Newly diagnosed with Sweets Syndrome
I was diagnosed with Sweets Syndrome in June. I am curios about how people live with symptoms, reoccurrence, etc.
I had a substantial outbreak when I was diagnosed in June. It took 7 days in the hospital to result in this diagnosis and two days of tests and treatment. I was on three steroids throughout the 9 days and for a month afterwards. Now, I am seeing a dermatologist who has some experience with Sweets Syndrome, and he prescribed colchicine as a long-term steroid. I am experiencing some minor reoccurrence and still have some of the symptoms.
, Keep us posted on how you're doing. John! - Warmly, Donna (Team Member) , thank you for answering my somewhat nosy questions! I am sorry your particular case seems to be a bit tricky to treat and I do hope the colchicine starts kicking in and you get some noticeable relief from the outbreaks. Has your doctor or dermatologist mentioned any possible triggers that could be causing the ongoing outbreaks?
Best, Erin, Team Member.
Hi,
!
I am not aware of another member of this community diagnosed with Sweet Syndrome, but I do hope if I'm wrong, they see your post and chime in here.
If you don't mind me asking, how are you doing? Are you dealing with a flare up right now? Are you experiencing painful rashes/discoloration/fever?
I know the common treatment is a course of steroids (either topical or oral) while an individual is experiencing active symptoms. Have you been or are currently on steroids? If so, are they helping?
Recurrance can definitely happen, but from the information I could find, the rate of recurrance varies widely.
I do hope you are doing okay and adjusting to this diagnosis. The good news is that it's quite treatable. The bad news is that it can be painful and cause some self conciousness if your rash is highly visible.
Hang in there and thanks for reaching out here! If I find more useful information (or members with experience with Sweet Syndrome), I will come back and share that info!
Best, Erin, Team Member.
