MRB - Your post is very interesting. I see myself heading towards the same situation as your husband. I have been on pred for 4 years now, and am steroid dependent. I am down to 7.5mg a day now but I cant get off it. I end up in a serious flare whenever I try. So, for me, its not so much that I am anxious about getting off it, but the fact that I cannot "survive" without it.
I dont know whats worse. Repeated serious flares that land me in hospital or the terrible side effects of long-term steroid use. They seem to be both as bad as each other.
Is your husband reliant on the pred due to his UC always flaring without it or is it mainly psycholigical?
I suggest you get him to use the steroid enemas. I am using predfoam every night to try and get my pred dose down. But, its so hard.
Also, if your husband does attempt to taper his pred. I would definately go down no quicker than 1mg a MONTH. After 12 years, it will be extremely difficult to taper off it. Once I got to 15mg I tapered no faster than 1mg a month and even that was horrendous.
I wish you both the best of luck
Back on Pred - 8mg - Steroid Dependent :-(
VSL #3 with Activia Yoghurt
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks (Stopped working)
Aloe Vera Lily of the Desert Juice Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg