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Stelara less than every 8 weeks?

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Ulcerative Colitis
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Posted 10/16/2023 3:32 PM (GMT 0)
Hi.
Anyone have any experience with this?
Posted 10/16/2023 10:47 PM (GMT 0)
I take it every 4 weeks. I had to fight my insurance for many months to get it approved.
Posted 10/17/2023 2:04 AM (GMT 0)
Take it every 6~8 weeks as needed.
Posted 10/17/2023 4:27 PM (GMT 0)
Rusty, what kind of issues are you having? Have you discussed this with your dr & had your trough levels checked?

Stelara can be adjusted which is a good thing for patients.
Posted 10/17/2023 5:36 PM (GMT 0)
Hi. Yes. He’s thinking about decreasing intervals. I’m due for my 8 week injection this Sunday, so I’m going late this Friday afternoon to get the blood trough drawn. I would go Sunday morning or Saturday for the test but lapcorp is open only until 5 pm on Friday. I texted him through the portal and he said a late afternoon draw on Friday will work.

I’m doing ok but he wants to see me improve. Currently I take the 8 week Stelara (been on it since January 2023) and I take 6 mg of budesonide every morning. I have read online that you can take budesonide at that dose long term, but he said he is not a fan of that.

I’ve also been taking 2 pills of welchol twice a day, but I don’t think that is doing much. I’m actually going to stop taking that. Just found out my PEBA Blue Cross is no longer going to cover that…so goodbye.
I’ve asked him about the welchol and he said I could stop taking that if I want to and I don’t need to taper it. He doesn’t think the welchol is doing anything for me.

My current daily routine is typically 4 movements between 6 am and 9:30 am. They get progressively looser through the 4. The first one is usually pretty good looking, then the last one of the 4 is usually loose/watery.
I wonder sometimes is going the 4 times each morning…at almost equal intervals is in my head? Lol. Why is it almost always like that? Do I have a clock in my gut? Lol

Sometimes I have to get up and go in the night around 2 am. Fortunately I’m able to go right back to sleep.

Or sometimes I have one in the early evenings. But what’s typical is the 4 movements each morning.

61 year old man. I have had “moderate UC” since 2016. That’s what they always say after my colonoscopies.
“Your UC is not mild, nor severe…I would say it’s moderate”

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Post Edited (Rusty Barr) : 10/17/2023 9:40:53 AM (GMT-8)

Posted 10/17/2023 5:59 PM (GMT 0)
Yikes, with those lingering symptoms & what you are doing it sounds like you have hit a wall. My guess is once the dr gets your lab results he will make his recommendation of moving your shots closer together?

Question, does your symptoms get better right after your shot, then get worse as more time goes by?
Posted 10/17/2023 6:09 PM (GMT 0)
I often go 4x in the morning, in remission..... had a scope recently so I know I'm not flaring...I really don't pay much attention to how solid they are, as long as it's not diarrhea.

But, nocturnal bowel movements is a sign of flaring.
Posted 10/19/2023 11:33 AM (GMT 0)

straydog said...
Yikes, with those lingering symptoms & what you are doing it sounds like you have hit a wall. My guess is once the dr gets your lab results he will make his recommendation of moving your shots closer together?

Question, does your symptoms get better right after your shot, then get worse as more time goes by?

Yes. I notice a definite trend of things slipping week 6 after my injection, then slipping down another notch week 7.
Posted 10/19/2023 3:34 PM (GMT 0)
Let us know how the lab work comes back & what your gi has to say about this. I would move to the shots being being moved to 6 weeks & take it from there.
Posted 10/22/2023 1:05 PM (GMT 0)
They said it will take a while to get the results at LabCorp. Had the draw at 4 pm Friday 10/20/23.

Just curious, what test result range would be “normal”, and what number would show that I would be better off with shorter injection intervals?
Posted 10/27/2023 6:02 AM (GMT 0)
I have been doing quite a few searches on Stelara and how long it takes to kick in etc. And from what I read on Reddit and this forum, it seems that most people with IBD (UC in particular) end up needing to take it every 4-6 weeks. Very few seem to be able to hold remission at the 8 week intervals.
Posted 11/1/2023 9:39 PM (GMT 0)
Trough came back at 0.9 at eight weeks.
GI said we are going to move the injections to once every 4 weeks.
(Easy for him to say. Now the insurance “game” begins. Sigh.)
Posted 11/2/2023 11:48 AM (GMT 0)
I have been using the Stelara program, through the manufacturer, where my co-pay works out to only $5 cost to me each time I order it.

(I have Blue Cross Blue Shield PEBA).

How will this work if I move to 4 week injections…Anyone have any experience with this?
Posted 11/2/2023 10:28 PM (GMT 0)
Once you get approved have the person in your dr's office notify them of the change in frequency. Hopefully the dr can get you approved without a bunch of grief.
Posted 11/4/2023 2:45 PM (GMT 0)
The doctors office called me yesterday and said the move to every 4 weeks was denied. She said that’s not unusual. They will now appeal.
Posted 11/7/2023 10:53 PM (GMT 0)
I got denied too. I had to fight for four or five months with my insurance company with the help of my GI’s office. We ended up appealing to my State’s insurance board and they sided with me and wrote a really harsh letter to my insurance company saying that they were wrong in their denial and that they had to give it to me because there was data supporting it efficacy for every 4 weeks.
Posted 11/9/2023 10:51 PM (GMT 0)
Hi. Just got an auto robot call saying my 4 week interval has been approved by my insurance company.
I guess the appeal was successful.

I think I am on my way. I pray this works.

Just curious. Was there any special instructions your doctor gave you when you went from 8 weeks to 4 weeks on your injection? Any side effects? Anything I need to know?
Also, how long until you saw an impact?

Also. I’ve been copaying only $5 an injection, being a member of “Stelara Janssen manufacturers club”. I guess they pick up whatever Blue Cross doesn’t pay for.
Will that stay the same?

Post Edited (Rusty Barr) : 11/11/2023 12:53:09 PM (GMT-8)

Posted 11/11/2023 2:33 PM (GMT 0)
Congrats on getting the approval. I haven't read of anyone having issues moving the shots closer together. I can't really answer your question on the length of time it will take.

Send an email to your drs office & ask if they have notified the change in frequency I suppose. When my Remicade schedule changed I didn't have to do anything.

Good luck.
Posted 11/11/2023 3:49 PM (GMT 0)
Rusty you should probably call stelaras assistance line for your answer about your copay. I think some of the manufacturers have a $ limit in their fine print.

Good luck! Hoping this finally does the trick for you.
Posted 11/12/2023 4:33 PM (GMT 0)
I’ve always wondered how the assistance copay system worked. I’ve been on Stelara every 8 weeks since January of 2023. My copay when I call accredo/express scripts has always been only $5.
I have PEBA/blue cross blue shield as my only insurance…and I also enrolled in the Jansen/Stelara program when I started the drug.

I have heard the actual cost of this drug if you totally paid out of pocket is incredibly high. As are most biological drugs.

The Jansen website says they will copay up to $20k.

Well. I have heard a couple of doses and you’re over that.

I don’t get it.

?

.

Post Edited (Rusty Barr) : 11/12/2023 9:23:32 AM (GMT-8)

Posted 11/13/2023 4:07 PM (GMT 0)
I called the Stelara “nurse navigator” help line this morning. She said the $5 copay would not change.
I didn’t ask her to explain how exactly the program works.

Thank you Jesus!

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Posted 11/13/2023 4:58 PM (GMT 0)

ks1905 said...
I got denied too. I had to fight for four or five months with my insurance company with the help of my GI’s office. We ended up appealing to my State’s insurance board and they sided with me and wrote a really harsh letter to my insurance company saying that they were wrong in their denial and that they had to give it to me because there was data supporting it efficacy for every 4 weeks.

Do you remember. How long after you started with the 4 weeks injections …did you start to see improvement.
What was your journey like from the switch from every 8 weeks to every 4 weeks?

Thanks in advance.
Posted 11/13/2023 6:12 PM (GMT 0)
@Rusty, look at Keith's signature line, he had surgery & is on Stelara for pouchitis which is totally different from your situation.

So far I haven't seen anyone have issues moving doses closer together. I suppose you can do your shot on a Friday to see if you have any problems.
Posted 11/19/2023 5:07 PM (GMT 0)
It’s taken a few months of being on the new dose but I’m starting to feel better and have noticeably more energy.

I’ve been on Stelara for a long time. I’m surprised that it worked as long as it did and now I’m glad that the new dose is starting to work for me
Posted 11/19/2023 8:08 PM (GMT 0)

ks1905 said...
It’s taken a few months of being on the new dose but I’m starting to feel better and have noticeably more energy.

I’ve been on Stelara for a long time. I’m surprised that it worked as long as it did and now I’m glad that the new dose is starting to work for me

I have “moderate UC”. I wonder about the difference of this drug related to the dosage and our conditions.
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