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Stelara. Shorter than 8 week intervals?

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Ulcerative Colitis
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Posted 5/17/2023 7:54 PM (GMT 0)
Hi.

Had my GI follow-up appointment yesterday. I’ve had 2 injections so far. Just started Stelara recently.

Right now I’m averaging 4 or 5 movements a day. 3 of those in the early mornings. Not ideal of course.

My GI wanted to run some blood work and get a stool sample. That’s happening.

In the appointment he mentioned the possibility of shorter intervals between injections.

Anyone have any experience with this?

He also mentioned the possibility of adding “imuran”. I have no idea what that is.

I’m thinking the shorter interval plan might be best …to try that first?

Thanks in advance.

-

Post Edited (Rusty Barr) : 5/18/2023 2:55:19 AM (GMT-8)

Posted 5/18/2023 1:06 PM (GMT 0)
Hi I cannot advise on the stelara although it would seem sensible as similar adjustments are made with other biologics.

The issue is not the number of bowel movements- some people can go 4 or 5 times a day in remission and that's normal for them. The issue is how urgent they are, and if you have to go during the night (which is not normal).

Imuran/azathioprine/6mp is an immunosuppressant that helps some UC patients. In many European countries they usually try imuran before biologics because it's much cheaper. It can be used in conjunction with biologics to enhance the efficacy and suppress antibody production. You will however be more immunocompromised than if you were taking only the biologic. It can also be tricky to get the dose right on imuran (it is partly weight dependent but also depends on how your body metabolises it).
Posted 5/18/2023 2:08 PM (GMT 0)
My GI gave me the option of taking Stelara more often when I was on it and it wasn't helping me at all. We tested my drug levels and the were normal and I still couldn't get off steroids, so I decided not to increase the frequency of the dose and just move on to Xeljanz. But it is an option. I had bad side effects when I tried imuran.
Posted 5/18/2023 4:12 PM (GMT 0)
My insurance company opted for me to try Imuran before a biologic and it has worked wonders for me. It takes at least 3 months to get a beneficial level to work, so it is slow.
There has been some discussion about not being on it for super long, I have taken it for 4.5 years now. I started at 50 mg for a couple of months, had tons of bloodwork done, and went up to 100 mg after that. I stayed on that dose until 6 months ago when I started alternating between 75 mg and 100 mg (started with 75 only one day a week and gradually worked to every other day). My goal is to get down to 75 mg a day. It is dosed at 1.5-2 mg per kg of body weight for UC. I think iPoop took it for a while with Remi, it helps boost the effectiveness of the biologic.
Posted 5/18/2023 5:12 PM (GMT 0)
I would opt for moving to every 6 weeks before adding anything to the mix. I say this since you are still in the loading dose phase too.

You have to be patient, it's hard we understand.
Posted 5/18/2023 5:39 PM (GMT 0)
Rusty,

Did he tell you "why" he wanted to add the Imuran? Was it mostly to help with the symptoms and get you in remission, was it to stop you from building antibodies or both?.

The why could help in making a decision.

Clo
Posted 5/18/2023 10:25 PM (GMT 0)

clo2014 said...
Rusty,

Did he tell you "why" he wanted to add the Imuran? Was it mostly to help with the symptoms and get you in remission, was it to stop you from building antibodies or both?.

The why could help in making a decision.

Clo

He was just throwing this out there in response to my…”if this 5 or 6 times a day ….keeps up…sometimes with some urgency…is there anything we can do to reduce these things?”
Posted 5/20/2023 9:25 PM (GMT 0)
I don't know anything about Stelera, but if you only had 2 shots so far it's still early. You are kind all over the place with your frequency. In the 1st post you said 4 or 5 and in the last you said 5 or 6. 4 isn't all that alarming, but 6 is concerning. I know it sounds yukky, but keep a journal and write down when you go so you can look back and be able to tell when things are actually getting better. I love spreadsheets so that's what I used and it really helped me from getting discouraged when I had a bad day because I could see that week to week I was getting so much better. I noted the time, how much, formation, blood, urgency and anything else I thought of. It helped me to see things more clearly.
Posted 5/20/2023 9:41 PM (GMT 0)
I am on a 4 week schedule and it is working pretty well for me. Be aware that the insurance companies like to deny you at first because "the FDA recommendation is every 8 weeks" but I have been refractory for everything else and this has been proven to work so they do eventually approve it, particularly since there is precedent for a 4 week interval. It is a very long and frustrating experience though.
Posted 5/23/2023 8:16 AM (GMT 0)
I made a poop chart during my last flare - kept a record of number of toilet visits in my diary then plotted a graph in excel. I also added a second line with my calprotectin numbers (which i was measuring every 2 weeks at one point). It was really cool because first the calprotectin would decrease then the poops would decrease slightly later. Anyway the one thing that came out of that exercise is that if you don't keep a written tally of the number of poops then you probably don't know how many times you are going. The other thing that was apparent was that there were daily fluctuations but if you make a graph you can see the long term trend. 🤓
Posted 5/23/2023 9:32 AM (GMT 0)
Rusty,

I hope things have continued to improve.

I too made an excel chart..... Frequency, any issues, how many times..etc.... I also included a secondary sheet with everything I ate or put in my body that day.(including vitamins) I put it on my phone. PITA!!! But it helped me a bunch. I also made one for my blood work.... It shows where I have been and how I am doing.

It's good to have multiple game plans for the future. It's also difficult to be patient for a medication to start working when you've been struggling as long as you have. My GI told me at the beginning to toss the expectation of going once a day out the window. It's ok for a goal but for some people their new normal changes the number to 2, 3, 4 or 5. Those numbers alarmed me but he was not concerned. Even on meds while supposedly in remission prior to the ostomy my new number was 4 or 5. That's the lowest I could get it down to. I hope and pray you get yours down to an acceptable number with no urgency.

Hang in there,
Clo
Posted 6/14/2023 3:03 AM (GMT 0)
Rusty,

How are you? I hope your are doing better.

Clo
Posted 6/15/2023 11:43 AM (GMT 0)
Thank you!

Unfortunately about the same. I probably average a total of 5 or 6 times a day, 3 or 4 of those in the mornings. 3 or 4 times a week I sleep through the night without a movement on average I would say.
Mostly medium sized stools or stool pieces. I just can’t seem to have large enough movements so I’m not going to the toilet as many times each day as I do.

The good news is I haven’t pooped my pants in a long time. When the urge comes to go, it’s usually medium to mild urge and I’m able to get to a toilet. That’s huge for me with my outside sales job.

My new GI, who I started going to in the summer of 2022, he handles all kinds of GI issues, he spoke last meeting about possibly shortening time from 8 week intervals on the Stelara. He also spoke of possibly adding immuran. I’m guessing this is him thinking there’s a way to reduce the frequency. He recently sent a Referal for me to more of a UC specialist at another hospital here. I’m waiting to hear from her office and get an initial appointment. He said another reason for the Referal was my blood and stool samples showing above normal inflammation. I don’t have the numbers with me now, but I remember looking them all up here in the forums, and when they were above the high side of the normal range, they were higher than high normal, but not crazy high.

But he messaged me when the results came in and said he wants to pursue better treatment.

I’m getting a vibe, he’s thinking he doesn’t want to keep throwing darts…bring more of a UC specialist in, and see what she thinks.

I started Stelara mid January. I also take 2 tablets of welchol morning and night and that does seem to help.

Thanks again for checking in on me.

Post Edited (Rusty Barr) : 6/15/2023 8:43:22 AM (GMT-8)

Posted 6/15/2023 1:56 PM (GMT 0)
I think it’s a good idea to see the specialist. Sounds like stelara is helping but doesn’t have you in complete remission. But at least you’re in a more manageable state of disease. Definitely let us know when you see the specialist and their recommendation
Posted 6/15/2023 11:00 PM (GMT 0)
Definitely see the UC specialist! I don't know why it's so difficult for the non specialists to stay on top of the newer drugs and dosing regimens but apparently it is, so ...
Posted 6/16/2023 5:27 AM (GMT 0)
Rusty,

I agree with the specialist idea. I think they see more complex cases so they have alittle more ideas on treatment options.

Hang in there. It's frustrating that you are not where you want to be yet... But you are heading in the right direction.

It's a struggle that we are all very familiar with. I sometimes think that we don't know our own strength until we come out on the other side and our hindsight is 20/20.

Please let us know how you are doing. We are here to vent with or share with.

Clo
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