosis granulomatous condition, sometimes mistaken for cancer, but Sarcoidosis is definitely not cancer or cancer-related.
I believe the high rates in cold climates, women and those of African descent is partly due to low vitamin D3 levels, common in all of those groups, which compromises the immune system.
That does not mean that those Sarcoidosis patients low on vitamin D3 should supplement – the reverse can be true, more on this complex issue later.
What causes Sarcoidosis
The absolute cause has not been determined.
Granulomas form when lymphocytes (a type of white blood cell, part of the immune system) and macrophages (a different white blood cell which engulfs and “eats” debris, infections and invaders, also part of the immune system), get out of control attacking whatever the foreign invader is, and form the lump.
There are many risk factors:
- Viral or bacterial infection (Sarcoidosis is not contagious, but resembles tuberculosis)
- Defect in the immune system (auto-immune or abnormal immune response, low vitamin D3)
- Unidentified toxic substance, possibly mercury, aluminium, lead, aersenic, etc
- Unknown environmental cause (chemicals, pollutants, radiation, etc)
- Genetic or inherited cause – see HLA genes above
- High-carbohydrate diet (sugar, grains, starchy vegetables)
- Diet low in healthy fats
- Overweight or obese
- Tick bites (often causing Lyme disease which can have some similar symptoms)
- Mycotoxins (mouldy food)
- Environmental Fungi – exposure to fungi at home is higher among sarcoidosis patients, and the more fungi, the more serious the condition.
- Defective Mannose Receptor Gene
- Exposure to smoke, chemicals in air, e.g. fire-fighters
- Existing Lupus, MS (Multiple Sclerosis), RA(Rheumatoid Arthritis), Hepatitis C, Osteoporosis, Ankylosing Spondylitis
- Living in an area or country where people are more prone to Sarcoidosis
- Living in an agricultural area (maybe higher exposure to agricultural chemicals?)
- Exposure to Beryllium or other metal dust
- Exposure to fumes or mouldy materials (may also cause lung disease, sometimes mistaken for Sarcoidosis)
- High Estradiol and Prolactin, typical in pregnancy
Sarcoidosis, Lyme Disease and Tick Bites
Ticks tend to harbour a variety of bacteria and viruses, the most famous causing Lyme Disease.
Unfortunately, in Australia, doctors refuse to admit that we have Lyme disease in our country, yet many people succumb to this disease and have to send their samples to the USA for testing as there are no Lyme certified labs in Australia.
But the test results come back positive, and Australian doctors have no idea how to treat this condition.
Although Lyme Disease and Sarcoidosis are two distinct conditions, there are remarkable similarities between the two.
People may suffer a fever and pain for days or weeks from a tick, other insect bite, or bacteria from another source, but Sarcoidosis inflammation, symptoms and diagnosis may not happen for years afterwards.
Doctors usually treat the fever with antibiotics, and when the fever disappears they claim a cure, but in those with a genetic pre-disposition to Sarcoidosis, a tiny granuloma can form, allowing bacteria to continue thriving.
A healthy immune system rejects the bacteria, and remission is the result, but an abnormal immune system or genetic predisposition can allow a lifetime of inflammation.
Swedish scientists published images in 2002 of bacteria from a tick-borne disease in 30 people with Sarcoidosis.
The bacteria, from the genus Rickettsia were living and replicating in the granulomas of all 30.
This bacteria causes Rocky Mountains spotted fever in the USA, and the same disease in Asia is called Scrub typhus.
Since then, other bacteria has shown to be involved in Sarcoidosis.
People in agricultural areas are more prone to Sarcoidosis, possibly because of greater exposure to tick-borne disease (ticks are found in long grass) and possibly exposure to toxic chemicals.
Symptoms vary. Different people can have different symptoms.
Some people have very mild symptoms, others can have life-threatening symptoms.
Diagnosis can be difficult because Sarcoidosis symptoms can mimic symptoms of diabetes, hypopituitarism, optic neuritis, meningitis, tumours, or neurologic disorders.
Some sarcoidosis patients have Lofgren’s syndrome with symptoms such as fever, enlarged lymph nodes, arthritic ankles, erythema nodosum.
Erythema nodosum is a rash on the ankles and/or shins, red or red-purple bumps, often warm and tender.
Sufferers can have any or all of the following symptoms, and some of these symptoms may be caused by other conditions:
- Nodules (lumps, granulomas)
- Constant fatigue
- Glandular problems
- Swollen or painful lymph nodes
- Vision problems
- Tiredness and lethargy
- Facial swelling
- Painful red lumps called erythema nodosum on the front of the legs.
- Dry mouth, often very dry
- Metallic taste in the mouth
- Constant thirst
- Increased Urinary Frequency
- Dry Eye
- A slight, moderate, or high fever
- Occasional or frequent unexplained fevers
- Sudden shortness of breath
- Chronic or recent productive cough
- Chronic or recent non-productive cough
- Chest pain or discomfort
- Arthritis, joint pain, swelling or stiffness
- Skin rashes, sometime red or blue patches
- Hyperprolactinemia (high prolactin)
- Hyperparathyroidism (too much parathyroid hormone)
- Monocytes Elevated
- Neuritis or Neuropathy (pins and needles or numbness)
- Pulmonary Fibrosis
- Interstitial Lung Disease
- Cardiovascular problems
- Enlarged spleen
- Enlarged liver
- Enlarged gall bladder
- Blocked bile duct
- Nervous system disorders
Complications and Prognosis
Lung and lymph node involvement is the most common problem, occurring in up to 90% of cases.
X-Rays, CT scans and lung biopsies are often used to confirm the diagnosis.
Sometimes only the lymph nodes are swollen with no other symptoms.
Involvement is not uncommon in the liver, blood, skin, musculoskeletal, eyes, kidneys and endocrine and reproductive organs.
Although most patients find the symptoms disappear by themselves, medical supervision is required. Left untreated, serious problems with any or all organs affected can cause complications.
Cardiovascular involvement may occur, where granulomas form in and around the heart.
ECG / EKG (Electrocardiogram) generally does not help the diagnosis, but MRI, Echocardiography, or even Endomyocardial biopsy may be required.
Although rare, this can be serious with symptoms leading to heart arrhythmia, palpitations, chest pain, or even sudden cardiac arrest.
Neurological involvement occurs in around 5% of cases, and can cause mild to serious problems in the CNS (Central Nervous System) and related areas if left untreated.
High calcium in the blood and urine can cause kidney stones, kidney damage, blocked blood vessels and osteoporosis.
Sarcoidosis patients often suffer from Hypercalcemia (excess calcium in the blood).
However, other diseases can also cause hypercalcemia, including:
- Crohn’s disease
- Langerhans-cell histiocytosis (also Histiocytosis X, often with Eosinophilic Granuloma)
- Silicone-induced granulomas
- Cat-scratch disease
- Wegener’s granulomatosis
- Pneumocystis carinii pneumonia
Hypercalcemia, Hypercalciuria, Vitamin D2/D3, Parathyroid Hormone and Phosphates
Up to 50% of Sarcoidosis patients may have hypercalciuria (excess calcium in the urine).
Up to 20% may have hypercalcemia (excess calcium in the blood).
First, it is important to understand how the body makes and regulates Vitamin D3.
There are many stages and forms of vitamin D, and this is the simplest explanation I can put together, although by no means complete:
7-Dehydrocholesterol is made in the liver and migrates to the epidermis layer of the skin, where it is changed by UVB (Ultra-Violet in the B range) from sunlight into:
Cholecalciferol which then migrates back to the liver, where it is hydroxylated into: calcifediol, or 25-hydroxyvitamin D3 or 25-hydroxycholecalciferol or 25(OH).
The process of hydroxylation is adding the hydroxide (OH) molecule to the vitamin D molecule.
Calcifediol then migrates to the kidneys, where the enzyme 1-alpha-hydroxylase produces yet another hydroxylation process, (adding yet another hydroxide molecule, making it a dihydroxy form), converting into the active form calcitriol, or 1,25-dihydroxyvitamin D3, or 25(OH)2D
Vitamin D2 (and to a lesser extent D3) are also taken in from the diet, but in smaller quantities, and dietary D2 and D3 are poorly absorbed in the intestine.
Note that if prescription statin medication is taken, this prevents the liver from manufacturing as much 7-Dehydrocholesterol, preventing enough vitamin D from being made, regardless of the amount of sunlight exposure.
The pre-storage (un-hydroxylated) version of D3 can be called:
- Calciferol (can refer to D2 and D3 collectively)
The storage form can be called several names, such as:
- 25(OH) vitamin D
- 25-hydroxyvitamin D3
Vitamin D2 – mostly artificial supplements in “vitamin D fortified” foods and some natural foods.
This version is to be avoided because it displaces the real vitamin D3 which is superior for immunity.
Vitamin D2 is acquired from plant food by the body, and this is the version that is VERY BAD for Sarcoidosis.
Unfortunately, when doctors prescribe supplemental vitamin D, it is almost always the worst kind: Vitamin D2, which must be avoided, even for healthy people.
D2 does nothing for bones, and nothing for immunity, and makes Sarcoidosis worse.
Other names for D2:
- Vitamin D2
D2 is converted in the liver to become:
- 25-hydroxyvitamin D2
The active form of vitamin D3 has many names:
- 1,25 2D
- 1,25 2(OH) D
- 1,25-dihydroxyvitamin D3
- 1,25 dihydroxycholecalciferol
In normal, healthy people, cytokines (macrophages, special white blood cells), also process Calcidiol into Calcitriol, increasing the active D3.
When the patient has Sarcoidosis, this process is magnified, especially in the granulomas where the macrophages accumulate.
The normal immune system has become compromised, leading to an over-abundance of the active D3, in turn raising calcium levels in blood and urine, “stealing” the calcium from the bones (and teeth).
Because Sarcoidosis granules increase production of 1,25-dihydroxyvitamin D (the active metabolite form of vitamin D), increased intestinal calcium absorption is induced.
Higher 1,25 dihydroxyvitamin D increases bone resorption, where the body’s osteoclast cells break down bone into it’s constituent minerals, releasing the minerals into the bloodstream.
This can be aggravated by sunlight exposure and/or supplements, which produce even more vitamin D.
In healthy people, 25(OH) vitamin D (calcidiol) is converted to 1,25 dihydroxyvitamin D (calcitriol) by the enzyme 1-alpha-hydroxylase in the kidneys.
The conversion process is controlled by:
- PTH (Parathyroid Hormone)
- Fibroblast growth factor 23 (FGF23)
- Serum phosphate concentration
Normally, as calcium levels rise, the Parathyroid glands suppress the release of PTH (Parathyroid Hormone), which reduces 1,25 dihydroxyvitamin D production (calcitriol).
All hormones in the body are regulated. If too much or too little is produced, other hormones or enzymes come in to fix the problem, and for the most part, the system works well.
For Sarcoidosis patients, macrophage cells, typically in the granulomas in lungs and lymph nodes, convert 25(OH) or calcidiol into 1,25 dihydroxyvitamin D or calcitriol, without the normal control of PTH (Parathyroid Hormone).
This unregulated production of 1,25-dihydroxyvitamin D can cause hypercalciuria (high calcium in urine), or if the level of 1,25-dihydroxyvitamin D goes over 43.5 pg/ml (pica-grams per ml of blood), causes hypercalcemia (high blood calcium) because at this level, calcium is mobilised from bones into the blood.
If blood calcium levels are high, and parathyroid hormone levels are low, and 1,25-dihydroxyvitamin D is high, then Sarcoidosis or other granular disease may well be the diagnosis.
When 25(OD)D drops too low, the body increases 1,25D to increase calcium absorption, because the body needs calcium for the blood.
Calcium levels in blood are normally low in healthy people, but very important in the blood for electrical and clotting ability.
If we get more 25(OH)D from sunlight or supplements, this forces up 1,25(OH)2D.
The body is then fooled into believing it is low in calcium, and moves calcium from bones to blood, which increases fracture risk.
In this case, PTH (Parathyroid Hormone) will be low, telling the body it has more D and calcium than it needs.
Sarcoidosis patients typically have low PTH (Parathyroid Hormone), slowing production of 25(OH)D, because of the extra source of 1,25D from granulomas.
If the patient has high urine calcium levels, even if both vitamin D levels are normal and serum calcium is normal, high urine calcium is bad.
Blood calcium can be normal is because the kidneys are excreting excess calcium in the urine.
If the kidneys were not able to do this, the patient would have a high blood calcium and become sick.
Even if both vita,in D’s are low, high urine calcium means that no additional vitamin D or calcium supplements should be taken until urine calcium is resolved.
Nearly 60% of Sarcoidosis patients will have high urine calcium at some stage, which is not a concern if the rise in urine calcium is temporary.
If high urine calcium is persistently elevated, it must be treated, otherwise this can cause kidney stones, and eventually can lead to calcification of kidneys and loss of kidney function.
Parathyroid levels show if the body is suppressing vitamin D production as a response to increased blood calcium, which must be filtered out by the kidneys and excreted into the urine.
High blood calcium levels signal the parathyroid gland to decrease liver production of vitamin 25D, whose precursors come from food and from sunlight on skin.
This is why vitamin D levfels aree kept low.
Vitamin D increases calcium absorption from food, and if there is high blood calcium, the parathyroid reduces production of vitamin D to reduce blood calcium.
Excretion of calcium and reduced vitamin D is the body’s protective mechanism for high blood calcium.
However, without treatment, this cannot be kept up permanently, as kidney failure would eventually happen, perhaps 5 to 20 years down the track.
Many symptomless sarcoidosis patients who were never treated suddenly get symptoms of kidney failure, sometimes 20 years after original diagnosis.
During that time, silent hypercalciuria was occurring, was never tested, and then kidney damage becomes apparent.
Hypercalciuria is a silent and insidious symptom of sarcoidosis.
Generally, Sarcoidosis patients do not need to avoid calcium, as calcium is so abundant in so many foods.
But oxalates and phosphates must be avoided.
Phosphorus is also in almost every food we eat.
Phosphorus levels can rise when the kidneys are attempting to lower blood calcium levels.
When blood phosphorus levels are high, calcium and phosphorus bind together to form crystals, which can be deposited anywhere, but often in arteries, causing calcification of atherosclerotic or cholesterol plaques, also can increase stiffening of blood vessels.
Keep off the beach, water, snow and ice, where reflections magnify the suns rays, and limit exposure to the sun.
Carbonated soft drinks contain high phosphorus, especially colas, also chocolate, coffee, tea and orange juice are best avoided.
Doctors often forget the phosphate problems and only concentrate on calcium, but phosphorus is insidious in its actions and has fewer symptoms than calcium when it is high.
Unfortunately there are no absolute tests available for a conclusive diagnosis, but there are tests which, combined with symptoms and/or visible nodules, can lead to diagnosis.
Often, the nodules are visible, but when they are internal, ultrasounds and blood tests become more important.
If nodules are easily accessible, they can be surgically removed and a biopsy performed.
One of the dangers of Sarcoidosis in Hypercalcemia (too much calcium in the blood) There are several essential blood tests:
- 25(OH) vitamin D3
- 1,25 (OH)2D (active vitamin D3)
We need BOTH 25(OH) and 1,25 (OH)2D tested because the kidneys and the nodules can make extra 1,25(OD)2D so this may be high, even when the regular test 25(OH) comes in low.
Without this knowledge we do not know whether to supplement Vitamin D3 or to totally abstain from D3
- ACE (Angiotensin Converting Enzyme) – often elevated with sarcoidosis, used to diagnose and monitor sarcoidosis, and monitor response to treatment.
- Liver Panel or CMP (Comprehensive Metabolic Panel) – to evaluate liver and/or kidney function and to determine if those organs are affected.
- CBC (Complete Blood Count) – to evaluate red and white blood cell changes
- ESR (Erythrocyte Sedimentation Rate) – to detect inflammation
- PTH (Parathyroid Hormone)
- Calculation of estimated ionised calcium level
- hs-CRP (high-sensitivity C-Reactive Protein) – monitors inflammation levels
And 24-hour urine tests (IMPORTANT):
Note: Serum (blood) Calcium level tests are not enough, as this varies considerably even in healthy people. We need the 24-hour urine calcium test to determine the extent of any Hypercalcemia, which can cause kidney stones, kidney damage, blocked arteries, etc.
- CSF analysis – evaluates cerebrospinal fluid when brain or nervous system involvement is suspected
- AFB cultures, sputum cultures, fungal tests – to distinguish between sarcoidosis and other lung or granuloma conditions
- Chest X-ray – to detect granulomas in lungs, sometimes found in people who have an X-ray for some other reason.
- Lung function test – to evaluate lung involvement, lung capacity, and condition severity.
- CT (Computed Tomography), MRI (Magnetic Resonance Imaging), Gallium scan – to help diagnose and evaluate sarcoidosis
- EKG / ECG (electrocardiogram) – when heart involvement is suspected
- If Cardiac involvement is suspected, heterogeneous myocardial FDG uptake may be a useful diagnostic marker of disease activity
- SAA (serum amyloid A protein – a measure if inflammation, normally corresponds with CRP
- sIL2R(soluble interleukin-2 receptor) – perhaps a better measure of inflammation, mainly used to measure and monitor problems in lungs
Interpretation of test results
This is where we need a doctor experienced in treating Sarcoidosis, as most General Practitioners just do not know or may get it wrong.
If Parathyroid hormone is low and 25(OH) vitamin D3 is low, then no supplemental vitamin D3 should be taken.
PTH stimulates 1,25 D production in the kidneys.
If PTH (Parathyroid Hormone) is high (hyperparathyroidism) and blood calcium is high (hypercalcemia) then corticosteroids should be prescribed, but if the hypercalcemia fails to resolve, then further investigation is required.
If tests detect renal (kidney) impairment, hypercalcemia or significant hypercalcuria (over 400 mg per 24 hours), then a 24-hour creatinine clearance test should be carried out.
Also abdominal ultrasound investigations should be performed to exclude urolithiasis (stones in the kidney, bladder, or urethra) or nephrocalcinosis (calcium deposits in the kidneys).
Hypercalcemia in patients formally diagnosed with acute sarcoidosis require no further testing, and corticosteroid therapy with monitored response is the next step.
Hypercalcemia in patients without confirmation of sarcoidosis require more testing because lymphoma can cause lymphadenopathy (swollen or enlarged lymph nodes) and raise serum calcium levels.
If normal blood tests show no hypercalcemia (high blood calcium), this does not exclude hypercalcuria (high calcium excreted in the urine), so the 24-hour urine calcium test must always be carried out in every patient.
If liver tests show abnormal results, an ultrasound should be performed to exclude any damage to the liver.
If C-Reactive Protein levels are high or increasing, attention should be paid to reducing levels, through Sarcoidosis treatment, and using traditional CRP supplements:
Although Homocysteine is another marker of inflammation, there appears to be no correlation with Sarcoidosis.
High homoscsteine is generally used as a marker for future cardiovascular events.
In most people, no treatment is required and the condition disappears, sometimes in a few weeks, months, or years.
Around one third of patients will have no more symptoms within 3 years, and another third will have no more symptoms within ten years.
Those with mild symptoms may not need treatment, but must be monitored to ensure the condition does not get worse.
The main goal is to decrease inflammation, relieve symptoms, and minimize organ damage.
Those with moderate to severe symptoms or at risk for organ damage are usually given corticosteroids such as Prednisone.
Corticosteriods are anti-inflammatory medications, given orally, topically, injected, or through an inhaler.
Corticosteroids mimic the hormones of the adrenal glands, which sit on top of the kidneys. This suppresses inflammation, reducing Sarcoidosis symptoms.
Also reduces symptoms of arthritis, asthma, lupus, allergies, etc and help excrete excess calcium.
The immune system is also suppressed, helping prevent diseases where the body’s immune system attacks it’s own healthy cells.
Other immune-suppressing medications may also be prescribed.
Long-term corticosteroid use will bring significant side-effects.
Side effects – Oral corticosteroids:
- Glaucoma (elevated pressure in the eyes)
- Fluid retention, causing swelling in lower legs
- Increased blood pressure
- Weight gain, fat deposits or swelling, mainly in abdomen, face (moon face) back of neck, fingers, hands, feet or lower legs
And oral medications taken long-term:
- Cataracts (clouding of the lens in one or both eyes)
- Diabetes (high blood sugar)
- Increased infection risk
- Osteoporosis (thinning bones, fracture risk)
- Suppressed adrenal gland hormone production
- Thin skin, bruising, poor wound healing
- Hunger leading to weight gain
- Agitation, anger, depression, mood swings, increased risk of suicidal behaviour
- Neuropsychiatric disorders
- Potassium loss
- Muscle weakness
- Peptic ulcers, intestinal bleeding
- Pounding in the ears
- Shortness of breath, troubled breathing at rest
- Trouble thinking, speaking, or walking
- Sluggishness (or hyperactivity)
Side effects – Inhaled corticosteroids:
When using an inhaler, corticosteroids may deposit in the mouth and throat, on it’s way to the lungs, causing:
- Oral Thrush (fungal infection in the mouth)
Avoid these problems by a gargle and rinse with water (do not swallow) after each puff of the inhaler
Inhaled corticosteroid drugs for asthma slow growth rates in children, although they do not appear to affect their final adult height.
Side effects – Topical corticosteroids:
- Thin skin
- Red skin lesions
Side effects – Injected corticosteroids:
Near the site of the injection, effects may include:
- Shrinking of soft tissue
- Loss of skin colour
Corticosteroid injections are generally limited to 3 to 4 annually.
To minimise side effects:
- Try lower doses or intermittent dosing
- Use low-dose, short-term medications
- Use oral corticosteroids rather than injections as the dose can be varied daily
- For lung problems, the inhaled version go directly to the lungs, limiting exposure to the rest of the body
- Reduce calories and increase exercise to prevent weight gain
- Exercise will reduce muscle weakness and osteoporosis risk
- Eat an alkaline-forming diet to avoid acids leaching calcium from the bones
- Get sunlight and/or Vitamin D supplements if there is no hyperglycemia
- Discontinue slowly so that adrenal glands can recover
HP Acthar gel
Normally injected to help regulate adrenal gland function.
In the past, used to treat allergy-related conditions, breathing, blood, endocrine issues, arthritis, skin or eye problems, bowel inflammation, MS (multiple sclerosis), some cancers, and more recently for Sarcoidosis, either with or without corticosteroids.
HP Acthar gel is an adrenal hormone, and stimulates the body to produce more adrenocortical hormones including corticosteroids and glucocorticoids.
NSAIDs (nonsteroidal anti-inflammatory drugs) like ibuprofen are used for pain and inflammation (again with side-effects).
Methotrexate and other immune-suppressing drugs are used for lung, skin, or eye involvement.
Hydroxychloroquine (anti-malarial drug) used for skin and nervous system involvement, especially in those with high calcium levels.
Other prescription medications include Remicade (Infliximab) and Enbrel (Etanercept).
Most people can be successfully treated, but medications may be required for extended periods.
Very rarely, patients may need an organ transplant if lungs, liver or kidneys are severely damaged.
If Sarcoidosis is found in chest x-rays, corticosteroids are usually given, even if there are no other symptoms.
Arthritis and muscle weakness can be helped with physiotherapy or mobility aids.
ARB (Angiotensin Receptor Blockers) are normally used to control high blood pressure, it is involved in the inflammation of the granulomas.
ARBs may help reduce severity of symptoms.
Antibiotics – Low-dose, pulsed, bacteriostatic antibiotics can often help the immune system defeat Sarcoidosis.
ARB – Angiotensin Receptor Blockers are commonly used to control high blood pressure, but have shown benefit for Sarcoidosis patients.
Anti-Fungal Treatment – Beta-Glucan is a constituent of fungal cell walls, and has been found in BAL (broncho-alveolar lavage) fluid in sarcoidosis patients.
Anti-fungal medication may be prescribed for newly diagnosed, mild cases. More studies are required before higher anti-fungal doses are given to more severe cases.
There are many natural treatments, and most will reduce severity, speed recovery and reduce chances of a relapse, and can be used in conjunction with prescription medication.
Given that fungi may be a issue, steps taken to reduce fungi around the home or work environment may help:
- Allow plenty of light and fresh air into the building to reduce mould.
- Replace old carpets with tiles, floating timber or other clean floors
- Use a central vacuum system to exhaust all air outside the building
- Avoid having animals in the home, as they bring in fungi on their feet and fur.
Oregano Oil has excellent anti-fungal properties.
Brushing teeth with a mixture of a few drops of oil diluted with a quantity of grapeseed oil is enough to impact fungi, parasites and bad bacteria in the mouth, where the immune system starts.
Garlic an odourless capsule or a natural food contains Ajoene which has potent antifungal properties.
Garlic is also anti-bacterial, anti-viral and can help lower blood pressure and improve cardiovascular health.
Coconut Oil is another natural anti-fungal product, also anti-bacterial, anti-viral, and helps reduce excess body fat, as it contains MCT (Medium Chain Triglycerides) which go straight to the liver to be burnt as fuel, and cannot be stored as fat in the body.
Grapefruit Seed Extract has powerful anti-fungal properties, but works best in conjunction with others above rather than alone.
Other Natural Treatments
d-Mannose is a form of sugar, but is safe for diabetics, and reports by Sarcoidosis patients claim relief of symptoms.
UTI – Urinary Tract Infections
There can be a relationship between Urinary Tract Infections and Sarcoidosis.
UTI tests are available from the doctor.
Some Sarcoidosis patients have a genetic variant in MRC1 (Mannose Receptor gene) called carbohydrate-deficient glycoprotein syndrome, an inherited metabolic disorder, and supplementing with d-Mannose may help control UTI.
The active ingredient in Cranberries (and juice) contains natural d-Mannose, which is a type of sugar, but unlike sugar, it has almost zero effect on blood glucose levels, so is safe for diabetics, and shown to improve UTI (Urinary Tract Infections), and safer than cranberries which also contain fructose and other sugars.
The benefit for UTI appears to be it’s ability to affect the lining on the internal walls of the bladder, urethra and related areas to prevent harmful bacteria from “sticking” to those walls, preventing colonisation by allowing them to be flushed away in the urine.
Many reports by Sarcoidosis patients claim relief of symptoms.
Sarcoidosis patients, especially women over 60, and those on corticosteroids, are more prone to UTI.
UTI is mainly caused by the bacteria E.coli which attaches to the walls of the bladder and urinary passages, and in serious cases can work it’s way up to the kidneys, where it can cause more serious damage.
Mannan-Binding Lectin (MBL), also called Mannose-binding Lectin, Mannose-Binding Protein or Mannan-Binding Protein (MBP), is a lectin that is important for correct immune function.
The function of MBL appears to be pattern recognition in the immune system.
MBL recognizes carbohydrate patterns which are found on the surface of many pathogenic micro-organisms such as including bacteria, viruses, protozoa and fungi.
MBL then binds to carbohydrates found on the surfaces of these pathogens, preventing them from attaching to parts of the body.
In the case of urinary infections, E.coli is attracted to the lectins instead of the urinary linings, allowing the urine system to then flush away the bound E.coli and this is a more effective and safer treatment than antibiotics which is the normal treatment given by doctors.
Note that in the Marshall Protocol (see below), d-Mannose is prohibited, but I believe Marshall is wrong.
All of the science indicates d-Mannose> improves inflammation, regulation of the immune system, and removal of:
- Bacteria such as Salmonella, Streptococci, E.coli
- Yeasts such as Candida Albicans
- Viruses such as HIV, Coronavirus and Influenza A
- Parasites like Leishmania
More info: Mannan Binding Lectin
Stem Cell Therapy
Promising results with stem cell treatment so far for patients with lung damage, but it may be some time before this therapy is widely available.
Currently it is several thousand dollars, and most Health Insurance companies will not cover this treatment.
CytoSorb® – a Cytokine Filter CytoSorb® is used in immunotherapy to improve ability to prevent multiple organ failure, which is a leading cause of death in the ICU (intensive care unit).
In response to serious sepsis, infection, trauma, burns, lung injury, pancreatitis, and inflammation, the body can over-react by producing a massive “cytokine storm”.
Cytokines normally help an injured body, but cytokine storms drive major inflammation and severe pathophysiologic cell damage, organ failure and even death.
Cytokine storm reduction can help limit the cascading of events, helping patients to survive.
In the past, there was no significant method to control cytokine storms, but CytoSorb® is an extracorporeal cytokine adsorber, now approved in the European Union.
Use in any condition where cytokines are elevated, such as Sarcoidosis, and compatible with hemodialysis machines and blood pumps.
Blood is pumped from the body, through the CytoSorb® cartridge, and purified blood is retuned to the patient.
In six hours, the entire blood volume can be filtered 20 times.
Oxalates and Kidney Stones
Avoid foods high in oxalates. Kidney stones can cause excruciating pain, and Sarcoidosis patients with high calcium are more prone to kidney stones.
Also, a diet high in oxalates increases kidney stone risk for even normal, healthy people.
Many foods contain oxalates, but the following are the foods proven to increase kidney stone risk:
- Beets (beetroot)
- Wheat bran
- All beans (fresh, canned, or cooked), excluding lima and green beans
Stop Sarcoidosis Physician’s Treatment Protocol.
Marshall protocol developed Trevor Marshall, an electrical engineer.
Marshall hypothesizes that bacteria lacking cell walls can live inside immune cells and thus evade detection and elimination by the immune system.
Not accepted by most doctors and supported only through anecdotal evidence, but worth reading.
Said by many to be a scam because to only way to obtain it is to buy the e-book at around US$37 but still contains some useful information.
Most reports I have read say it does not work, but I agree with the Serrapeptase supplementation and some of the other foods to include and avoid.
Serrapeptase has the ability to break down cysts, dead cells, granulomas and some tumours.
The best way of preventing Sarcoidosis is to reduce risk of the condition starting:
Ensure healthy levels of vitamin D3 (but reduce vitamin D3 if diagnosed)
Lose excess weight
Eat a healthy diet of fresh vegetables, especially leafy greens for vitamin K2, or supplement with K2 and B12.
Avoid processed foods, excess carbohydrates, all added sugar, mouldy food
Build a solid immune system by:
- Incorporate fresh, natural food in the diet, avoid all processed food
- Avoid sugar and high-carbohydrate foods
- Work on oral hygiene as the mouth is the first line of defense against invaders
- Improve intestinal health, the second and most important part of the immune system: Acidophilus Probiotic Blend
Erythema Nodosum – lumps on legs Confusion with Vitamin D The production of vitamin D (which is actually not a vitamin, but a steroid hormone) is a complex process, but the process is different in those with sarcoidosis.
I will attempt to explain the difference:
If the doctor orders a vitamin D blood test, the standard test is called 25(OH) which is not vitamin D, but a precursor to the ACTIVE form of vitamin D (1,25(OH)2D).
In normal, healthy people, this is not a problem, but the Vitamin D creation process is a long and complex, and many things can go wrong along the way.
In sarcoidosis patients who are untreated, the normal test of 25(OD)D comes back as low, and it is low because of the sarcoidosis disease process.
However, doctors must test the 1,25D because in untreated sarcoidosis, it is usually high.
Unfortunately, doctors inexperienced in treating sarcoidosis don’t do the correct test and don’t understand the difference even if they do.
The D3 hormone
Because vitamin D3 is essentially a steroid hormone and not a vitamin, it follows hormone rules in the body, meaning there is always a feedback system for all hormones.
If there is a low hormone level, a signal is sent to increase production of that hormone.
If there is a high hormone level, another signal is sent to slow or stop production, and this feedback system results in a state of equilibrium, or homeostasis.
Vitamin D3 receptors
In healthy people, almost all of the 60 trillion cells in the body have Vitamin D3 receptors.
This means that every time a D3 molecule goes past a cell, there is a special “key” in D3 which exactly fits the corresponding “lock” on the cell, and the two unite.
The cell now has much greater benefits for immunity, bone building and many other health benefits.
But this process allows a gene transcription of CYP24, an enzyme which can break down excess 1,25 D.
In sarcoidosis patients, the vitamin D3 receptor is blocked, often by 25D which attenuates inflammation and immunity, which is good thing in moderation.
However, the 25D is converted into 1,25 to excess, causing weight gain, fluid retention, headaches, nausea, and sometimes anorexia or neuropathies, all sarcoidosis symptoms.
With 25D blocking the VDR it cannot work properly to transcribe the genes which perform other body functions like making enzymes, antibacterial peptides or regulation of the hormone system generally.
This is those with sarcoidosis may have problems with menstrual periods or have thyroid issues.
Another reason why 25D is low in sarcoidosis patients is that where 1,25D normally binds to vitamin D receptors, it instead binds to PXR receptors.
The 1,25D binds where the 25D should bind and vice versa, and when PXR is activated by 1,25D it causes the CYP27A1 enzyme to be produced, stopping liver production of 25D from pre-D3.
Further, 25D is low because a another enzyme CYP27B1 produced by sarcoidosis granulomas, activated by PKA (Protein Kinase A), increases the conversion rate of 25D into 1,25D, so any available 25D is quickly converted into 1,25 D.
If the doctor prescribes vitamin D3 supplements, it blocks the VDR, stopping production of gene transcription for thousands of bodily functions, because PKA produced in the granulomas will cause enzymatic action to rapidly convert more 25D into 1,25 D.
Because the VDR is blocked, the enzyme CYP24 which breaks down excess 1,25 D cannot be transcribed, resulting in excess 1,25D, leading to development of calcium metabolism. problems.
When 1,25D reaches a high level in blood, osteoclasts in the bone are stimulated to release calcium, and the intestines are also stimulated to absorb more calcium, leading to high calcium levels in both urine and blood.
In sarcoidosis PTH has little effect, and often PTH is low when urine calcium is high, and less often, blood calcium is also high.
High calcium can lead to bone loss, osteoporosis and osteopenia, and calcium can be deposited in organs, especially kidneys, where calcium causes kidney stones or worse, blocked tubules causing kidney failure.
Calcium may also deposit in the brain, blood vessels, skin and other organs. Medication can help prevent excess calcium buildup by blocking the enzyme actions.
Prednisone, hydroxychloroquine and ketoconazole all help. Prednisone or hydroxychloroquine can bring down 1,25 D levels to normal.
Bisphosphonates are sometimes given to postmenopausal women but they are ineffective if given with supplemental vitamin D, and are not recommended for premenopausal women in any case.
Giving vitamin D supplements or cod liver oil to an untreated sarcoidosis patient can cause a hypercalcaemic state in a few weeks, and because few symptoms will appear until hypercalcemia is well advanced, urine and blood testing is essential.
LeanMachine does not recommend bisphosphonates in any case, as the method of action is to prevent osteoclasts from breaking down old bone. This will increase bone density, but makes bones more brittle, as it prevents osteoblasts from building new bone, as the bones become full of old bone.
Bones become “dead” allowing infection to become a problem, and many patients on bisphosphonates have lost their bottom jaw, which is not a pleasant thing.
Vitamin D Summary
If the patient has low vitamin D and a corresponding low PTH (parathyroid hormone), they should NOT take vitamin D.
In healthy people, if vitamin D is low, PTH increases, instructing kidneys to provide extra hydroxylation of 1,25D.
With sarcoidosis, PTH remains low because 1,25D is high even though 25D is high.
If we are truly deficient in 1.25D, PTH would never be low.
So if PTH is high, supplemental vitamin D3 is indicated, but if PTH is low, vitamin D3 must be avoided because it can make the sarcoidosis worse.
Extra D3 will add to the extra 1,25D produced by granulomatous inflammation, and will not broken down because 25D blocks the receptors that 1,25D should be binding to.
Over 50% of patients recover within three years, and up to 70% recover in 10 years, with little or no problems.
Sarcoidosis may return a year or more after recovery, but generally in less than 5% of cases.
Lofgren’s syndrome patients usually all recover fully.
Sarcoidosis can damage organs in around 33% of cases, usually where the condition is untreated where damage takes many years and involves multiple organs.
Death is rare, usually as a result of complications with the lungs, heart, brain, or related to another condition.
Risk Factors for untreated Sarcoidosis
- Chronic, long-term Sarcoidosis
- Lung scarring, heart or brain complications
- Lupus pernio, a skin condition caused by Sarcoidosis
- Eye, brain, heart, liver damage
Annual eye exams are important for all Sarcoidosis patients.
For changes in vision or poor eyesight or poor colour definition, seek medical assistance immediately.
Any eye symptoms like burning, itching, tearing, pain, or light sensitivity also require medical assistance.
Risk factors for increased calcium and vitamin D in sarcoidosis
- Disease is not in remission
- Disease is spread to organs outside of hilar lymph nodes
- Disease currently active and receiving no treatment
- Disease is currently active and being treated with drugs other than prednisone and/or plaquenil
- Male Gender
- Previous history of kidney stones
- Previous history of hypercalcemia
- Working outdoors
- Taking supplemental vitamin D or calcium
- Has uncontrolled diabetes
- Has uncontrolled kidney disease
- Diet high in phosphorus and/or calcium and/or oxalate
The more things apply to the patient, the higher the risk for even worse Sarcoidosis.
Drugs that can interact negatively with sarcoidosis, including some common blood pressure drugs.
Search this list for any medication you are taking: www.ehealthme.com/symptom/sarcoidosis
Testing for Sarcoidosis
There is no definitive single test to diagnose Sarcoidosis.
Generally, a diagnosis is made after evaluating family history, symptoms, and various tests which may not mean much on their own, but point to Sarcoidosis when all of the facts and results are put together.
Sarcoidosis is different again when blood tests, urine tests and symptoms differ between individuals and differ also depending on the severity or mildness of the condition.
Ruling out what it is NOT
Part of the diagnosis is to rule out other things.
For example, Sarcoidosis is a CTD (Connective Tissue Disease), but there are a number of other diseases with often similar symptoms such as Wegener’s granulomatosis, RA (Rheumatoid Arthritis), SLE (Systemic Lupus Erythematosus), Polymyositis, CREST (Calcinosis, Raynaud disease, Esophageal motility disorder, Sclerodactyly, and Telangiectasia), CNS (Central Nervous System), Sjögren syndrome, Scleroderma, or different combinations of everything.
See the diagnostic road map (where Sarcoidosis is not even mentioned): Mayo Medical Laboratories)
Wegener’s granulomatosis is a connective tissue disease but has different symptoms: Blood flow is restricted when the vessels swell.
Common symptoms are nosebleeds, sinus pain, inflammation, constantly runny nose, pus-filled nasal discharge.