Flare ups......

[weecarol91]

Just wondering how often people gget flare ups with ss? Or even how long they normally last when it does happen?

[Shell567 Administrator Sweet's Syndrome UK]

Hi weecarol91,

For the first couple of years after being diagnosed with SS, I had flare-ups all the time (sometimes only a few weeks between each flare-up). Now I have far fewer, and they tend to be much less severe.

Unfortunately, everyone tends to be different when it come to SS, so it will be impossible to say what kind of pattern your flare-ups will follow. Some people only have one episode of SS, while at least 1/3 will have repeat flare-ups. If you developed your SS secondary to another condition, you may find that your SS flares up when the other condition does.

The length of a flare-up can also vary. These days my flare-ups only tend to last a few days, while they used to last for weeks or several months.

Shell.

[weecarol91 in reply to Shell567]

Thanks shell,

I feel like when I got diagnosised a year ago with ss they were shorter flare ups but now I feel like they are longer that what they were to start with juat wanted to know if this was the same for anyone else

I also feel that with ss you get more scars and loose skin where the ss was active is it the same for yourself?

Caroline.

[Shell567 Administrator Sweet's Syndrome UK in reply to weecarol91]

Hi Caroline,

SS lesions have left me with some permanent skin redness, but not loose skin.

There are a few self-management tips that can help you to reduce the risk of a SS flare-up.

- Minimizing skin damage.

- Protecting your skin in the sun and avoiding sunburn.

- Being careful about picking up infections.

Shell. x

[Cat71]

I was diagnosed 10 years ago and would get one every other year. This summer has been unprecedented I've had three flareups in the last month. And I'm suffering with significantly more side effects than ever before.

[Shell567 Administrator Sweet's Syndrome UK in reply to Cat71]

Sorry to hear that, Cat71. SS can be a funny old thing, and the unpredictability of the flare-ups can be difficult to deal with. Hope things settle down soon. x

[abbyjo]

I was diagnosed about 8 years ago and had one year of those 8 flare up free. I have flare ups whenever I don't take prednisone. In addition to prednisone, I take 5 other medicines to try to keep me from flare ups but they don't seem to help.