Stelara here I come!

Infusion center called today. All set. Stelara infusion appointment Tuesday the 17th. So my Inflectra infusion appointment on the 23rd has been cancelled.

New GI is impressive with these prior authorization insurance approvals. Second time he’s got me hooked up with a new biologic approval in less than two weeks.
As opposed to old GI who couldn’t get a thing approved for months! Sheesh. Shame on me for sticking with him for so long. Oh well. Lesson learned.

New GI said to stay on the 9 mg of budesonide each day, until I enter the maintenance phase of Stelara, which I believe would be 8 weeks after January 17th’s infusion. Then he said you can start to taper down off the budesonide at that time, once you start the injections at home.

Stelara here I come.

Currently I’m going 3 or 4 times a day (low urgency. Can hold it until I get to a toilet), from morning alarm clock wake up, to bedtime. Usually these are loose or watery.
Then I’m averaging 2 in the night, where I have to get up out of sleeping, and go, and then fortunately I can go right back to sleep…most of these “in the night movements” are more chunky or even stools.

He wants me to bring in a sample to the lab in his office, early next week to check for CDiff. He says he doubts I have that but he said it would be foolish not to check that at this point since I have never had that checked. Ever.
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Post Edited (Rusty Barr) : 1/13/2023 2:32:09 PM (GMT-8)

That's good news! Hopefully this does the trick.

I am surprised that none of your docs ever did stool tests. That's usually the first thing my docs always asked for to make sure it wasn't some sort of pathogen rather than a flare. After all this time, I doubt it's c-diff because seems like you would be a whole lot sicker.

Had my last infusion of Inflectra. 10 mg. On Dec 5th. It’s been 6+ weeks ago.
I’m scheduled to get my first Stelara infusion tomorrow morning the 17th.

No issues with that, correct?

Rusty,

Checking in on you. I hope everything went well!

Clo

Make sure Express scripts has your copay card info. so they don't bill you full price (you may have already done this). Glad it went well!

Had infusion Tuesday morning. It’s now Thursday morning. I know it’s early.

Not really seeing any improvement yet. Curious as to when most people start to see some benefit?

Urgency is low. Thank God. I’m an outside salesman, so low urgency is huge for me, allowing me to get to a gas station, or hotel or restaurant….but frequency is currently what I would call medium high for me. Yesterday was 5 times spread out between waking up in the morning and going to bed at night. Then an additional 2 times in the night where I get up, go quick, then go back to bed and go to sleep.

Almost all the movements are small, chunky and loose. No blood. No mucus.

That’s the update. I’m praying the drug kicks in soon and I see improvement.

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Post Edited (Rusty Barr) : 1/19/2023 4:49:22 AM (GMT-8)

I’m seeing some slight improvement the past couple of days. Nothing major. But praying it continues.

Hope the improvement continues. Slow and steady can be frustrating especially after everything you have been going through.

Tomorrow will be a week since my infusion of Stelara. Got some slight improvement after a couple of days after the infusion …and it’s kind of holding steady there right now.

1 movement in the middle of the night. Usually good looking stools.

Then 3 movements within about 2 hours upon waking up in the mornings. The first one of these is usually stools, the second one mush and the 3rd one more loose and watery.
(Not sure if I should count this as 1 movement in 3 parts or not).

Then 1 more movement in the afternoon or evening. That’s usually mush.

I’m still taking the 9 mg of budesonide every morning. Had my initial infusion of Stelara on 1/17/23.

Just wanted to post a praise report. Yesterday was the best day I have had in a long long time. Only up once in the night. Went several times upon waking up. Then only once yesterday afternoon. No urgency issues at all. All movements kind of chunky and loose, some small stools mixed in.

I know it’s only one day. And I realize the budesonide could be having a major impact. New GI said to stay on the full 9 mg of budesonide a day until after I start the Stelara maintenance shot, then start a taper, if things are still going well.

But anyway. Wanted to post this. Praying this type of day becomes the norm. Or things get even better.

Thankful for all who have encouraged me throughout my journey.

Hoping this is the start of a new trend for you!

UCyousee said...
Good luck Rusty Barr! I hope you have the same success with Stelara that I've had. I've been in remission for about 17 months now, and long may it last!

It means I've been able to live life to the full for a while.

How long were you on the Stelara until you were in remission? Since you started it, did you take anything in addition to it? …and can you describe in detail what remission means for you? I’ve read many different definitions here of remission. Thanks so much.

I got the initial dose infusion on 1/17/23. Right now I’m happy with where I am at, but I know I could see even more improvement.

My current daily pattern is 1 movement urge, waking me up in the middle of the night, typically around 1 am, which is usually stools….then I go right back to bed and right back to sleep. Then a movement upon waking up first thing in the morning, also stools. Then another movement or 2 within an hour or two after that, that is usually chunky or loose or watery. Then another movement later in the late afternoon or the early evening and this is usually chunky or mush.

That’s still a total of 4 or 5 overall each day, but, The fantastic thing is urgency is almost zero…meaning I can hold it when I feel the urge and I’m not sprinting to a toilet. That is absolutely huge for me.

Post Edited (Rusty Barr) : 1/28/2023 2:31:03 PM (GMT-8)

It sounds like the number of BMs is about the same, but great that urgency is gone! That's a good sign. Are you still taking budensoside? You will know if Stelera is working when you can get off of it without symptoms increasing. From what you said, you probably shouldn't think about tapering yet.