Mama2girls- that's more or less how I feel, even with surgery scheduled for soon (I cancelled surgery the other day, then a few days later rescheduled it right back again... That is how jumpy and indecisive I have been- it's not easy when one is never "severe"). In my favor for sticking with it i e going ahead with surgery through thick and thin, has been my low dose pred dependency to avoid too frequent flares, even though I have always been able to knock flares down in days with a modest pred boost. Now uceris has suddenly become my symptomatic wonder drug ever since it came out a few weeks ago- but it is nothing but a bandaid since it still has some systemic effects (just MUCH less than hier dose pred). And even with surgery scheduled, I agonize a little with Vedozinolab (sp.!) "about
" to be approved by the FDA- but it could be well into 2014, who knows. It sounds like it may be the most effective and side effect-free biologic yet since it targets only the gut tissue. However, i have played the low dose pred game seemingly forever hoping for the "next thing just around the corner" and it's time in my case to end my denial... I think I will content myself with knowing that the next years stream of more carefully targetted biologics will offer a backstop for me if, down the line (or even right after my colon is sliced and diced) they find crohns.
Even the new drugs like Vedo, when they come out, wont give everyone a pred free remission (their stats are only 45% at 9 months in their own study- that sounds like it would not aork for my stubborn if mild case) and likely will still mean the occasional flare. I do think that those who manage decent maintenance with 5ASA's will, Barring high grade dysplasia, never have to lose their colons now because of the newer biologics and, in the case of flares, uceris. For those who have never done squat on maintenance meds, like me, though, they are all too little and too late. If your flares are not too frequent, maybe you can hang in a bit with rounds of uceris.
Post Edited (Probiotic) : 3/29/2013 7:39:59 AM (GMT-6)