Pred or Uceris? Bridge to Entyvio?

I'd just suck it up and do pred. Better chance of working than Uceris.

I second what Gary said, unless you get ruthless symptoms with it, take the pred and get out of the flare soon as. Hope you feel better soon mate.

I'm truly sorry to hear that. I think I would take the Pred as from what I have read it does its job!

One other thing I want to mention, which may or may not interest you, is that I have been taking Nopal recently, even though I am in remission. I take it simply because I have read some good stuff about it on this site with regards to inflammation, and I have been dealing with some awful pain in my coccyx (tip of spine) enough to make me buy a special cushion! However, since taking Nopal I can honestly say that the pain has significantly reduced, I wonder about this a lot, especially as I am only taking a small glass of fresh Nopal once a day...something to think about.

I hope you are not feeling too upset, and start to feel better soon.

Hey Content, sorry I took a bit to get back on. Had a wedding I was committed to yesterday.

I was going to tell you how a few supplements really have helped me, but you mentioned them all and said they didn't work well for you. I always have found L-glutamine works well. From research I found it was best to use on an empty stomach, so that is what I did (20 minutes before or two hours after eating). I did the same with turmeric root... just the plain powder from Whole Foods bulk spice area. I had also found a probiotic (Nexabiotic on Amazon) that has worked better than ones that cost five times (or more) what it does.

I was desperate for help in 2011, and tried many, many things. George's Aloe Vera Juice was one that I noticed a little result from ... but many notice a bigger difference than I. With Aloe Vera juices you have to make sure you get one without a certain ingredient that causes diarrhea. George's doesn't have it.

I tried taking Wild Oregano Oil... from either Herb Pharms or North American Herb and Spice (Mostly the latter). This actually made a significant difference to me at times. I had gotten myself down to a few bm's a day on this for a while, but as stress picked up it didn't last. From what I can tell, I'm gluten intolerant, and since I hadn't figured it out then I'm sure there was not going to be a way to sustain remission with just supplements.

Realistically though... I never pulled myself out of a decently strong flare without prednisone. I can get mucus and a little blood, and the L-glutamine, turmeric, and probiotics help get me better... but not if it's past a tipping point.

You're right with your consensus view on this thread to try prednisone I think. What I've learned after trying supplements and mind/body things for a long time, is that once a flare starts you need the stronger meds. And, if a flare is happening it's probably a sign you need a maintenance medicine if you can find one that you can tolerate.

My GI has told me before that 100 years from now they will probably have IBD classified down into many different classifications. My guess is that you will find some caused by minute infectious agents, some caused by diet, some caused by medications altering the gut environment, some medicines actually causing gut DNA to change, and some just having a change in their gut bacteria due to who knows what. I think this is why something that works for one person may not work for another. As you go along it's good to just see what works (like you've done), and know your body better and better.

As for the present: heating pads, movies, relaxation, spending time with close friends and family, writing out your feelings, staying in touch with your physicians... those are things to help you feel more in control and less anxious.

I think you'll be okay, but just keep posting on here and we'll be your support.

Prednisone tapering is not well understood, even by doctors. The most important part of pred tapering is not the milligrams of the taper but the percentage of the taper. You actually have to be a lot more careful tapering at the lower dosages than at the higher dosages. At the lower dosages you usually have to taper by smaller numbers but that isn't true at the higher dosages. For example, if you taper from 60 down to 40 that is a 33% taper but if you taper down from 10 to 5 it is a 50% taper. So, going from 10 to 5 will be much harder on your system than going from 60 to 40. So, just because you start out at 60mgs doesn't necessarily mean you will be on pred forever compared to starting out at 40mgs.

I have never taken Pred, however I think if I were in your shoes, I would probably want to start off with the higher dose of 60, (to hit it hard initially) I just think that it's far better to start off with a high dose, and then come down to a lower dose, rather than to start off with 40, only to find it's not really working very well, and then having to go to a higher dose, which will subsequently result in the impact of the first dose being weakened. This is how I feel and what I personally would do, and hope this helps.

Maybe I'm being too sensitive but I feel like I am being accused of being that certain people. I'm actually against long term use of pred but in this case where Entyvio might take three months to start working and the choice is pred (which apparently has worked before) or starting Uceris, which has never been taken before and would therefore be a crap shoot, I think the obvious choice is pred. I am against long term use of pred and always will be. I would only take it until the Entyvio kicked in and if it didn't then I would highly recommend tapering off the pred as quickly as possible and go with a different plan. I am against continue use of pred over and over.

I don't dread pred. I actually liked being on it, at least at high doses when all the symptoms went away and I had all the good side-effects from it and few of the bad.

But it doesn't work. It doesn't stop or reduce the underlying disease process, heal mucosal ulcers, or put you into remission (a steroid-induced remission isn't considered remission). It simply suppresses the systemic inflammatory response. It has no local action on your colon in the slightest. This is as true for somebody who responds to Pred as for somebody who doesn't.

Basically, medically speaking, there is no advantage to being on Pred. Docs use it liberally, because it's cheap and because patients (understandably enough) want their symptoms to go away. Other drugs are expensive and take a long time to start working.

The first time I took prednisone it was great (the usual high dose that GI's RX it for) and every time I tapered off of it once I got down to about 6 pills a day I was instructed to start a slower taper of it by decreasing it by halves, it was hard to cut those little suckers in half, evenly to boot lol but I managed taking 5.5 pills/day for a week then 5/day the following week and so on until I was taking half a pill for a week, after about a handful of times being on pred it completely stopped working for me and instead was giving me a lot more the horrible side effects, so weird since the first time on it the only side effect I had was a bit of racing mind, but that didn't interfere with my sleep as I was instructed to take all my pills first thing early am as possible to not interfere with my sleep, this worked very well but I only had the first 2 weeks being on 40mg where I had a ton of energy and it cut me down to 5 BM's/day (at the time I thought that was fantastic cuz I was going a good 20+ times a day during that time of my flare...and no more bleeding or mucous, but once I started to taper after the initial first 2 weeks symptoms rushed back quickly for me. I wasn't able to take any other oral meds due to being allergic or non-responsive to them, it was kinda heart-crushing that any success I had with it was so short-lived but then again at the same time the damage it can do long term was pretty scary so it was probably for the best in that regard anyway.

That was my experience with pred, many moons ago now.

Thanks for the ideas. No cheese unfortunately.
T, I really hope you can hold steady without flaring. I stopped before you. I've been off remi for 14 months, & am hoping you can go longer.
Today I got some of the supplements you suggested. Will introduce 1 at a time I guess.

Got the Pred. Dr said also continue cortenemas up to 3 x day.

Got two sources for liquid protein. I have to eat less food when severely flaring. No shakes had worked before so I had extreme weight loss and muscle wasting during 9 month flare. All shakes had some kind of dairy/lactose which I can't do at all, or they just didn't sit well with me.

Here are two promising leads from HW postings that I bought:

Isopure is a clear liquid protein drink (comes premixed in bottle) - lots of flavors. The protein source is whey isolate, which is said to be tolerable for lactose intolerant. I had the alpine punch - refrigerated. It wasn't a slimy texture like Gatorade (which I don't like). Just clear. I think these could be a great drink providing energy a couple days before colonoscopy if you want to eat lighter, or even while doing colo prep (not the red ones though).

Also got Robb's egg white protein - not sure if that'll be as good, since it is a powder to mix and may taste chalky. Supposed to mix with water. But no bad Ingredients (for me) including no carageenean, which I really can't tolerate (and it's in so many things including many almond milk products & even Turkey slices!). I'll list these in a separate thread if they work well, since I couldn't find many postings about options for those of us who want liquid protein and haven't found anything that's suitable so far.

Feeling more optimistic with all your support!

I am currently on pred and will be starting Entyvio shortly--my GI said she didn't think Uceris would be as effective given my current state. She also said I would start tapering the pred after my first couple loading doses, so I can keep you updated on that once I begin!

ONENANAnana323 said...
JUst now took my first dose of pred...30mg. I've a call into the GI office and want to know when I can lower the dosage. Still on Apriso and will stay on it. Don't know about Entyvio...I'll ask him about it later on.
We're leaving town the end of the week and driving to CO. Staying at a friend's house. Of course, I'll pack all my meds and hope I'm okay during the trip and at their house. I'm a bit nervous. Thank goodness I'm not running to the bathroom often. I can not have any alcohol..that's hard when you're at a party and visiting folks and all are enjoying cocktails!!!
Okay...I am concerned now about the side effects of the pred...
Thanks
NANAONE

Why can't you drink alcohol? I wouldn't even bother with pred if it didn't get me into a state where I felt about 100% normal.