New Sweetie in California

[Tactmed]

So I am 49 years old and I was diagnosed with Sweet’s Syndrome in August of 2017. Since then I have had two “normal” blood tests with no indication of a blood cancer. I don’t have any other symptoms of any of the other underlying diseases that often cause SS, like ulcerative Colitis or other Inflammatory Bowel Disease. But I’m still scared. I constantly wonder what disease I have that has caused this and am I dying.

My SS does not come with fever but causes significant muscle and joint aches, fatigue, general malaise and depression. I do get the big red lesions mostly on my upper arms, chest and legs. I also get an itchy dermatitis type itchy rash. My dermatologist says it’s something else but I’m sure it’s related to my SS. The itchy rash is almost everywhere but concentrated on the inside of my upper arms, the back of my legs, my abdomen and upper legs. Does anyone else get an itchy rash with their SS?

So far my symptoms have been tough but not debilitating as some of what I have read here. It does affect my daily activity a little. My Dr treats it with a 5 week tapering dose of Prednisone and it makes me feel so much better but I eat like a horse, retain water, get grumpy and gain weight, all of that I HATE!! So having the disease and now worried about prednisone has got me depressed.

Are there other medications that can be used? Since August, I’ve been on prednisone four times. That is the only times my symptoms go away. As soon as I come off, my symptoms come back. Is this a lifetime affliction?

Thanks for any replies. I have no other medical problems. I’m pretty healthy. I am so excited I found the website and this forum there is so much info. And thank you Michelle for all of this. You are right, no one, including most physicians, knows very much about this disease.

Sweet’n in Cali

[Shell567 Administrator Sweet's Syndrome UK]

Hi Tactmed,

In 50% of people with SS there is no trigger or underlying disease, and only 15-20% develop their SS secondary to cancer which means that 80-85% do not: helpforsweetssyndromeuk.wor...

The SS rash doesn't usually itch, but sometimes it can.

The symptoms you've listed are all symptoms of SS: helpforsweetssyndromeuk.wor...

Autoinflammatory conditions such as SS can increase the risk depression, and as you've already mentioned, prednisone can affect mood: saidsupport.org/how-inflamm...

Unfortunately, prednisone does increase appetite, but reducing the amount of salt in your diet should help with the fluid retention.

It's not unusual for people with SS to need medications other than prednisone to bring their condition under control. Initially, these tend to be given alongside prednisone, and are then continued for a period of time once the prednisone has been stopped. In my case, I was on a combination of prednisone, dapsone and doxycycline. The prednisone was the first medication to be stopped, then the dapsone, and eventually the doxycycline. Aside from prednisone, not all SS patients respond well to the same medications, so your doctor will need to find out what works for you: helpforsweetssyndromeuk.wor...

Most people don't have life-long SS, but you're more likely to have ongoing problems with SS if it's developed secondary to another condition or there's another trigger. I've had SS for over 20 years, but that's because my SS is triggered by infection and skin damage. Fortunately, my flare-ups don't tend to last that long anymore, and I can now normally manage my SS without prescription medication.

Hope this information helps,

Michelle. x