Is this as good as it gets without pred?

Short backstory, I have been on pred for about 2 years on various mg’s and tried several times to get off. I have been dropping down by 1mg every week in hope that decreasing really slow would help me finally kick it.

I am now on 2mg and have been here for 6 weeks, my bowl movement are now really loose and I’m a bit scared to drop down to 1mg. I don’t think I’m flaring because im going to toilet 1-3 times a day I have no other symptoms.

Will I have good bowl movements without being on pred or is this as good as it gets?

200mg azathioprine (daily)
3g salofalk granules mesalazine (daily)
mesalzine enema (3-4 a week)
calcium tablets (2 a day)
alendronic acid (weekly)
humira (every 2 weeks)

Post Edited (Dan Embrey) : 3/4/2019 3:55:02 AM (GMT-7)

It's unlikely that 1 or 2 mgs of pred is actually doing anything at all (our bodies manufacture about 12mgs equivalent of pred, cortisol, on a daily basis). I'd try not and worry unless blood/urgency/increased frequency have returned. I'd stay cautiously-optimistic for 2-weeks post-pred and see where you are at.

If you flare again shortly after ceasing pred, then you need stronger maintenance meds on an ongoing basis to kick the pred for good. All UC meds are safer than pred is, so even thiopurines or biologics are much, much safer then pred.

Hi ipoop i heard this a lot from my doctors but the truth is every time i dropped the dose by even 1/4 tablet (1.25 mg) i had rebound symptoms for a few weeks. Then as soon as it settled down i would have to decrease the dose and go through the same thing again. It was a horrible time but so relieved not to be on pred any more.

The main point here is that pred does not heal, but allows other meds/therapies to heal and induce/maintain remission. The message here is likely that you do not have sufficient other meds/therapies.

A smaller concern is the sensitivity you have to even very small dosage changes at low levels. Once under 5-10mg, the taper is about managing withdrawal and not so much about preventing flares. At low doses the pres is usually no longer doing much to suppress the inflammation. The taper is about letting your endocrine system wake up. It is possible that some anxiety over the taper is helping to increase symptoms.

good luck

One strategy I used was that I lowered the dose to enough to give me some control but so that I could try different lifestyle changes. With pred at higher doses it's impossible to tell if the changes you're making are working or not. You might thinking something works and then you do a pred taper and suddenly your body rejects whatever you're trying.

Yes, it's a risk to knowingly let inflammation increase again, but it's a complicated disease and if you really want to get to the root cause you have to try different things. My UC is refractory, no drugs work and pred sort of works. I had to change my entire life in order to get better or I'd lose my bowel.

Dan Embrey said...

Top lifestyle changes ?

1. Finding an IBD specialist that I trust, and following his advice.

2. Surrender to my body, in the sense of accepting that UC does the bleep what it wants to do and even with diet and lifestyle modifications I cannot (generally) control it. Life has been a lot less stressful since I took this approach. The worst case scenario is that I will need surgery one day and the vast majority of people who do that report that life is much better than living with UC.

#1 was as difficult as #2 (this is my 4th GI and i will be beyond gutted when he retires)