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Does Stelara work better the longer you are on it?

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Posted 4/6/2023 1:17 PM (GMT 0)
I started Stelara on 1/17/23. I have had one 8 week injection.

I seem to remember someone telling me or reading it somewhere that the longer you are on Stelara the better it will work.

Is this tue? If yes, how can that be?
Posted 4/6/2023 3:25 PM (GMT 0)
Rusty, if improvement happens after the loading dose the maintenance doses will continue to work towards healing & remission. I think you had said previously your urgency was gone & you were sleeping through the night without getting up in the middle of the night after adjusting your eating schedule. It takes time with any medication to work, you are still early in the process.

If you feel like you are stuck & not making improvement reach out to your dr. on your patient portal or a phone call.
Posted 4/6/2023 5:37 PM (GMT 0)
It's not so much that it works better the longer you are on it, but rather it is that it takes time for your body to heal so the longer you are on it the better you should feel. The same is true for all of the treatments and meds. Once you have reached remission continue to stay on what works for you. I have seen many people stop the treatment once they are in remission and a few months later they are back to flaring.

Are you still feeling better? Have you been able to get off budenoside without symptoms getting worse?
Posted 4/6/2023 7:20 PM (GMT 0)
Hi. Thanks. So. Yeah. Since starting Stelara I have had the best three months by a long shot in probably 2 plus years.

Had the infusion. Then, after my first injection, I had a follow up appointment with my new GI. Told him how great Stelara was. Only going in the morning. Stools of various shapes and sizes. No urgency at all. Not going any other time. Just mornings before I leave for work. 2 or 3 movements. No big deal.

So. Not surprisingly. He said “great. Let’s get off the budesonide (Uceris generic). You’ve been on that long enough”.
“You’ve been on that about 8 months. I know you sort of came off it a few times, but you’ve been on it pretty much 8 months. I’m not thrilled about anyone being on any type of steroid that long”.

“Drop down to 6 mg a day from 9 mg a day….do that for 10 days. Then drop down to 3 mg a day for 10 days. Then you’re off that”

I said “well, what happens if things start to slide? I’m loving life right now”.

“It doesn’t matter. Let’s get off the budesonide and we will evaluate next time I see you.”

I’m scheduled for an appointment in early May I think.

-

Well. No problems at all dropping to 6 mg a day for 10 days. Then about day 5 of 10 of the 3 mg part of the taper, I started to noticing things getting loose a bit. Nothing crazy. But of course. I’m thinking. “Uh oh”.

Well, Monday was my last day of 3 mg. And the past two days (Wednesday and Thursday) I’ve had a several loose movements late afternoon/early evening. In addition to the looser morning movements before work. Mild urgency. Not the end of the world. But my guess is, the budesonide is totally out of my system now, and this is what is happening. I’ve been VERY careful watching what I have been eating since I started the taper.

I have been so loving going just in the mornings!

I was hoping someone here would say…”stay the course…yes….the longer you’re on Stelara it will get better. Hang in there. In a few days your body will adjust to being on just the Stelara and you’ll be back to where you were”.

Post Edited (Rusty Barr) : 4/6/2023 11:26:51 AM (GMT-8)

Posted 4/6/2023 10:32 PM (GMT 0)
Not crazy about what the doc said to you. Very easy for him to say something like that if he's not the one suffering. If things continue to slide downhill over the next few days if it was me I would go back on full dose of budenoside and contact the doc and let him know what is going on. You don't want to get back to where you were before. Very hard to live life like that. But having said that ... Hang in there. In a few days your body will adjust to being on just the Stelara and you’ll be back to where you were smile
Posted 4/6/2023 10:40 PM (GMT 0)
When I started xeljanz I had to stop azathioprine/allopurinol cold turkey because it's too much immunosuppression to take them together. As a result i had some improvement on initially starting xeljanz then a few weeks of worsening (more urgency) before I improved again. I wouldn't necessarily jump back on full dose of budesonide but then i hate steroids. Maybe you can take a lower dose and still feel ok. I re read your post and it seemed you did ok on 6g? Do check in with your doctor for advice. Budesonide is absorbed ~10% systemically so while much less damaging than prednisone is still not something you want to be stuck on long term because of the risk of side effects.

Post Edited (poopydoop) : 4/6/2023 2:57:31 PM (GMT-8)

Posted 4/7/2023 1:02 AM (GMT 0)
Stelera can take a very long time for its full effectiveness to kick in. I would say out of the new meds it could be one of the slowest.
Posted 4/7/2023 4:04 AM (GMT 0)
Rusty,

I have spoken to both my GI and CRS in regards to Remicade, Humira, Stelera and what my expectations should be.

They both said that if you are on any kind of steroid you probably have more damage, hence you will need more time to heal and regardless of the meds it will take longer to get to your normal during remission.

You will have to discuss this with your GI. I know he wants you off the steroids...but you may have to taper a little more slowly while you are healing. I'd throw that out there.... See if it's a possibility.

Stay the course for now. Expect those hiccups. Don't get discouraged. IMHO Its too early to expect complete healing at this time.

Its just so hard to be patient when you are so very close.

Hang in there!
Clo

P. S. If you are still struggling call your doctor....do not wait for that appointment. That's too long to suffer. Go back on the steroid.

Post Edited (clo2014) : 4/6/2023 8:09:22 PM (GMT-8)

Posted 4/7/2023 4:18 AM (GMT 0)
I know it’s hard when you had some time of almost normal, to go backwards a bit. I’d say to hang in there while your body gets used to no steroids and let the stelara kick in. I know on entyvio it took me a good 4 months to be symptom free, but in that time I had greatly improved. It just wasn’t perfect remission yet. I know when stopping prednisone it can cause some backsliding while your body recovers. Not sure about budenoside tho as it didn’t help me so I wasn’t on it long.

Definitely check in with your GI and see what he thinks.
Posted 4/8/2023 12:35 AM (GMT 0)
Yeah, you can't tell if anything is working as long as you're still on steroids. The budesonide always seemed to help you feel pretty close to normal if I'm remembering correctly. Three months is a pretty long time. I think I may have given Stelara about 5 months and then moved on. I know some people give meds longer and that it depends on the med.

I don't really agree with all these people saying Stelara is doing anything for you. Sorry, just my opinion. I'm not in your body so I don't know but all these same people also told you to stay on Remicade for, what, over a year? I couldn't get off budesonide while on Stelara either. And I wouldn't get worse right away. It'd take me a week or so.

I agree with your doctor. However, if you continue to get worse, then you know Stelara is not doing anything and I'm sure can go back on the budesonide.
Posted 4/11/2023 1:09 PM (GMT 0)
Things are ok of late. Not great. But ok. Urgency very low….that’s the good news. But more frequency than I would like. 2 or 3 morning movements within a couple of hours. Then 1 more in the afternoon or evening. Then occasionally 1 waking me up in the night. Usually movements are smaller stools. But sometimes the movements are more what I would call chunky and loose.

I’m thinking I may put myself back on Questran. I have some left over from when I stopped that while on the Inflectra. I seem to remember it helping me a little bit.

Or maybe I just hold on just taking the Stelara for a while. See what happens in the coming weeks just being on that. (Plus all my daily supplements).

My second home injection of Stelara is May 8.

Post Edited (Rusty Barr) : 4/11/2023 5:14:05 AM (GMT-8)

Posted 4/11/2023 1:31 PM (GMT 0)
I remember when you were saying Questran was giving you some relief. I would go back on it & see how things go, it sure won't hurt anything, hopefully the Stelara will get you in remission. I think your flare was more severe than you realized & by the time you ended up on Stelara it's taking longer than you would like for it to take.

Hang in there Rusty.
Posted 5/4/2023 11:31 AM (GMT 0)

Hugo18 said...
I am on both Stelera and Rinvoq. I have no idea which one is working or they are working in combination. I don't plan to alter anything after being in remission for over a year. So far every 18 months my body overrides my meds.


Hi. Can you briefly give me a little bit of your history on these and your dosage. I’m on Stelara and it’s working …but I’m just not in complete remission like I was when I first started it. The first three months I was on both Stelara and budesonide 9 mg a day. That was heaven. Just one stool movement each morning. It was incredible to be like that.

Once I tapered off the budesonide (I’m now completely off)…things got a little rough.

After about a week, after coming off the budesonide taper, I put myself on welchol, 2 tablets morning and late afternoon. That gave me a mild bump in symptom relief. But not a huge jump. I don’t have my gallbladder so that is why welchol probably helps me.

For a while now I’ve averaged probably 1 movement at around 12:30 am.
That movement wakes me up but I’m able to go right back to sleep…

then I have 2 or 3 small movements spread out over 2 or 3 hours first thing in the mornings…right after I wake up.

…then sometimes, but not always, another movement late afternoon or early afternoon.

Sometimes in afternoons or early evening, I feel a mild urge to go…I go to the toilet…and nothing comes out.

All the actual movements vary in consistency. Sometimes medium size stools. Sometimes very normal looking stools. Sometimes tiny stool balls in a pile at the bottom of the toilet. Sometimes small mush pile in bottom of the toilet. Sometimes the movement is more loose/watery.

The best news is I rarely have urgency. Which for me is fantastic. If I do have urgency it’s mild.

I think I have only had 2 “get to the toilet!” moments in three months.

I’m in sales. I am in my car a lot. On highways. Not having to get off the exit in a rush or having to run into the woods off the exit is huge for me.

But the amount of movements each day, especially the one in the middle of the night…I pray and believe I could improve.

Like I said, there were three recent months of heaven.

So, all in all, this Stelara - Welchol combo is working for me. Mostly because of the reduction in urgency moments But of course I’d like better.

I’m due to inject Stelara for the second time this Monday May 8. Then I have a GI appointment on the 9th to check in with him.

I’m curious to hear more details on the Stelara/Rinvoq combo.
I’d like to “bring this info in with me” to that GI meeting.

Thanks in advance.
Posted 5/4/2023 10:38 PM (GMT 0)
So you are going 3-4 sometimes 5x a day, correct? I have noticed that you always break it down into smaller numbers. What you should be looking at is the number of times in 24 hours and give your doc the total number.

That's not real bad, but since you know it can better, you shouldn't just accept this. I don't know anything about Stelera, but it's obviously helping because it sounds a lot better than it was before you started it. See what your doc says, but my thoughts are that if you don't see improvement in the next 8 weeks after your next shot (or if you get worse) then Stelera probably isn't for you and should try something else.

I only saw one person on this site mention the Stelara/Rinvoq combo. That was pretty unusual.
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