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.
How quick stelara works?
- Thread starter Svinez
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 15, 2012
- Messages
- 14,838
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
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
- Joined
- Aug 2, 2013
- Messages
- 1,192
Has he been on stelara ever since, in remission? How much oral mtx does he also take?
- Joined
- Apr 15, 2012
- Messages
- 14,838
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
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
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!
I heard from quite a bit of people that Stelara can take a while. I hope it works for you soon!
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 
.
. 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 .
- Joined
- Apr 15, 2012
- Messages
- 14,838
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
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
- Joined
- Aug 2, 2013
- Messages
- 1,192
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.
- Joined
- Aug 2, 2013
- Messages
- 1,192
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?
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?
- Joined
- Aug 2, 2013
- Messages
- 1,192
Thank you for sharing that with me.
- Joined
- Aug 2, 2013
- Messages
- 1,192
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
- Joined
- Aug 2, 2013
- Messages
- 1,192
Definitely worth a try if it had been effective. If that doesn’t quite do it, adding 6mp could be an option.
- Joined
- Jan 8, 2019
- Messages
- 330
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…
- Joined
- Jan 8, 2019
- Messages
- 330
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/
- Joined
- Aug 2, 2013
- Messages
- 1,192
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.
- Joined
- Jan 8, 2019
- Messages
- 330
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.
- Joined
- Jan 8, 2019
- Messages
- 330
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/
https://pmc.ncbi.nlm.nih.gov/articles/PMC9453768/
- Joined
- Aug 2, 2013
- Messages
- 1,192
Thank you, I appreciate your effort and sympathy.
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 vert first time, I “passed” through the blocked section in my rectum while inserting a 5-ASA suppository.
Last edited:
Similar threads
Latest posts
-
-
-
Microbiome Breakthrough: New Crohn's Treatment Unveiled- Latest: Michael Harrop
-
-
-
-