HealingWell
Search Close Search
☰

Flare after a year on remicade - anyone with similar experience?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/4/2015 4:57 AM (GMT 0)
Hi, after a year on remicade, my son is in a flare again. Started at the start of Jan. Have been on an 8-week regimen, next infusion was Feb 7 but doc accelerated to tomorrow. We aren't sure yet if remicade has stopped working - remicade antibody and levels blood test has been ordered before infusion. Also c-diff test is ordered. Had new Doc, he said we should have been on 6 MP or methotrexate as well to make remicade work longer. He said if it doesn't improve a week after remicade we'll need to review again - and decide on remi interval and dose, maybe pred short course too. Currently in a flare - 4-5 BMs in a day when he goes, not proper form, blood on TP and bowl.

Anyone had a flare after a year on remi - how did it resolve?
Posted 2/4/2015 5:35 AM (GMT 0)
it stops working for some. i read sometimes it is not too late to suppress antibodies
Posted 2/4/2015 5:55 AM (GMT 0)
I was on Ramicade for about 2 and a half years. towards the end I was getting sick after 7 weeks of the 8 weeks between infusions. The doctors put me on humira and that worked for a few years, I was taking a shot every other week and then moved to every week. I just had step one of the j-pouch surgery, and I am very pleased so far.

Im not sure if your son watches what he eats but I had a very strict diet. I would go years without flares and I would always get the flares after I got too "brave" with my food.

I hope your son gets better and best of luck to you and your family
Posted 2/4/2015 6:07 AM (GMT 0)
I started remicade in October of 2013 and like a week before Christmas of 2014 I started getting flare symptoms. I thought it was just holiday stress or something but I had a colonoscopy scheduled already for Christmas Eve so it worked out nicely. My doctor found inflammation (I could already tell due to the flare) and he put me on imuran. I had a remicade infusion shortly after and my next one is on the 27th of February. So far I think the imuran is doing its job of fighting and preventing antibodies. I'm still on the 5mg/kg every 8 weeks and doing great.

Is your son on anything besides the remicade? His body could be making antibodies now. That's probably what mine was doing, but the imuran is working. Maybe get him on imuran or 6mp along with the remicade. Worked for me.
Posted 2/4/2015 10:48 AM (GMT 0)

mcfarl73 said...
I started remicade in October of 2013 and like a week before Christmas of 2014 I started getting flare symptoms. I thought it was just holiday stress or something but I had a colonoscopy scheduled already for Christmas Eve so it worked out nicely. My doctor found inflammation (I could already tell due to the flare) and he put me on imuran. I had a remicade infusion shortly after and my next one is on the 27th of February. So far I think the imuran is doing its job of fighting and preventing antibodies. I'm still on the 5mg/kg every 8 weeks and doing great.

Is your son on anything besides the remicade? His body could be making antibodies now. That's probably what mine was doing, but the imuran is working. Maybe get him on imuran or 6mp along with the remicade. Worked for me.

@Catie, Thanks so much for your response, this is quite similar to my son's situation. Although in his case the flare has gone for 2 weeks before remicade. I am glad to hear that remicade is still working - will need to discuss appropriate addition with doc to support biologic - Imuran or 6MP or methotrexate. They are hesitant to use 6MP for young men because of liver side effects. Did your doc do an anti-body test? Did your blood tests at the time show increase in inflammation?
Posted 2/4/2015 10:56 AM (GMT 0)

ajfellows said...
I was on Ramicade for about 2 and a half years. towards the end I was getting sick after 7 weeks of the 8 weeks between infusions. The doctors put me on humira and that worked for a few years, I was taking a shot every other week and then moved to every week. I just had step one of the j-pouch surgery, and I am very pleased so far.

Im not sure if your son watches what he eats but I had a very strict diet. I would go years without flares and I would always get the flares after I got too "brave" with my food.

I hope your son gets better and best of luck to you and your family

Thanks @ajfellows, Yes, we are quite strict about diet - gluten-free, limited dairy (little cheese, butter), no red meats. Mostly chicken, fish, cooked veggies, fruits. The flare started toward tail end of our Christmas break although we were careful to stick with diet but more eating out. Hoping this can be controlled. Did your doc do remicade antibody test before switching to humira? Hope your j-pouch journey goes well.
Posted 2/4/2015 10:59 AM (GMT 0)

DBwithUC said...
it stops working for some. i read sometimes it is not too late to suppress antibodies

Thanks @DBwithUC - hoping remi continues to work.
Posted 2/4/2015 11:22 AM (GMT 0)
Just wanted to chime in and say people still flare sometimes, even when on immunosuppressants and biologics. It doesn't necessarily mean the drug has stopped working, just that the inflammation and symptoms became (for a short time) bigger that the drugs effects.

Only think about switching meds if doctors have proven by blood test that your son has developed antibodies to Remi. No need to keep climbing the medication ladder unless it's really necessary. If the blood tests show that your son hasn't produced a ton of antibodies to stave of the Remi shots then a short course of red (oral, rectal or both) should ease symptoms and get him back on good footing again.

Hope all goes well.
Posted 2/4/2015 5:14 PM (GMT 0)

BV said...

mcfarl73 said...
I started remicade in October of 2013 and like a week before Christmas of 2014 I started getting flare symptoms. I thought it was just holiday stress or something but I had a colonoscopy scheduled already for Christmas Eve so it worked out nicely. My doctor found inflammation (I could already tell due to the flare) and he put me on imuran. I had a remicade infusion shortly after and my next one is on the 27th of February. So far I think the imuran is doing its job of fighting and preventing antibodies. I'm still on the 5mg/kg every 8 weeks and doing great.

Is your son on anything besides the remicade? His body could be making antibodies now. That's probably what mine was doing, but the imuran is working. Maybe get him on imuran or 6mp along with the remicade. Worked for me.

@Catie, Thanks so much for your response, this is quite similar to my son's situation. Although in his case the flare has gone for 2 weeks before remicade. I am glad to hear that remicade is still working - will need to discuss appropriate addition with doc to support biologic - Imuran or 6MP or methotrexate. They are hesitant to use 6MP for young men because of liver side effects. Did your doc do an anti-body test? Did your blood tests at the time show increase in inflammation?

No my doctor didn't do an antibody test. And a blood test wasn't necessary since the colonoscopy was already scheduled and proved the inflammation. I'm going to get a blood test later this month though just to make sure imuran isn't doing something crazy.
Posted 2/4/2015 6:16 PM (GMT 0)
Hi all, new to the site, been lurking for about 3 weeks and finally decided to post a comment. Please see the sig for info about our nightmare...

@BV,
really sorry about your son, we have a similar situation (with a twist), my daughter started flaring at the end of X-Mas break also. My wife and myself started blaming the flu shot that she had received 2nd week in December. ( a little back ground here - about 4 years ago my daughter had some bleeding that lasted only for 2 days and about 2 weeks prior she received a flu nasal spray. forward 4 years to dec 2013 and she's gotten another flu nasal spray and 2 weeks later the whole hell broke lose. After her diag, all the docs say no more nasal spray but a shot. So now me and my wife are blaming the flu nasal spray.) This Dec we made sure that she gotten a flu shot, but after about 2 weeks she flared again. We are pointing fingers at the flu vaccine in general...
Called her GI, she had ordered pred once a day and a stool test. Stool test came back positive for C. Diff and that is what we are dealing with now. She is getting better, tapering off pred and waiting for another C. Diff test.
Posted 2/4/2015 10:24 PM (GMT 0)
That's so weird. I haven't had any problems with the flu shot. The flu mist could have given her problems because it is a live vaccine. I never got anything for the flu before, but once I was put on remicade they told me I should get the shot. (Not mist because you can't have live vaccines on remicade)

I know someone who has gotten the flu shot for years because she has a son with a compromised immune system. Every year she had no problems, but this year for some reason she had extreme arm pain and some other little side effects. Maybe they just made a bad batch this year?

It kinda makes sense now that I think of it why the flu mist would cause a flare though. Since it is a live vaccine, it is a weakened form of the flu that your body fights it off so that it can fight off the real flu if you were to get it. We UCers have crazy immune systems as it is so the mist might have given your daughter a crazy immune response that triggered a flare. Hope she feels better! Can't imagine being that young and having this horrible disease!
Posted 2/4/2015 10:42 PM (GMT 0)
I hope it resolves. Seems like it's extremely common for people to have remicade lose effectiveness over time. I've seen people who do great for many years and people who only get a few months of "magic" out of the drug. Hopefully he can add 6mp or something to get it back in check.
Posted 2/5/2015 3:37 AM (GMT 0)

notsosicklygirl said...
I hope it resolves. Seems like it's extremely common for people to have remicade lose effectiveness over time. I've seen people who do great for many years and people who only get a few months of "magic" out of the drug. Hopefully he can add 6mp or something to get it back in check.

@notsosicklygirl, thanks. Considering methotrexate instead of Imuran/6MP for better remicade efficacy.
Posted 2/5/2015 3:53 AM (GMT 0)

strykme said...

@BV,
really sorry about your son, we have a similar situation (with a twist), my daughter started flaring at the end of X-Mas break also.....We are pointing fingers at the flu vaccine in general...

@strykme, hope your daughter feels better - she's so young for this. My son likely started to get some symptoms around 11. I am puzzled by this disease coming so early on in kids, and curious as to why - given no family history. Here's the odd things about my son when growing up - constipation off and on in younger years, grass allergy, egg allergy early years resolved in later years, swimming at local YMCA the years before his condition started. If you're okay please share any atypical traits before onset of disease for your child. I hope she gets better soon. I myself have never done flu shots, it is a mixed outcome and I don't want to take on side effects for insurance sake. Take care!
Posted 2/8/2015 5:55 PM (GMT 0)
Today is day 4 after remi infusion and starting Uceris. Flare still not under control. I think Uceris isn't working. There is blood on toilet paper, and a little around stool, stomach burning complaint. Any thoughts on how many days would remicade take to get out of active flare without a steroid? Else, I have to go with short pred course option.
Posted 2/8/2015 6:49 PM (GMT 0)
I am so sorry :( Remicade doesn't work for everyone so you just have to hope she's in the 60% who respond to anti-TNF. I wasn't. I think for the people it works for, many respond RIGHT away. The other's can take a few infusions to see full results. I know iPoop said he wasn't feeling great until after he had been on remicade for about 6 months. I knew after about 4 infusions that I wasn't getting any relief. It was like I wasn't even getting medicine. I also tried Simponi, which had no effect for me, so that was a sign that I was a non-responder to anti-TNF.
Posted 2/8/2015 6:50 PM (GMT 0)
Remicade can take 2-3 infusions before you notice improvement. The loading doses are week zero, two, and six. Everyone responds differently, but you are talking 2-6 weeks to know if you are getting a positive response to remicade. Depends on how badly the flare has damaged you, that takes time to heal. I was on 20mgs of prednisone when I started remicade. After the loading dosages for remi, I began a taper off of prednisone.

I was 2-3 bms a day for a while and Remi got me into remission at a year on it. Now 1 bm a day, and skip the occasional day (like today).

Good luck,
Posted 2/8/2015 8:57 PM (GMT 0)

iPoop said...
Remicade can take 2-3 infusions before you notice improvement. The loading doses are week zero, two, and six. Everyone responds differently, but you are talking 2-6 weeks to know if you are getting a positive response to remicade......

Good luck,

This flare started while on remicade, I am seeing blood on poop and on toilet paper. Form and freq of BMs has improved after last remicade 4 days back but blood still there. The question is whether to start pred or let remicade improve things. He is on last growth spurt so want to have the right balance. Will check with doc on Monday too.
Posted 2/8/2015 11:40 PM (GMT 0)
Is a ppi needed with uceris? Could help with burning.

My son has had frequent urination, night terrors, a short episode of cyclical vomiting from around 9 years of age. Lots of anxiety and fears of death/bad things at bedtime always. Some constipation and the very first time he drank carbonated beverages he called them "hurtin juice". Because it burned his throat and stomach.

Very sensitive physically and emotionally...also extremely intelligent, keeps a 4.0 with boredom and is a year ahead of his same aged class mates.Also, broke out in hives after receiving penicillin several years ago.

His next step is remicade, but after a full 16 weeks of 5asa then recent probiotic addition, he is flirting with complete remission.

A shame what our youngsters are going through.
Posted 2/9/2015 4:41 AM (GMT 0)
@UCDad, This disease is so difficult to navigate and my heart goes out to all the young kids that have it. Hope your son feels better and hope that ASAs keep him in remission. I do want to say that diet plays a role so limit the sugar. And for his constipation, I regularly give my son sauteed organic spinach and it works fine. I have him on gluten-free diet, and had stopped dairy for a good half year. All the best to your son!
✚ New Topic ✚ Reply