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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade stopped after 8 years


03-08-2014, 06:29 PM   #1
hopeintexas
 
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Remicade stopped after 8 years

Hi-
I've been on Remicade for the last 8 years and it was like my miracle drug. It put me in remission, healed fistulas, and I had no side effects from it for the longest time. Last October I started noticing that I was getting very tired in between my treatments, having increased BM, and overall feeling bad. My doctor upped the treatments to 900 MG (prev at 500) and changed from every 6 weeks to every 5 weeks. He also added 6MP and did the antibody bloodwork. Bloodwork came back negative for antibodies, and even though the 6mp has helped, I am still not anywhere near as well as I have been in the past. My fear is that the remicade just isn't working. Has this happened to anyone else- it not working even though you are negative for antibodies? I'm seeing my doctor soon and hoping to try a different treatment, b/c I'm not sure I can continue with Remicade if I'm not feeling the benefits. I would appreciate any thoughts or guidance!
05-28-2014, 05:56 PM   #2
Robrich
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Hi hope in tx
Same happened to me. 8 years off all other meds. Worked great. Then started having problems upped the dose helped some for awhile. Inflammation came back and now a fistula. Had fistulas before and remicade was the only drug that closed them
Now trying humira but not helping. have to take pred, entocort and antibiotics to control it. Not sure what to do next. Maybe increase humira and give it one last shot.
I think from experience no treatment works forever for CD. Somehow the disease finds a way.
I had been in remission for years from pred during the early years of the disease. Even got remission for awhile from macrobiotics and later from SCD. But after awhile the CD returns. Flagyl worked for awhile on the fistula but they always returned when I stopped.
Now it appears the anti tnf are no longer working for me.
Good luck
If you find something that helps let us know.
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
06-02-2014, 01:22 PM   #3
theOcean
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I'm sorry to hear that Remicade has stopped working for you. Unfortunately I'm a case where I had really high antibodies, so I haven't shared the same experience you have. At least know that there are many other biologics for you to try now, and they should be just as effective as Remicade. Humira has been wonderful for my fistulizing Crohn's, personally.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
06-02-2014, 05:52 PM   #4
Robrich
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hope in Texas and I had a good 8 year run on Remicade.
I am very very curious how many people have had success with any biologics for that long or longer
Anybody?

Last edited by Robrich; 06-02-2014 at 05:54 PM. Reason: Responded to wrong msg
08-14-2014, 05:51 PM   #5
nervous mom
 
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Hi, my son was diagnosed with perianal crohns at age 10. Was put on Remicade at age 11, and took it for 6 years along with 6mp. Then doc (who we since left) decided to pull him off the Remicade because of the research that said young boys/men taking 6mp along with Remicade could possibly get a fatal type of cancer (leukemia? not sure). He should have stopped the 6mp, and kept my son on the Remicade, which was working well. He only had it every 10 weeks or so back then. So 6 years on Remicade, may have continued to work for longer, who knows.

Then one year on nothing, got very sick. Now has been on Humira weekly for 6 years, (until we found out he stopped taking it for 6 months!), now on every other week, and not very compliant. Clean colonoscopys for several years, but I am worried about his non compliance. He is now 25, has been on biologics for 12 years total.
08-14-2014, 06:19 PM   #6
my little penguin
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DS was started on remicade at age 8.
He started to have an allergic reaction after 8 months.
He was moved to humira April 2013 and has stayed on that for a year so far .
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11-30-2014, 08:19 AM   #7
Fletcher2222
 
Join Date: Nov 2014
I had a great run with remicade--near to fourteen plus years with virtually no issues/symptoms/side effects. I was just taken off due to eye problems they are attributing to the drug, but I'm not convinced. Naturally, Crohns symptoms started up as soon as remicade wore off so now I'm fighting GI symptoms awa eye symptoms :-(
12-01-2014, 12:17 AM   #8
Miss Underestimated
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So sorry it has stopped working for you. I hope one of the other drugs will work. There are quite a few, and other approaches are in the works, so hang on.

What a sneaky pesky disease we have. I'm doing well on Humira now, but I know it can stop working or cause side effects any time. I'm just grateful for the time I have and take things as they come.

Keep us up to date.
__________________
*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
12-02-2014, 04:07 PM   #9
Roxymusic
 
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Remicade has only brought me so far - not to "temporary" remission like some folks. I've been on Prednisone 40mg and Imuran now trying to stave off any more bowel loss.....but when I started remicade I was in pretty bad shape 3 years ago. Not great now, but I wouldn't drop the treatments.
__________________
DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
11 Kidney Stones from 1996 due to resections
All the standard drugs/advice from the 70's 80's 90s
Now: Lyrica & Cymbalta (Neuropathy)
Fish Oil, B12 injection monthly
Dec 21 2011 started Remicade
February 2012 off of Pentase!
Nov 2014 Back on Imuran
Jan 2015 off Remicade
Mar 2015 on Humira
June 2016 on cimzia
Dx short Bowel July 2017
12-17-2014, 05:08 AM   #10
elakes
 
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After many years on Humira it finally stopped working - tomorrow I start on Remicade Infusions - at least if I can get 8 years out of it like the Humira I will be happy. Next month I get my reversal as well - can't wait to get this bag off me and get back to some kind of normalcy.
12-17-2014, 07:58 AM   #11
Roxymusic
 
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I hope it works, in January I get a balloon procedure that may lead to your situation. I see the surgeon today. Then I go off remicade to entyvio. I never had any bad side effects from remicade and it cleaned up things for a while, but not remission, but enough to function well at times.
10-10-2015, 11:32 AM   #12
sadiekins
 
Join Date: Aug 2015
Location: Memphis, Tennessee
Remicade gave me stroke like symptoms after 2nd infusion. I was in rehab for 5 months. now I feel like it didn't even happen? I have now started entyvio and 6mp with no side effects after 3 infusions. Hope this works and closes up my fistula. I am getting older and the CD just gets worse. I'm sure many people are on disability because of CD. You stay sick all the time , how can you hold a job? by the way...I hate setons!
11-18-2015, 08:24 PM   #13
ronroush7
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Hoping the best for you,
11-18-2015, 09:16 PM   #14
Justanothercp
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I've been using Remicade for about 15+ years, still need Lialda and Budesonide as well, but I'm doing ok....
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