Best Treatment? Does SS turn into more serious health issues?

[Stasi]

I'm a 31 year old female and I’ve suffered with these lesions for the last 3 years and they grow all over my face, neck and on my scalp.

I’m currently awaiting results from my biopsy I had last week, however I was told to look at the bad.org.uk website for SS! Reading about SS it does sound like I have it – however I’ll await to hear back from the doctors. I have a lot of questions after reading this information, however my main two are do these lesions turn into more serious health issues like this website details? Also which is the best treatment to have?

[Shell567 Administrator Sweet's Syndrome UK]

Hi Stasi,

As notsosweets says, it is very confusing when you find out you have/might have a rare condition. Alongside the skin lesions, most patients will have a fever, and feel exhausted. Other common, and fairly common symptoms include muscle pain, joint pain, joint swelling, eye problems, e.g. sore eyes, 'pink-eye', episcleritis, and occasionally mouth ulcers. Once treatment is started, these symptoms generally settle down, but it can sometimes take a while to find a treatment regime that works for you.

About 21% of patients with Sweet's syndrome (SS) will develop their SS in association with some form of cancer. Rarely, the lesions can develop in internal joints and organs causing a variety of other symptoms. I know that this information must sound very scary, but the majority of SS patients don't develop cancer as a result of their condition, and will not develop internal lesions.

Prednisolone (steroids) is the main form of treatment. Unfortunately, if you are only treated with steroids your condition is more likely to flare-up again. Therefore, some SS patients take more than one form of medication at the same time. At present, colchicine and dapsone are the most commonly used, but there are lots of other medications that you can try. Taking another form of medication alongside your prednisolone can also make it easier for you to get off your steroids.

For more information on treatment go to the main site, and click on 'What is Sweet's Syndrome' (just under the banner). Then click on 'How is Sweet's Treated'. sweetssyndromeawareness.com/

We also have an FB group called 'Sweet's Syndrome UK' which is part of 'Sweet's Syndrome Awareness'. The members are not just from the UK, but several different countries. The group is a closed group, so only the members of the group can see what you post. facebook.com/groups/sweetss...

[erinstiver]

With my SS, the lesions aren't my main problem. I have SEVERE joint pain and stiffness, left eye pain, left rib pain, oral lesions, urinating blood, fatigue, etc. My rheumatologist put me on Humira 6 weeks ago. I haven't felt this good since I was hospitalized a year ago. With my lesions, I just use cream. So to answer your question, yes SS can cause many other problems. My liver panel is just now back to normal after a whole year.

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

Good to hear, Erin