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Does anyone get on a biologic and live happily ever after?

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Ulcerative Colitis
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Posted 12/24/2016 2:07 AM (GMT 0)
I'm anticipating going on a biologic in the next few months as Lialda has given me clinical but not endoscopic remission. Admittedly, whenever I read these forums I get a bit depressed as UC seems like an endless roller coaster. So my question is, does anyone with mild-mod UC get put on a biologic, see remission and just live happily ever after (on the biologic, of course)?

I realize that if these folks exist, they probably don't spend much/any time on a UC forum thinking/talking/obsessing about their UC, but do any of us actually know if these stories exist? Would give me a lot more hope than thinking that, yes, it might work for a few months, but then it will stop working and you'll spin the wheel on another one until they finally just remove your colon.

Any "Humira TV Commercial" type stories out there in real life (where you take the drug and then go running through a field of wildflowers with really white teeth and a picnic basket)?

sonvolt
Posted 12/24/2016 2:58 AM (GMT 0)
I got a good 2.5 year histological/clinical remission from remicade. Flared after reducing meds though...
Posted 12/24/2016 5:27 AM (GMT 0)
Well I never ran through fields of flowers but I got significantl remission from Remicade. Symptom free and no sign of inflammation. I was on Remicade for 8 years and was symptom free during that time. Having an infusion every 8 weeks was the only thing that reminded me hey you have Crohn's Colitis.

It did allow me to travel a lot and enjoy life pretty normally.
Posted 12/24/2016 5:56 AM (GMT 0)
These stories are very encouraging, thanks folks. It sounds like Remicade has been the silver bullet for all of you (of was for a while). Do you think I should request Remicade when the biologic discussion comes up, or go for something newer like Humira? Frankly, I'm not psyched about having to maintain a supply of the drug, keep it refrigerated (or cold when traveling), etc. I kind of like the notion of going to a medical office once every few weeks for an infusion (as opposed to managing it on my own). Is Remicade a good first choice, in your opinion?

My symptoms have always been mild (loose stool, almost always in the morning, never any visible blood). Apparently though, when scoped, my my entire colon appears inflamed and the Lialda isn't changing that.

sonvolt
Posted 12/24/2016 8:37 AM (GMT 0)
remicade is possibly slightly more effective on average - I assume individual results vary. But it is more likely than some to develop antibodies. but that may take a while and other options may come along in mean time.
Posted 12/24/2016 1:47 PM (GMT 0)
I've been on Entyvio since July and have no symptoms at all now. Had a scope last week and there were no visual signs of active disease and the pathology report of the biopsies said there were only signs of inactive disease in a few patches. I feel like I remember being before I had UC!

I picked Entyvio because I had never been on a biologic before and it only targets the colon rather than being systemic like all the other biologics. So far I am loving it. After 3 loading doses in the 1st 6 weeks I now go for an infusion every 8 weeks. The other advantage to Entyvio is that it's just a half hour infusion. Remicade is a couple hours. Humira would have been my next choice because you give yourself a shot every 2 weeks in your own home.

Remicade seems to be the most powerful and fast acting. If you have severe symptoms that would probably be the best choice. If you have milder symptoms and have some time for the full effects to kick in Humira or Entyvio might be right for you. Entyvio really kicked in for me after my 3rd infusion (6 weeks) and by the time I had my 4th infusion at 14 weeks I was symptom free. Just had my 5th infusion yesterday.
Posted 12/24/2016 2:03 PM (GMT 0)
After flaring and simmering for years I was put on Remicade 5 years ago. I've now been in remission for almost 4 years. I don't know what my future holds but I want to be optimistic and continue on this good trend. I now lead a very active and symptom free life.
Posted 12/24/2016 3:04 PM (GMT 0)
My friend with Crohn's got 12 years of remission out of humira. He recently switched to another biologic due to (reversible) side effects. He has Crohn's pretty bad too, already had one resection before biologics came along. You will probably always be on the rollercoaster, the goal is to have nice long periods where things are good, and minimize the times when you are down.
Posted 12/24/2016 5:08 PM (GMT 0)
It's my 3 year anniversary of being on Simponi and so far, I haven't flared. I didn't get a lot out of Remicade before it failed and then Humira made me deathly ill. I don't even take it every 4 weeks anymore- usually every 5 or 6 weeks now.

I do take it along with other medications but I refuse to go off of any of them because I am ABSOLUTELY TERRIFIED of flaring again. I was in the hospital constantly for years and haven't had a stay since October 2013.

I just deal with any medication side effects because my UC flaring is by far the worse thing that has ever happened to me in my life.
Posted 12/24/2016 6:19 PM (GMT 0)
Just strictly speaking of being on a biologic long term: my mom has rheumatoid arthritis and has been on Remicade to treat it for the past 12 years. No problems from the remi itself being on it that long.
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