As with any medical condition, the treatment and medications required, vary depending on the severity of the condition. For the majority of the members of the group the initial expression of the condition was the most severe requiring the greatest doses of medication and unfortunately, in certain cases, extended periods of hospitalisation for treatment of the blister wounds and pain management. Others have been more fortunate and their outbreaks have not been severe or they have been able to tend to the wounds at home. Yet others are finding that conventional medicine has been of little help and that to a much greater degree the only thing that has really helped has been a body, mind and spirit program.

If the expression can be brought under control and subseqeuntly kept under long term control by means of the usual medications (more on those further down), subsequent flare ups tend to be less severe partly due to a combination of awareness of the condition and the fact that the medications are in the body in the first place.

Flare ups from remission tend to be very sudden and so preventing them or minimising their impact requires a keen awareness of even the smallest of signals that something is out of the ordinary and could be EBA related. For a significant number of us extreme stress or tiredeness appear to be a catalyst thus further highlighting the need for an approach to daily life that is compatible with management of the condition, alongside any medications that might be found to be effective.

The staple of western medications for the treatment of EBA is well documented by Chan and Woodley. In summary, Prednisolone/Prednisone will usually be the first medication to be introduced even before a diagnosis has been made as it is widely used to treat the family of condition to which EBA belongs. An Immunosuppressive agent such as Azathioprine (Imuran) seems to be extremely common and effective amongst the members of the group. For a smaller number, Dapsone (Avlosuflon) has also been found to be extremely effective in controlling the blistering. Rituximab (Rituxan) has been tried by at least one member of the group but was not found to be effective. For those unresponsive to these medications Intravenous immunoglobulin (IVIG) is another viable consideration.

Management of blistering

Lacking from Chan and Woodley's otherwise comprehensive overview of the medications used to treat the condition is the kind of regime that one might expect to have to go through during the blistering phase. The blisters associated with the condition are filled with pus and so on a daily basis (sometimes twice daily) the blisters need to be burst using a sterile needle in order to release the pus. This tends to be followed by soaking those areas that can be soaked in Potassium Permangenate for a certain amount of time. Steroid creams such as Dermovate and Trimovate are usually then applied, on top of that Liquid Paraffin 50% in White Soft Paraffin (ak.a. 50-50) can be applied before finally bandaging the blistered areas to protect them and offer a small measure of comfort. This is a a long and tedious process especially if you are severely restricted in your movements to start off with due to the blistering! The combination of the blistering itself, the texture of the applied creams and the bandaging of the affected areas can leave the patient completely immobile.

Pain management

Depending on the severity of the condition the pain associated with it can also be quite extreme. The discomfort associated with minor flare ups can be managed with paracetamol based pain killer while unfortunately during a full blown expression even a combination of paracetamol based pain killers, Gabapentin, Oramorph and slow release morphine (MST) has proved to be ineffective in dulling the pain.

Medications used for side effect management

Certain of the side effects can only be aleviated by reductions in the medications that cause them and that can only be done on a reactive rather than a proactive basis. Side effects of that kind, as experienced by the members of the group, are discussed further in Tratment & Medication  - Side effects. There are however certain things that can be taken proactively. These include:

1. Lanzoprazole and Cimetidine/Famotidine to treat/prevent stomach iritation due to the anti-inflammatory drugs,
2. Calcium and Vitamin D supplements for reducing steroid-induced osteoporosis,
3. Alendronic acid (Fosamax) for reducing steroid-induced osteoporosis.