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Anyone with Sweet Syndrome?

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Rheumatoid Arthritis
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Posted 2/19/2011 1:36 AM (GMT 0)
Hello Everybody!

Is anyone here on the forum with Sweet Syndrome? I know this is pretty rare skin condition and shows along with RA. Mine when active is the nodular lesion type. It showed up only once, was diagnosed and actualy disapeared when I was taking higher doses of Prednisone (which takes care of that condition). However I tappered to 2.5mg of Pred 2 weeks ago and I found the lesion on my elbow again... I have doc appointment on Tuesday and probably they will increase steroids again.. I was so happy to just get rid of this medication at all. I am doing pretty good on Humira and Plaquenil. Humira suppose to help with "sweets" too.

Just wondering how your doctor is treating your Sweet Syndrom - is anybody here???

When I went to deramtologist they just treated me like some unusual phenomenon... They didn't know what it is at first as I had the lesions on my elbows, in my nose, on my legs and knuckle. They gave me some printouts with (awful) pictures to read - that it maybe some VERY VERY RARE skin condition They scared me so much back then... After biopsy it turned out it is something completly different. Why to scare people when you are not sure what is it?

 

Posted 6/2/2011 2:05 PM (GMT 0)
Hello Bstrong,

My wife has RA and was recently diagnosed with Sweet Syndrome by a Dermatologist (biopsy).  She was prescribed prednisone which supressed the (SS) quickly.  However, recently she just stopped taking a dose of prednisone prescribed by her rheumatologist and the SS bumps are coming back.  She doesn't have the big "scary" legions that I have seen in brochures and websites etc.  They are more like small bumps and in the same areas that you describe and her hips and legs.  I was curious, after your biopsy what was your condition diagnosed by your dermatologist?  Also my wife has been taking Simponi for about 2 months now....doesnt seem to be working to well for her RA.  Anyone else out there with RA and SS?  Please help!

Posted 6/3/2011 12:36 AM (GMT 0)
Wow, I've never heard of it. I did have a very unusual rash years ago, which some of my doctors thought was an atypical psoriasis. Do the lesions appear pustular? Just wondering. That's what mine were like...
Posted 6/3/2011 1:07 AM (GMT 0)
I have never heard of Sweet syndrome either. Do these bumps itch? I have some bumps on my elbows and arms that are itching. Just little bumps...nothing red or anything. Thanks for this info. I will do some research.
Posted 6/3/2011 4:34 AM (GMT 0)
Yes...Sweet Syndrome is quite rare.

My wife was diognosed with it a few months ago by her Dermatologist and she was prescibed the predinisone to clear it up....which worked well.  Recently we thought it was coming back however, after a dermatologist visit it was determined that it was just folliculitis.....basically bacterial infected pores (small bumps).  Mainly on her legs, probably from shaving.  The dermatologist said that the folliculitis likely occured becasuse of her shaving and her surpressed imune system (from the Simponi for RA).  She has been taking Simponi for 2 months now and we still haven't seen much improvement.  about to give her the third shot in a few days.....hopefully it works soon!  If not, we may go back to Embrel.  Also we just learned that she is anemic so now she is taking Iron and Vitamin C daily, which is supposed to improve her extreme fatigue.  We will see!   My wife and I are fairly new in this endeavor of managing RA and associated medications, emotions, side-effects, etc....  If anyone would like to post helpful links, ideas, advice, other forums or communities to seek help and support I would sincerely appreciate it.  take care everyone! 

Posted 8/31/2012 1:12 PM (GMT 0)
My dad has Sweet's Syndrome. I would love more information about treatment options, and different doctors who specialize in it.
Posted 8/31/2012 2:23 PM (GMT 0)
to RA-SS-help,
get in to a good vitamin shop and get a plant based Iron supplement, as regular Iron supplements can cause constipation, I use a
plant based Iron supplement...worth a look into for your wife. Maybe ask her doctor check her B-12's level, low b-12 can add to fatigue.
Also if your wife is taking methotrexate that can also add to fatigue and she'll need her doctor to prescribe folic acid....
Bstrong, wish I could help you out with advise about "Sweet Syndrome", Hope it gets better for you and many Prayers to you hun, and maybe
once you know more on your illness you could educate us on it....many well wishes....
Posted 11/29/2012 9:50 PM (GMT 0)
I see it's been many years since you all have logged into this forum. There's a Sweet's Syndrome support group on Facebook you can join. You can get more information from the articles posted there plus ask any question you want and the members jump on it! I have a blog, too, if you are not sure if what you're experiencing is Sweet's. notsosweets.blogspot.com

Plus, there's another site, Sweet Kim, that has a lot of information and active forum: www.sweets-syndrome.com

Please help share these sites and spread the word about Sweet's! Too many people suffer for many years because even the doctors haven't heard about it. We're really pushing for awareness. We also have Sweet's shirts, which you can find on the FB support site.
Posted 1/22/2013 3:40 AM (GMT 0)
I was recently diagnosed w SS after 6 weeks and 2 biopsies later. Low doses of steroids failed. It was until prednisone was increased to 60mg daily did I notice immediate response to lesions and arthralgias. I still don't know what caused it/causing it but so far all my blood work has been negative. Ive always been healthy otherwise and really hoping this is a short course illness.
Posted 1/28/2013 2:51 PM (GMT 0)
Hi, my dad was diagnosed with Sweets in Jan of 2011 and three hospital stays later and by April 20 2011, he was gone. His doctor did not know how treat him and put him on very high doses of steroids. He was also on blood thinners for his heart valve condition which his doc was very aware of. We were in the process of trying to find a doc that would treat him. Due to Sweets being so rare we were having a hard time finding a doc to treat him. By April he started bleeding internally and by the time we found out about the bleeding, it was too late. He was tested in the beginning for some cancers but those came negative. His doc was suppose to do more test did but he never did; one of the reasons we were looking for a new doc. After he passed, he found out he had thyroid cancer through the autopsy. Please if you have Sweets, please stay on your doctor to keep testing and keep a VERY close on your blood levels as being on steroids at a high dose for long periods of time can cause internal bleeding. We did not know this. Daddy did keep an eye on his blood levels being tested all time due to blood thinners. But when he was in the hospital the last time, the nurses and doctor did not keep an eye on it and he stated bleeding and it was too late by the time they found it.
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