How long have you had Sweet's syndrome?

[Shell567]

[Shell567 Administrator Sweet's Syndrome UK]

Hi to all,

I've had Sweet's syndrome for approx. 15 years. It's been so long I'm not entirely sure any more

[Froggie]

Four years

[Debjj]

3 years now

[sweetas]

3 years

[Weewheels]

1 year now..

[piperchick]

My first oubreak, one of the worst, was in 2007. I was finally diagnosed a week ago.

[Shell567 Administrator Sweet's Syndrome UK]

Hi Piperchick, it's good to know that you finally have a diagnosis - 6 years is a very long time to wait.

[freckles1]

23 LONG YEARS....I use to think maybe it was gone or would go away. Now I think I will have it until I die.

[Shell567 Administrator Sweet's Syndrome UK]

Hi freckles1, I've had SS for over 15 yrs. Are your flare-ups severe? Fortunately, mine are not as problematic as they once were.

[freckles1 in reply to Shell567]

Hi Shell567, My flare ups are well controlled. I get the bumps on my face, neck, behind the ears, and scalp. I get injections of kenalog or celestone and take SSKI twice a day. I have something on my face almost every day but it is important to keep it in check because once it gets out of control it is very hard to rein in. I put next to nothing on my face. I will put on Locoid lotion (this is new) Aczone was a disaster and made my face go crazy so I stopped. I have tried many meds but never biologics (YET)

[jerrybelle]

5 years

[Shell567 Administrator Sweet's Syndrome UK]

Thanks to everyone for your responses.

[Creynardo]

First diagnosed 15 yrs ago. After clearing that flare up, I had been in remission for 13yrs. The occasional spot, nothing serious. Last year the lesions came back with a vengeance. At first the outbreaks were every 3 months, then every 2 months, then monthly. Now it never stops. The lesions are getting more severe with every outbreak. They are scaring and leaving behind craters where healthy skin once was. The dermatologist did another punch biopsy and decided he doesn't think it's SS. Even though the biopsy result stated "early Sweet Syndrome" RIGHT!?! It is so frustrating to deal with medical professionals that want to contradict themselves and others. Makes me just want to quit talking to them and just deal with the flares, they're not listening anyway. I can sit at my laptop and in 15 min find 15 different case studies that match my symptoms and med list. They can't be bothered and will stick to their opinions usually because they don't want to admit they know very little about this rare condition and the many ways it can manifest. Rant over..thanks for listening.

[Shell567 Administrator Sweet's Syndrome UK in reply to Creynardo]

Hi Creynardo,

Sorry to hear there are problems with diagnosis. What other conditions are your doctors considering?

Sometimes diagnosis isn't straightforward, and there can be variations in blood/biopsy results. Ideally, a biopsy needs to be taken as quickly as possible. If the lesion is more than 7 days old, it can sometimes affect results.

[Creynardo in reply to Shell567]

I have been diagnosed already with Lupus, Sjogren's, and Sweets. Original Sweets diagnosis was about 15 yrs ago. I believe just as there are inexperienced doctors there are inexperienced pathologists. My derm said she would have them take another look at the slides to be sure. The rarity of the disease has all new doctors immediately denying the diagnosis. My rheumatologist and oncologist say it definetly is SS. While the dermatologist over my PA, which hasn't even seen me this flare, says he doesn't think it's SS. Makes me wonder if we'll ever get a treatment if they can't agree on a diagnosis. American doctors have such egos, they won't listen to their patients and won't do the required research to come to an informed decision.

[Anna2131p]

It took 2years before finally seeing a dermatologist who did biopsy on a flare up area and histology confirmed SS and now 3.5 years under great multi team

[REVIN4GOD]

Since June 2010