Recently Diagnosed, multiple reoccurrence

I am recently diagnosed with Sweet's disorder. I live in the US, but have only found this site as a source of information on the Web. I have had multiple reoccurrences, so many I have lost count. This last one was so bad that it went to a new level, and thankfully the doctor brought in a dermatologist who immediately ordered a biopsy. I am on prednisone and it is taking away the weeping rash, but now it has moved up to my neck/chin, but overall I feel about 60% better than 3 weeks ago. Through the years I have mainly managed this mysterious illness through a strict diet, which really does work for me, but then over time I start eating normal "food" and months later, I get in severe trouble - it is always a rule. The day I got really sick I was handling chemicals (wonderful roundup), and within a few hours I felt extremely weak and ill, and the pre-existing small rash on my chest turned into a major rash of a type that I had never seen before.

I am thankful for the diagnosis, but really a bit concerned that this is just a symptom of a larger more systemic issue. If this is genetic, I would like to learn as much as possible about it, so I can teach my 3 children they are at risk for this condition. Needless to say I have ceased all handling of chemical (as much as possible anyway), but I think I need to do a lot more studying on this to see if any correlation.

Does anyone have success in managing a sweet recurrences through diet, or through medication only?

3 Replies

oldest • newest

Shell567Sweet's Syndrome UK

3 years ago

Hi AmyFT,

I'm sorry to hear that you've been so ill.

1. Genetic Sweet's syndrome (SS) is incredibly rare, but patients can have certain genes that increase their risk of developing it. However, just because you have these genes does not mean that you will. Also, it is incredibly rare for more than one person in the same family to develop SS, and it is incredibly rare in children.

- What kind of condition is Sweet's syndrome? helpforsweetssyndromeuk.wor...

- What causes Sweet's syndrome? helpforsweetssyndromeuk.wor...

2. In regards to diet, SS is not caused by diet and cannot be treated or managed with diet. SS is primarily caused by errors in the innate immune system, and this means that the wrong part of the immune system is involved for diet to play any kind of true role. If diet is affecting you, that could possibly suggest that you have developed your SS secondary to another condition. If diet is causing an underlying condition to flare-up, then that in turn could potentially cause the SS to flare-up.

- A gluten-free diet is not a treatment for Sweet’s syndrome - this post explains why diet cannot cause Sweet's syndrome. helpforsweetssyndromeuk.wor...

3. Can you tell me which chemicals caused your SS to flare-up? Did the chemicals cause an allergic skin reaction? Some patients with SS are hypersensitive to skin damage and irritation, and anything that damages or irritates the skin can cause skin lesions/rash to develop in that area.

- Skin hypersensitivity in Sweet’s syndrome – Koebner phenomenon & pathergy. helpforsweetssyndromeuk.wor...

4. In regards to medication, the length of time you have to take your medication for can vary. Some patients only have to take their medication for several weeks before their condition settles down, while others have to take it for several months or several years. In the majority of SS patients, they no longer have to take medication after their initial flare-up has settled down, but at least a third of patients will have repeat flare-ups and may need additional treatment. Patients who have developed their SS secondary to another condition are more likely to have repeat flare-ups, and the SS often won't settle down until the underlying condition is brought under control. Some patients can also have mild flare-ups that disappear without treatment.

- What is the treatment for Sweet’s syndrome? helpforsweetssyndromeuk.wor...

AmyFT, I know that this is a lot of information to take on-board, but I hope it helps.

Shell (Admin).

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in reply to Shell567

Thanks for the detailed information. I think that for #3 above, my flareup happened a day I was feeling pretty well, and worked outside in yard most of the day. I did weed control, using the weed-killer "roundup". However I was around some plants as well, and started feeling fairly ill, but kept going in my chores. Due to a terrible headache, I quit working outside and noticed when I came in I noticed I had a severe rash on my chest. My skin since that date has been very sensitive to sun, chlorine, heat, clothing, bandaids...you name it. I finally went to cotton clothing and that helps to keep it from getting constantly irritated. I visited my doc today and he may add another round of prednisone since it is not totally gone.

As far a #1 goes, my grandmother (deceased) had a lifelong mysterious illness that my dad says is identical to my illness, thus my interest in this remote possibility.

My doctor has told me to call them as needed, but so far I need to stay the course on the medication he has prescribed. I'll continue my journey to understand this as much as I can. Knowledge is power for me to get well again.

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