Hi..you need lots of refills....they are/should be tapered to help you find a maintenance dosage...or off if you are able to do it. I have tried in the past and realised that maintenance is much better considering life happens while having UC...it's not a separate issue.
Eventually, you will learn to recognise your own body's schedule.
Mine works like this:
Flare symptoms.....start nightly enemas.
Continue until I'm feeling "normal".....continue for another week.
Taper to every second night. Stay on that schedule for at least 2 weeks...if all is normal, stay on for another few times then taper to every 3 nights.
I've done slow tapers, fast tapers, very slow tapers, very fast tapers...etc. My body rules and that's how it works.
The mistake many make is they hate the rectal meds and view them as a nuisance having to use them or having the only goal to get off them.
The mistake many docs make is the same attitude....only worse because they should know better than to have the paients abruptly stop them.
The next mistake patients make is not recognising that early symptoms should be dealt with asap rather than waiting till they get to a point where they have no choice but to use them....but that's a learning process that took me a few years to figure out.
The next mistake that doctors make is to not allow their patients to regulate the rectal meds on their own and to continue to fill the prescript
ions based on the fact they actually can help.
The worst mistake patients make is that believe they will be addicted to the rectal meds.
The next worst mistake doctors make is that they believe their patients will be addicted to the rectal meds.
Need and addiction are two different things when quality of life and a chronic disease connect.
Anything is better than pred from my perspective......although it's one of the cheapest meds and has its place.....there are both oral and rectal meds available that patients can have at the ready to deal with their flares rather than feeling desperate and fully dependent on the doctors.
Now.....not all can use the first-line meds....but I truly believe that if patients are started out on pred, that somehow sets up a failure for the other meds....my theory based on observation...no proof. But, there's a high patient failure rate of using meds faithfully.
The alternatives scare the heck out of me....so, I'm doing all I can to be a good patient.
Let me tell you that it's paid off for me BIGTIME....I was 34 when diagnosed and coming on 54 this year. I've used the same meds for that long and my flares have never been as bad as the first one.
I truly cannot be the only patient who does this.
Do I like using them? NO....I still grumble like Mr. Bean....but I'm less tolerant of early flare symptoms.
Sorry for the rectal med rant. Please consider using them to the fullest of their potential. The 19+ years past have gone by very quickly.