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