Crohns and sweets syndrome

[my little penguin]

Ds was dx with possible sweets syndrome back in November 2015
Lesions went away
For a few weeks but have been coming back
And now are appearing every week with flu like symptoms
Only to disappear and re appear the next week
Ds had a biopsy of the skin lesion last week and it was consistent with sweets syndrome

Has anyone else had sweets syndrome with crohns ?
How was it treated and did it come back ?


Thanks

 

[my little penguin]

There isn't anyone here who had both crohns and an EIM of sweet syndrome ?

 

[xmdmom]

You wrote "And now are appearing every week with flu like symptoms
Only to disappear and re appear the next week"

Is there any correlation between the Sweet's symptoms and humira injection or is this typical of Sweet's syndrome? (There is a case report of Sweet's following humira.)

 

[my little penguin]

No correlation
He has been on humira for four years
He can get the shot and the spots show up three days later sometimes or the day before the shot etc....
It varies
The spots start sometimes every week but also sometimes in 10 days or 14 days etc..,
Just a higher frequency than before
Sweets tends to mirror Ibd flares 80% of the time
And is reoccurring 30% of the time
Only 40 cases published of sweets and crohns
And only 80 cases published of pediatric sweets ( regardless of the why )

So no real answers
The specialists are increasing his methotrexate to try and calm the sweets down

 

[trac284]

I was diagnosed with Crohn's in 2011. I have been on Humira since 2012. I started breaking out with huge skin lesions in November, my Dr had no clue what it was and gave me prednisone and sent me on my way. I broke out again in Febuary and went to a Dermatologist and they did a byopsy and it came back as Sweet's syndrome. It has come back twice since then. I am waiting on test results to come back so they can hopefully put me on dapsone. Sweet's is extremely painful and itchy, not to mention the muscle weakness the sinus infections that seem to go with it. It is embarrassing to go out in shorts or short sleeves while in a break out. No one seems to understand the pain. This time around I am also having problems with my mouth, my gums have swollen to the point that they have split. It hurts to eat. I am so tired of always being in pain. I have Crohn's, fibromyalgia, arthritis, bursitis, and now Sweet's. It seems like I am always sick.

 

[my little penguin]

Hope the dapsone works for you
Ds tried colchine which stopped the spots but started crohns so he had to stop it
His dermo won't give dapsone orally to kids
Only topical
Pred worked well too but kids and long term
Steriods not the best idea
He basically is constantly breaking out every other week
His at least are mostly hidden on his chest and back
I will say the decreased in size once his humira was increased in frequency in Sept
Then the docs tried increasing Mtx not sure that did anything
Finally due to his worsening arthritis his humira was increased to every 5 days
So hopefully the spots will stop soon
Let me know if it works

 

[DustyKat]

PM’d you mlp.