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Ulcerative Colitis
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Posted 8/18/2023 7:50 PM (GMT -8)
Yes I started tapering my prednisone with my first infusion. But I believe I only went down 5 mg every week or maybe even two weeks. I had lost so much weight and body mass while ill that I needed to gain weight so don’t recall if I was always hungry. I do remember how irritable I was and not being able to sleep well. HAng in there! It’s very hard to be patient when you are so desperate to get well and live a normal life again! I remember those feelings all too well.
Posted 8/19/2023 4:27 AM (GMT -8)
I don't pay attention to size of stools. They don't look like my pre-UC days because of scar tissue from earlier flares. When I don't have any urgency or pain, when bowel movements don't control my life, then life is good. I often poop 3-4 x a day in remission. Have been scoped to confirm remission, most recently a month ago and that was in a period where i sometimes went 6x a day. I eat a lot of fibre...
Posted 8/19/2023 5:28 AM (GMT -8)
Wayne you are experiencing the usual side effects of prednisone & for many of us they are not pleasant. It seemed like all I wanted to do was eat, weight gain from hell & a temper to match.

Many of us has suggested fiber to help bulk up your stools, have you done this?

When you hit the 20mg taper pay attention to see if the bathroom trips increase again. I say this because so many have to play with the dosage.
Posted 8/19/2023 3:25 PM (GMT -8)
I will keep tabs when I taper down to 20mg........I have increased my fiber too. They put me on Xeljanz 10mg. 2x a day on August 7th. They also started me out at 40mg. Pred. on Aug. 1st while in the hospital then they decided to up it to 60mg. on Aug.7 because I was not responding well due to explosive urges still happening. I was then increased to 60mg. for next 10 days then taper to 50mg. for a week, then I'll taper again come the 24th to 40mg......hope that is not tapering down too fast for healing process??? Is this too fast of a taper or sound about right? I don't see my GI again for follow-up counsel until September 26, and I will actually be done with tapering before then.

Post Edited (WayneTX) : 8/19/2023 4:10:31 PM (GMT-8)

Posted 8/20/2023 9:04 AM (GMT -8)
Personally, I would taper 5 mg a week. You can try the 10 and will most likely see a change in a day or two. If you do, bump it back up 5 mg and from there taper in 5 mg increments. Xeljanz can work quite quickly for some, so you can play around with the taper to see if healing is taking place from the xeljanz. Sometimes with prednisone if you’ve been on it for a long while as you have, it’s a matter of withdrawal from it than healing, and in those cases, a slower taper works best. I know some here even tapered down 2.5 mg a step. I think I did towards the end. Again you can try a taper and then bump back up immediately if you backslide.
Posted 8/20/2023 9:18 AM (GMT -8)
If xeljanz is working for you it will heal you...regardless of whether that happens fast or slowly. Prednisone is not healing you, it's giving you a manageable quality of life. As soon as I understood that prednisone doesn't get me in remission (and can even inhibit the healing process) I always took the lowest possible dose needed to keep me functioning in daily life. Dropping 10mg a week is quite fast, if you're scared of that then it's probably fine to drop 5mg. At the same time, tapers usually only get tough when you're between 10-20 mg. At high doses 10mg/week is probably fine....I would personally avoid yo-yo-ing up and down with the doses as that probably messes more with your adrenal system.
Posted 8/20/2023 8:30 PM (GMT -8)
thanks for the Prednisone advice learning curve.......I am going to stay with the 5mg. weekly drop just as a precaution. I believe Xeljanz is working but still seeing a mixed bag of bowel movements so far. At least I am functioning better now and can make it to the nearest toilet in plenty of time.
Posted 8/21/2023 9:56 AM (GMT -8)
I know it’s frustrating. And hard to tell if it’s the prednisone or xeljanz helping at this point. The kicker will be when you drop to 20 mg. That seems to be the tipping point for those of us who were prednisone dependent.
Posted 8/21/2023 6:06 PM (GMT -8)
soon to find out.....will be down to 20mg in two weeks.......still loose every day so no idea which is helping or not helping? At least Xeljanz I assume is doing something positive as I am able to get to the toilet on time now and previously on Pred. that was not the case as Humira and Renflex (Remicade) did not work for me.
Posted 8/26/2023 10:26 AM (GMT -8)
Just curious......how does one know for sure when there in full remission without the benefit of a colonoscopy to back it up? What signs do you look for to know you've achieved full remission without totally knowing for sure backed up by a colonoscopy?

Post Edited (WayneTX) : 8/26/2023 11:05:28 AM (GMT-8)

Posted 8/26/2023 12:35 PM (GMT -8)
It differs for people.

I think some people think if you are really in remission you need a colonoscopy confirmation. (I'm sure there might be others that disagree.) I say that because I've been able to eat practically anything, had the urgency, heat intolerance and most of my extra intestinal symptoms almost disappear... I knew I was in remission. I felt pretty good. Yet when the colonoscopy was done I had ulcers throughout my colon. I've also had it go the other way... I was nauseated, little to no control on urgency and making it to the bathroom, extra intestinal symptoms were all occuring... And my scope showed that I was good. Go figure. So I'm still wondering how Ill know if I'm in remission.

So....I've gotten to the point of .. if I'm only on my regular meds and supplements, not nauseous, can eat pretty much what I want, there's no pain, cramping, blood, diarrhea, vomiting, heat intolerance and extra intestinal symptoms are tolerable .. I'm claiming remission.

It will be interesting to read others experiences..

Clo
Posted 8/26/2023 12:54 PM (GMT -8)
You don't know for sure without having a colonoscopy.

But if you're doing regular fecal calprotectin tests that can be a good indication (this works really well for me but it does not work for everyone).

There should be no blood or urgency in remission.
Posted 8/26/2023 7:02 PM (GMT -8)
makes sense..........finally seeing some normal stools now the past few days.....but still mush now and then. I have not heard of fecal calprotectin tests. I have provided stools samples several times to the VA.....wondering if that the same thing? That's how they found out I had rotavirus as well. Overall, I think I'm getting better.

Post Edited (WayneTX) : 8/26/2023 11:11:17 PM (GMT-8)

Posted 8/29/2023 8:01 PM (GMT -8)
Wayne,

The stool samples testing may not have been done for calprotectin, you'll probably have to call and ask.. For me.... Those numbers don't work as well as with others. I've been in a horrible flare with several ulcers throughout my colon and my numbers just barely moved up and they did not exceed the "normal" range.... But I've had other times when my numbers were thru the roof and I was ok... (we did scopes to make sure) So it can be abit tricky. Just be aware of your labs, what they mean and how you are doing. It should give you a pattern of behavior for you so you can "sort of" gage how you are doing in the future.

How are you feeling? Are things settling down?

Clo
Posted 8/29/2023 9:53 PM (GMT -8)
I have had normal stools for the past few days..........sore throat side effect has persistent now for past 2 weeks plus 12 lb. weight gain.. I also hate how steroids make me feel edgy but got another two weeks to go. Med appears to be working so far. Hoping and praying.
Posted 8/30/2023 7:12 AM (GMT -8)
Always good to hear improvement. Just a thought, have you tried any honey for the throat?

The weight gain is temporary, keep this in mind, same with being on edge. Remission is the goal, once you are feeling back to your usual self you will lose the weight.

I live in Tx too, I am enjoying the cool off of 100 degree temps, lol.
Posted 9/1/2023 1:02 PM (GMT -8)
where do you live in Texas? I am in a suburb of Dallas - Plano. I have managed to lose a few pounds but it is still tough to not snack. I got OTC Cepacol yesterday and it has helped some on my throat. I have improved since my 10-day hospital stay......keeps me motivated I may have finally been given a med that works......Humira and Remicade did not so I suffered over those 4 months.
Posted 9/1/2023 3:01 PM (GMT -8)
It's a small world.....

Seems at least 3 of us are from Texas...

Clo
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