My father is newly diagnosed with CSS. He spent 3 weeks in hospital and has just had his third cyclo. Hes on 40mg pred from 80mg originally. Last week he had his once weekly alendronic acid and had a bad migraine with vomiting. Same again today but has vomited some fresh blood. His blood inflammatory markers have risen again.
The rash on his legs still flares on odd days but is better than it was and the swelling on his feet and ankles has improved. Very very tired and is feeling the side effects of cyclo. He also has blood +3 and protein in his urine.
We are so worried. Shouldn't things be improving by now. Does dads case sound familiar to anyone.
Any help or advice would be appreciated.