3 Self-Management Tips for Living with Sweet’s Syndrome

Checked 15/03/18.

Sweet’s syndrome: 3 self-management tips.

1. Take good care of yourself. ❤️

  • Immunosuppressants & infection: prednisone, a steroid medication and immunosuppressant, is the most common form of treatment for Sweet’s syndrome (SS). Immunosuppressants are medications that suppress or ‘dampen down’ the immune system and reduce inflammation in the body. This means that your immune system will be weakened and you’ll be at increased risk of developing infection. If you are taking prednisone or another immunosuppressant, try to take good care of yourself and minimize exposure to infection.

Important! Even if your immune system is suppressed, you’ll need to avoid herbal supplements that have been proven to boost the immune system, i.e. increase immune system activity. Some of these include alfalfa, astraglus, chlorella and echinacea. These supplements can interact with certain medications, and they prevent immunosuppressants from working properly. If you have developed your SS secondary to an autoimmune condition, please be aware of the fact that they can sometimes make autoimmune conditions worse, and if the autoimmune conditions flares up, then so can the SS. Read more here.

  • Hypersensitivity reaction to infection: some, but not most people with SS are hypersensitive to infection, particularly upper respiratory tract infection, e.g. coughs, colds, flu-like illness and flu. This means that if they develop an infection it can trigger their condition. If you are hypersensitive to infection, try to take good care of yourself and if necessary, minimize exposure to infection. Read more here.
  • Fatigue: this is a common symptom of both autoimmune and autoinflammatory conditions, including SS. It occurs as a result of the inflammation in the body that these conditions cause. Symptoms of fatigue can include tiredness and exhaustion (the kind that you can’t ‘shake-off’); ‘fogginess’ or slight dizziness, poor memory and concentration (‘brain-fog’); limb heaviness (every movement can be a real effort); flu-like symptoms. If you are having problems with fatigue, please try to get adequate rest, and don’t be too hard on yourself if you don’t have the energy to do what you normally do.

2. Prevent or minimize skin damage. 🤕

Some, but not most people with SS are hypersensitive to skin damage and this can sometimes cause new skin lesions to develop. This response to skin damage is known as pathergy and is similar to another response called Koebner phenomenon. Read more here.

3. Avoid overexposure to sunlight. 🌞

Overexposure to sunlight or ultraviolet light can sometimes trigger a SS flare-up, but we still aren’t entirely sure why this happens. The most important things to remember are to avoid or minimize the use of sunbeds, protect your skin in the sun and avoid sunburn! Read more here.

Other information.

1. Stress: some people with SS feel that their condition gets worse when they are stressed, and during times of stress, steroid medication sometimes need to be restarted or the dosage increased. Read more here.

2. Hormones: some female members of the Sweet’s Syndrome UK group have stated that their SS starts to get worse around a week before their period. There are some conditions affecting the skin that can get worse around this time due to increased progesterone hormone levels, but no SS research has been conducted to investigate this possibility. However, as SS can be triggered by both pregnancy and the contraceptive pill, a possible hormonal link to SS has been acknowledged, but further research is needed.

Find out more about SS here.     


2012-2018 Sweet’s Syndrome UK


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