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Remission without meds possible?

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Ulcerative Colitis
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RyanC
Regular Member
Joined : Jul 2017
Posts : 100
Posted 3/16/2020 12:25 PM (GMT -7)
Haven’t had Entyvio since January 6, trying to get on Xeljanz but my insurance is not wanting to cover it.
My question is has anyone tried not taking meds?
I’m not flaring or have any UC symptoms.

I’m tired of the infusions, medications all together. I haven’t had any problem or flare since Aug 2017. Just wondering what happens if I do stop medication all together. So far so good. Any comments? Is it possible for UC to “Go away” ?
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16197
Posted 3/16/2020 1:07 PM (GMT -7)
It's technically possible to attain a remission without meds, spontaneous-remission is documented within the UC medical literature. Unfortunately, it is not a common phenomenon, and not easily repeatable among many. There's a couple posters here who are med-free. It's one of those things where every boy dreams of being a professional athlete when he grows up and few actually do. UC does not go away and is not cured, rather it is just a remission. Those who stay on their meds tend to have the longest remissions and most infrequent/short/mild flares though.
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3694
Posted 3/16/2020 2:11 PM (GMT -7)
Going without meds never worked for me. Even after colectomy
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/16/2020 3:05 PM (GMT -7)
I'd try it if I were in your shoes.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 928
Posted 3/16/2020 3:15 PM (GMT -7)
There is a risk of a sudden and severe flare down the road if you don't take any medication, something which I personally wouldn't want to risk in the current environment. You could try managing on 5ASAs if you're in remission, it might take the edge off any future flare.
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RyanC
Regular Member
Joined : Jul 2017
Posts : 100
Posted 3/16/2020 4:39 PM (GMT -7)
Unfortunately I’m allergic to mesalamine, but I do respond to prednisone very well.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 3/16/2020 10:07 PM (GMT -7)
If you didn't have any problems with Entyvio, why are you stopping it? It's so hard to find a medication that works I'd hold onto something that does unless it had severe side effects. You would be a little late for your next infusion but likely not too late. I loved Entyvio ... felt completely 100% normal when I was on it until it stopped working for me.

The thought of being able to be med free is enticing. If you go that route, I hope it works for you. No time is a good time for a flare, but right now is really not a good time. Do your research about what has worked for others and see what works for you. I doubt that you can just be like a non UC person and eat and drink whatever you want, but then again who knows? You could be lucky! Good luck with whatever you decide.
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RyanC
Regular Member
Joined : Jul 2017
Posts : 100
Posted 3/17/2020 9:16 AM (GMT -7)
Entyvio and Remicade I had weight gain memory problems, hard to focus, and fatigue. Side effects that I tried to get over but unfortunately could not. Appreciate the good luck. I’ve been completely normal as far as diet and drinking as well. No problems with any food or alcohol. Love me some whiskey and bbq. Hopefully it won’t come back and my immune system stays strong. Definitely worried about corona though.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 3/17/2020 9:46 AM (GMT -7)
I haven't heard of anyone here who is med free without diet changes and/or supplements. UC is forever. Either meds or other changes will be needed to keep you in you in remission. Right now Entyvio is what is allowing you to be normal. Unfortunately that's unlikely to last long term without doing something else.

In my opinion weight gain shouldn't be a bad side effect. Eat less bbq & whiskey and you will lose weight lol. Memory, focus & fatigue are vague symptoms and can often be alleviated with a healthier diet -- more fruits & vegetables, sleeping enough, and just a brisk walk every day.

For what it's worth ... you were bad enough to have had to go on biologics in the first place. Entyvio has apparently worked very well for you. You are playing Russian roulette by stopping it over a few extra pounds.

I also know that we all have to find our own way with this disease and I suspect you are committed to trying to go med free without other changes. I hope that for you it somehow works.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8594
Posted 3/17/2020 10:27 AM (GMT -7)
it's possible for sure - I've been med-free since I stopped taking meds ;-)

but you need a plan - don't just go all willy nelson nilly - I went thru 3 or 4 flares before I got it right - be prepared !

TT
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3558
Posted 3/17/2020 2:45 PM (GMT -7)
Yes it is possible but very unlikely that you can remain in remission med-free. I wouldn't recommend it for anyone. The best way to stay in remission with the least amount of side effects is to take oral mesalamine meds reinforced with rectal meds as needed. These have the fewest side effects.

The OP said
"Unfortunately I’m allergic to mesalamine"

After multiple attempts I discovered that I am also allergic to mesalamines. But when I first joined the forum I read stories from IBDers, e.g. imagardener2, who said they were able to manage their inflammation largely through diet reinforced with supplements.

A food diary should help you to find your food triggers. You can check out our signatures to see what supplements that you may want to try. Probiotics and psyllium are popular but finding compatible supplements can also be a hit-or-miss. For example some people swear by boswellia but I find that it makes my symptoms worse. The reverse is true with curcumin.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/17/2020 6:35 PM (GMT -7)
You weren't even flaring when you started Entyvio, correct? So you have no idea if it helped at all, right? I believe you that your side effects were from the meds. I had horrible side effects from Humira and Imuran, some that I'm still dealing with one month after Humira. The medicine takes 3 months to leave your system completely, apparently, so I'm just hoping they go away completely soon.
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RyanC
Regular Member
Joined : Jul 2017
Posts : 100
Posted 3/17/2020 7:07 PM (GMT -7)
So out of the Hospital in July 2017, I never flared after we did IV pred and started Remicade. Did rem for a year and then Entyvio. Since 2017 I’ve never had an UC symptoms. Everyone will say because you were on biologics you had no symptoms but I felt like crap all the time while on them. So for me quality of life is more important. Maybe it comes back maybe not. If if does at least I’ve gained some weight back for reserves. Ready to feel normal again and infusion centers are depressing.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/17/2020 7:20 PM (GMT -7)
That's what I thought I remembered from your other posts. I completely understand. And no one knows if the reason you didn't flare was because of the biologics. Good luck.
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 213
Posted 3/20/2020 12:11 PM (GMT -7)
Entyvio did nothing for me, in fact I went from left sided to pan colitis, and suffered horribly from joint and muscle pains. It totally affected quality of life. Every time I suggested maybe the Entyvio was the problem the doctors shrugged and wrote another prescription. My last dose was Dec 30, 2019 and I feel so much better!! My UC symptoms are about the same as they were on Entyvio but I have no joint or muscle pain. I was supposed to start Stelara a few weeks after the surgery I had last week but I think that will get pushed out. I am staying home except for trips to get groceries, which is pretty much how things were before Coronavirus so that's ok with me. So I guess what I am trying to say is maybe you'll be ok without it for awhile at least. I think I have suffered more from pretty much every drug I have tried than from the UC itself. I'm starting to consider no more drugs and was going to suggest I defer starting Stelara until after my next colonoscopy, whenever the heck that may be now.

Stay well everyone!
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aloewell
New Member
Joined : Apr 2017
Posts : 7
Posted 3/22/2020 10:20 PM (GMT -7)
I was diagnosed with moderate to severe ulcerative colitis in 2011. I took Predisone short-term and Asacol long-term. After gaining knowledge about the disease, nutrition, and supplements, I'm now symptom and medicine-free for the past 5 years. It is possible.
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limey
Regular Member
Joined : Sep 2016
Posts : 164
Posted 3/23/2020 5:21 AM (GMT -7)
Im on Xeljanz and last Oct I had to give up my meds because of a knee replacement.
Because of a slight infection I was off my Xeljanz for 6 weeks and it was only towards the end that I felt I needed it again.
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