28th Feb 2017 is Rare Disease Day: what can you do to spread awareness of Sweet’s syndrome?

The 28th February 2017 is Rare Disease Day, and it marks the tenth international Rare Disease Day coordinated by EURORDIS (the European Organization for Rare Diseases). On and around this day patient organizations from countries all over the world will be promoting awareness of rare diseases and holding awareness-raising activities, many of which will be based on the Rare Disease Day 2017 theme of research.

What can you do to spread awareness of Sweet’s syndrome?

  1. Like our Facebook page.
  2. Join our HealthUnlocked forum and community. It’s free!
  3. Follow this blog.
  4. Follow on twitter @sweetsfiend
  5. Follow on Google +.
  6. Talk about Sweet’s syndrome: share some posts; comment; blog about your experiences; tag a friend; tweet for Sweet’s.
  7. Make a donation to the Autoinflammatory Alliance. This is a US-based non-profit organization that helps children and adults with autoinflammatory conditions, including Sweet’s syndrome.
  8. Make a donation to Skin Conditions Campaign Scotland. Sweet’s Syndrome UK is a patient organization member of this charity. This gives us a greater ability to spread awareness of Sweet’s syndrome throughout the UK via Scotland.
  9. Visit the Rare Disease Day website, and sign up for their updates, download free materials, follow on social media, and read about how research can bring hope to those with a rare disease.
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Mindfulness can reduce psychosocial distress in patients with conditions affecting the skin

What is mindfulness?

Taken from the UK mental health charity, MIND (MIND, 2016).

MIND describes mindfulness as:

‘A technique which can help people manage their mental health or simply gain more enjoyment from life. It involves making a special effort to give your full attention to what is happening in the present moment – to what’s happening in your body, your mind or your surroundings, for example – in a non-judgemental way. Mindfulness describes a way of approaching our thoughts and feelings so that we become more aware of them and react differently to them.’

Can mindfulness help those with conditions affecting the skin to cope better?

Yes. A study by Montgomery et al has shown that mindfulness can help people ‘to reduce the distress associated with social anxiety and avoidance found in many skin conditions’ (Montgomery et al, 2016). This is very important, as those with conditions affecting the skin are at increased risk of developing anxiety and depression, often avoid social situations as a result of the distress that they cause, and can experience disability levels that are the same as those with other long term diseases.

Can anyone be mindful, and are there different ways to be mindful or practice mindfulness?

Yes. Anyone can be mindful, and there are many different ways in which you can practice mindfulness, e.g. by stopping to notice the small everyday things, by practising meditation or yoga, and by watching your thoughts or learning to view them in a different way (NHS Choices, 2016). For more information on how to be mindful, see ‘References’ below and click on the links.

References.

MIND (2016) Mindfulness (online).

Montgomery, K., Norman, P., Messenger, A. and Thompson, A. (2016) The importance of mindfulness in psychosocial distress and quality of life in dermatology patients. British Journal of Dermatology, Nov;175(5):930-936 (online).

NHS Choices (2016) Stress, Anxiety and Depression: Mindfulness (online). Includes information on the different ways in which you can be mindful.

Skin Support (2017) Support Materials. British Association Dermatologists (online). Includes ‘Meditations and Mindfulness’.

© 2012-2017 Sweet’s Syndrome UK

Alternative and nutritional therapies that don’t work, should be used with caution, or completely avoided in patients with Sweet’s syndrome

Reposted on 13/10/16, updated on 16/06/17.

Can alternative or nutritional therapies be used to treat or cure Sweet’s syndrome?

No. There is absolutely no evidence to show that Sweet’s syndrome can be successfully treated or cured with alternative or nutritional therapies. However, some of these therapies may be helpful in promoting overall psychological or physical good health and well-being.

Are you sure that alternative or nutritional therapies can’t be used to treat or cure Sweet’s syndrome, or is this simply a lie that ‘Big Pharma’ wants us to believe?

Yes. At present, the general consensus of the medical community is that there is no alternative or nutritional therapy that can be used to treat or cure Sweet’s syndrome. However, some people are being lied to, and told that there are natural and alternative cures for Sweet’s syndrome, but that ‘Big Pharma’ doesn’t want them to know about it.

Who or what is ‘Big Pharma’?

‘Big Pharma’ is a term that’s used to refer to the pharmaceutical industry. Some conspiracy theorists believe that doctors, the pharmaceutical industry and the government, are trying to keep us sick and prevent or discourage us from accessing alternative ‘miracle cures’. This is supposedly being done so that we’ll be forced to buy and use the medications that ‘Big Pharma’ produce and sell, which will continue to make them very rich. There is no evidence to support this theory, but it is not unusual for those selling bogus treatments to resort to the ‘Big Pharma’ conspiracy simply to try and back up their false claims. This is done to try and convince you that their treatments really do work, but that ‘Big Pharma’ never wants you to discover this secret truth, because it will negatively affect their profits. If someone does resort to the ‘Big Pharma’ conspiracy to back up their claims, then it’s a red flag and a strong indication that they probably can’t be trusted.

Are alternative and nutritional therapies always safe to use?

Alternative and nutritional therapies are sometimes safe to use, but not always. Some of these therapies are potentially harmful, or could make Sweet’s syndrome worse. Herbal supplements in particular, can cause lots of problems. One real concern is that they can interact with medications or reduce their effectiveness, and sometimes, any interactions that do occur can be dangerous. Before trying an alternative or nutritional therapy, please check with your doctor first.


Alternative and nutritional therapies that don’t work, should be used with caution, or completely avoided in patients with Sweet’s syndrome.

This is list of alternative and nutritional therapies that don’t work, should be used with caution, or completely avoided. Despite this fact, they are still being advocated or sold as treatments or cures for Sweet’s syndrome by alternative therapists, other individuals and businesses. These treatments include:

Acupuncture.

No evidence to show that acupuncture works, and should be used with caution. This is because the skin damage caused by the treatment, i.e. the skin being punctured by the needles, may trigger the development of new skin lesions, and this is referred to as pathergy. However, not all Sweet’s syndrome patients demonstrate pathergy. Read more here.

Baking soda (sodium bicarbonate).

Baking soda is being advocated as a treatment for Sweet’s syndrome, myelodysplastic syndromes and leukaemia, and other cancers – in 15-20% of patients, Sweet’s syndrome develops secondary to some form of cancer. This is an incredibly dangerous pseudoscientific claim, i.e. a false or made-up claim that appears to be scientifically-based, but is not. Anyone who makes such claims should not be believed, and treated with caution. Read more here.

Change of diet or elimination of dietary toxins.

There is no evidence to show that Sweet’s syndrome is caused by diet or dietary toxins, or that a change in diet can directly improve or cure it. Sweet’s syndrome is caused by errors in the innate immune system and involves factors such as hypersensitivity reaction, cytokine dysregulation and genetic susceptibility. Special diets, e.g. alkaline, anti-inflammatory, detox, gluten-free, Palaeolithic, dairy-free and vegan, are not treatments for Sweet’s syndrome, and could increase the risk of nutritional deficiency in some people.

If possible, try to avoid a dairy-free diet, particularly a vegan diet, if you have been taking systemic steroid medication for more than 3 months. This kind of diet may be lower in calcium, and if you are taking steroids, it is very important that you meet your daily calcium requirements (Clarys et al, 2014: 1319, 1321, 1324, 1327). This is because you will be at increased risk of developing steroid-induced osteoporosis.

You may also need to be careful about nutritional deficiency if you have other types of health condition, are pregnant, or on a low income. In regards to the latter, you might not have that much money to spend on food and may struggle to meet your nutritional needs as a result.

Chiropracty and osteopathy.

Sweet’s syndrome frequently causes joint pain (arthralgia) or joint pain and swelling (arthritis), and can sometimes develop secondary to autoimmune conditions that affect the joints, e.g. ankylosing spondylitis, rheumatoid arthritis, systemic lupus erythematosus, or Sjögren’s syndrome. However, there is no evidence to show that chiropracty or osteopathy can be used to treat or cure Sweet’s syndrome, and if the joints are painful and swollen, osteopathy and chiropracty should be avoided, at least, until the swelling has reduced and been brought under control (Baxter, 2017; NHS Choices, 2014; NHS Choices, 2015b). This is because joint manipulation could make symptoms worse.

In people with osteoporosis, or ankylosing spondylitis where the joints are fused, joint manipulation can lead to fracture (Baxter, 2017).

In those with rheumatoid arthritis who have upper neck instability, joint manipulation can be very dangerous due to the increased risk of spinal cord compression.

Physiotherapy, which is not the same as osteopathy or chiropracty, is completely safe.

EAV or bioenergetics.

EAV or bioenergetics are tests that involve using electrodiagnostic devices to supposedly determine the cause of a disease by detecting the ‘energy imbalance’ causing the problem, or even cure a condition by correcting this imbalance. These tests and treatments are a scam, and there is absolutely no medical evidence to show that they work. In the United States (US), the importation of EAV devices has been banned. If you are in the US and someone offers you, or refers you for EAV testing, please report them to the relevant authorities.

Essential oils.

No evidence to show that essential oils work, and should be used with caution when applied to the skin. This is because of potential skin irritation and pathergy response. Read more here.

Homeopathy.

Homeopathy is being advocated as a treatment for Sweet’s syndrome by some alternative therapists. This is a pseudoscientific claim, and there is no evidence to support this claim. In fact, in 2010, the House of Commons Science and Technology on Homeopathy, made it clear that homeopathic remedies perform no better than placebos, and that the principles on which homeopathy is based are ‘scientifically implausible’ (NHS Choices, 2015a). Please take this into consideration before choosing to try homeopathy. However, if you do choose to try it, then it is probably safe.

Probiotics.

There is no evidence to show that probiotics can be used to directly treat Sweet’s syndrome, but they are generally very safe to use. Research into probiotics is limited, but they can be useful in preventing antibiotic-associated diarrhoea, treating infectious diarrhoea, protecting premature babies from gut disease, irritable bowel syndrome, lactose intolerance, and pouchitis in people with the inflammatory bowel disease (IBD), ulcerative colitis (NHS Choices, 2016). Sometimes, Sweet’s syndrome can develop secondary to the IBDs, ulcerative colitis and Crohn’s disease, and if the IBD flares up then the Sweet’s syndrome often will too. However, at present, there is a lack of evidence to prove conclusively that probiotics can be useful in the management of Crohn’s disease or ulcerative colitis without pouchitis.

Red root (blood root, bloodwort). 

Red root is being advocated as a treatment for Sweet’s syndrome by some alternative therapists in the US. There is no evidence to support this claim, and it should be avoided or used with caution as it may not always be safe to use. Red root is a debriding agent (removes skin tissue) which means it should never be applied to the skin lesions of patients with Sweet’s syndrome, as there is an increased likelihood that it will trigger the development of new lesions. It should also be completely avoided by those with certain health conditions or taking medication. Read more here.

Some other herbs and supplements to be used with caution.

There is no evidence to show that the following supplements can be used to treat Sweet’s syndrome. The algae chlorella is not suitable for those taking certain medications and could make the symptoms of autoimmune conditions, and possibly Sweet’s syndrome worse, particularly if the Sweet’s syndrome has developed secondary to an autoimmune condition. Alfalfa, astragalus, echinacea, and oral zinc should also be used with caution. Read more here.


Further information.

Arthritis Research UK (2017) Complementary and Alternative Medicines (online). Accessed 25/04/17.

Arthritis Research UK (2017) Diet and Nutritional Supplements (online). Accessed 25/04/17.

A warning about Polly Heil-Mealey! Sweet’s syndrome cannot be cured with herbs or homeopathic remedies.

Can vaccination trigger Sweet’s syndrome?

What is the treatment for Sweet’s syndrome?


References.

Baxter, S. (2017) Healing with Chiropractic Medicine. Arthritis Foundation (online). Accessed 16/06/17.

Clarys, P., Deliens, T., Huybrechts, I., Deriemaeker, P., Vanaelst, B., De Keyzer, W., Hebbelinck, M. and Mullie, P. (2014) Comparison of nutritional quality of the vegan, vegetarian, semi-vegetarian, pesco-vegetarian and omnivorous diet. Nutrients, Mar 24;6(3):1318-32 (online).

NHS Choices (2014) Chiropractic (online). Reviewed 20/08/15, and accessed 30/03/17.

NHS Choices (2015a) Homeopathy (online). Reviewed 15/02/15, and accessed 30/03/17.

NHS Choices (2015b) Osteopathy (online). Reviewed 10/06/15, and accessed 30/03/17.

NHS Choices (2016) Probiotics (online). Reviewed on 28/01/16, and accessed 16/06/17.


Additional note.

Sweet’s Syndrome UK does not promote the use of alternative or nutritional therapies. This is because there is no evidence to show that these therapies are effective, or sometimes even safe to use in those with Sweet’s syndrome. If anyone does have information that proves that alternative or nutritional therapies can be used to treat Sweet’s syndrome, I will be more than happy to read it. However, only peer-reviewed medical articles and case-studies will be accepted as evidence. The following will not be accepted as evidence: anecdotal evidence and personal stories; testimonials; YouTube videos; information on blogs or websites where there are no references or links to peer-reviewed medical articles or case-studies, or where the author is not willing to provide this information; blogs or websites where someone tries to pass off their feelings or instincts, beliefs or opinions as facts or evidence – Michelle Holder, Sweet’s Syndrome UK.

Keep safe!

© 2012-2017 Sweet’s Syndrome UK

Two neutrophilic dermatoses captured simultaneously on histology (Sweet’s syndrome and neutrophilic eccrine hidradenitis)

Links checked on 2/03/17.

This is the second reported case of Sweet’s syndrome and neutrophilic eccrine hidradenitis occurring in a patient with acute myeloid leukaemia at the same time (Wlodek et al, 2016).

Key points.

  • Sweet’s syndrome (SS) is a rare autoinflammatory condition and form of neutrophilic dermatosis (ND), and in 15-20% of patients can be triggered by cancer, including blood cancers.
  • Other forms of ND include neutrophilic dermatosis of the dorsal hands, Behcet’s syndrome, pyoderma gangrenosum, neutrophilic eccrine hidradenitis (NEH), erythema elevatum diutinum, and bowel-associated dermatitis-arthritis syndrome.
  • ND are skin conditions that occur as a result of lots of white blood cells called neutrophils infiltrating the tissues.
  • A number of ND are associated with cancer and their treatment, but more than one kind of ND rarely occurs together in the same patient at the same time.

Case-study.

This is a case of a 72-year-old man who was being treated for acute myeloid leukaemia (AML) with chemotherapy – daunorubicin and cytarabine. Within 48 hours of starting treatment he developed a fever, and two days later, wide-spread non-tender pink plaques (skin lesions that appear in the form of large raised areas) on the limbs and trunk. A skin biopsy showed lots of white blood cells in the tissues – lymphocytes and histiocytoid cells, but mainly neutrophils. Neutrophils had also infiltrated the fatty tissue under the skin, and this is known as panniculitis. All of these finding were consistent with SS. In addition, neutrophils and lymphocytes were also present around the sweat glands, and this is consistent with NEH. NEH is commonly caused by chemotherapy, including cytarabine, but can sometimes occur for other reasons.

The authors of this study have determined that the neutrophilic infiltrate that is found in a patient with SS has the potential to extend around the sweat glands, thus leading to NEH.

Further information.

Copaescu, A., Castilloux, J., Chababi-Atallah, M., Sinave, C. and Bertand, J. (2013) A Classic Clinical Case: Neutrophilic Eccrine Hidradenitis. Case Reports in Dermatology, Sep-Dec; 5(3): 340–346 (online).

Tan, E. (2007) Skin toxicity of chemotherapy drugs. DermNet NZ (online). Accessed 2/03/17.

References.

Wlodek, C., Bhatt, N. and Kennedy, C. (2016) Two neutrophilic dermatoses captured simultaneously on histology. Dermatology Practical & Conceptual, Jul; 6(3): 55–57 (online).

© 2012-2017 Sweet’s Syndrome UK

Mouth Ulcers and Sweet’s Syndrome

Updated 31/03/17.

Does Sweet’s syndrome cause mouth ulcers?

Yes. Occasionally, Sweet’s syndrome can cause mouth ulcers (aphthous-like ulcers), but this is a symptom that is more commonly associated with the similar condition, Behcet’s syndrome.

Can Sweet’s syndrome cause other mouth problems?

Yes. On rare occasions, Sweet’s syndrome can cause other mouth problems, and also affect the throat. Reported symptoms include:

  • Cracks or fissures on the corners of the mouth (Contrucci and Martin, 2015).
  • Lesions on the inside of the lips (haemorrhagic bullae and vesicles, and necrotic nodules) (Cohen, 2007).
  • Lesions on the gums (haemorrhagic bullae and vesicles).
  • Necrotizing ulcerative periodontitis.
  • Enlargement of the gums (gingival hyperplasia) (Ibid).
  • Lesions on the tongue (aphthous-like ulcers, ulcers, and macerated papules) (Cohen, 2007; Kasirye et al, 2011: 135) .
  • Tongue pain, and swollen or enlarged tongue in association with lesions (Cohen, 2007; Contrucci and Martin, 2015; Kasirye et al, 2011: 135).
  • Lesions on the roof of the mouth (macerated papules, individual and grouped pustules, ulcers, and bullae) (Cohen, 2007; Contrucci and Martin, 2015).
  • Lesions affecting the pharynx (individual and grouped pustules) (Cohen, 2007).
  • Lesions on the inside of the cheeks (aphthous-like ulcers, and ulcers).
  • Inflammation of the saliva glands in the cheeks (parotitis) and associated cheek swelling (Jo et al, 2012).
  • Throat pain, painful swallowing, and hoarseness (Contrucci and Martin, 2015).

Read more about the symptoms of Sweet’s syndrome here.


Can mouth ulcers be treated or managed?

Yes. Mouth ulcers can be treated or managed, and the UK charity, the Behcet’s Syndrome Society, has put together a patient-information-leaflet to show you how. The information in this leaflet has been written for those with Behcet’s syndrome, but is also relevant to those with Sweet’s syndrome.

Information in the Behcet’s Syndrome Society leaflet – Behcet’s Disease and Mouth Ulcers – includes (Birmingham Centre of Excellence, 2013):

  • Treatment.
  • Relief of pain.
  • Relief of inflammation and reduction in ulceration.
  • Protective barriers.
  • Antimicrobial agents, including doxycycline (a treatment for Sweet’s syndrome).
  • Colchicine (a treatment for Sweet’s syndrome).

For people in the US with Sweet’s syndrome or other autoinflammatory conditions, lots of useful information about the symptoms of autoinflammatory conditions can be found on the Systemic Autoinflammatory Disease (SAID) Support blog.

Information about mouth ulcers from the SAID Support blog – Mouth Ulcer Treatment and Prevention – includes (Tousseau, 2013):

  • Prescription Magic mouthwash (not available in the UK).
  • Milk of Magnesia and liquid Benadryl.
  • Hydrogen Peroxide and Milk of Magnesia.
  • B vitamins (only if the mouth ulcers are caused by folic acid or B12 deficiency. In Sweet’s syndrome, the ulcers are not caused by deficiency, but a daily B vitamin may help to reduce your overall risk of developing non-Sweet’s syndrome-related mouth ulcers).

A warning about the topical anaesthetic, Benzocaine.

Benzocaine is a topical anaethestic found in some throat sprays or dental gels, and has been associated with an increased risk of seizures and the rare blood condition, methaemoglobinaemia, in young children. The National Institute for Health and Care Excellence (NICE) does not recommend the use of benzocaine or any other topical anaesthetic in children under the age of two, unless on the advice of a health professional or under medical supervision (CKS, 2014).


New research.

Anakinra.

Anakinra (Kineret) is a useful treatment in refractory (chronic or persistent, or difficult-to-treat) Sweet’s syndrome and other neutrophilic dermatosesand autoinflammation of unknown cause (Kluger et al, 2011: Simon et al, 2014). The results of a recent trial have shown that anakinra at an optimal dose of 200mg daily is partially effective in the treatment of resistant oral and genital ulcers in Behcet’s syndrome (Grayson et al, 2017).


Further information.

Ngan, V. and Oakley, A. (2016) Aphthous Ulcers (online). Initially published in 2003, and updated by Professor A. Oakley, Jan 2016. Accessed 30/03/17.


References.

Birmingham Centre of Excellence (2013) Behcet’s Disease and Mouth Ulcers. Behcet’s Syndrome Society (PDF).

CKS: Clinical Knowledge Summaries (2014) Teething – Topical Anaesthestics. NICE: National Institute for Health and Care Excellence (online).

Cohen, P. (2007) Extracutaneous Manifestations: Table 4. In Sweet’s syndrome – a comprehensive review of an acute febrile neutrophilic dermatosis, Orphanet Journal of Rare Diseases (online).

Contrucci, R. and Martin, D. (2015) Sweet syndrome: A case report and review of the literature. ENT Journal, July;94(7):282-284 (online). Sign-up to the ENT Journal for free to access the full article.

Grayson, P. Yazici, Y., Merideth, M., Sen, H., Davis, M., Novakovich, E., Joyal, E., Goldbach-Mansky, R. and Sibley, C. (2017) Treatment of mucocutaneous manifestations in Behçet’s disease with anakinra: a pilot open-label study. Arthritis Research & Therapy, Mar 24;19(1):69 (online).

Jo, M., Lim, Y., Shin, H., Choe, J., Seul, J. and Jang T. (2012) A Case Report of Sweet’s Syndrome with Parotitis. Archives of Plastic Surgery, Jan;39(1):59-62 (online).

Kasirye, Y., Danhof, R., Epperla, N. and Garcia-Montilla, R. (2011) Sweet’s Syndrome: One Disease, Multiple Faces. Clinical Medicine & Research, Nov;9(3-4):134-136 (online).

Kluger, N., Gil-Bistes, D., Guillot, B. and Bessis, D. (2011) Efficacy of anti-interleukin-1 receptor antagonist anakinra (Kineret®) in a case of refractory Sweet’s syndrome. Dermatology (Basel, Switzerland), May;222(2):123-7 (PubMed).

Simon, A. et al (2014) Autoinflammation of Unknown Cause. AUTOINFLAMMATION.EU (online).

Tousseau, J. (2013) Mouth Ulcer Treatment and Prevention. SAID Support (online).

© 2012-2017 Sweet’s Syndrome UK

Herbs and supplements that should be avoided or used with caution in Sweet’s syndrome

Reposted and updated 29/06/16.

Some alternative therapists are recommending or using certain herbs and supplements to treat or ‘cure’ Sweet’s syndrome, despite the fact that there is no evidence that any of these treatments work, and may not be safe to use.

A list of some herbs and supplements that have been recommended or used by alternative therapists to treat Sweet’s syndrome.

Alfalfa – flowering plant.

There is no evidence to show that alfalfa is helpful in the treatment of Sweet’s syndrome. May not always to be safe to use.

Best avoided or used with caution if:

  • You have an autoimmune condition, particularly systemic lupus erythematosus (SLE), as it may increase the risk of a flare-up (see ‘Additional notes’). Also, be aware of the fact that alfalfa can sometimes cause symptoms that are similar to SLE.
  • You have an autoinflammatory condition such as Sweet’s syndrome, particularly if it has developed secondary to an autoimmune condition (see ‘Additional notes’).
  • You have diabetes as it may lower blood sugar levels.
  • You are taking medications that increase sensitivity to sunlight. For example, dapsone, and tetracycline antibiotics such as doxycycline and minocycline.

Do not use if:

  • You have a hormone sensitive condition, e.g. breast cancer or endometriosis, as alfalfa can make these conditions worse.
  • You have had a kidney transplant as it may lead to rejection.
  • You are taking any of these medications: immunosuppressants, e.g. prednisone (see ‘Additional notes), or warfarin, contraceptives, or oestrogens.

Astragalus – flowering plant.

There is no evidence to show that astragalus is helpful in the treatment of Sweet’s syndrome. May not always to be safe to use.

Best avoided or used with caution if:

  • You have an autoimmune condition.
  • You have an autoinflammatory condition, particularly if it has developed secondary to an autoimmune condition.

Do not use if:

  • You are taking these medications: immunosuppressants, or lithium.
  • You are pregnant or breast-feeding.

Chlorella – algae.

There is no evidence to show that chlorella is helpful in the treatment of Sweet’s syndrome. May not always to be safe to use. Read more here.


Echinacea – herbaceous flowering plant.

There is no evidence to show that echinacea is helpful in the treatment of Sweet’s syndrome. May not always to be safe to use.

Best avoided or used with caution if:

  • You have an autoimmune condition.
  • You have an autoinflammatory condition, particularly if it has developed secondary to an autoimmune condition.
  • You are taking the medication midazolam.
  • You drink caffeinated drinks. Echinacea decreases how quickly caffeine is broken down, and this leads to increased levels in the bloodstream.

Do not use if:

  • You are taking immunosuppressants.
  • You are taking any of these medications as echinacea can affect how they are broken down: clarithromycin, clozapine, cyclobenzaprine, cyclosporine, diltiazem, fluvoxamine, haloperidol, imipramine, indinavir, lovastatin, mexiletine, oestrogens, olanzapine, pentazocine, propranolol, tacrine, theophylline, triazolam, zileuton, zolmitriptan, and possibly others (check with your doctor).
  • You are prone to allergies, particularly if you have an allergy to ragweed pollen, chrysanthemums, marigolds, or daisies.
  • You are pregnant or breast-feeding.

Red root – herbaceous flowering plant.

There is no evidence to show that red root is helpful in the treatment of Sweet’s syndrome. May not always to be safe to use.

Dosage:

  • The appropriate dose of red root would depend on factors such as age, medication, and health conditions, but at this time, there is not enough medical evidence to determine an appropriate range of doses.

When taken by mouth, short-term side-effects include:

  • Nausea.
  • Vomiting.
  • Drowsiness, or grogginess.

Other short-term problems:

  • Skin contact with the fresh plant may cause a rash.
  • If it gets into your eyes it can cause irritation.

When taken by mouth and in high amounts (see ‘Dosage’), long-term side-effects include:

  • Increased risk of  developing white patches on the inside of the mouth if used as a toothpaste or a mouthwash.
  • Glaucoma.
  • Low blood pressure.
  • Shock.
  • Coma.

Red root is a debriding agent, i.e. removes skin tissue. Do not apply to the skin if:

  • You have Sweet’s syndrome, or any other condition that is associated with pathergy. This may trigger the development of skin lesions or make existing lesions worse.

Red root is an irritant. Do not take orally if:

  • You have any condition affecting the gastrointestinal tract, including an infection, inflammatory bowel disease, or an inflamed bowel caused by Sweet’s syndrome.

Also, do not use if:

  • You have glaucoma.
  • Are pregnant or breastfeeding.
  • You are taking any medications. There is a lack of information relating to how red root may interact with medications, so it may not be safe to use.

Zinc (oral) – a mineral.

There is no evidence to show that zinc is of any use in the treatment of Sweet’s syndrome. May not always to be safe to use.

Dosage:

  • Safest zinc dosage is 40mg daily or less.
  • Taking more than 100 mg of supplemental zinc daily or taking supplemental zinc for 10 or more years doubles the risk of developing prostate cancer.
  • Single doses of 10-30 grams (10,000-30,000 mg) of zinc can be fatal.

Best avoided or used with caution if:

  • You have diabetes as zinc may lower blood sugar levels.
  • You are pregnant or breastfeeding (high doses).

Do not use if:

  • You are taking tetracycline antibiotics. Zinc prevents them from being absorbed properly.
  • You are taking any of these medications: amiloride, cisplatin, penicillamine, quinolone antibiotics, e.g. ciprofloxacin.

Additional notes.

Why should some of the herbs and supplements listed above be avoided or used with caution in those with autoimmune or autoinflammatory conditions?

Autoimmune and autoinflammatory conditions are caused by an overactive and not an underactive immune system – an overactive adaptive immune system in autoimmune conditions and an overactive innate immune system in autoinflammatory conditions. Some herbs and supplements have been proven to ‘boost’ the immune system. This means that they can increase immune system activity or make it more active. In patients with autoimmune conditions, this has the potential to make their overactive immune systems even more overactive, making symptoms worse. Evidence is needed before we know if these same herbs and supplements can negatively affect autoinflammatory conditions such as Sweet’s syndrome, but as yet, no research has been conducted. However, it is important to remember that Sweet’s syndrome can develop secondary to autoimmune conditions, and if this is the case, when the autoimmune condition flares-up the Sweet’s syndrome often does too.

Why should some of the herbs and supplements listed above be avoided if you are taking immunosuppressants?

Immunosuppressants are medications that suppress or ‘dampen down’ the immune system to bring an overactive immune system under control and reduce levels of inflammation in the body. These medications include prednisone, azathioprine, cyclosporine, mycophenolate mofetil, and tacrolimus, but there are many others. Herbs and supplements that ‘boost’ the immune system prevent immunosuppressants from doing their job properly. This is because they increase immune system activity while the immunosuppressant is trying to suppress it.


Remember, just because something is ‘natural’ doesn’t mean that it’s safe or doesn’t have side-effects. There are plenty of herbs, plants and extracts that have side-effects, can cause allergic reaction, interact with medications, be poisonous, or even prove fatal.

Keep safe!


Further information.

A warning about Polly Heil-Mealey! Sweet’s syndrome cannot be cured with herbs or homeopathic remedies.

Baking soda is not a treatment for Sweet’s syndrome or myelodysplastic syndromes.

What is the treatment for Sweet’s syndrome?

© 2012-2017 Sweet’s Syndrome UK