[evansmom]

My son Evan would turn very red even during a lukewarm shower when he was on cyclosporin, happened with every shower and caused some transient tingling sensations also.

With your son's extreme side effects including vision problems, I'd be most concerned about his cyclosporin level in his blood. It almost sounds like it may be too high. How often is his level checked? No matter where the person resides, it seems to me that they still need to have their cyclosporin levels monitored routinely. Too low and the AA flares, too high and the body gets injured, namely the kidneys.

An abrupt discontinuation of cyclosporin should be avoided, especially if one has had a favourable response. Weaning slowly allows the person's immune cells to gradually become re-introduced to the stem cells they were attacking before, and the hope is that they can cohabitate nicely again. A sudden influx of unrestrained lymphocytes can put a person back to square one again.