Celebrate Sweet’s Syndrome UK Day on June 2nd!

June 2nd 2017 is Sweet’s Syndrome UK Day & the 5th anniversary of Sweet’s Syndrome UK.

What can you do to help spread awareness?

  1. Like our Facebook page, and share one of our posts.
  2. Join our HealthUnlocked forum. This is a FREE online community that’s available in English, Spanish, and Portuguese.
  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. Share 5 key facts or 10 myths about Sweet’s syndrome.
  8. 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.
  9. Make a donation to Skin Care Cymru. This a Welsh charity that gives a voice to those with skin conditions in Wales.

BEE sweet and buzz for Sweet’s – help us spread the word!

Yes, this is my own work!

Image: ‘I’m a resurcher’, Contrived Platitudes.

There has been ongoing confusion over whether or not the information on the Sweet’s Syndrome UK blog is my own work. The answer is ‘Yes, this is my own work!’

Most of the Sweet’s syndrome information I provide has not simply been copied and pasted, reblogged or reshared, as certain individuals have insinuated or claimed. Occasionally, I do share information from other blogs or websites, but I make it clear when the work is not my own.

If you would like to access free full-text medical case-studies and articles about Sweet’s syndrome, most of which have been referenced in my blog posts, click here.

Thank you,

Michelle Holder.

© 2012-2017 Sweet’s Syndrome UK

Can vaccination trigger Sweet’s syndrome?

Sweet’s syndrome triggered by vaccination.

There is some medical evidence to show that certain vaccinations can potentially trigger Sweet’s syndrome, but this is incredibly rare, and it is important to take the following information into consideration:

  • Sweet’s syndrome is rare, probably affecting no more than 3 people per 10,000 (Zamanian and Ameri, 2007).
  • It mainly affects adults not children, and only 5% to 8% of cases have been in children (Sharma et al, 2015).
  • In some people, something is needed to trigger the onset of Sweet’s syndrome, but in up to 71% of people with Sweet’s syndrome there is no known trigger (Tam and Ingraffea, 2015).
  • Infection is a more common trigger for Sweet’s syndrome than vaccination, and as a result, Sweet’s syndrome tends to be more common in countries where people are more likely to develop infections (Ginarte and Toribio, 2011: 120). It is most commonly triggered by upper respiratory tract infection, but can be triggered by other infections too.
  • There have only been 10 cases of Sweet’s syndrome triggered by vaccination reported in medical literature in the past 42 years – globally! In some of these cases, a definite connection between the vaccination and Sweet’s syndrome was not established.
  • Sweet’s syndrome has only been associated with certain vaccinations and not others (see below).

Which vaccinations have been associated with Sweet’s syndrome?

Sweet’s syndrome has been associated with the following vaccinations:

  • Bacillus Calmette-Guerin (BCG or tuberculosis) (Carpentier et al, 2002: 82; Cruz-Velasquez et al, 2016). Two cases. One in 1986, occurring 15 days after vaccination, but the authors of the medical article that reported this did not control the tuberculin (Mantoux) test. One reported in 2002, occurring 10 days after vaccination.
  • Streptococcus pneumonia (Carpentier et al, 2002: 82; Cruz-Velasquez et al, 2016; Pedrosa et al, 2013). Two cases. One reported in 1990, occurring 4 days after vaccination following a splenectomy. One reported in 2013, and the first with the 13-valent conjugate vaccine.
  • Smallpox (Carpentier et al, 2002: 82; Cruz-Velasquez et al, 2016). Two cases reported in 1975, occurring 3 days after vaccination.
  • Influenza (Cruz-Velasquez et al, 2016; Hali et al, 2010, Jovanovic et al, 2005; Tan el al. 2006; Wolf et al. 2009). Four cases. One reported in 2005; in 2006, one case of bullous Sweet’s syndrome following vaccination in a HIV-infected patient; in 2009, neutrophilic dermatosis of the hands occurring 12 hours after vaccination; in 2010, one case of Sweet’s syndrome after H1N1 influenza (swine fluvaccination.

Do vaccinations trigger Sweet’s syndrome because they are toxic or contain dangerous chemicals?

No. Vaccinations do not trigger Sweet’s syndrome because they are toxic or contain dangerous chemicals, and anyone who tells you this is either lying to you, trying to scare you, or has no understanding of vaccinations and Sweet’s syndrome.

Why do vaccinations trigger Sweet’s syndrome?

Vaccination can trigger Sweet’s syndrome because of hypersensitivity reaction. This is not the same as allergic reaction.

What is hypersensitivity reaction?

Sweet’s syndrome is caused by errors in the innate immune system  the body’s most primitive, ‘hard-wired’ immune system, and a part of the immune system that doesn’t produce antibodies. Because of these errors, in some people with Sweet’s syndrome, their innate immune system responds to antigens – mainly proteins or sugars on the surface of a cell, or a non-living substance that a part of your immune system called the adaptive immune system sees as a foreign invader and produces antibodies in response to – in a way that it shouldn’t, i.e. is hypersensitive and goes into overdrive, overreacting to the presence of infectious, inflammatory, drug, or tumour cell antigens (Bhat et al, 2015: 257; Kasirye et al, 2011: 135). This means that the presence of antigens associated with certain health conditions, medications and vaccinations can potentially trigger Sweet’s syndrome by causing the innate immune system to unnecessarily activate or activate too many inflammatory cells, mainly white blood cells called neutrophils (Gosheger et al, 2002: 70). This then leads to the symptoms of Sweet’s syndrome.

If I have Sweet’s syndrome should I avoid having vaccinations?

No. Most people with Sweet’s syndrome don’t need to avoid having their vaccinations unless they can’t be vaccinated for other medical reasons, e.g. they are taking certain types of medication or have other health conditions. However, if the Sweet’s syndrome was initially triggered by a particular vaccination, e.g. influenza, then it would not be advisable to have the same kind of vaccination again.

How do I know if vaccination has triggered my Sweet’s syndrome?

Remember, Sweet’s syndrome triggered by vaccination is incredibly rare, but if it does happen, then symptoms usually develop within hours, days or less commonly, a few weeks after vaccination. Skin lesions sometimes appear at the vaccination site, but this can also happen because of the skin damage caused by having the vaccination (puncture wound from the needle) rather than the vaccine itself. This response is known as pathergy.

Are there other triggers for Sweet’s syndrome?

Yes, and aside from the triggers that have already been mentioned (infection, skin damage, and vaccination), other triggers for Sweet’s syndrome include:

  • Cancer and blood disorders in 15-20% of cases, e.g. solid tumours, and myelodysplastic syndrome which may progress to acute myeloid leukaemia (Chen et al, 2016).
  • Inflammatory bowel disease, e.g. Crohn’s disease and ulcerative colitis (Cohen, 2007).
  • Autoimmune conditions, e.g. rheumatoid arthritis and systemic lupus erythematosus.
  • Medications in up to 5% of cases.
  • Pregnancy in up to 2% of cases. This is probably associated with hormonal changes, but further research is required.
  • Overexposure to sunlight or ultraviolet (UV) light. This can sometimes trigger Sweet’s syndrome, but we are not entirely sure why this happens.

References.

Bhat, Y., Hassan, I., Sajad, P., Akhtar, S. and Sheikh, S. (2015) Sweet’s Syndrome: An Evidence-Based Report. Journal of the College of Physicians and Surgeons – Pakistan, Jul;25(7):525-7 (PubMed).

Carpentier, O., Piette, F. and Delaporte, E. (2002) Sweet’s syndrome after BCG vaccination. Acta Dermato-Venereologica;82(3):221 (PubMed).

Chen, S., Kuo, Y., Liu, Y., Chen, B., Lu, Y. and Miser, J. (2016) Acute Myeloid Leukemia Presenting with Sweet Syndrome: A Case Report and Review of the Literature. Pediatrics and Neonatology (online).

Cohen, P. (2007) Sweet’s syndrome – a comprehensive review of an acute febrile neutrophilic dermatosis (online).

Cruz-Velásquez, G., Pac Sha, J., Simal Gil, E. and Gazulla, J. (2016). Aseptic meningitis and anti-β2-glycoprotein 1 antibodies in Sweet syndrome. Neurologia (Barcelona, Spain), Jul 21 (0nline). Article in Spanish, use translate

Ginarte, M. and Toribio, J. (2011) Sweet Syndrome. In Dr. Fang-Ping (Ed.) Autoimmune Disorders – Current Concepts and Advances from Bedside to Mechanistic Insights. Croatia or China: Intech, pp. 119-132 (PDF). 

Gosheger, G., Hillman, A., Ozaki, T., Buerger, H. and Winklemann, W. (2002) Sweet’s Syndrome Associated With Pigmented Villonodular Synovitis. Acta Orthopædica Belgica, Feb;68(1):68-71 (PubMed).

Hali, F., Sbai, M., Benchikhi, H., Ouakadi, A. and Zamiati, S. (2010) [Sweet’s syndrome after H1N1 influenza vaccination]. Annales de Dermatologie et de Venereologie,  Nov;137(11):740-1 (PubMed).

Jovanovic, M., Poljacki, M., Vujanovic, L. and Duran, V. (2005) Acute febrile neutrophilic dermatosis (Sweet’s syndrome) after influenza vaccination. Journal of the American Academy of Dermatology, Feb;52(2):367-9 (PubMed).

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).

Pedrosa, A., Morais, P., Nogueira, A., Pardal, J. and Azevedo, F. (2013) Sweet’s syndrome triggered by pneumococcal vaccination. Cutaneous and Ocular Toxicology, Sep;32(3):260-1 (PubMed).

Sharma, A., Rattan, R., Shankar, V., Tegta, G. and Verma, G. (2015) Sweet’s syndrome in a 1-year-old child. Indian Journal of  Paediatric Dermatology;16:29-31 (online).

Tam, C. and Ingraffea, A. (2015) Case Letter: Sweet Syndrome Presenting With an Unusual Morphology. Cutis, Aug;96(2):E9-E10 (online).

Tan, A., Tan. H., and Lim, P. (2006) Bullous Sweet’s syndrome following influenza vaccination in a HIV-infected patient. International Journal of Dermatology, Oct;45(10):1254-5 (PubMed). 

Zamanian, A. and Ameri, A. (2007) Acute febrile neutrophilic dermatosis (Sweet’s syndrome): a study of 15 cases in Iran. International Journal of Dermatology, Jun;46(6):571-4 (PubMed).

Wolf, R., Barzilai, A. and Davidovici, B. (2009) Neutrophilic dermatosis of the hands after influenza vaccination. International Journal of Dermatology, Jan;48(1):66-8 (PubMed).

© 2012-2017 Sweet’s Syndrome UK

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.

© 2012-2017 Sweet’s Syndrome UK

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 avoided completely in patients with Sweet’s syndrome

Reposted on 13/10/16, updated on 25/04/17.

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

No. There is absolutely no medical 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 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, we are sure 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 avoided completely in patients with Sweet’s syndrome.

This is list of alternative and nutritional therapies that don’t work, should be used with caution, or avoided completely. 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 it 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 lesions (pathergy). Read more here.
  • Baking soda (sodium bicarbonate): this 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 does often cause 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 (NHS Choices, 2014; NHS Choices, 2015b). This is because joint manipulation could make symptoms worse. Physiotherapy is completely safe.
  • EAV or bioenergetics: these 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 they work, and should be used with caution when applied to the skin. This is because the oils might cause irritation, potentially triggering the development of new skin lesions. Read more here.
  • Homeopathy: this is being advocated as a treatment for Sweet’s syndrome by some alternative therapists. This is a pseudoscientific claim, and there is no research to support this claim. In fact, in 2010, the House of Commons Science and Technology on Homeopathy stated 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.
  • Red root (blood root, bloodwort): this is being advocated as a treatment for Sweet’s syndrome by some alternative therapists. There is no evidence to support this claim, and red root should be used with caution, as it may not always be safe to use either orally or topically. When applied to the skin, it could potentially cause the development of new lesions, and should be completely avoided by those with certain health conditions. 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.

References.

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.

Other 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.

What is the treatment for Sweet’s syndrome?

Additional note.

Sweet’s Syndrome UK does not promote the use of alternative or nutritional therapies. This is because there is no medical 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.

Thank you.

Michelle Holder.

© 2012-2017 Sweet’s Syndrome UK