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Remicade vs. Entyvio

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Ulcerative Colitis
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/22/2022 5:28 PM (GMT -8)
So here i go again, another nasty stubborn flare. Started with a cold, then Covid, then upper respiratory infection, Noreau virus, and now colitis is out of control. All this in past 4 weeks.
So I had tried Entyvio two years ago I only gave it six weeks to work and as a bonehead I stopped on my own.
Now my doctor wants to put me on Remicade because it’s the most studied one she says.
Looking back and doing some readings, I wanted to give Entyvio one more try before remicade.
What do you guys think?
I am on 40 mg a day of prednisone, and I can’t tell if it’s working or not, bleeding continues
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artvark
Regular Member
Joined : Dec 2013
Posts : 149
Posted 10/23/2022 5:19 AM (GMT -8)
Sorry things are going so poorly.
Will your doctor even prescribe Entyvio given your prior non-response and unwillingness to continue past the initial dosing? Why not follow your Dr’s recommdation?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 10/23/2022 6:54 AM (GMT -8)
You are in a tough spot, why not try Remicade, then if for some reason it doesn't work moving to Entyvio should be hassle free with the dr. True Remicade has been around much longer & it has a good track record for some people.

When do you see your dr again, soon I hope. You say the prednisone isn't helping I would move to get on something sooner rather than later.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/23/2022 8:38 AM (GMT -8)
They approved remicade for me and im scheduled this tuesday for first infusion. My dr wanted to push it out 1 more week because of the norovirus, but that was 1.5 weeks ago. I will double check w her tomorrow but i want to start on something asap. Prednisone looks like is working everywhere else in my body but the colon 😣 feels like slowly destroying everything.
My dr over the weekend gave me 1000 mg mesalamine supps which i had never tried before. They are slightly helping decrease anus inflammation. But bleeding continues again.
I just hope dr does not push it out 1 more week
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 10/23/2022 10:24 AM (GMT -8)
Hopefully you will be cleared to start Remicade on Tuesday. Be sure you are well hydrated the morning of the infusion, take a drink, a snack & something to entertain yourself with, phone or a tablet.

Keep us posted.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/23/2022 11:57 AM (GMT -8)
Thank you Susie! I did not think of hydration.
I am trying to make sense of what’s coming out of my behind. In the mornings I have two or three BMs and the poop is soft but it is digested not raw like prior flares. Mixed with mucus, slime, and fresh blood. But throughout the day i go every hour and this is what worries me: gasses come out with clear liquid, red blood, scattered pieces of poop. To me these are signs of a bad wound at end of my colon. Every hour. It’s zapping my energy.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 10/23/2022 6:04 PM (GMT -8)
Here’s hoping remicade kicks in fast for you, or at least fast enough to get you some relief on the way to remission

Let us know how it goes.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 10/23/2022 6:21 PM (GMT -8)
Everything you are describing is a nasty flare. I do hope you get to feeling better.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/23/2022 8:05 PM (GMT -8)
Is it possible to overdo the rectal mesalamine suppositories? Prescription says once a day, I am going 3 to 4 times a day. They’re only 1 g
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/24/2022 12:05 PM (GMT -8)
Is it normal to feel like prednisone has errored nearly 50% of all my muscles and strength in 4 days 😣
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 10/24/2022 4:01 PM (GMT -8)
Not sure what you mean about your muscles, however, prednisone does have some unpleasant side effects for some people. Did you talk to your dr about starting Remicade tomorrow?

You asked about the suppositories, stick with them, I'm thinking that may be a low dose.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 309
Posted 10/25/2022 5:07 AM (GMT -8)
D Bras....Prednisone makes my legs feel like they're made of rubber. Just weak and 'floppy'. After you taper down, that issue will resolve. Remicade did GREAT for me for 20+ years. Then tried Humira which didn't work. Then Entyvio which did good for approx. 2 years. Now Entyvio is not helping but I have no antibodies to it. I never had any bad reactions or side effects from Remicade or Entyvio. Good luck, you'll find one that will work.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/25/2022 5:22 AM (GMT -8)
Thank you so much guys! Yesterday was a rough day, muscle pain all over. But at the end of the night my intestines were at pease, i though i was going to have a good night. So i inserted a mesalamine supp and went to bed. Long and behold… i now believe i developed a reaction to mesalamine supps. I only slept for 2 hours, blood and gass and poop all night. Backpain, i think my kidneys are hurting.. this was probably the reason i felt like crap yesterday too:
“ Some people may have a reaction to this medicine (mesalamine suppositories) that looks like the signs of ulcerative colitis. Call your doctor right away if you have very bad belly pain or cramps, bloody stools, fever, headache, or rash.”

P.s. my appt is today 10 am. No going back. Gonna bring blanket, h2o, snacks. Takes 2+ hours they said

Post Edited (D.Brasco) : 10/25/2022 6:25:04 AM (GMT-7)

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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 10/25/2022 8:29 AM (GMT -8)
Good luck! Let us know how it goes!
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 10/29/2022 4:32 PM (GMT -8)
Things turned bad. I did urine and bloodwork Monday 10/24. Dr calls me 10/25 in am to say i have a uti and tells me to go to ER to get a CT scan because she feared a possible fistula.
Came to ER, got admitted, CT scan not terrible, no fistula, but they started the IV with corticosteroids and antibiotic.. the normal by the book ER response to colitis.
CT scan revealed slight inflammation right kidney lower part.
I’m still here in the hospital. On solid/bland diet. I’m tolerating ok. Some discomfort. Pure diarrhea of course. Oh and incidentally they found out i’m Covid+ … still positive from Sept 27.
Well Last night was the first night i could sleep through it. So i feel progress.
Plan is to give it a week after discharge and try to start remicade.
Question: any contraindications to taking probiotics now while on IV antibiotics and IV corticosteroids?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 10/30/2022 9:37 AM (GMT -8)
Wow, so sorry to read this! about the covid, I wonder if you had a relapse from when you got it originally.

Ask your dr or even a nurse about the probiotic, when I was on IV antibiotics for c-diff, they had me on them. When I was released with oral antibiotics the dr told me to buy OTC Florastor. You have to take the probiotic so many hours after the antibiotics. Taking them will not affect the steroids.

Keep us posted on how your are doing.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 10/30/2022 9:40 AM (GMT -8)
Wow. So sorry you’re going through such a hard time. Being in the hospital is not fun. I hope your GI is attending you! I know there is an issue with hospitals wanting to have their own in-house “hospitalists” which can result (in my bad experience anyway) with an inconsistent and subpar level of care, especially dealing with UC.

I don’t believe steroids interfere with probiotics? However antibiotics definitely will do it’s probably best to wait til you’re home and off antibiotics and then double or triple up for a while to replenish your flora.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 11/10/2022 11:45 AM (GMT -8)
I got the first dose of Remicade yesterday. Any recommendations or suggestions from any of you that have been on it for years would be much appreciated.
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mindoverbutter
Regular Member
Joined : May 2011
Posts : 250
Posted 11/11/2022 12:16 PM (GMT -8)
Hey I was on inflectra for a year it worked wonders. Im so sorry to hear about your hospitlization. Stay hydrated on infusion days, hopefully the remicade will help kickstart the prednisone and you should get some major relief soon. I agree with the Florastor as well. Try one pill a day at first, then 1 pill 2x a day, then 2 pills 2x a day it should slow things down. I recommend meditation and mindfulness to reduce stress, and try to find a CBD supplement. Eat as you wish and avoid foods, maybe roughage, that would aggravate things. Hope u get to feeling better soon.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 11/11/2022 12:22 PM (GMT -8)
I hope it works for you. Are you back home now?
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 11/11/2022 1:32 PM (GMT -8)
Hi Sara and everyone, yes I am home now. Got discharged on 10/30 - after 5 days there. I have to say after inflectra, which from what i read is just a cheaper version of infliximab (Remicade), i have seen positive things already. My stools were already getting formed but looks like inflectra is helping a lot. I am down to 10 mg a day prednisone which i feel i can taper off in a couple days.
One side effect so far - i am constantly sleeping or wanting to lay down. I have to remind myself to drink more fluids.
Still have some left side discomfort.
Urgency is still there. Cannot hold it.
But no pain when going. I squat and put zero pressure.. just let the intestines push out whatever they want. When i was inflamed i was not always able to do this - my natural instinct to push would kick it and just make everything worse.
I’ll keep you guys posted.
I’ll try to pick up some weights - i’ve lost 25 lbs this year. I also do stationary cycle once a day. Energy levels slowly coming up.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2469
Posted 11/11/2022 5:11 PM (GMT -8)
It's good that you are already seeing a response from the inflectra! Don't get discouraged if you have some setbacks along the way and have a bad day. Healing isn't always improvements everyday ... sometimes it's 2 steps forward and 1 back. Just hang in there. Glad you are feeling better!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 11/19/2022 5:29 PM (GMT -8)
D. Brasco, just checking on you to see how you are doing. Give us an update when you get a minute.

Take care.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 11/23/2022 9:03 PM (GMT -8)
Hey Susie and all,
So i’m doing much better on inflectra. Was gonna get my second dose today but i came down with a cold so they rescheduled it.
One thing that i still see is excessive mucus coming out first during bowel movement. And today it’s like cloudy mucus with some streaks of blood mixed in with the mucus. But then the rest of the poop seems decent and well formed. What’s up with the last section of the colon?!?! Is it just taking longer to heal you think?
The urgency has definitely decreased.
I’m off prednisone, i’ve gained 5-6 lbs since coming out of hospital.. god i could not lift 25 lbs. Now i feel stronger. But the mucus and light blood at the tip of every poop concerns me.
I must say i’m thankful for the progress. I know a lot of others struggle much worse
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 11/24/2022 10:51 AM (GMT -8)
I forget how long/how many infusions of inflectra have you had?

If it’s less than 4 months you still have plenty of time yet to see more improvements. Early on you’ll see some backsliding right before your next infusion. Having to postpone your infusion is probably why you’re seeing more symptoms right now. Rectals will really help tide you over at this point, if you can use them.
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