How quick stelara works?

[Svinez]

Hello everyone, I have been diagnosed with Crohn's disease for several years. Now I have changed infliximab, entyvio, and upadacitinib, due to 0 effect or side effects, the effective one was rinvoq ( furunculosis, boils etc) . Now I’m being given Stelara, how quickly does this medicine work, it’s now 6 weeks since my first Stelara and I haven’t noticed much of an effect. How fast does it work? thank you for your responses.

 

[Scipio]

It's variable. For me it took about two weeks to start to notice improvements. For others it sometimes takes a couple of months.

 

[my little penguin]

Took 8 months for my kiddo
BUT … he was at 90 mg every 8 weeks for 5-6 months before insurance approved Stelara at 90 mg every 4 weeks
Two months of every 4 weeks and my kiddo was good .
That was 6 years ago

 

[Crohn2357]

Took 8 months for my kiddo
BUT … he was at 90 mg every 8 weeks for 5-6 months before insurance approved Stelara at 90 mg every 4 weeks
Two months of every 4 weeks and my kiddo was good .
That was 6 years ago

Has he been on stelara ever since, in remission? How much oral mtx does he also take?

 

[my little penguin]

He is still on Stelara and takes 20 mg of oral mtx.
He has juvenile arthritis and crohns .
The mtx is for the arthritis.
All scopes / imaging /bloodwork /fecal cal has been good since .
His fecal cal /bloodwork did go up the one time insurance pushed to have him prove he needed every 4 weeks.
He took one dose at every 6 weeks and labs went up but back to normal after that at every 4 weeks

 

[Svinez]

thanks for the answers, I'll probably have to wait at least 16 weeks, since I've tried all the drugs except methotrexate, if Stelara doesn't work, I'll have to take Rinvoq or MTX

 

[asadmom]

My son was seeing improvements in symptoms around week 3 after the initial infusion and his calpro was < 50 around week 3 too. He was on Humira prior to the switch. No mtx.

I heard from quite a bit of people that Stelara can take a while. I hope it works for you soon!

 

[Svinez]

A somewhat strange drug to be honest . Because I have a thickening in the intestinal wall (ultrasound examination) from 3.5 to 7 mm (in the middle of the colon), and the calprotectin level is a ridiculous 13 when the norm is 50. Although all the tests (blood C-protein etc) are excellent, the intestines still hurt once or twice a month .

 

[my little penguin]

Unfortunately thickening can be inflammation or it can be scar tissue
Inflammation can be reduced
But nothing can be done for scar tissue except to remove it .
Hope things work soon

fecal cal of 13 is great
My kiddo sits at 15 when things are good

 

[Svinez]

It took a long time to get going, but it finally started working. I had to increase the injection frequency.

 

[Crohn2357]

It took a long time to get going, but it finally started working. I had to increase the injection frequency.

Hi, how long did it take to work after you increased the injection frequency?


https://crohnsforum.com/threads/ste...oes-it-take-to-notice-the-improvements.87674/

 

[Svinez]

Hi, how long did it take to work after you increased the injection frequency?


https://crohnsforum.com/threads/ste...oes-it-take-to-notice-the-improvements.87674/

It got better after about three months, but the dose was increased. I think it works 90/100. 1 times in 6 weeks now.

 

[Crohn2357]

Stelara hasn’t worked for me. We will stop it and start a new treatment plan. I am in a very bad place right now due to the ineffectiveness of Stelara. Lots of blood and abdominal pain. Rectal stump is a mess. I was in much better shape when I was using Humira weekly. It was much more effective and protective but it wasn’t enough to put me into remission even with maximum dose of 6mp.

I don’t know what to do. My gastroenterologist doesn’t either.

I may start entyvio again but I am not hopeful about that.

Some time ago I read about the use of entyvio and Humira together, for refractory crohn’s, but I don’t remember anything about it. Does anyone know, heard or read anything about that?

 

[Svinez]

There are currently about 10 biological drugs. Rinvoq, guselkumab etc. My doctor said that can use 2 biological if Crohn's is hard

 

[Crohn2357]

There are currently about 10 biological drugs. Rinvoq, guselkumab etc. My doctor said that can use 2 biological if Crohn's is hard

Thank you for sharing that with me.

 

[Svinez]

yeah, just when I felt better, my intestines started hurting again. The ultrasound showed inflammation in the sigmoid colon. I'll probably have to ask again to increase the dose.

 

[Crohn2357]

yeah, just when I felt better, my intestines started hurting again. The ultrasound showed inflammation in the sigmoid colon. I'll probably have to ask again to increase the dose.

Sorry to learn that. How often do you take stelara? Do you take immunosuppressants with it?

 

[Svinez]

Sorry to learn that. How often do you take stelara? Do you take immunosuppressants with it?

No , only stelara, 1 times in 6 week, i hope that 1 in 4 weeks will be effective. Cause 6 months my guts were ok

 

[Crohn2357]

No , only stelara, 1 times in 6 week, i hope that 1 in 4 weeks will be effective. Cause 6 months my guts were ok

Definitely worth a try if it had been effective. If that doesn’t quite do it, adding 6mp could be an option.

 

[Delta_hippo]

Sorry to hear it. There was a paper a few years ago about a combination of remicade, anti-map drugs and a third thing, can’t remember what, being used for refractory Crohn’s, I’ll try and find it…

 

[Delta_hippo]

Stelara hasn’t worked for me. We will stop it and start a new treatment plan. I am in a very bad place right now due to the ineffectiveness of Stelara. Lots of blood and abdominal pain. Rectal stump is a mess. I was in much better shape when I was using Humira weekly. It was much more effective and protective but it wasn’t enough to put me into remission even with maximum dose of 6mp.

I don’t know what to do. My gastroenterologist doesn’t either.

I may start entyvio again but I am not hopeful about that.

Some time ago I read about the use of entyvio and Humira together, for refractory crohn’s, but I don’t remember anything about it. Does anyone know, heard or read anything about that?

Sorry should have quoted you in last message
Here’s the paper
The third thing was oxygen, bizarrely
And for refractory fistualising disease so unsure if that’s the case for you
https://pubmed.ncbi.nlm.nih.gov/28031926/

 

[Crohn2357]

Sorry should have quoted you in last message
Here’s the paper
The third thing was oxygen, bizarrely
And for refractory fistualising disease so unsure if that’s the case for you
https://pubmed.ncbi.nlm.nih.gov/28031926/

I read that article but thanks for sharing, I appreciate that.

I don’t have fistulas but I have inflammation and scar tissue in my unused rectal stump, which caused extreme narrowing. I have been using stelara every four weeks plus 6mp and 5-asa suppositories and nowadays we’re considering adding another biologic, probably humira.

Regarding antimap, both clofazimine and rifabutin aren’t available in my country so if I want to obtain them I would need an official tb or similar diagnosis or get them by traveling to the countries that sell them. Don’t know if it would be worth the hassle, I doubt it. There are some antibiotics that can be used as substitute for those but again doubtful if that would be a viable plan, both in terms of effectiveness and safety/tolerability.

I don’t know how much can be done for the scar tissue in my rectum but maybe repeated dilation procedures can help, along with stopping the inflammation that’s also present in there. That’s what we hope. If things don’t work, I may need permanent colostomy as I may lose my rectum.

 

[Delta_hippo]

I read that article but thanks for sharing, I appreciate that.

I don’t have fistulas but I have inflammation and scar tissue in my unused rectal stump, which caused extreme narrowing. I have been using stelara every four weeks plus 6mp and 5-asa suppositories and nowadays we’re considering adding another biologic, probably humira.

Regarding antimap, both clofazimine and rifabutin aren’t available in my country so if I want to obtain them I would need an official tb or similar diagnosis or get them by traveling to the countries that sell them. Don’t know if it would be worth the hassle, I doubt it. There are some antibiotics that can be used as substitute for those but again doubtful if that would be a viable plan, both in terms of effectiveness and safety/tolerability.

I don’t know how much can be done for the scar tissue in my rectum but maybe repeated dilation procedures can help, along with stopping the inflammation that’s also present in there. That’s what we hope. If things don’t work, I may need permanent colostomy as I may lose my rectum.

If you wanted to talk through with someone who understands the antibiotics options then I think Dr Sanderson at Guys and St Thomas hospital in London is one of the leading people in this area, no idea what a private consultation would cost.
It is a long shot though.
Otherwise I hope your treatment plan starts to help, double biologics is not totally rare these days from what I read on here. I don’t know if you have experimented with anti inflammatory diets? It’s hard to think what else might help. I hope things settle down for you soon.

 

[Delta_hippo]

Okay another paper and probably too much of a tangent, this guy writes about a theory of UC where the rectum is the focal point for inflammation and he goes on about the importance of reducing oxidative stress and has devised some kind of enema that allegedly reduces inflammation in that area. I read about it a few years ago on another forum where some people said it had been helpful so just on the off chance it may be useful
https://pmc.ncbi.nlm.nih.gov/articles/PMC9453768/

 

[Crohn2357]

If you wanted to talk through with someone who understands the antibiotics options then I think Dr Sanderson at Guys and St Thomas hospital in London is one of the leading people in this area, no idea what a private consultation would cost.
It is a long shot though.
Otherwise I hope your treatment plan starts to help, double biologics is not totally rare these days from what I read on here. I don’t know if you have experimented with anti inflammatory diets? It’s hard to think what else might help. I hope things settle down for you soon.

Thank you, I appreciate your effort.

I’m aware of Pravda’s work through Healingwell forum.

“Enema formulation
The enema was formulated by adding the following components to a standard 60-milliliter enema bottle containing 4 g of mesalamine (5-ASA) from which 20 milliliters were removed (and discarded): (1) 15 milliliters of 1 molar sodium butyrate (1.7 g); (2) 5 milliliters of sodium cromolyn (total 100 mg); and (3) 1 milliliter of budesonide (5 mg/mL). Gentle swirling should follow the addition of each component to ensure uniform dispersal. The total ending volume is 61 milliliters. The combination enema is easily made by a compounding pharmacist. We only used the original enema bottle containing mesalamine to formulate this therapy as other bottles may have residual chemicals that can worsen UC.”

I have been following a strict diet for years that’s been crucial for my health.

I have written about the rectal stump in two other threads.

1-) Sodium BHB (by Old Mike - @mf15)

https://crohnsforum.com/threads/suc...-by-using-sphincterotomes.87962/#post-1058891

Mike’s writings are worth reading.

2-) Dual biologics:

https://crohnsforum.com/threads/ste...o-notice-the-improvements.87674/#post-1058921

I have been taking sodium BHB for the last two days and the narrowing seems to be getting better. Today, for the very first time, I “passed” through the blocked section in my rectum while inserting a 5-ASA suppository.

 

[Crohn2357]

Thank you, I appreciate your effort.

I’m aware of Pravda’s work through Healingwell forum.

“Enema formulation
The enema was formulated by adding the following components to a standard 60-milliliter enema bottle containing 4 g of mesalamine (5-ASA) from which 20 milliliters were removed (and discarded): (1) 15 milliliters of 1 molar sodium butyrate (1.7 g); (2) 5 milliliters of sodium cromolyn (total 100 mg); and (3) 1 milliliter of budesonide (5 mg/mL). Gentle swirling should follow the addition of each component to ensure uniform dispersal. The total ending volume is 61 milliliters. The combination enema is easily made by a compounding pharmacist. We only used the original enema bottle containing mesalamine to formulate this therapy as other bottles may have residual chemicals that can worsen UC.”

I have been following a strict diet for years that’s been crucial for my health.

I have written about the rectal stump in two other threads.

1-) Sodium BHB (by Old Mike)

https://crohnsforum.com/threads/suc...-by-using-sphincterotomes.87962/#post-1058891

Mike’s writings are worth reading.

2-) Dual biologics:

https://crohnsforum.com/threads/ste...o-notice-the-improvements.87674/#post-1058921

I have been taking sodium BHB for the last two days and the narrowing seems to be getting better. Today, for the very first time, I “passed” through the blocked section in my rectum while inserting a 5-ASA suppository.

Lots of blood today. The blockage (that I passed through yesterday) is there, not surprising. Looks like I’m going to need to add humira to stelara and 6MP after all.