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Stelera question

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Ulcerative Colitis
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Posted 7/29/2021 5:10 PM (GMT -7)
I was wondering about Stelera and responses. I am 3 months in. I had a response at week 7. After a nasty flare the blood stopped. Still have a few BM’s but other then that all good.
I was due this week for my third injection and got some small amounts of blood for the first time in over a month. Does Stelera work like a remicade where you can be impacted early on late in between infusions? I injected myself two days ago so perhaps I will see a quick turnaround. Thanks Stelera users!!!
Posted 7/30/2021 7:34 AM (GMT -7)
Haven’t used stelara but I am on a biologic (entyvio) and will say that early on (say the first year?) I would have slight symptoms (increase in cramps or urgency or # of bms) in the couple weeks before my next infusion. Not every month as I recall and nothing severe — just enough to worry about! It eventually stopped.
Posted 8/3/2021 7:24 PM (GMT -7)
Thanks Flower gal. Sadly, after 6 really good weeks, I think I may have had a lost of response. It has been only a week since my last injection but things don’t seem to be really getting better. Hopefully dose intensification works but my proctitis is returning. I was a late responder to Stelera so perhaps I am a late responder to my recent dosing!
Posted 8/4/2021 4:13 AM (GMT -7)
I start Stelara in the next week or two. I’m hoping it works. Had a good run with Entyvio. Over 2 years.
Posted 8/5/2021 6:31 PM (GMT -7)
After a few months, including supplementing budesonide my doctor switched me to monthly injections and after a few more months I really noticed a big difference. After about 9 months I was pretty much fully in remission.
Posted 8/5/2021 6:46 PM (GMT -7)
Thanks tiredofallthispoop!
Did you ever go backwards during the first few months?
I am moving to every 4 weeks now.
Posted 8/6/2021 3:30 AM (GMT -7)
Start Stelera today. You can move it up to every 4 weeks? Similar to Entyvio.
I moved up to every 4 pretty quickly
Posted 8/6/2021 12:43 PM (GMT -7)

Hugo18 said...
Thanks tiredofallthispoop!
Did you ever go backwards during the first few months?
I am moving to every 4 weeks now.

Not really backwards but not a lot of forwards either. I was on Budesonide for a prolonged period (July thru November) trying to help it along. I was getting pretty bad when I started so there was a lot to overcome. I spent a few years on Entyvio where I progressed from left sided to pan colitis, then went off all meds for surgery in March. Started again in June, by then I progressed to some moderately severe symptoms.

I did see a nutritionist through all this and she helped me identify things that were problematic. I used to eat a lot of fruits and vegetables but have cut a lot out, and only have small quantities now. I pay attention to FODMAPS - things like watermelon draw water into the gut which was really affecting me.

I definitely notice a change in symptoms when I am due for the next shot.
Posted 8/7/2021 5:54 PM (GMT -7)
Thanks. I am definitely regressing. In all honesty not sure I wanted those 5 weeks of remission and then a return of symptoms. I hope a Stelera dose intensification is my answer. I was doing several Hyperbaric Oxygen Therapy sessions as well so maybe I need to return to those. Also was taking tacrolimus supps but gastro doesn’t believe that was making the difference.
Don’t know what brought on the response or what is stopping the response. Frustrating….
Posted 8/9/2021 10:37 AM (GMT -7)
Hugo, I hope the dose increase helps you. I never tried that myself because they tested my drug levels and they were twice as high as the goal. Tried an increased dose with Humira and it gave me such bad side effects, so I didn't feel like risking that again when my drug levels were already so high. Good luck!
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