Thanks Jill for taking the time to email me. My sted dad did have a turn on taking dex in January and he felt really unwell and very down so he stopped taking the third dose and when he went in Jan told doc what he had done and at this point his protein was 21. They halved his dose and he started them again and seemed ok and when we went last week the protein had gone down to 14 so seemed to be doing ok and that’s when his consultant said if we doing well with dex just think how well we might do on the ctd combined therapy. A few of the family like me think it’s worth pursuing but dad and a few others are thinking with the dex pushing protein levels down and he is feeling well and got good quality of life then why try extra drugs that may make him I’ll and unable to do things though consultant said he may not get many or any side effects. I shall talk to dad again and see what he wants to do. It’s so difficult as we just want the best for him. Like so many others it’s a written disease and unfortunately no cure. Thanks again and best wishes to you and your mum.
Kind regards Roo
