No Sweet’s syndrome charity or non-profit organization exists in the UK or any other country!

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Is Sweet’s Syndrome UK a charity or non-profit organization?

No. Sweet’s Syndrome UK is not a charity or non-profit organization. It is a patient advocacy group (PAG) and does not request or accept donations, and does not sell merchandise.

Is there a Sweet’s syndrome charity or non-profit organization in the UK or any other country?

No. For some reason, a growing number of people are of the belief that a Sweet’s syndrome charity or non-profit organization exists. There is NO and has NEVER been a Sweet’s syndrome charity or non-profit organization in the UK or any other country.

What should I do if someone tells me that they need donations or are selling merchandise for a Sweet’s syndrome charity or non-profit organization?

If someone tells you that they need donations or are selling merchandise for a Sweet’s syndrome charity or non-profit organization, then they are lying.

Please DO NOT give them:

  • Any donations, e.g. money or goods.
  • Your bank details.
  • Money to fund or invest in their Sweet’s syndrome organization or an associated project.

Please DO NOT buy:

  • Merchandise, e.g. t-shirts, badges or wrist-bands.

Please DO NOT believe them:

  • If they insist that a Sweet’s syndrome charity or non-profit organization exists, even if you know them well or they seem very convincing.
  • If they tell you that the person or group that has informed you that a charity or non-profit organization does not exist is either mistaken or lying.

Please BE CAREFUL:

  • If they use some other cause or belief to try and convince you that they are genuine and caring, and just trying to help those with Sweet’s syndrome. For example, ‘I just love helping people with Sweet’s syndrome, and often do voluntary work at my local care home too’ or ‘I believe that helping those with Sweet’s syndrome is my Christian duty’.
  • If they play on your sympathy. For example, ‘My little girl has Sweet’s syndrome and she’s suffering so much. Please give me some money so that I can continue to fund research into this terrible disease’.
  • If they tell you that they simply want to help because they have Sweet’s syndrome or someone they know has Sweet’s syndrome.

If they persist in asking you for money, keep putting pressure on you to buy merchandise, or still insist that they are telling the truth and seem very convincing, please DO:

  • Ask for proof to back up their claims that a Sweet’s syndrome charity or non-profit organization exists. Also, thoroughly check out what they have told or shown you, even if at first glance the ‘proof’ seems genuine and legitimate.
  • Check that the charity or non-profit organization that they are running, working, selling or collecting for is officially registered, if it’s supposed to be.

If you have already given a donation or bought anything from them, please DO NOT accept any excuses for their dishonest and criminal behaviour. For example:

  • ‘You chose to give me money, I didn’t force you to give me money. That means it isn’t a con’.
  • ‘I never said outright that the money was going to a non-profit organization. It’s not my fault that you got confused’.
  • ‘If you buy a hoodie and don’t bother to check first whether or not the money is going to a charity, then that’s your fault not mine! Everyone knows the ‘buyer beware’ rule. You shouldn’t have assumed the money was going somewhere it wasn’t’.
  • ‘What’s the problem? It’s entrepreneurial! Everyone has the right to earn a bit of cash’.
  • ‘I’m sorry, but I was desperate. I need to pay my rent and utilities’.
  • ‘Why are you trying to hurt me and make out I’m a bad person when I simply want to help people with Sweet’s syndrome?’
  • ‘So what if the money isn’t going to a charity? I never told you that it was, and it’s not my fault that you got that idea! And anyway, selling these t-shirts is helping to spread awareness of Sweet’s syndrome. That shows I’m a good person who just wants to help others’.

Finally, if any of the above should happen, PLEASE OBTAIN as much information as you can and REPORT the individual(s) or group involved to the relevant authorities, or inform Sweet’s Syndrome UK.

Please DO NOT:

  • ‘Bury-your-head-in-the-sand’, ignore or ‘turn-a-blind-eye’ to what is happening.
  • Make excuses for these individuals or groups.
  • Assist these individuals or groups, or cover up what they are doing.
  • Put pressure on others to forgive and excuse the behaviour of these individuals or groups. This will only encourage criminal behaviour, and make it easier for them to get away with it and do it again.
  • Try to shift responsibility for the criminal behaviour back to the victim, e.g. ‘It’s your fault. If you’d been more careful you wouldn’t have been conned’.

Remember, even if the motives of these individuals or groups seem genuine, they are intentionally trying to defraud and take advantage of other people. If you enable them, you might also find yourself in trouble, and potentially facing legal prosecution. This is CHARITY FRAUD!

What can I do if I want to donate to a charity or non-profit organization that helps those with Sweet’s syndrome?

If you wish to make a donation, the US-based Autoinflammatory Alliance is a non-profit organization that helps adults and children in many different countries with autoinflammatory conditions such as Sweet’s syndrome.

Additional note: Sweet’s syndrome merchandise is being sold by Rhonda Wood Negard, Fat Dog Creatives (graphic design & photography website), United States.

Sweet’s syndrome and rare disease merchandise is being sold via the online retail company, Zazzle, by Rhonda Wood Negard, Fat Dog Creatives (graphic design & photography website), United States. This merchandise is not being sold by Sweet’s Syndrome UK, and is not associated with this group. Neither is the merchandise associated with any other Sweet’s syndrome group or organization, or rare disease group or organization.

The sale of this merchandise is FOR-PROFIT, and Rhonda did not previously, but does now state that it is simply ‘Artwork for (the) rare skin disease, Sweet’s syndrome’ and that it was a project created ‘to give patients another way to promote awareness’. Please be aware of the fact that the money from the sale of the merchandise goes to Rhonda Wood Negard and Zazzle. It does not go to a charity or non-profit organization and DOES NOT directly benefit Sweet’s syndrome patients in any way, e.g. it is not used to run a charity, fund research, provide information or services.

I know that some people prefer to buy health awareness merchandise where the proceeds are going to a charity or non-profit organization. Therefore, you may wish to take into consideration that this merchandise is being sold for-profit, and not to directly help those with Sweet’s syndrome. However, I also know that some people are happy to buy for-profit health awareness merchandise, simply because they hope that it will spread awareness of a particular condition – Michelle Holder, Sweet’s Syndrome UK.

Keep safe & be fraud aware!

Further information.

Action Fraud (2010) Charity Donation Fraud. National Fraud & Cyber Crime Reporting Centre, UK (online).  Accessed 28/06/16.

© 2012-2016 Sweet’s Syndrome UK

Can Sweet’s syndrome affect the eyes?

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What are the symptoms of Sweet’s syndrome?

The main symptom of Sweet’s syndrome is skin lesions (Sweet’s lesions) that often appear as a sore or painful red or purple rash, but patients commonly develop other symptoms too. Read more here.

Can Sweet’s syndrome affect the eyes?

Yes. Sweet’s syndrome can affect the eyes in up to 72% of patients (Bilgin et al, 2015:54). Usually, only one eye will be affected, but it is possible for both eyes to be affected at the same time (Zhuang and Li, 2011).

What are the symptoms?

Initial symptoms often include:

  • Sore eyes.
  • Eye pain.
  • Blurry vision.

Other symptoms include:

  • Eye redness.
  • Dry eyes. Some eye problems caused by Sweet’s syndrome may also increase the risk of developing ‘dry eye syndrome’. However, this can happen for lots of different reasons that may not be related to Sweet’s syndrome (see ‘Further information’).
  • Eye watering.
  • Itching.
  • ‘Sticky’ eyes.

On rare occasions, eye symptoms may worsen, causing severe inflammation, tissue damage, ulceration, and vision loss.

Can Sweet’s syndrome affect the eyes even if skin lesions are not present?

Yes. It is possible to have Sweet’s syndrome-related eye problems even when skin lesions are not present, but this is not common (Bilgin et al, 2015:54; Koay et al, 2013).

What are the commonest eye problems?

Conjunctivitis, episcleritis, limbal nodules and iridocyclitis are the some of the commonest eye problems (Baartman et al, 2014:193).

What other eye problems can Sweet’s syndrome cause?

Other eye problems include:

  • Blepharitis (Cohen, 2007).
  • Choroiditis (Baartman et al, 2014:193).
  • Conjunctival erythematous lesions with tissue biopsy showing neutrophilic inflammation (Cohen, 2007).
  • Conjunctival haemorrhage (Ibid).
  • Conjunctival nodules (Zhuang and Li, 2011).
  • Dacryoadenitis (Cohen, 2007).
  • Glaucoma (Bilgin et al, 2015:54; Cohen, 2007). This is rare in Sweet’s syndrome, and can also be caused by steroid medication.
  • Iritis (Cohen, 2007).
  • Ocular congestion (Ibid).
  • Optic nerve involvement (Bilgin et al, 2015:54; Koay et al, 2013; Lobo et al, 2011).
  • Periocular cellulitis (cellulitis around the eyes), swelling around the eyes, lesions on the eyelid or around the eyes, or eye and eyelid inflammation (Bilgin et al, 2015:54; Cohen, 2007; Khatri and Taha, 2007; Morgan and Callen, 2001).
  • Peripheral ulcerative keratitis (Bilgin et al, 2015; Carbonell et al, 2011; Cohen, 2007). This is rare in Sweet’s syndrome, but can cause severe inflammation and tissue damage, potentially leading to visual impairment and blindness.
  • Retinal vasculitis (Baartman et al, 2014; Cohen, 2007). This is rare in Sweet’s syndrome, but more common in the similar condition Behcet’s syndrome. It can potentially lead to retinal ischaemia, visual impairment and blindness.
  • Scleritis (Bilgin et al, 2015; Carbonell et al, 2011; Cohen, 2007).
  • Uveitis and panuveitis (Cohen, 2007; Lobo et al, 2011; Matsumiya et al, 2012; Stevenson and Hannay, 2016). This is rare in Sweet’s syndrome, but uveitis is the most common eye condition in those with Behcet’s syndrome.

How are eye problems caused by Sweet’s syndrome diagnosed?

  • A doctor will ask you about your symptoms.
  • Your eyes will be examined.
  • Sometimes other investigations are needed, e.g. CT scan (computerized tomography), or an eye biopsy.

Read more here.

How are eye problems treated?

Treatment includes systemic steroids and/or eye drops (usually steroid eye drops) depending on which part of the eye is affected or the severity of the eye condition. However, other medications may be given. Read more here.

If the eyes are dry, lubricant eye drops, otherwise known as ‘artificial tears’, can be beneficial.

References.

Baartman, B., Kosari, P., Warren, C., Ali, S., Jorizzo, J., Sato, M. and Kurup, S. (2014) Sight-Threatening Ocular Manifestations of Acute Febrile Neutrophilic Dermatosis (Sweet’s Syndrome). Dermatology, Mar;228:193–197 (Karger).   

Bilgin, A., Tavas P., Turkoglu, E., Ilhan, H., Toru, S. and Apaydin, K. (2015) An uncommon ocular manifestation of Sweet syndrome: peripheral ulcerative keratitis and nodular scleritis. Arquivos Brasileiros de Oftalmologia, Jan-Feb;78(1):53-5 (PDF).

Carbonell, D., Agdeppa, M. and Mejia, M. (2011) Peripheral Ulcerative Keratitis in Sweet’s Syndrome. Phillipine Journal of Ophthalmology, Jan-Jun; 36(1):46-49 (PDF).

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). 

Khatri, M. and Taha. M. (2007) Sweet’s syndrome associated with myelodysplastic syndrome presenting as periorbital cellulitis. International Journal of Dermatology, May;46(5):496-9 (PubMed).

Koay, C., Chew, F., Chong, K. and Subrayan (2013) Compressive Optic Neuropathy. Indian Journal of Ophthalmology, Mar;61(3):140-141 (online).

Lobo, A., Stacy, R., Cestari, D., Stone, J., Jakobiec, F. and Sobrin, L. (2011) Optic nerve involvement with panuveitis in Sweet syndrome. Ocular Immunology and Inflammation, Jun;19(3):167-70 (PubMed).

Matsumiya, W., Kusuhara, S., Yamada, Y., Azumi, A. and Negi, A. (2012) Sweet’s syndrome with panuveitis resembling Behçet’s disease. Japanese Journal of Ophthalmology, May;56(3):268-72 (PubMed).

Morgan, K. and Callen, J. (2001) Sweet’s syndrome in acute myelogenous leukemia presenting as periorbital cellulitis with an infiltrate of leukemic cells. Journal of the American Academy of Dermatology, Oct;45(4):590-5 (PubMed).

Stevenson, R. and Hannay, J. (2016). Sweet’s syndrome: a rare extraintestinal manifestation of ulcerative colitis. BMJ Case Reports, May 11 (online).

Zhuang, Y. and Li, Y. (2011) Bilateral Conjunctival Nodules in Sweet’s Syndrome. Journal of Clinical Experimental Ophthalmology; 2:146 (online).

Further information.

DermNet NZ (2016) Behcet Disease (online).

Mayo Clinic (2016) Cataracts: Prevention (online).

Neuro-Sweet’s disease: a neurological variant. This Sweet’s syndrome variant can sometimes affect vision.

NHS Choices (2016) Dry Eye Syndrome (online).

© 2012-2016 Sweet’s Syndrome UK

Sweet’s Syndrome in Children

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Sweet’s syndrome in children is very rare, so the information available is limited.

Last updated June 2016.

What is Sweet’s syndrome?

Sweet’s syndrome (SS) is a rare autoinflammatory (not autoimmune) condition and form of neutrophilic dermatosis that mainly affects adults, particularly women. The main symptoms include fever and painful skin lesions that most often appear on the face, neck and upper extremities, but can appear on any part of the body. On rare occasions, there are no skin lesions. Other common symptoms include fatigue (a medical term that includes a number of different symptoms, and is not the same as simply feeling tired), muscle pain, joint pain (arthralgia) or joint pain and swelling (arthritis), headaches, eye problems, and sometimes mouth ulcers. On rare occasions, the lesions can develop in internal joints and organs causing more serious symptoms. Very rarely, SS may be life-threatening. The cause of SS is poorly understood, but it is associated with infections, autoimmune conditions, inflammatory bowel disease, cancers and blood disorders (malignancy-associated or paraneoplastic), medications (drug-induced), pregnancy, skin damage, overexposure to sunlight or ultraviolet (UV) light, and POSSIBLY vaccination. In regards to the latter, SS caused by vaccination is so rare that a definite connection has not been established. Also, as infection is a much more common trigger for SS than vaccination, you are more likely to develop SS as a result of not having your vaccinations than having them.

Can Sweet’s syndrome affect children?

Yes. SS most commonly affects adults, but on very rare occasions – only in 5% to 8% of cases – can affect babies, children and teenagers (Sharma et al, 2015).

By June 2016, just over 80 cases of SS in children had been documented in medical literature.

A list of documented cases of Sweet’s syndrome in children.

1. By 2012, only 68 cases of SS in children had been documented in medical literature, and 58% of these cases were associated with underlying chronic disease (Gray et al, 2012). Out of the 68 cases, SS occurred in association with:

  • Aortitis (Gray et al, 2012).
  • Multifocal osteomyelitis (Ibid).
  • Vasculitis.
  • Acute myeloid leukaemia.
  • Acute lymphoblastic leukaemia.
  • Juvenile chronic myelomonocytic (myelogenous) leukaemia.
  • Fanconi anaemia.
  • Aplastic anaemia.
  • Viral infection.
  • Medication (drug-induced).
  • Neonatal lupus erythematosus.
  • Primary immunodeficiency.
  • Immunodeficiency secondary to HIV infection.
  • 2 brothers with Majeed syndrome (congenital dyserythropoietic anaemia, chronic recurrent multifocal osteomyelitis and neutrophilic dermatosis) – a genetic autoinflammatory condition (El-Shanti and Ferguson, 2014; Majeed et al, 1989).
  • 3 children had probable CANDLE syndrome (chronic atypical neutrophilic dermatosis with lipodystrophy and elevated temperature) – a genetic autoinflammatory condition (Gray et al, 2012).

2. In 2013, the first known case of hyper IgD (hyperimmunoglobulinemia) syndrome or HIDS presenting as SS was in a 6-week-old girl was documented in literature (Payne et al, 2013). HIDS, a milder form of Mevalonate Kinase Deficiency (MKD), is a genetic autoinflammatory condition.

3. In 2014, three cases of SS were documented:

  • A case of drug-induced SS in a 20-month-old boy with congenital neutropenia who was being treated with granulocyte colony-stimulating factor (G-CSF) (Akilov et al, 2014).
  • In a 5-year-old child with erythema elevatum diutinum (Wang et al, 2014).
  • In a 14-year-old boy with Crohn’s disease (Fernandez-Torres et al, 2014). This is the first reported case of subcutaneous histiocytoid Sweet’s syndrome in a paediatric patient.

4. In 2015, five cases of SS were documented:

  • In a 1-year-old boy with a 15 day history of fever, and a sore throat (Sharma et al, 2015).
  • In a child with systemic lupus erythematosus (Quinn et al, 2015).
  • A case of histiocytoid SS (Kim et al, 2015).
  • In a girl aged 1 year and 11 months who had a urine infection (Santos et al, 2015).
  • In a 1.5 month girl with a perineal infection associated with rectovestibular fistula (abnormal connection between the rectum and the vulval vestibule) (Shinozuka et al, 2015). In this case, the SS was initially mistaken for chickenpox.

A Sweet’s-like syndrome was also reported in a 5-week-old girl with HIDS (Pace et al, 2015).

5. In 2016, three cases of SS were documented:

  • In a 6-year-old child whose SS caused an aseptic splenic abscess (Johnson and Sadik, 2016) . The child was also demonstrating pathergy and an ulcerated skin lesion developed at the site of a splenic drainage tube after it had been removed.
  • In a 2-month-old girl demonstrating neurological problems – impaired awareness and eye fixation (Aoki et al, 2016). She was also diagnosed with encephalitis.
  • In a 15-year-old girl with acute myeloid leukaemia who had initially been misdiagnosed with severe cellulitis (Chen et al, 2016).

Key points about Sweet’s syndrome in children.

  • SS in children and adolescents is very rare – only 5% to 8% of cases. The average age of a child with SS is 5 years, but the youngest to be affected was 10 days old. In children under the age of 3 years it is more common in boys, but over the age of 3 years affects girls and boys equally (Sharma et al, 2015).
  • In children, signs and symptoms of a respiratory infection normally appear 1 to 3 weeks before skin lesions develop  (Santos et al, 2015).
  • SS that occurs in children under the age of 6 weeks normally suggests serious underlying illness (Gray et al, 2012).
  • SS in children over the age of 3 to 6 months tends to be less severe and outcomes are better.
  • Most cases of childhood SS are NOT associated with underlying malignancy, i.e. cancer. When cancer does occur it tends to be a type of blood cancer, i.e. leukaemia, and in children over the age of 3 years (Sharma et al, 2015).
  • Unlike most autoinflammatory conditions, SS is not a genetic condition, and a genetic cause for SS, i.e. SS as a symptom of a genetic condition, is extremely rare. By 2013, only 6 cases of SS with a possible genetic cause had been reported in children under the age of 6 months (Gray et al, 2012; Payne et al, 2013). As already mentioned, in 2015, a Sweet’s-like syndrome was also reported in a 5-week-old girl with HIDS (Pace et al, 2015).

Additional note: The Gray et al article (see ‘References’) discusses genetic causes for SS in children under 6 months of age. In 1989, two brothers developed SS secondary to Majeed syndrome, but I am unaware of their ages (Majeed et al, 1989). However, symptoms of Majeed syndrome appear no later than 2 years of age – Michelle Holder, Sweet’s syndrome UK.

  • SS is not hereditary, and is extremely rare in families. In 2003, two brothers were reported to have developed Sweet’s syndrome at ages 10 days and 15 days (Parsapour et al, 2003). Hereditary SS was considered but has not been proven.
  • In children, SS rarely affects areas other than the skin, e.g. internal joints and organs (Gray et al, 2012).
  • Children with SS often demonstrate pathergy.
  • Children are more likely to develop atypical SS skin lesions than adults. Atypical lesions are lesions that occur in a less common form.
  • Children are more likely to experience permanent skin changes than adults (30% of cases). Skin changes include scarring, colour changes (darkening or redness) to the areas of skin that have been affected by skin lesions, and occasionally, cutis laxa (loosely hanging skin that lacks any elasticity).

Diagnosis in children and teenagers, and additional diagnostic recommendations in early infancy.

1. Diagnosis.

How is Sweet’s syndrome diagnosed? Find out here.

2. Additional diagnostic recommendations in early infancy.

Additional diagnostic recommendations in early infancy include:

  • Haematological investigations (Gray et al , 2012).
  • A broad immunodeficiency screen, including neutrophil function and antibody testing.
  • Performing an extensive viral screen which could possibly include HIV testing if there is multisystem involvement.
  • As SS has been triggered by perineal infection associated with rectovestibular fistula, it has been recommended that the perineal region should be screened for changes following SS diagnosis in infants (Shinozuka et al, 2015).

Underlying conditions to be considered include:

  • Malignancy – acute myeloid leukaemia, acute lymphoblastic leukaemia, and juvenile chronic myelomonocytic (myelogenous) leukaemia have been reported (see ‘A list of documented cases of Sweet’s syndrome in children’).
  • Neonatal lupus erythematosus. On average, neonatal lupus erythematosus appears at 6 weeks of age, but should not be discounted outside of the immediate neonatal period (Gray et al, 2012).
  • CANDLE syndrome, particularly if there is multisystem involvement (Gray et al, 2012).
  • HIDS.
  • Majeed syndrome.

How is Sweet’s syndrome treated in children and teenagers?

Corticosteroid (steroid) therapy is usually the most effective form of treatment for SS in children and teenagers, but sometimes it is necessary to try other medications (Boatman et al, 1994; Gray et al, 2012). These may be given alongside steroids or by themselves.

Other medications include:

  • Mycophenolate mofetil (Gray et al, 2012).
  • Immunoglobulin and dapsone (Haliasos et al, 2005).
  • Anakinra has been used to successfully treat HIDS presenting as SS (Payne et al, 2013: 118, 122).
  • Ciclosporin and tacrolimus ointment (Johnson and Sadik, 2016).
  • Metronidazole has been recommended to treat underlying Crohn’s disease (Fernandez-Torres et al, 2014).

Support for parents of children with Sweet’s syndrome or other autoinflammatory conditions.

Autoinflammatory Alliance. This is a US-based non-profit organization (NPO) that provides advice and support to those with a wide range of autoinflammatory conditions, both inside and outside of the US. As most autoinflammatory conditions develop during childhood, this NPO is particularly useful for parents of children with these conditions.


Further information.

Assari, R., Ziaee, V., Parvaneh, N. and Moradinejad, M. (2014) Periodic Fever and Neutrophilic Dermatosis: Is It Sweet’s Syndrome? Case Reports in Immunlogy, Dec (online). This is a medical case-study and not patient information.

Autoinflammatory Alliance (2015) Autoinflammatory Disease Comparison Chart (online).

Autoinflammatory Alliance (2012) Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature (CANDLE) Syndrome (online).

DermNet NZ (2006) Cutis Laxa (online).

Tellez, J. (2015) He Has What? In SAID Support Blog. Autoflammatory Alliance; Jan 8th (online).


References.

Akilov, O., Desai, N., Jaffe, R. and Gehris, R. (2014) Bullous Sweet’s Syndrome After Granulocyte Colony-Stimulating Factor Therapy in a Child with Congenital Neutropenia. Pediatric Dermatology, Mar;31(2):e61-2 (PubMed).

Aoki, T., Yamashita, Y., Minamitani. K., Ota, S., and Hayakawa. K. (2016)  Erythematous Plaques in a Child with Sweet Syndrome. The Journal of Pediatrics, Jun 15 (PubMed).

Boatman, B., Taylor, R., Klein, L. and Cohen, B. (1994) Sweet’s Syndrome in Children. Southern Medical Journal, Feb;87(2):193-6 (online).

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, Aug 5th (online).

El-Shanti, H. and Ferguson, P. (2014) Majeed Syndrome. Gene Reviews [Internet].

Fernandez-Torres, R., Castro, S., Moreno, A., Alvarez, R. and Fonseca, E. (2014) Subcutaneous histiocytoid Sweet syndrome associated with Crohn’s disease in an adolescent. Case Reports in Dermatological Medicine, Mar 26th (online).

Gray, P., Bock, V., Ziegler, D. and Wargon, O. (2012) Neonatal Sweet syndrome: a potential marker of serious systemic illness. Pediatrics, May;129(5):1353-9 (online).

Haliasos, E., Soder, B., Rubenstein, D., Henderson, W. and Morrell, D. (2005) Pediatric Sweet syndrome and immunodeficiency successfully treated with intravenous immunoglobulin. Pediatric Dermatology, Nov-Dec;22(6):530-5 (online).

Johnson, K. and Sadik, K. (2016) Aseptic Splenic Abscess and Sweet Syndrome. The Journal of the American Osteopathic Association, May; 116:330 (online).

Kim, J., Seo, J. and Oh, S. (2015) Unusual presentation of histiocytoid Sweet’s syndrome in a pediatric patient. International Journal of Dermatology, Sept 4 (PubMed).

Majeed, H., Kalaawi, M., Mohanty, D., Teebi, A., Tunjekar, M., al-Gharbawy, F.,  Majeed, S. and al-Gazzar, A. (1989) Congenital dyserythropoietic anemia and chronic recurrent multifocal osteomyelitis in three related childrenand the association with Sweet syndrome in two siblings. The Journal of Pediatrics, Nov;115(5 Pt 1):730-4 (online).

Pace, S., Bingham, J. and Royer, M. (2015) Histopathologic features in a case of hyperimmunoglobulinemia D syndrome. Indian Dermatology Online Journal, Dec;6 (Suppl 1):S33-6.

Parsapour, K.,  Reep, M., Gohar, K., Shah, V., Church, A. and Shwayder, T. (2003) Familial Sweet’s syndrome in 2 brothers, both seen in the first 2 weeks of life. Journal of the American Academy of Dermatology; 49:132-138 (online). 

Payne, K., Keiser, P., Kaplan, M. and Jones, O. (2013) Hyper IgD Syndrome Presenting as Sweet’s Syndrome in a 6 Week Old Infant. Annals of Paediatric Rheumatology, Jun;2:118-123   (online).

Quinn, N., MacMahon, J., Irvine, A. and Lowry, C. (2015) Sweet syndrome revealing systemic lupus erythematosus. Irish Medical Journal, Feb;108(2):59-60 (PubMed).

Santos, T., Sales, B., Sigres, M., Rosman, F. and Cerqueira, A. (2015) Sweet Syndrome in Childhood. Anais Brasileiros de Dermatologia, Aug;90(4):567-9 (online).

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).

Shinozuka, J., Tomiyama, H., Tanaka, S., Tahara, J., Awaguni, H., Makino, S., Maruyama, R. and Imashuku, S. (2015) Neonatal Sweet’s Syndrome Associated with Rectovestibular Fistula with Normal Anus. Pediatric Reports, Jun 24;7(2):5858 (online). 

Wang, T., Liu, H., Wang, L., Guo, Z. and  Li, L. (2014) An Unusual Case of Sweet Syndrome in a Child: Overlapping Presentation With Erythema Elevatum Diutinum. The American Journal of Dermatopathology, Feb (PubMed).

If your doctor is not familiar with Sweet’s syndrome, the Gray et al medical article provides an excellent overview of Sweet’s syndrome in children.

© 2012-2016 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

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Updated and reposted on 13/10/16.

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 – conspiracy theorists will say that the evidence has been covered up or destroyed which is why we can’t find it – but it is not unusual for those selling bogus treatments to resort to the ‘Big Pharma’ conspiracy theory simply to try and back up their false claims. This is done because they have no evidence to prove that their treatments are effective. And so, in order to try and convince you that their treatments really do work, they will tell you that ‘Big Pharma’ is greedy and evil, and that those who are part of the conspiracy don’t want you to discover that alternative therapies can cure Sweet’s syndrome or any other condition, i.e. ‘Big Pharma’ never wants you to discover the secret truth.

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:

  • Homeopathy: this is being advocated as a treatment for Sweet’s syndrome by quite a few alternative therapists. This is a pseudoscientific claim, i.e. a false or made-up claim that appears to be scientifically-based, but is not, 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, 2015). Please take this into consideration before choosing to try homeopathy. However, if you do choose to try it, then it is probably safe.
  • Baking soda (sodium bicarbonate): this is being advocated as a treatment for Sweet’s syndrome, myelodysplastic syndromes and leukaemia, and other cancers (in up to 25% of patients, Sweet’s syndrome develops secondary to some form of cancer). This is an incredibly dangerous pseudoscientific claim, and anyone who makes such claims should not be believed, and treated with extreme caution. Read more here.
  • 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. Important: if any alternative therapy, including essential oils, ever causes skin irritation or new lesions to develop, do not continue with the therapy, even if someone tries to pressurize or bully you into doing so. Read more here.
  • 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.
  • 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.
  • 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, and possibly autoinflammatory conditions such as Sweet’s syndrome worse. Alfalfa, astragalus, echinacea, and oral zinc should also be used with caution. Read more here.
  • 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. gluten-free, Palaeolithic, dairy-free, anti-inflammatory, and detox diets 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 if you have been taking systemic steroid medication for more than 3 months. This kind of diet can be lower in calcium, and if you are taking steroids, it is very important that you meet your daily calcium requirements. This is because you will be at increased risk of developing steroid-induced osteoporosis. You will need to be particularly careful if you have certain 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.
  • Osteopathy and chiropracty: Sweet’s syndrome can cause joint pain (arthralgia) or joint pain and swelling (arthritis), and sometimes develop secondary to autoimmune conditions that affect the joints, e.g. rheumatoid arthritis. If the joints are painful and swollen, osteopathy and chiropracty should be avoided. This is because joint manipulation can make symptoms worse. However, 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.

References.

NHS Choices (2015) Homeopathy (online).

Other information.

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 case-studies will be accepted as evidence. Anecdotal evidence, testimonials, YouTube videos, and information on blogs or websites where there are no references or links to medical case-studies will not be accepted.

Thank you.

Michelle Holder.

© 2012-2016 Sweet’s Syndrome UK

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

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 (not autoimmune) condition and form of neutrophilic dermatosis (ND), and in up to 25% 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.

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).

Other 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).

DermNet NZ (2007) Skin toxicity of chemotherapy drugs (online).

© 2012-2016 Sweet’s Syndrome UK

Mouth Ulcers and Sweet’s Syndrome

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Does Sweet’s syndrome cause mouth ulcers?

Yes. Occasionally, Sweet’s syndrome can cause mouth/oral 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. 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) (Ibid).
  • Necrotizing ulcerative periodontitis.
  • Enlargement of the gums (gingival hyperplasia).
  • 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 (BSS), 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.


Taken from the Behcet’s Syndrome Society leaflet – Behcet’s Disease and Mouth Ulcers (Birmingham Centre of Excellence, 2013).

Treatment.

General good oral hygiene is important with Behcet’s disease (*and Sweet’s syndrome), even when the mouth or gums are painful. Rinsing with mouthwash alone will not remove the dental plaque and is no substitute for brushing the teeth and flossing.

Typical adult toothpastes include detergents such as sodium lauryl sulphate (SLS) and flavouring agents that can exacerbate pain associated with oral ulceration. Toothpastes without SLS or prepared specifically for the ‘sore mouth’ are available. An alternative option is to use a children’s toothpaste. Toothpastes used by adults should include 1450 ppm fluoride.

Before considering the options listed below, you should discuss topical solutions with your specialist or doctor. Some of the remedies listed below are not licensed specifically for use in Behcet’s disease (*doxycycline and colchicine are treatments for Sweet’s syndrome) so will need consideration by your medical professional. Many are prescription-only and will require ongoing monitoring.

Relief of pain.

Topical analgesia for oral ulceration is available as mouthwash and spray (Difflam). The mouthwash potentially allows more parts of the mouth to be reached than the spray but is less portable. A normal dose would be to rinse or gargle with 15 ml of the mouthwash every 1–3 hours as needed and spit it out. The preparation contains 10% alcohol, which can cause stinging when used with a sore mouth. Dilution with an equal volume of water can help. For the spray preparation, 4–8 sprays should be directed onto the affected area every 1–3 hours as needed.

Relief of inflammation and reduction in ulceration.

Topical corticosteroids reduce inflammation and are the mainstay of topical treatment. All topical corticosteroid therapies are best applied as soon as the ulcer starts to develop and should be continued until the ulcer has completely disappeared. A wide range of topical corticosteroids may be considered and food and drink should be avoided for at least 30 minutes following application.

For the treatment of a single or low number of ulcers.

Mucoadhesive buccal tablets (previously known as Corlan pellets) can be placed on the ulcers and allowed to dissolve. This should be done up to four times daily. However, some patients may find the tablets difficult to position in the correct place.

Alternatively, an aerosol preparation such as a steroid inhaler used in the management of asthma or allergic rhinitis (e.g. hay fever) may be considered. The aerosol can be sprayed directly onto ulcers. Suitable inhalers are beclometasone metered-dose inhaler 50–100 micrograms sprayed twice daily onto the affected area or fluticasone propionate aqueous spray 50 micrograms, 2 puffs sprayed on to the ulcers three times daily.

For treating several ulcers.

Corticosteroid mouthwashes can be used where there is widespread development of crops of ulcers. Betamethasone soluble 500 microgram tablets are licensed for the management of oral ulcers. One tablet should be dissolved in 10–15 ml of warm water and then gargled ensuring affected parts of the mouth are covered for up to 4 minutes. The solution should not be swallowed. The mouthwash should be used up to three times a day. Alternatively, soluble prednisolone 5 mg tablets dissolved in 10–15 ml of warm water can be used up to three times a day.

Protective barriers.

Mucosal coating agents are used to physically cover ulcerated areas to reduce unpleasant symptoms associated with activities such as speaking, smiling swallowing or yawning.

Pastes.

Carmellose sodium (Orabase) can be used to protect the sore areas of the mouth. It should be applied sparingly directly onto the ulcer when required. Application can be difficult to the tongue and the back of the mouth.

Topical gels.

Gelclair is a viscous gel specifically formulated to aid the management of inflammation of the oral mucosa. The gel can be used as a mouthwash up to three times daily after dilution or applied directly to the affected site using a clean finger or swab such as a cotton bud. The mouthwash is prepared by diluting the contents of one sachet with 3 tablespoons of water. The solution is then rinsed around the mouth for 1 minute and provides a protective coat over the mucosa.

Anti-microbial agents.

Anti-microbial agents are used to control pain by reducing the secondary infection associated with mucosal ulceration.

Chlorhexidine mouthwash, gel or spray.

Chlorhexidine has a broad anti-microbial spectrum. Preparations are licensed for the management of aphthous ulcers.

For chlorhexidine 0.2% mouthwash, 10 ml of solution should be rinsed around the mouth for 1 minute twice daily and then spat out. Alternatively, an oral spray – Corsodyl (chlorhexidine 0.2%) – may be used with up to 12 applications of spray used twice daily. Chlorhexidine gel preparations can be applied directly to the ulcer or brushed on the teeth once or twice daily. Preparations available include Corsodyl gel (chlorhexidine 1%) and Curasept gel (chlorhexidine 5%).

A number of chlorhexidine preparations contain alcohol, which can irritate the oral mucosa. However, alcohol-free mouthwashes can be found, including Corsodyl, Curasept and Periogard. The Curasept gel formulation is also alcohol-free.

Doxycycline.

Doxycycline has antibacterial and anti-inflammatory properties and can be used when the use of chlorhexidine has failed. Its main value in treating mouth ulcers comes from its anti-inflammatory action. The contents of one doxycycline 100 mg capsule should be dissolved in 10–15 ml water. Again, the solution should be held in the mouth for up to 4 minutes, ensuring that the solution comes into contact with the affected parts of the mouth. This should be done at least four times a day for 3 days. The solution should not be swallowed, and food and drink should be avoided for 30 minutes after use of the preparation. Prolonged use should be avoided, as this can increase the risk of oral infections such as candidiasis (thrush).

Colchicine.

For recurrent oral ulceration that has failed to respond to topical treatments alone, oral colchicine may be prescribed by your doctor.

* Additional notes added to the text – Michelle Holder, Sweet’s Syndrome UK.


For patients in the United States with an autoinflammatory condition, including Sweet’s syndrome.

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

Prescription Magic Mouthwash.

Magic mouthwash (*not available in the UK) is a prescription mouthwash that you use to rinse and then spit. It primarily contains lidocaine, which numbs the mouth. There are different brands available that may also contain hydrocortisone to reduce inflammation, the antifungal medication nystatin, an antibiotic, and/or the antacid magnesium hydroxide to coat the mucus membranes inside the mouth.

Milk of Magnesia and Liquid Benadryl.

This is a liquid mouthwash you can make at home, but discuss this with your doctor before you begin using this treatment. Mix 1/2 teaspoon each of milk of magnesium and liquid Benadryl. Swish it in the mouth and then spit it out. Do not drink it. Some people mix it up, and squirt it into the mouth with an oral medicine syringe to coat the mouth, then spit it out.

Hydrogen Peroxide and Milk of Magnesia.

Dab a drop of hydrogen peroxide mixed with water directly on the ulcer with a cotton swab. The National Institutes of Health (NIH) recommends mixing one part hydrogen peroxide to one part water followed by a dab of Milk of Magnesia directly onto the sore. You can do this three to four times a day.

*Some patients with Sweet’s syndrome demonstrate pathergy, i.e. lesions can develop when the skin is damaged or irritated. Oral pathergy is EXTREMELY RARE, but if irritation does occur when using hydrogen peroxide, then discontinue use immediately.

B Vitamins.

Folic acid and vitamin B12 deficiencies can cause mouth ulcers. A daily B vitamin supplement may help reduce or prevent mouth sores.

*Sweet’s syndrome-related mouth ulcers are not caused by vitamin deficiency, but a daily B vitamin may help to reduce your overall risk of developing non-Sweet’s syndrome-related mouth ulcers.

A Benzocaine Warning.

In 2011, the FDA released a warning that using products containing benzocaine could lead to methemoglobinemia, a rare blood disorder. Most of the cases reported were in children under that age of two who were treated with benzocaine gel products for teething pain. Adult cases have also been reported. The FDA recommends that benzocaine products not be used on children younger than two without medical supervision.

*In the UK, 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).

* Additional notes added to the text – Michelle Holder, Sweet’s Syndrome UK.


References.

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.

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).

Other information.

DermNet NZ (2016) Aphthous Ulcers (online).

© 2012-2016 Sweet’s Syndrome UK

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

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Updated and reposted 29/06/16.

Alternative therapists are recommending or using certain herbs and supplements to treat or ‘cure’ Sweet’s syndrome, despite the fact that there is absolutely no medical evidence that any of these things work, and some 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 of any use 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 cause 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 (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), warfarin, contraceptives, or oestrogens.

Astragalus – flowering plant.

There is no evidence to show that astragalus is of any use 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 or autoinflammatory 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 of any use 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 of any use 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 or autoinflammatory 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 of any use 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 use 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. In fact, some of these interactions may be dangerous.

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 have HIV or AIDS.
  • You are pregnant or breastfeeding.

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, i.e. 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. Research is needed before we know if these same herbs and supplements can make autoinflammatory conditions such as Sweet’s syndrome worse, but it is a possibility that cannot yet be ruled-out. It is also 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?

© 2012-2016 Sweet’s Syndrome UK

What NOT to say to someone with Sweet’s syndrome!

Faking Being Well

If  you know someone with Sweet’s syndrome (SS), please don’t say the following things to them. Unfortunately, they are things that people with SS hear all too often, and even though a few of them are well-meant, some are incredibly insulting.

What NOT to say to someone with Sweet’s syndrome!

1. ‘But you don’t look sick’ or ‘Are you faking it?’

The commonest symptom of SS is tender or painful skin lesions, but these are often covered up in some way, e.g. with make-up, by hair or clothing. Also, MOST of the symptoms of SS cannot be seen, but just because you can’t see them, doesn’t mean that someone with SS isn’t very sick or that they’re faking being ill.

2. ‘You should try this new diet or supplement. It can’t hurt to give it a try.’

SS is an autoinflammatory condition and caused by errors in the innate system. There is no special diet or supplement that can correct these errors. Sometimes, a change in diet or certain vitamins and supplements might help to improve overall health, but they are certainly not a replacement for proper medical treatment. Also, some diets and supplements can do more harm than good, and be very costly. For example, restrictive diets can lead to nutritional deficiency and health problems; certain supplements may not be safe to take or interact with medications; special diets and supplements can be something that many people with SS really can’t afford to buy, and their money could be better spent elsewhere.

3. ‘I’m too busy to get ill’ or ‘You need to keep busy and just get on with it!’

NEVER smugly say to someone with SS, ‘I’m too busy to get ill’. Being busy is not a protection against illness, and no matter how busy or in demand you are, illness can still affect you and STOP you from doing the things that you want to do at ANY TIME. People with SS don’t choose to get ill, and even when they desperately want to just ‘get on with it!’, they can’t. Also, keeping busy isn’t going to make SS go away or lessen its impact, and doing too much can often make symptoms worse.

 4. ‘I wish I had the luxury of being sick so that I could stay at home all day’.

Being sick is not a luxury, and most people with SS would give anything to be well again. They do not enjoy being ill (do you enjoy it?), and can get very frustrated and depressed because they can no longer work or do the things that they once did. In fact, many with long-term SS go through a grieving process where they mourn the loss of the person that they were and the life that they once had.

5. ‘If you learnt to cope better or didn’t get stressed then you wouldn’t be sick’.

As already mentioned, SS is caused by errors in the innate immune system, and at present, there is no evidence to show that it is directly caused by stress. Some people do find that their SS gets worse when they are stressed, but this might happen for a number of different reasons, including their steroids being reduced or stopped. However, in others, their condition flares-up when they are not feeling stressed at all. Also, it is ridiculous to expect those with SS to avoid stress completely. Living with SS can be very stressful in itself, and for all of us, stress is part of everyday life.

6. ‘Don’t give in’, ‘Stop complaining’ or ‘Why do you have to be so negative?’

People with SS are not giving in or being negative when they admit to having a bad day or struggling to cope with their condition. They have the right to have a bad day, just the same as anyone else. NO-ONE can be upbeat, positive and optimistic all of the time, and having a moan or rant or even a bit of a cry can sometimes be very healthy. It can help you to release your feelings and reduce emotional stress.

© 2012-2016 Sweet’s Syndrome UK

Can medication trigger Sweet’s syndrome?

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Can medication trigger Sweet’s syndrome?

Yes. In up to 5% of cases, Sweet’s syndrome is triggered by medication (Cohen, 2007). This is known as drug-induced Sweet’s syndrome.

How will you know if your Sweet’s syndrome has been triggered by medication?

In at least 95% of patients with Sweet’s syndrome, their condition is NOT triggered by medication. However, drug-induced Sweet’s syndrome should be considered if:

  • Your Sweet’s syndrome developed not long after a particular medication was started.
  • Your Sweet’s syndrome has continued to persist for many months or years, even after treatment.

What will happen if your doctor thinks you have drug-induced Sweet’s syndrome?

Unfortunately, there is NO SPECIAL TEST to tell you whether or not your Sweet’s syndrome is being triggered by medication. However, if it is suspected that your Sweet’s syndrome is drug-induced, your doctor will:

  • Stop the medication that is possibly causing your Sweet’s syndrome. Your Sweet’s syndrome should then start to settle down, but you may still need treatment.
  • Re-introduce the medication to see if your Sweet’s syndrome flares-up again. Sometimes, your doctor will decide that this is not necessary.

Why does medication trigger Sweet’s syndrome in some people?

The main theory is that drug-induced Sweet’s syndrome is caused by hypersensitivity reaction, but it can sometimes happen for other reasons too. Read more here.

What is hypersensitivity reaction, and is it the same as allergic reaction?

No. Hypersensitivity reaction is not the same as allergic reaction.

In some people with Sweet’s syndrome, the innate immune system (a part of the immune system that doesn’t produce antibodies) can be hypersensitive and over-react to the presence of infectious, inflammatory, drug, or tumour cell antigens – antigens are proteins or substances that a part of your immune system called the adaptive immune system sees as a foreign invader and produces antibodies in response to (Bhat et al, 2015: 257; Kasirye et al, 2011: 135). This means that the presence of antigens associated with certain health conditions and medications could potentially trigger Sweet’s syndrome by causing the innate immune system to activate inflammatory cells, particularly white blood cells called neutrophils (Gosheger et al, 2002: 70). This then leads to the symptoms of Sweet’s syndrome. Read more here.

An allergic reaction is when the body has an adverse reaction to a substance that is foreign to the body that does not normally cause harm, e.g. a food, pollen or medication. This substance is known as an allergen. The immune system mistakes the allergen for a foreign invader such as a bacteria or virus. The adaptive immune system then quickly produces allergen-specific immunoglobulin E (IgE) antibodies in response to the allergen, in order to fight it off. Chemicals such as histamine are also produced, with the overall immune response causing the symptoms of allergy.

What medications have been reported to have triggered Sweet’s syndrome?

Medications that have been reported to trigger Sweet’s syndrome include:

Analgesics (non-opioids).

  • Paracetamol (triggered a Sweet’s syndrome-like condition) (Culla et al, 2014).

Antibiotics.

  • Amoxicillin (possibly) (Volpe, 2016).
  • Clindamycin (Cruz-Velasquez et al, 2016).
  • Tetracycline (Ibid).
  • Doxycycline.
  • Minocycline (Cohen, 2007).
  • Nitrofurantoin (Ibid).
  • Norfloxacin.
  • Ofloxacin.
  • Trimethoprim/sulfamethoxazole.
  • Quinupristin/dalfopristin.
  • Piperacillin/tazobactam (Cruz- Velasquez et al, 2016).

Anti-epileptics.

  • Carbamazepine (Cohen, 2007).
  • Diazepam (Cohen, 2007).

Anti-hypertensives.

  • Hydralazine (Cohen, 2007).

Anti-malarials.

  • Chloroquine (Cruz-Velasquez et al, 2016).

Anti-manic agents.

  • Lithium (Xenophontos et al, 2016).

Anti-neoplastics.

  • Bortezomib (Llamas-Velasco et al, 2015).
  • Decitabine (Kasirye et al, 2011: 134).
  • Imatinib mesylate (Cohen, 2007).
  • Ipilimumab (Gormley et al, 2014).
  • Lenalidomide (Cohen, 2007).
  • Obinutuzumab (triggered a Sweet’s syndrome-like condition) (Korman et al, 2016).

Anti-viral drugs.

  • Abacavir (Cohen, 2007).
  • Acyclovir (Cruz-Velasquez et al, 2016).
  • Interferon-α (Cruz-Velasquez et al, 2016).

Colony stimulating factors.

  • Granulocyte-colony stimulating factor (G-CSF). This is the most common treatment to trigger Sweet’s syndrome (Cohen, 2007).
  • Granulocyte-macrophage-colony stimulating factor (GM-CSF) (Ibid).
  • Pegfilgrastim.

Contraceptives.

  • Levonorgestrel/ethinyl estradiol (Triphasil) (Cohen, 2007).
  • Levonorgestrel-releasing intrauterine system (Mirena) (Cohen, 2007).

Diuretics.

  • Furosemide (Cohen, 2007).

Immunosuppressants.

  • Azathioprine (Salem et al, 2015).

Nonsteroidal anti-inflammatory drugs (NSAIDs).

  • Celecoxib (Cohen, 2007; Oh et al, 2016).
  • Rofecoxib (Cruz-Velasquez et al, 2016).
  • Diclofenac (Cohen, 2007; Gupta et al, 2015).

Platelet aggregation inhibitors.

  • Ticagrelor (Ikram and Veerappan, 2016).

Proton-pump inhibitors.

  • Esomeprazole (Cohen, 2015).
  • Omeprazole (Cohen, 2015).

Psychotropics.

  • Clozapine (Cohen, 2007).
  • Amoxapine (Cruz-Velasquez et al, 2016).
  • Diazepam (Ibid).
  • Lormetazepam.

Retinoids.

  • All-trans retinoic acid (Cohen, 2007; Tam and Ingraffea, 2015).
  • 13-cis-retinoic acid (isotretinoin) (Cohen, 2007).

Sulfa drugs.

  • Sulfasalazine (Romdhane et al, 2016).

Thyroid drugs.

  • Propylthiouracil (Cruz-Velasquez et al, 2016).

Vaccinations.

  • Bacillus Calmette-Guerin (BCG or tuberculosis) (Cruz-Velasquez et al, 2016).
  • Streptococcus pneumonia (Pneumovax) (Ibid).
  • Influenza.
  • Smallpox.

Please note that Sweet’s syndrome caused by vaccination is so rare that a definite connection has not been established. Also, as infection is a much more common trigger for Sweet’s syndrome than vaccination, you are more likely to develop Sweet’s syndrome as a result of not having your vaccinations than having them.

Xanthine oxidase inhibitors.

  • Allopurinol (Polimeni et al, 2015).

Other.

  • X-ray contrast agents (Cruz-Velasquez et al, 2016).

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).

Cohen, P. (2015) Proton pump inhibitor-induced Sweet’s syndrome: report of acute febrile neutrophilic dermatosis in a woman with recurrent breast cancer. Dermatology Practical & Conceptual, April; 5(2):113–119 (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.

Culla, T., Amayuelas, R., Diez-Canseco, M., Fernandez-Figueras, M., Giralt, C. and Vazquez, M. (2014) Neutrophilic dermatosis (Sweet’s syndrome-like) induced by paracetamol. Clinical and Translational Allergy, Jul; 4(Suppl 3): P83 (online).

Gormley, R., Wanat, K., Elenitsas, R., Giles, J., McGettingan, S., Schucher, L. and Takeshita, J. (2014) Ipilimumab-associated Sweet syndrome in a melanoma patient. Journal of the American Academy of Dermatology, Nov;71(5):e211-3 (online).

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.

Gupta, S., Bajpai, M. and Uraiya, D. (2015) Diclofenac-induced sweet’s syndrome. Indian Journal of Dermatology;60:424 (online).

Ikram, S. and Veerappan, V. (2016) Ticagrelor-induced Sweet Syndrome: an unusual dermatologic complication after percutaneous coronary intervention. Cardiovascular Intervention and Therapeutics, May 4th (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).

Korman, S., Hastings, J. and Byrd, J. (2016) Sweet-Like Eruption Associated With Obinutuzumab Therapy for Chronic Lymphocytic Leukemia. JAMA Dermatology, Nov 23 (online).

Llamas-Velasco, M., Concha-Garcon, M., Fraga, J. and Arageus, M. (2015) Histiocytoid sweet syndrome related to bortezomib: A mimicker of cutaneous infiltration by myeloma. Indian Journal of Dermatology, Venereology and Leprology, May;81:305-6 (online).

Oh, E., Shin, J., Hong, J., Kim, J., Ro, Y. and Ko, J. (2016) Drug-induced bullous Sweet’s syndrome by celecoxib. The Journal of Dermatology, Apr 6 (PubMed).

Polimeni. G., Cardillo, R., Garaffo, E., Giardina, C., Macrì, R., Sirna, V.,  Guarneri, C. and Arcoraci, V. (2015) Allopurinol-induced Sweet’s syndrome. International Journal of Immunopathology and Pharmacology, Dec 18th (PubMed).

Romdhane, H., Mokni, S., Fathallah, N., Ghariani, N., Sriha, B. and Salem, B. (2016) Sulfasalazine-induced Sweet’s syndrome. Therapie, Jun;71(3):345-347 (PubMed).

Salem, C., Larif, S., Fathallah, N., Slim, R., Aounallah, A. and Hmouda, J. (2015) A rare case of azathioprine-induced Sweet’s syndrome in a patient with Crohn’s disease. Current Drug Safety, July (PubMed online).

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

Volpe, M. (2016) Sweet Syndrome Associated with Upper Respiratory Infection and Amoxicillin Use. Cureus, Apr; 8(4): e568 (online).

Xenophontos, E., Ioannou, A., Constantinides, T. and Papanicolaou. E. (2016) Sweet syndrome on a patient with autoimmune hepatitis on azathioprine and CMV infection. Oxford Medical Case Reports, Feb; (2): 24–27 (online).

Other information.

Cetin, G., Sayarlioglu, H., Erhan, C., Kahraman, H., Ciralik, H. and Sayarlioglu, M. (2014) A case of neutrophilic dermatosis who develop palpable purpura during the use of montelukast. European Journal of Dermatology,  Dec; 1(4): 170–171 (online).

© 2012-2016 Sweet’s Syndrome UK