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 of SS 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 there is absolutely no evidence to show it is caused by stress. However, some people do find that their SS gets worse when they are stressed (this could happen for a number of different reasons), but in others, their condition flares-up when they are not 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 let go of and reduce emotional stress.

© 2012-2016 Sweet’s Syndrome UK

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

keep-calm-and-protect-yourself-473

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 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.

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:

  • 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.

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), 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), 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.

The sale of this merchandise is FOR-PROFIT, and Rhonda does 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

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

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Updated and reposted 29/06/15.

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.

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.

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.

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.


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. Read more here (follow link and look under ‘Other concerns’).


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 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, i.e. increase immune system activity or make it more overactive, potentially making autoimmune conditions worse. Research is needed before we know if these same herbs and supplements can make autoinflammatory conditions such as Sweet’s syndrome worse. However, 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, 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.

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

Warning! Sweet’s syndrome cannot be cured with herbs or homeopathic remedies.

What is the treatment for Sweet’s syndrome?

© 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).

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 (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. 

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).

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).

© 2012-2016 Sweet’s Syndrome UK

10 myths about Sweet’s syndrome

A diet of turnips meme

Myth no.1: Sweet’s syndrome is a condition that is caused by eating too much sugar or is something to do with diabetes.

Fact: Sweet’s syndrome or acute febrile neutrophilic dermatosis is nothing to do with sugar or diabetes. It is a rare autoinflammatory condition and neutrophilic dermatosis. It is called Sweet’s syndrome because it was a Dr. Robert Sweet who first described the condition in 1964. Read more here.

Myth no.2: Sweet’s syndrome is an autoimmune condition.

Fact: Sweet’s syndrome is an autoinflammatory and not an autoimmune condition. These conditions are similar, but involve different parts of the immune system. Read more here.

Myth no.3: Sweet’s syndrome only affects the skin.

Fact: Skin lesions are usually one of the main symptoms of Sweet’s syndrome. However, Sweet’s syndrome doesn’t just affect the skin, but causes lots of other symptoms too. Sometimes, it can make a person seriously ill, and on rare occasions may be life-threatening. Read more here.

Myth no.4: People with Sweet’s syndrome only have skin problems because of poor hygiene.

Fact: In people with Sweet’s syndrome, the skin lesions are caused by the activation of inflammatory cells, mainly white blood cells called neutrophils. They are not caused by poor hygiene. Read more here.

Myth no.5: Sweet’s syndrome is contagious.

Fact: Sweet’s syndrome is not an infection, so cannot be ‘caught’. See Myth no.1 & 2.

Myth no.6: If people with Sweet’s syndrome spent more time in the sun then their skin problems would go away.

Fact: In some people with Sweet’s syndrome, overexposure to ultraviolet (UV) light or sunlight can trigger the development of new skin lesions.

Myth no.7: Skin problems in people with Sweet’s syndrome can be treated with essential oils.

Fact: In some people with Sweet’s syndrome, trying to treat the skin lesions with essential oils could irritate the skin and make things worse. This is because of pathergy, i.e. when skin damage or irritation triggers the development of new lesions. Read more here.

Myth no.8: Sweet’s syndrome is caused by diet or dietary toxins, e.g. gluten or dairy.

Fact: Sweet’s syndrome is not caused by diet or dietary toxins, and cannot be treated or cured with a special diet. It is caused by errors in a part of the immune system called the innate system, and involves factors such as genetic susceptibility, cytokine dysregulation, and hypersensitivity reaction (this is not the same as allergic reaction). Read more here.

Myth no.9: Boosting the immune system will cure Sweet’s syndrome.

Fact: In people with Sweet’s syndrome, the innate immune system is overactive and not underactive. Boosting the immune system, i.e. increasing immune system activity, will not help.

Myth no.10: You only have Sweet’s syndrome because you get stressed.

Fact: Sweet’s syndrome is not caused by stress. See Myth 1, 2, 4, 8 & 9. Some people find that their Sweet’s syndrome gets worse when they are stressed, but this could be happening for a number of different reasons.

© 2012-2016 Sweet’s Syndrome UK

June 2nd – Sweet’s Syndrome UK Day & 4th anniversary of Sweet’s Syndrome UK

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June 2nd 2016 is Sweet’s Syndrome UK Day & the 4th anniversary of Sweet’s Syndrome UK.

What can you do to help spread awareness?

  1. Like our Facebook page.
  2. Join our HealthUnlocked forum. It’s free!
  3. Follow this blog.
  4. Follow me 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 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!

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

In up to 25% of patients with Sweet’s syndrome (SS), their condition develops secondary to some form of blood disorder or cancer, particularly a group of blood disorders called myelodysplastic syndromes (MDS). Depending on what type of MDS you have, MDS may cause problems such as anaemia (a low number of red blood cells) or more severe problems such as leukaemia (a type of blood cancer).

Is baking soda a treatment for Sweet’s syndrome or myelodysplastic syndromes?

No. Baking soda, otherwise known as sodium bicarbonate, is not a treatment for SS or MDS.

Recently, sodium bicarbonate has been advocated as a treatment for SS and MDS. This is a potentially dangerous claim that is not supported by medical research, and if you have SS or/and MDS, you will need proper medical treatment. In some cases, if you do not receive proper medical treatment, this could result in you becoming seriously ill or even losing your life.

A doctor by the name of Tullio Simoncini is treating patients who have MDS and cancer with sodium bicarbonate. If he’s a doctor, doesn’t that mean it works?

No. Dr. Simoncini is a former Italian doctor and known fraudster, and his practice is incredibly dangerous. In 2003, he was struck off the medical register for treating cancer patients with sodium bicarbonate instead of chemotherapy. In 2006, he was found guilty of fraud and manslaughter after a patient died as a result of using his treatments.

Unfortunately, Dr. Simoncini is continuing to tell people that MDS and cancer can be cured with sodium bicarbonate, despite the fact that there is no and has never been any medical research to support his claims. This pseudoscientific claim (false or made-up claim that appears to be scientifically based, but is not) is based on the very strange idea that cancer is caused by a common fungal infection called ‘thrush’ (Candida albicans), and that the body develops cancer in an attempt to protect itself from this infection. Sodium bicarbonate supposedly gets rid of the ‘thrush’ and therefore cures the cancer. This is completely untrue. Cancer is not caused by ‘thrush’, and sodium bicarbonate isn’t even a treatment for fungal infections, let alone cancer.

Please treat anyone who advocates, promotes, sells or prescribes sodium bicarbonate as a treatment for Sweet’s syndrome, and in particular, MDS and leukaemia and other forms of cancer, with EXTREME CAUTION.

Even though you say that sodium bicarbonate isn’t a treatment for SS or/and MDS, if I want to try it, is it safe to use?

Sodium bicarbonate can be safe to use, and is commonly given as an antacid, i.e. to reduce stomach acid, but is sometimes used to treat other health conditions too. However, it is not always safe to use, particularly when taken in larger doses. This may be because of side-effects, certain health conditions or medications, pregnancy or breastfeeding. If given in high doses, the consequences may be serious or even fatal.

How is sodium bicarbonate given?

Sodium bicarbonate can be given orally (via the mouth), as an intravenous injection (injection into a vein), or as an intravenous infusion (into a vein via a drip). The way in which it is given depends on what kind of condition the sodium bicarbonate is being used to treat.

What are the side-effects of sodium bicarbonate?

Side-effects can depend upon how the sodium bicarbonate is given but may include:

  • Nausea.
  • Bloating.
  • Flatulence.

Less commonly:

  • Swelling of the hands, ankles and feet.
  • Sudden weight gain.

Rarely:

  • Dizziness.
  • Muscle aches and spasms.
  • Mental or mood changes, e.g. confusion, irritability or memory problems.
  • Vomiting.
  • General weakness.
  • Passing significantly more or less urine.
  • Chest pain.
  • Seizures.
  • When taken with lots of calcium (in the diet, medications or supplements), may cause milk-alkali syndrome.

In which health conditions should sodium bicarbonate be avoided or used with caution?

NOT TO BE USED in those with the following health conditions:

  • Certain breathing problems, e.g. pulmonary oedema.
  • Congestive heart failure.
  • Severe kidney disease.
  • Severe liver disease.
  • High sodium levels.
  • Swollen ankles, legs or feet due to retaining water (peripheral oedema).

To be used with CAUTION in those with:

  • Low calcium levels.
  • High blood pressure.
  • Heart problems.
  • Kidney disease.

Also, to be used with caution or avoided in those who are on a low-salt diet, pregnant or breastfeeding.

Which medications can be affected by sodium bicarbonate?

Sodium bicarbonate interacts with and should NOT TO BE USED when taking the following medications:

  • Aspirin and other salicylates, e.g. salsalate.
  • Barbiturates, e.g. phenobarbital.
  • Calcium supplements.
  • Corticosteroids (steroids), e.g prednisone.
  • Memantine.
  • Medications with a special coating to protect the stomach (enteric coating).
  • Lithium.
  • Quinidine.
  • Water pills (thiazide diuretics such as hydrochlorothiazide).

Reduces the effectiveness of and to be used with CAUTION when taking the following medications:

  • Certain drugs that require stomach acid to work, including ampicillin.
  • Atazanavir.
  • Certain azole antifungals (such as ketoconazole, itraconazole).
  • Iron supplements.
  • Pazopanib.
  • Sucralfate.

Sodium bicarbonate may also interact or reduce the effectiveness of some other medications, or should not be used in patients with health conditions that have not been listed above. Please speak to your doctor before use.

Keep safe!

Other information.

Childs, O. (2014) Don’t Believe the Hype – 10 Persistent Cancer Myths Debunked. Cancer Research UK (online).

Chlorella is not a treatment for Sweet’s syndrome.

MDS UK Patient Support Group.

Warning! Sweet’s syndrome cannot be cured with herbs or homeopathic remedies.

© 2012-2016 Sweet’s Syndrome UK