What treatment have you received for your SS and has it been effective?

[Shell567]

[Shell567 Administrator Sweet's Syndrome UK]

I was given a combination of prednisolone, doxycycline and dapsone. The medications were effective but I struggled with side-effects.

[Froggie]

prednisolone - this helps somewhat with the mouth ulcers and skin lesions but no help with the various other issues associated with SS such as fatiqueand all over body pain

[jerrybelle]

I was on Prednisone and Dapsone together for 2 years, I was terribly sick taking Prednisone for that long and almost at the 2 year mark I had a heart attack. I tried several times thoughout that period to go off the Prednisone, each time I got down to just a few mgs of Prednisone, my lesions came back with a vengeance. A couple of months out from the 2 years period I successfully stopped the Prednisone and remain on Dapsone to the present. I take 50 mgs daily.

[Shell567 Administrator Sweet's Syndrome UK]

Thanks to everyone for your responses. It seems that most of us struggle with side-effects.

[freckles1]

prednisone unable to taper thus infusions of IGG every 3 weeks were used experimentally in the 90's worked to taper.

Doxycycline ? Minicycline, I think it helped but gave me blue spots on my legs so discontinued. Colchicine did not work,nor did Dapzone (recently tried aczone which caused terrible reaction),SSKI is my savior. The dose max is 10 drops 3X a day. I go up and down every so slow and adjust the SSKI (potassium iodide) to my needs. Presently I take 6 drops 2x a day. Of course the injections of kenalog (I have had as high as 10 but atrophy does happen but skin comes back) I say skip it all except the injections and go with SSKI. I think it has been underestimated in the literature. By the way too much SSKI can cause severe headache due to iodine poisoning. Other than that it has no bad effects (YET) Also important is that I go get injections ASAP and get multiple shots in and around each inflamed area. If it is going to work it will in 24 hours. If not I go back and get more until it's knocked it down. Hope this helps someone.

[Shell567 Administrator Sweet's Syndrome UK]

Hi freckles1, it's good to hear that the SSKI helps. It used to be a first-line treatment after steroids, but doesn't seem to be used that much anymore.

[burlp1401]

I've been on methotrexate for 10 years which has held the sweets back for all that time. 10mg once weekly and monthly blood tests. Professor Peter von den Driesch at the University of Stuttgart recommended the treatment to my team at Southmead Hospital, Bristol, UK and luckily they accepted the recommendation otherwise it would have been cyclosporin (not nice). I have suffered no side effects from the MTX although you have to watch coming into contact with infections and chickenpox virus. Would thoroughly recommend methotrexate.

[Shell567 Administrator Sweet's Syndrome UK]

Thanks for your input, burlp1401 x

[abbyjo]

I just started Kineret. I have only had 2 injections. Where do you think the best place on your body is for the injection site? How long did it take before you started noticing a difference? And we're you still taking prednisone daily? If I have a flare up, it takes at least 40 mg of Prednisone for the Sweet's blisters to disappear. I have been battling Sweet's for over 8 years.

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

Hi abbyjo,

Notsosweets does not have Sweet's syndrome. That was her initial diagnosis, but she was later diagnosed with possible urticarial vasculitis.

Kineret (anakinra) is not a common treatment for SS, but I know that some members of the Sweet's Syndrome UK Facebook group have used it.

Here's some general information about anakinra: dermnetnz.org/treatments/an...

In regards to the injection site, it is probably best to try and avoid areas where your SS is prone to flaring up (not always possible). This is because SS patients can demonstrate Koebner phenomenon which makes them hypersensitive to skin damage. helpforsweetssyndromeuk.wor...

Case-studies show that some SS patients can start to improve within 5 days of being given anakinra, but it can take longer.

Michelle.