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Starting Remicade


Sat, February 27, 2021 10:52 AM

I was diagnosed with UC in October 2020.  My doctor put me on Mesalimine suppositories at first, then I started a Budesonide course.  I am still have symptoms so now my doctor has proposed that I start Remicade infusions.  Is there anything I should know or do to prepare for this biologic treatment?  I am really hoping that i find some relief with the remicade but am a little worried starting it.  Any advice would be helpful.

FPO mcgillk
Joined Jan 17, 2021

Tue, June 15, 2021 4:22 PM

Reply posted for mcgillk.

Definitely bring something something to the infusion to do while you sit. I started remicade in college, studied during my infusions and now I work through my infusions. Been on remicade for 17 years, diagnosed 22 years ago and was hesitant to try remicade since it was so new. I can't imagine my life without it now, although insurance is forcing me to switch from remicade. Getting an infusion every 4 weeks for 17 years, quite a lot of scar tissue. Still working though! Praying that he finds a medication that helps him into remission.

FPO Kwpharmd
Joined Jun 15, 2021

Tue, May 18, 2021 8:19 AM

Reply posted for ddp.

Thx - he goes today for 1st infusion. 

FPO JRosemom
Joined May 15, 2021

Sun, May 16, 2021 9:26 PM

Reply posted for JRosemom.

Ah food. Sometimes I wish it wasn't a necessity! It is very different for each person. Keeping a food diary can be helpful to see which foods are triggers. To be honest, sometimes I eat a food that I know will make me feel sick just because I crave it. Even though Remicade works well for me - no resections, bowel obstructions etc. I still have some symptoms- diarrhea, some abdominal pain, achy joints, nausea off and on. For me those are manageable. Wishing him all the best!

FPO ddp
Joined Nov 14, 2017

Sun, May 16, 2021 9:00 PM

Reply posted for ddp.

Thank you for sharing those tips on infusion day- He's not looking forward to the two hour timeline, but if it works- it'll be worth it - especially since Stelara fail..
Do you have any food limits- I know everyone is different, but his gluten and dairy free life hasn't kept him out of this two year flare..  curious. If we only knew what will work for sure.  I'm so happy to hear you've had such long term success! 

thanks again

FPO JRosemom
Joined May 15, 2021

Sat, May 15, 2021 8:26 PM

Reply posted for JRosemom.

I hope the Remicade does the trick for him. Don't be surprised if they actually use Inflectra, a biosimilar for Remicade. I was changed over a couple of years ago with no issues. Also, once he has a few infusions with no issues and it is working well, he can ask for a rapid infusion process. Then the infusion only takes about an hour instead of four. Drink water, bring snacks and something to do to pass the time. Be well!

FPO ddp
Joined Nov 14, 2017

Sat, May 15, 2021 8:14 PM

Reply posted for ddp.

Hi Dawn,
my 21 yo son is about to start Remicade.  He's tried the mesalamines, and steroids.  He tried Stelara in the Fall and did not work. Dr. prescribed Remicade or Entyvio.  Because he had such bad side effects from steroids that last go around , dr suggested Remicade.  I'm of course worried for him to try another biologic,  and to be let down again- so it's good to hear your success.  That's what we hope for - Remission over worrying about the adverse side effects.
Any tips would be appreciated as we head down this new road.  Of course his friends want him out and with them at the beach and doing what 21 yo guys do-  waiting with baited breath. 

FPO JRosemom
Joined May 15, 2021

Tue, April 13, 2021 1:33 PM

Reply posted for mcgillk.

Hi!  How are your Remicade treatments going?  I'm looking to start Entyvio, but am wondering why my GI hasn't even mentioned Remicade.  So many posts of here from people who have had good luck with it.  Just curious if Entyvio was even discussed with you, or what reason your doc gave you for going with Remicade.

FPO Tamara L
Joined Apr 11, 2021

Mon, April 05, 2021 4:41 PM

Reply posted for mcgillk.

Hi,
I just saw your post. I hope your Remicade treatments are working out for you. I have been on Remicade (and now Inflectra) for 19 years for Crohn's.  Prior to that I had tried nearly every other medication.  Since starting on Remicade I haven't had any surgeries and only minor setbacks that a course of prednisone usually took care of.
The infusions do take time though you can move to a rapid infusion process if you tolerate it well . Then it is only a one-hour process. The only issue I am having now, after so many years, is that my veins are getting difficult to access.
Hope Remicade works for you too!
Best,
Dawn

FPO ddp
Joined Nov 14, 2017

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