Living with Sweet Syndrome

[Lisalucas72]

I was diagnosed with Sweet syndrome Febuary 2016 . I had Blisters on both of my hands that were very painfull , my Arms, Upper Legs, Face, feet were covered in a rash. I had no other symtoms.

[Shell567 Administrator Sweet's Syndrome UK]

Hi Lisa,

Your experience of Sweet's syndrome (SS) is unusual, but most certainly no less unpleasant and painful. Most Sweeties have other symptoms, but not always. SS occasionally affects the hands, but rarely the feet. Lesions on the feet must have caused you quite a few problems, and made day-to-day life very difficult.

Michelle.

[scooter17]

Lisa, I'm so sorry to hear your story. Good news is diagnosis, bad news is no known cause or cure. It's so bizarre and docs who have seen my case said it the worse they have ever seen but the majority have never even heard of SS. I ended up in hospital within 2 weeks after it broke out on my back in the form of little red dots that quickly spread and turned into blisters spreading to back of arms, upper legs, feet, hands scattered somewhat on front. That was in January 2016 when I quickly became a case study. BUT I'm a guinea pig as far as treatment. Finally got under control during 5 weeks of hospitalization and numerous drugs, dressings, etc. Stayed fairly dormant until this year and I've been fighting it again for months in the form of swollen red papules spreading down my legs, hands, feet and back of arms, lower back and especially back side of legs. Living in Houston TX probably exacerbates the condition with the heat. Recently started Methotrexate injections weekly, praying it is effective and heading to Colorado for 10 days soon. That should help alot!! Please take care and closely report your condition to your docs so it doesn't get out of control. Everyone seems to have different symptoms they've experienced. Where do you live?

[Lisalucas72 in reply to scooter17]

I live in Brisbane Qld. Your SS sounds just like mine

[scooter17 in reply to Lisalucas72]

Certainly not fun!!!

[kell893]

Hi Lisa - I also live in Brisbane Do you have a specialist you see? I've only been diagnosed 6 weeks ago. I've had breast ultrasound and biopsy on a lump, colonoscopy and endoscopy and two lots of complete blood count tests done - all have come back fine. They think it was due to having severe tonsillitis a week before I broke out in the rash/lesions. But I can't stop worrying about the possibility of cancer - need to get my head right and get back to living!

[Lisalucas72 in reply to kell893]

Dermatologist at the Royal Brisbane Hospital