Posted 3/21/2020 4:44 PM (GMT -6)
I am currently in my second proctitis flare ugh. It took me 2 years to get in remission on the last one after trial and error with every enema under the sun. Betnesol enemas ( 2 weeks) and Oral mezavant ( 2 twice daily) eventually did the trick. I kept taking the Oral mezavant daily since then.
So for this flare my doc put me on Betnesol for 2 weeks. The betnesol took longer to take effect it seems. After one week I saw my symptoms finally decrease, so I only had just under a week with no symptoms or minimal. At the end of the 2 weeks my doc wanted to switch me to suppositories vs continuing the Betnesol. I was very hesitant as my previous 2 year battle almost every drug made me worse. I humored her and tried the suppository and after ONE night of the suppository my symptoms were full blown back and worse ( loads of mucous and pain)... never again, so frustrating. So now the past 2 weeks of progress with Betnesol have been wiped.
I am back on the Betnesol for 2 weeks... but I'm thinking is 2 weeks enough? What is everyone's experience with Betnesol? At what point or for how long do you experience zero symptoms to which it makes sense to stop? Did you have to taper if you take it more than two weeks? My doc seems pretty clueless on all this so I'm hoping some of you have experience and I would greatly appreciate your thoughts. My biggest concern is I'm not on it long enough and have to keep going on and off.
Thanks for reading xx