My first visit to treat my Sweet Syndrome

[HairstylistSS]

Tomorrow I go to my Dermotolgist to talk about my treatment for Sweet Syndrome. I already take plaquenil for lupus. I am having so many symptoms. I am worried that she will not be familiar with treatment of this syndrome. What do you all take?

[Shell567 Administrator Sweet's Syndrome UK]

Hi HairstylistSS,

The oral steroid, prednisone, is the commonest treatment for Sweet's syndrome (acute febrile neutrophilic dermatosis), but there are many others.

DermNet NZ: dermnetnz.org/topics/acute-...

Blog: helpforsweetssyndromeuk.wor...

Medical article: ojrd.biomedcentral.com/arti...

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

Symptoms: helpforsweetssyndromeuk.wor...

[Liney1955]

I hope all goes well when you see your specialist. I have strong steroid cream for my back.

It helps the problem. I was suprised to have a follower - thank you

[HairstylistSS in reply to Liney1955]

My visit went well. She kept me on my plaquenil and added a topical cream. She is also sending me for some cancer screenings. Colonoscopy and Mammogram.

I am very sick, I am not sure if it is the flu or Sweets! Oh well on we march.

[REVIN4GOD in reply to HairstylistSS]

what topical did they prescribe?

[Hidden in reply to HairstylistSS]

Hi, i was diagnosed about 8 years ago now after 4 years of being unwell and having severe outbreaks of sores, lumps and lesions. i had symptoms of many things such as Lupus, and others but did not fit in any one box, if you read my initial posts as its lengthy it details how SS affects me.

I suffer daily, my body hurts constantly. y muscles, joints and limbs in general, ive always got some sores or nodules mainly hands, knuckles and elbows and knees.I also get lumps which can be 2 - 3 inch across and raised about an inch or so. they come on the soles of feet, scalp and along my forearm, i also get ulcers on my tongue.

I have been prescribed many different medications, including Cyclophosphamide normally a drug used for chemotherapy but it was to tr and suppress my immune system. I have now been on high dose steroids prednisolone between 30mg and 60mgs dependant on how sore and active i am.

Having been on steroids now for nearly 11 years or so has now let me with Type 2 Diabetes but out of all treatments they are the only thing that works enough to allow me to function although when i say function its limited due to severe pain, i take morphine daily also, slow release but still feel the pain. Steroids are the lesser of two evils.

I have been on steroids long enough now that i taper down until i reach a level thats too painful usually at around 15mg - 20 mgs then i have to go back to 30mg and higher dependant on how my body settles.

I have had many complications with my SS, and it is frustrating when all around you dont know much about it, I get frustrated having to explain SS and to make the understand for me the skin side is the lesser, unless i have a violent outbreak then it hospital, wet sheets, sitting on cold floor anything to try and get some relief.

SS as ive learnt affects everyone differently, and a little bit of advice is to keep a diary, take pictures of your sores, lumps or lesions and record how your feeling also.

It helped me and still does to learn about SS and more so MY SS.

I

[happygirlami]

Good morning HairstylistSS,

I am happygirlami, am 57 yo, I have fibromyalgia and hypothyroid. I am a foster parent too!!! I have 3 grandchildren. I'm sorry you are going through all of this...how are you doing now? Hugs to you