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Ulcerative Colitis
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Posted 9/10/2019 12:18 PM (GMT -5)
My daughter (24 yo) has been in remission for more than a year and just had a colonoscopy with no evidence of disease. We have discussed stopping simponi and going back on ASA meds. We haven't yet, mostly because we are nervous about a relapse, and because she had just relocated to a new area and we don't have established resources there yet (see post below). Briefly, she developed a pan colitis around six years ago. It didn't respond to ASA or to steroids; our GI doc took us straight to simponi which worked well with no other adjunct meds. We have unfortunately had turnover in our GI docs; the current one is luke warm about dropping the simponi although she has signed off that approach. I haven't been able to find any in depth resources on this topic; does anyone know of reviews? Do you all have advice on how to proceed? Any help would be so greatly appreciated!
Posted 9/10/2019 1:34 PM (GMT -5)
Since simponi is working for her and she did not respond to the lower tier meds before I think she should stay on the simponi. She's risking a flare if she stops and simponi may not work again if she tries to go back on it later. It's so hard to get to a sustained remission ... stay with what is working.

If it ain't broke don't fix it ;)
Posted 9/10/2019 2:05 PM (GMT -5)
I agree with CCinPA.
Posted 9/10/2019 2:26 PM (GMT -5)
I agree with Sara14, who agrees with CCinPA. Don't fix what isn't broken. Stay on the Simponi. The current clinical recommendation is to stay on a biologic for as long as it works for you. Discontinuation has the risks of flareup and also risk of antibody development against Simponi, meaning Simponi may no longer work if you try later to restart it.

A few of the EU block countries have experimented with stopping biologics during sustained remissions. However, that is not a broad practice used the world over, yet. I think the verdict is still out on that one, whether it is successful enough to warrant usage.
Posted 9/10/2019 3:23 PM (GMT -5)
I agree with the them,
Posted 9/10/2019 5:30 PM (GMT -5)
I think after I’ve been on Stelara over a year I will go off it, and like your daughter, I didn’t respond to other things. My dr is okay with it, but yes, there’s a chance of flaring again and there’s a chance it may not work if I had to reintroduce it. I say that because I understand where you are coming from. Some people want to take the chance. I heard it’s a 50/50 shot. I’m making sure I can stick to a healthy diet and exercise routine before I drop it. It’s simply a personal choice. My dr said some people do fine and some end up worse. No one can tell her or you what will happen, as you know, so think about it a long time!
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