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Remicade infusion...long term...

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Ulcerative Colitis
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Posted 9/27/2022 11:06 AM (GMT -8)
[It has been a long while since I wrote,,,but just wanted to say my son has been on Remicade for 14 years...every 6 weeks..infusion....He just had a complete blood work up and all was perfectly normal,,,in range ....
He is 54 and looks healthy...I am amazed he is staying fine...no side affects...go figure. He is not a healthy eater either...loves junk food,,,only eats meat and potaoes...no veggies,,,,no fruit..just meat and fries or baked potatoes. I have no idea how he stays so healthy. His last colonoscopy was perfect...no colitis...The doctor said that if he stopped his Remicade,,he would get a flare...and that is why he keeps him on Remicade. My son is afraid to stop or take anything else since this is working so well for him....I just wondered if anyone else has been on it for this long, and if you had any thing bad happen later. We don't know what to think. My son just considers himself a lucky guy to have this drug that keep all those horrible painful flares he used to have in the beginning that no pills helped. But only Remicade helps...He has an auto immune problem and the Remicade keeps it normal....
Posted 9/27/2022 12:17 PM (GMT -8)
There is a member in the crohns forum that has been on Remicade since the trials, over 20 years with remission. The member checks in once a year to keep the board updated.

As long as it keeps him in remission & he's not having any other issues, there is no reason to rock the boat. I hope it lasts indefinitely for him.
Posted 9/27/2022 3:48 PM (GMT -8)
I like hearing about long term success with Remicade. I have only been on it since 2019 so I am hoping for many more years of success to come. There are some others here who have been on it for a long time with no issues.

Congrats to your son! (Though it wouldn't hurt him to eat an apple or a banana occasionally lol)
Posted 9/29/2022 11:15 AM (GMT -8)
That's wonderful he's been in remission so long.
Posted 10/1/2022 8:29 AM (GMT -8)
That is really awesome to know - not many people share positive stories that last years, since they're out enjoying life instead!
Posted 10/1/2022 10:10 AM (GMT -8)
Oh Sara.
So sorry Remicade didn't work for you...or any of the other meds. As I mentioned, Matt takes no medicine whatsoever....not even Vitamins that I wish he would...and is a junk food eater....If you saw him , you would think he was the healthiest guy ever...tall,,,6 foot 5 inches...really handsome...and nice and slender...He takes after my dad...same body type...and long life...my dad suffered with ulcers as long as I can remember.but lived till his 80's...go figure huh? Just pure luck with him. never had any kind of side affect even...so I hope it lasts a long time....
I hope you get relief....

Sara14 said...
That's wonderful he's been in remission so long.

Posted 10/2/2022 4:28 AM (GMT -8)
I began Remicade around 1998...before it was approved for UC. I remained on it for well over 20 years and had wonderful results. I never had any side effects and remained on it until I built up antibodies to it. Best thing I was ever prescribed in all these years and worked much better than anything else. Best of luck to your son.
Posted 10/2/2022 2:43 PM (GMT -8)
Curious about your antibodies....Matt said they tested him and he has none...so that's good for now...So what happens if you them and have to quit Remicade..?? What do you take...?? Matt's afraid one day that might happen. Thanks for your reply.
Posted 10/3/2022 6:26 PM (GMT -8)
Doctor tried me on Humira. Didn't work at all. Then Entyvio... I've been getting infusions approx. 2 years with good results. Best of luck and don't be concerned about antibodies until it happens. Remicade is some good stuff.
Posted 10/5/2022 4:58 PM (GMT -8)
There are newer biologics and more coming on line quite often. Several on here, for instance, found remission on xeljanz when nothing else had worked. There’s also stelara, the newer rinvoq and another newer one whose name escapes me. And who knows how many more are in the pipeline and awaiting approval.
Posted 10/6/2022 6:56 AM (GMT -8)
Wow!! This is really interesting! Fingers crossed. I have been on Remicade for almost 7 years, have no antibodies, too but Remicade failed to control my rectal inflammation and I’m seriously thinking of switching to another biologic.
Posted 10/6/2022 10:01 AM (GMT -8)
Good luck to all you folks who have this nasty disease....I remember the hell my son went through in the beginning,,until one doctor put him on Remicade....I pray one day they will find a cure . Hope the new ones will just get better and better.
Posted 10/6/2022 4:45 PM (GMT -8)
Xeljanz and rinvoq are NOT biologics. Nor is zeposia. Which means that the body does not build antibodies to them.
Posted 10/7/2022 11:59 PM (GMT -8)

cra43 said...
Oh Sara.
So sorry Remicade didn't work for you...or any of the other meds. As I mentioned, Matt takes no medicine whatsoever....not even Vitamins that I wish he would...and is a junk food eater....If you saw him , you would think he was the healthiest guy ever...tall,,,6 foot 5 inches...really handsome...and nice and slender...He takes after my dad...same body type...and long life...my dad suffered with ulcers as long as I can remember.but lived till his 80's...go figure huh? Just pure luck with him. never had any kind of side affect even...so I hope it lasts a long time....
I hope you get relief....

Sara14 said...
That's wonderful he's been in remission so long.

Oh, I've been in remission for a year now on Xeljanz, but thank you! Hope it continues much longer for both your son and me! Remicade worked for me but only for 9 weeks.
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