New Sufferer: Hi, I recently spent 1... - Sweet's Syndrome UK

Sweet's Syndrome UK

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New Sufferer

John-Merrick profile image
5 Replies

Hi,

I recently spent 10 days in hospital because my face/head and hands (only) erupted with lesions and pustules.

The doctors hadn't seen anything like it, after a few days they believed it to be Sweet Syndrome. I think they are probably right although I still haven't had my biopsy results through yet and the diagnosis isn't official.

I also have Angioedema. I reckon they are connected. For me Sweet Syndrome seems to be an auto immune problem. I would like to ask, is it unusual to have on face and hands only. Was it a one off, or will it return? If anyone can answer, I'd be grateful, Regards, John.

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John-Merrick
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Shell567 profile image
Shell567AdministratorSweet's Syndrome UK

Hi John,

SS is a rare autoinflammatory condition. Autoinflammatory and autoimmune conditions are similar, but involve different parts of the immune system. Autoinflammatory involve the innate (inborn immune system), and autoimmune mainly involve the adaptive (part that produces antibodies).

In most people, SS only affects the upper body, including the face, but it can potentially affect any part of the body. Which part of the body that will be affected can vary from person to person.

Angioedema isn't connected to SS, but swelling can occur. Were you started on any new medication before your flare-up? In 12% of cases, medication is a trigger (hypersensitivity reaction).

In approx. 66% of patients their SS doesn't return after initial treatment. Approx. 33% will experience repeat flare-ups, particularly if they've developed their SS secondary to another condition. Triggers and underlying conditions include: infection, mainly upper respiratory tract infection, e.g. cough, sore throat, flu, sinusitis; cancer (approx. 20%), one of the commonest being a group of blood disorders called myelodysplastic syndromes (MDS); inflammatory bowel disease, e.g. Crohn's disease or ulcerative colitis; autoimmune disease, e.g. rheumatoid arthritis or systemic lupus erythematosus; medication (12%); immmunodeficiency, e.g. common variable immune deficiency; skin damage; overexposure to sunlight; vaccination (very rare. Only 11 documented cases in the past 44 years, globally. Symptoms appear within hours to days, less commonly, about 2 weeks after vaccination). In 50% of SS patients there is no known trigger.

If you have any more questions, John, don't hesitate to ask.

Michelle.

Acute febrile neutrophilic dermatosis (Sweet's syndrome): dermnetnz.org/topics/acute-...

Neutrophilic dermatosis of the hands (a possible Sweet's syndrome variant): dermnetnz.org/topics/neutro...

Neutrophilic dermatoses: dermnetnz.org/topics/neutro...

John-Merrick profile image
John-Merrick in reply toShell567

Hi Michelle,

Thank you for your wonderful answer, I feel better informed than I was with the doctors. I hadn't started any new medicines. The only medicines I take are Piriton for my Angioedema and Nurofen for headaches.

Regards, John.

Liney1955 profile image
Liney1955

Hi John,

It is to do with white blood cells. I get it on my arms, and now started to break out

on my back. My Dermatologist put me on steriod tablet's , and Duo Cream. It is very

painful, more so for you on your face and head.

I hope your on the mend soon

John-Merrick profile image
John-Merrick in reply toLiney1955

Hi Liney1955,

Thanks for your answer. I'm on Steroid tablets and the cream too.

It was all a pretty horrible experience but I'm definitely better with each day that passes.

I hope you're better soon too.

Regards, Robin.

Liney1955 profile image
Liney1955

Hi John, I am pleased your getting on much better.

It is a dormant problem, it can go away for awhile, then back it come's.

I know it's a pain when it break's out, but don't let it rule your life.

Keep positive my friend

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