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Crohn's Disease
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Posted 6/5/2018 3:32 PM (GMT 0)
I had my loading dose of Stelara on Friday, the infusion went well no issues. But I'd like to hear from other users and your thoughts on how well(or not) it is working for you. At this point for me it's more of a maintenance drug since the portion of bowel with active disease was removed during surgery. Hoping it will prevent any further damage at least for a while.


thx
Posted 6/5/2018 10:20 PM (GMT 0)
I'm no help on answering this but I will second this question, as I am three weeks post-op from my bowel resection and they are looking at putting me on a new maintenance drug soon. They have brought up stelera as I have exhausted humira. I too shouldn't have anymore active crohns as they removed that part and said there are no signs of crohns now. Hoping my remission lasts a long time!!
Posted 6/6/2018 12:13 AM (GMT 0)
Lamb, if I remember right, UB Tough was put on Stelara last year & had very good success with it. Lets hope the same holds true for you Gutsy.
Posted 6/6/2018 10:57 AM (GMT 0)
I am on stelara. Started it in dec. I do feel better, but did have a scope (when I had a massive GI) bleed in March, which showed a couple of stubborn ulcerations on either side of my latest reception. Now, that has been how my disease operated, so not sure if there is anyway to be in full remission for me. I was on humeria fo about 5years and felt good until the last year, but the damage from the ulcerations was bad.

The GI is thinking about adding back a second medication. I am going back to Mayo Clinic in August to get their input.
Posted 6/6/2018 1:45 PM (GMT 0)
Aw miro, I'm sorry you're still having issues. This lovely disease always throws us a curve ball doesn't it?
Posted 6/6/2018 4:11 PM (GMT 0)
Yep...sort of like the “jelly of the month club”.....lol
Posted 6/7/2018 1:01 PM (GMT 0)
Unfortunately my experience has not been good. From the start, I noticed severe fatigue and an odd cough, which seems to be from drainage/something "just sitting" at the back of my throat.

I have always been in to exercising, but have not been able to do much since starting the med last July. It seems to cause my muscles to knot up. I have also had multiple Staph and Fungal infections in my nose.

We were hoping this med & dilation would help my stricture, but no luck. Scheduled for a resection next Wednesday. My doc is now wanting me to try Entivio after surgery.

My body always seems to do the opposite than most when it comes to the medications. I can't wait for this med to get completely out of my body.

I hope you have a better experience than I.
Posted 6/7/2018 4:57 PM (GMT 0)
Ugh, sorry to hear that Rob. The only thing I've noticed and it might not even be related to the med is a huge increase in my appetite. If I didn't know better I'd swear I was on steroids!
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