Stelara/Ustekinumab Positive Experiences?

[LewisS]

Hello!

Many years I was on this forum white regularly seeking a diagnosis of IBD. It took some time but I eventually got that in 2014. Since then I have had many years of remission on Humira, but unfortunately it has stopped working and I’ve had a bowel resection since and am in a flare currently.

Having been discussed in the MDT meeting by my IBD team, it has been decided that I will start Stelara in a couple of weeks time.

I’ve read some good experiences elsewhere but it seems in this sub-forum there aren’t many! I’d love to hear if anyone has had a solid remission on ustekinumab.

Thank you,
Lewis

 

[Delta_hippo]

It’s the best drug I’ve been on for Crohn’s and the only one to get my intestinal inflammation significantly better (they stop counting at 600 in my area. Remicade I couldn’t tolerate. Entyvio got briefly to 450 then back to 600+ despite doubling dose. Stelara got me to 140. Normal is 50 or less. Hoping stelara has maintained progress at next review due soon).
It did induce a bit of eczema and psoriasis but my GI thought I was pretty unlucky with that and not usual side effect.
Good luck with it.

 

[my little penguin]

My kiddo has
He has been on Stelara since 2017.
No real issues -only one blip when insurance insisted we try every 8 weeks instead of the every 4 weeks has been on for years
He switched from humira as well
He was on humira for over 5 years

 

[Scipio]

I've been on Stelara for four years now, and with respect to symptoms it has kept me in a solid remission that whole time - with no side effects. My most recent colonoscopy showed signs of a low level of chronic inflammation in the terminal ileum, so it's not a total remission. The doc is waiting to do some addtional testing of Stelara blood levels and anti-drug antibodies to see whether we need to boost the dose or take some other action.

Overall, I'm quite pleased with Stelara. I just wish it weren't so sky-high expensive.

 

[westernbuddy]

I have been on it for 4 days now, its the only drug my Gi could persuade me to take.

Felt normal before taking it.

I can tell its in me, used to go for a number 2 twice a day.

Now it's hard to go one time a day.

As time passes I'll try some food that used to really mess me up, see if I can eat it now I'm on stelara.

I have a real life friend on it, age 40 crohns 20 years, stelera for last 3 years, she claims its had a huge positive impact on her quality of life and works very well.


I was in a savage flair this summer couldn't even walk, full entral nutrition and prednisolene made the inflammation bugger off.

 

[LewisS]

Thank you all for your responses! It’s reassuring to hear that some have had great responses to this drug. I’ll keep you updated on whether I respond…or not. But I’m staying positive!

 

[Pangolin]

So far my son has been on it for 6 months, along with a special diet which he was on before he started it (initially all semi-elemental formula and still mostly semi-elemental formula). No side effects so far. Inflammation numbers all down to the normal range from abnormal previously. Poops improved from 2 rather soft per day to 1 fully formed.

 

[Poppysocks]

I got my first dose September 27 and I was finally able to taper off the small dose of prednisone I was on for the last 10 months. I took my last prednisone last Wednesday.

Things aren't perfect yet but the fact that I was able to get off prednisone let's me know its working. I will be interested to see if it keeps me in decent shape the entire 8 weeks.

 

[Babs65]

Hello!

Many years I was on this forum white regularly seeking a diagnosis of IBD. It took some time but I eventually got that in 2014. Since then I have had many years of remission on Humira, but unfortunately it has stopped working and I’ve had a bowel resection since and am in a flare currently.

Having been discussed in the MDT meeting by my IBD team, it has been decided that I will start Stelara in a couple of weeks time.

I’ve read some good experiences elsewhere but it seems in this sub-forum there aren’t many! I’d love to hear if anyone has had a solid remission on ustekinumab.

Thank you,
Lewis

Hi! I just received my Stelara infusion last week. No problems so far! Wish you the best!!!

 

[kotite4ever]

Hi there! I've been on Stelara since March of this year (so it's been a little over 3 months at this point). I have to say, it's done a good job with my Crohn's symptoms. I had been on Entyvio for a year and a half prior to that (and Humira 9 years ago, but I had side effects). Entyvio didn't really help me very much, but Stelara seems to be doing a good job so far. However, I have a lot of nuisance side effects with this drug. For about the past 2 months, I've been more tired than usual, I feel like I have a perpetual scratchy throat (that comes and goes), and I constantly feel like I'm coming down with something...but never do. Has anyone experienced side effects like this? Thanks!

 

[Scipio]

. However, I have a lot of nuisance side effects with this drug. For about the past 2 months, I've been more tired than usual, I feel like I have a perpetual scratchy throat (that comes and goes), and I constantly feel like I'm coming down with something...but never do. Has anyone experienced side effects like this? Thanks!

I've been on Stelara for about 5 years now. I don't feel like I'm coming down with something. I do feel tired, but I never know how much of that to attribute to the drug and how much to blame it on just getting old.

 

[Babs65]

Hi! I just received my Stelara infusion last week. No problems so far! Wish you the best!!!

Seems to be working! Only issues are fatigue and occasional constipation. Go figure! I’m able to eat anything but Thai food, so I’m happy. I hope you do well!

 

[kotite4ever]

I've been on Stelara for about 5 years now. I don't feel like I'm coming down with something. I do feel tired, but I never know how much of that to attribute to the drug and how much to blame it on just getting old.

Ha, yeah, same. I'm no spring chicken anymore either

 

[Guerrero]

Hi there! I've been on Stelara since March of this year (so it's been a little over 3 months at this point). I have to say, it's done a good job with my Crohn's symptoms. I had been on Entyvio for a year and a half prior to that (and Humira 9 years ago, but I had side effects). Entyvio didn't really help me very much, but Stelara seems to be doing a good job so far. However, I have a lot of nuisance side effects with this drug. For about the past 2 months, I've been more tired than usual, I feel like I have a perpetual scratchy throat (that comes and goes), and I constantly feel like I'm coming down with something...but never do. Has anyone experienced side effects like this? Thanks!

Regarding tiredness , did you check your levels of hemoglobin, iron and vitamins (b12 , b9, d)? Could come from some deficiency there

 

[kotite4ever]

Regarding tiredness , did you check your levels of hemoglobin, iron and vitamins (b12 , b9, d)? Could come from some deficiency there

Not recently, but I'm getting bloodwork tomorrow when I get my next Stelara shot. I'll be sure to tell them my symptoms.