Recently Diagnosed after 6 years!

[Echo2292]

Hey! I was recently diagnosed with Sweet Syndrome after suffering for 6 years as well as problems with my bowel along side it which now they think I may have a bowel disease and currently under investigation. I was prescribed colchicine and that didn’t do anything and then was prescribed prednisolone for 12 week trial starting on 30Mg and reduced amount by 5mg each week and they worked until 5mg but my mood completely changed and was miserable and really struggled. I am now on Dapsone 50mg for 3 months trial and just wanted to know if anyone else is on this and if it helped? Any side effects from it? Thank you

[Shell567 Administrator Sweet's Syndrome UK]

Hi Echo,

Sweet's syndrome (SS) can develop secondary to inflammatory bowel disease - Crohn's disease and ulcerative colitis. On rare occasions, SS can directly affect the bowel.

In my case, dapsone helped, but had to be stopped due to problems with liver function. Some people respond well to dapsone with very few side-effects. If dapsone doesn't work for you, there are other medications that you can try.

Acute Febrile Neutrophilic Dermatosis (Sweet's Syndrome): dermnetnz.org/topics/acute-...

Dapsone: dermnetnz.org/topics/dapsone/

Michelle.

[Echo2292 in reply to Shell567]

Hi Michelle,

Thank you for replying!

Yes they do think this started because of that, I have been poorly for years with my bowel and painful joints/red patches have got worst over the years.

Oh that’s good to know, I need to have bloods done for the next 3 months while on Dapsone.

Thank you!

[Anna2131p]

Hi I was put on dapsone but had a really bad reaction to it and was admitted for 10 days and they stopped it immediately,I also reacted to colchine and could never taper for prednisolone lThey then decided to trial me on anakinra injections that has had significant effect on me but I have systemic sweets auto immune and constantly have raised inflammation markers,they have now added inflammatory bowel disease and due to flare ups recently after a year of 1 anakinra injection nightly they have altered to 2 injections a night and reverted back to monthly appointments with my multi team of specialists I had cut down to 3 monthly.. It can be a long seems uphill battle with this condition and having a team that listen and understand helps as periodic fevers is usually a constant side effect of the sweets..

[Echo2292 in reply to Anna2131p]

Hi there,

So far dapsone has been ok only been on it a week. I have never heard of Anakinra injections, I am currently being tested for a IBD as I have always struggled along side SS and at one point very poorly, in and out of hospital which resulted me losing my job. I finally have a great team at the hospital I am under after years of being passed around as they did not know what was wrong.

[Anna2131p in reply to Echo2292]

I’m the same was told it was al sorts but eventually I saw a private dermatologist who did biopsy and confirmed the sweets. He then due to his inexperience of sweets referred me to Leeds which is 120 mile round trip and I’m under a multi team now of specialists consultants whom research and teach regarding sweets and they have been so good as they discuss the decision of best way to treat individual patients b4 appointment ,I was goin up to twice a month and had done so well I was down to 3 monthly visits on the anakinra injection,however now I’m back to monthly again as the inflammatory bowel disease has been an issue and causing flare ups of the sweets .. It’s hard going at times as it seems slightest thing is always connected due to auto immune system that it makes you think what next.. Gl hopefully dapsone will help you ..

[Echo2292 in reply to Anna2131p]

Yeah I was told multiple things and passed around as know one knew what it was. I will look into anakinra injections as never hear of these and good to know there are other options. Did you have the inflammatory bowel disease before being diagnosed knows sweets syndrome? I hope it does as well!

[bradysimons]

I struggled with prednisone too. Was on 40 but couldn’t get past 25 without flare. I then had to go up to 45. They tried colchicine and no luck there either. I was on prednisone for 3 months. Finally I was given dapsone 50mg and was able to get off steroid completely. IT really worked and hardly any side affects. I’m on 25 and on my way off meds. I’ve had a few brief flare ups on 25 but when I go back up it clears.

[Echo2292 in reply to bradysimons]

I was on Dapsone for about 4 weeks and it worked great but made me soo poorly! My red blood cell count dropped dramatically so Was told to stop taking it. Had a break from medication until they could find something else. I’ve now been on hydroxychloroquine 200mg for 6 months and again has worked a treat with no side effects but slowly the flares are getting more frequent! Back to the hospital this week for a check up.

[CGWestview2018]

Hi Echo. Iv had predisalone and am now on 100mg Dapsone. My bloods are all over . I have anemia now. And although the plaques are less serious the fatigue and laboured breathing is worse. All joints ache too. No cure yet but hopeful as ever. Take care

[Echo2292 in reply to CGWestview2018]

It made me anemic too and had really bad side effects because of it! I’m now on hydroxychloroquine and it’s the best medication I’ve been on. Maybe consider it that it may help. Take care too!