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Remicade working?

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Ulcerative Colitis
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Posted 3/13/2022 12:03 PM (GMT 0)
Had the 2 loading doses so far. Thought I was doing better. Mornings not so good. Blood has stopped so that’s good. Why the mornings? Sometimes after eating I have terrible cramps. Thanks to dicyclomine I have some relief. I know it’s too early to be worried. I so want this to work! Last loading dose is on the 30th.
Read on one medical site that a medical bracelet or necklace should be worn. Listing meds I guess. Anyone on here wear one? Would never think I needed one.
Posted 3/13/2022 12:58 PM (GMT 0)
When i went into remission on xeljanz, the first change was that i stopped having bowel movements in the evening/night. Everything happened in the morning. Took a while (months) for the morning symptoms to resolve.
Posted 3/13/2022 1:09 PM (GMT 0)
You are right, it's still early. It took me a good 6 months to really tell a difference when I was put on Remicade for crohns. I never got a bracelet or anything like that.

I have a medication list that I carry at all times, including the medications I am allergic to, my husband also has a copy of my list. He is on a lot of heart meds, diabetes & a pacemaker, so I have a copy of his info too.

Take good care of yourself.
Posted 3/13/2022 2:39 PM (GMT 0)
Agree a little early to say for certain. Flares are always a mixed message thing, full of contradicting signs, that only more time clarifies.

I believe a medical bracelet is only necessary for maintenance use of steroids like Pred. For a while, I wrote all of my medicines on my health insurance card in my wallet. Always have that with me, and if I'm injured or incapacitated then someone is bound to go for id and insurance when helping me.
Posted 3/13/2022 3:30 PM (GMT 0)
Hey I poop,
Didn’t know you can take Remicade as needed. Thought it was an ongoing med as long as it was working.
Posted 3/14/2022 1:32 PM (GMT 0)
Faithmac, I've read on here IPoop has infusions every 8 weeks, he's been on Remicade I believe about 8 years.
Posted 3/14/2022 2:34 PM (GMT 0)
I think when ipoop updated his sig he forgot to remove "as needed". That was probably for enemas.

Remicade is an ongoing med that you will be on for many many years ... as long as it keeps working.

I was under the impression that the med alert bracelets were for people who have life threatening conditions -- like insulin dependent diabetes, or organ transplant patients. But I could be entirely wrong. My docs never mentioned that I should have one for biologics.
Posted 3/15/2022 2:27 AM (GMT 0)
CCinPA, Hopefully Remicade starts working. How long did It take till you saw an improvement in symptoms? My third loading dose is on the 30th. Have to have blood drawn the day before infusion.
Is that kind of early to be done. Going to ask the doctor on Thursday. Have a video chat with him. I really would rather see him in person. I’m not fond of doing it this way. He’s in the process of moving into a new building that’s not finished yet. Otherwise a 2 hour drive. Wondering why he’s not waiting till after the next infusion and blood work for levels. I can’t really say it’s helping much at this time. Not bleeding right now so I guess that’s an improvement.
Posted 3/15/2022 10:05 AM (GMT 0)
I was on high doses of pred when I started remi, but by the end of my loading doses I had definite improvement. I had my first test for antibodies right before my 1st maintenance dose at my request (my doc said it was early for the test, but did it anyway) because I was off pred and still had lingering symptoms -- stool wasn't always fully formed, occasional blood and about 4-5 bms/day. Even with these symptoms I was so far from when I started I was willing to give it more time, but I wanted to make sure I didn't have antibodies (I had antibodies to Humira). The test showed no antibodies and the levels were on the low end of normal so he increased my dosage. That helped but I would start getting more symptoms a couple weeks before my infusion, so we went to 6 weeks, That still didn't get me completely there so we went to 4 weeks before giving up on it and that finally got me to complete remission,

As long as you are doing better don't give up on it. For some people it works really fast, but for me it it was a long slow process.
Posted 3/15/2022 11:31 AM (GMT 0)
So what made you stop taking it? What put you in remission?
Not too many options left
My primary said last week why not remove your colon. Two of her patients did. Couldn’t believe she even mentioned it. She mentioned they were much worse then me. How would she know? She’s a good Doc so I let that slip by. Not that it’s a bad thing. I’m not ready for that step yet . Haven’t exhausted all options yet.
Posted 3/15/2022 5:02 PM (GMT 0)
She’s still on remicade. She meant that instead of giving up on remicade completely, they went to 4 week infusions and that worked for her. 😀
Posted 3/15/2022 5:14 PM (GMT 0)
Yeh -- what Flowers said smile

Remicade 10mg/4weeks is what finally got me to the promised land of remission.

Looks like you have tried nearly everything except Xeljanz. So if you aren't ready for surgery maybe you could try that first. Still if you are getting any response to remicade you might want to hang with it and try different doses/frequency before stopping it. It was about 2 years until I reached full remission, but I was functional after my loading doses and was able to live pretty normally so I had the patience to wait. If I had still been going 10+/times a day with bloody diarrhea I would not have stayed on it.
Posted 3/15/2022 6:42 PM (GMT 0)
Hi Faithmac,

Like CCinPA, I've been tinkering with the remicade dose for about a year now. There's definitely been improvement since first starting, but its a really slow progression. I feel like I take 1 step forward and 3 steps back. (Now on 10mg/kg every 4 weeks) Like you though, its been recommended that maybe its best if I get my colon removed, but I'm not ready to give up either.

I'm still on 7.5mg of pred, hydrocort enema's, and 150mg of imuran. I just started this new dose a couple weeks ago. I was hoping it would clear remaining symptoms over night, but it hasn't. I currently have about 5-7 bms a day, while far from perfect, way better than when I first started. I'm hoping things continue to improve so I can get off the prednisone and enema's...

I hope you see improvement soon!
Posted 3/15/2022 7:19 PM (GMT 0)
Thanks everyone for the imput.
I am functional! Just uncomfortable is what I should say. No blood but everything else. I’ve tried a lot of biologics most I had remission for a few years. The only one that didn’t work was Stelara. Entyvio worked the fastest.
I have patience and will see how things go. Part of the day I’m fine. In the morning not so much. I have a lot of meds in the house. Been trying them all. This is such a nasty DZ!
Posted 3/18/2022 1:56 PM (GMT 0)
Saw my Doctor yesterday. Wanted to know why I’m having a blood test right before the third loading dose. He moves pretty fast with dosing. He wants to know my levels so he can either move my infusions up or increase the dosage. Better this way instead of waiting and suffering . He actually bumped my Entyvio from 8 weeks to 4 within a few months of taking it. Big difference with that change.
I’m doing a little better then from when I started Remi but not close to remission by any means.
Posted 3/21/2022 9:28 PM (GMT 0)
I hope it gets you into remission soon. You still have Xeljanz if this doesn't work.

(P.S. I love how this thread is everyone responding explaining everyone else's med situation and clarifying what the person before them meant to type, lol. Funny we know so much about each other's personal medical history but have never met).
Posted 3/22/2022 12:01 PM (GMT 0)
Sara,
Definitely not in remission or anywhere near.
Hope this starts doing something!
Posted 3/22/2022 2:02 PM (GMT 0)
I hope so too. It sucks waiting.
Posted 3/22/2022 7:11 PM (GMT 0)
It sure does. Was feeling a little better the first couple of weeks after infusion. Next week I have blood taken and third loading.
If the levels aren’t good maybe he’ll change things
Posted 3/23/2022 2:01 PM (GMT 0)
Faithmac,
I think what your doc is doing with the level testing is a really good idea. My GI does that all the time. We have changed my Remicade dosing and timing several times.... especially at the beginning.

I hope you reach remission with this.

Clo
Posted 3/23/2022 2:20 PM (GMT 0)
Thanks Clo!
Wish it was next week . Try not to complain too much especially to my husband. I sound like a broken record. Really have not felt good for quite some time. Trying to stay positive. Never ending battle.

Faith
Posted 3/23/2022 2:43 PM (GMT 0)
Faithmac, you've had a lot to deal with besides the UC issues. Getting ran over by a car was a lot of trauma overall. I do hope Remicade works for you, you still have options with it. Good to read your dr is proactive too.

I wouldn't worry too much about the husband, like you, he is wanting you well.
Posted 3/23/2022 2:53 PM (GMT 0)
Straydog,

I know just tired of complaining and not feeling good. Was working before my accident. At least that kept my mind off all of this. I would make a terrible Massage Therapist these days. Bad energy!

Faith
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