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When Do You Know Remicade is Not Working? – My UC Struggle

Introduction:

My name is Wendy O’Malley. I am a 40 yr old mother of three. Growing up, My dad suffered with UC. He was diagnosed at age 13 and dealt with it all his life. I was diagnosed a few months after I gave birth to my twins at age 27.
My Symptoms:
Loose BM (I mean NO form whatsoever)
Unpredictable and Immediate Urgency to go (how fast can you sprint from your front door to your bathroom?)
Cramping
Hemmoriods (like the UC isn’t enough by itself?)

My Story:

Over the last year I’ve been in a constant flare. My doctor tried me on everything from suppositories (which made me worse), to steriod enemas, to Lialda. After doing a colonoscopy, I found out that my original diagnosis of Ulcerative Proctitis (just the first three inches) has now spread to my entire large intestine. (Even though the textbooks say that NEVER happens). I spent about a month in bed barely eating and running to the bathroom every five minutes til my doctor put me on Predisone. Although that allowed me to get out of the bed and back to my life somewhat, the side effects were driving me nuts. I was swollen up like a cabbage patch doll, my hair was falling out, and I was eating like a horse. I am still RUNNING to the bathroom every time the urge comes, sometimes barely making it in time from one end of my house to the other.

I am currently preparing for my 4th dose of Remicade now. I haven’t noticed any improvement yet and I’ve made the decision that I’m giving it til the end of this year (7 doses) to see a big improvement or I’m opting for the J-pouch surgery. I’m off the predisone and as of a week ago, I’m also off the lialda per doctors orders (Since the doctor says 2% of people actually get worse on it… coulda told me that BEFORE he put me on it lol) Although I really do like my Doctor, he’s been great offering all kinds of options. The last year has been very frustrating, embarrassing, and painful. This site has been very helpful to me. Seeing how others have reacted to different meds and how they’ve handled surgery has be reassuring.
My Biggest Questions at this point are:

  • How many Remicade treatments do I go through til I realize this is another fail option for me?
  • How do you prepare yourself for a 2-3 part surgery when life is so busy (kids, family, job, etc)?

Where I’d Like to be in 1 Year:

By Next year I hope to either have this back under control with the use of Remicade infusions, or be heading in for my second surgery for the J-pouch. I know I can’t keep living like this. It is seriously affecting my social/ personal/ and sex life.
Colitis Medications:
The Suppositories they tried me on were by far the worst, they made my flare 10X worse. As for all the other meds we tried, nothing seem to really make it much better or worse outside of the Predisone. Lets face it, Sterriods DO work, but the side effects aren’t fully worth it. I was very uncomfortable (feeling like a stuffed sausage), Looked like a cabbage patch doll, and ate like a horse. Remicade infusions have yet to make a difference with me, but I haven’t lost all hope yet. We’ll see how #4 infusion goes this Thursday

written by Wendy

submitted in the colitis venting area



Remicade

30 Responses to When Do You Know Remicade is Not Working? – My UC Struggle

  1. Adam
    Adam June 20, 2012 at 12:25 pm #

    Hey Wendy,
    thanks for sharing your story. You’ve got a really tough question with regards to the Remicade and when to throw in the towel, or when to keep trying to see if it starts working. As you probably already know, the answer is unique for each person, but I’d definitely recommend that you give a read to the REMICADE SURVEY: http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    This survey we conducted on the site a few months back, and all of the participants are fellow UC’ers who have used/use remicade to treat colitis. I think you’ll find some pretty good info there that should help you out quite a bit.

    Best of luck to you with your infusion on Thursday!

    Have you considered any alternatives to treating your UC yet such as diet? That’s a huge part of my success with UC, and migth be something worth checking into if you like.

    -Adam

    • Wendy July 10, 2012 at 7:25 pm #

      Hi again,
      I thought I should follow up with my post. I recently had my 4th remicade infusion (June 21st) and it still hasn’t helped at all. Immediate afterward My family and I went on vacation back home to MA to visit my family. My UC flare got even worse and I ended up putting myself back on Prednisone just to do the things I wanted to do while on vacation. I called my GI doctor and got the surgical refferal to the same surgeon who did my Dad’s. Although my dad ended up with Colon cancer two years ago and now has a bag (they weren’t able to reconnect him), he was very pleased with this surgeon. So I decided the 6 hour drive would be worth having a surgeon who I was comfortable with. I am currently awaiting insurance approval and should be making appointments within the next week to see him and start the surgical procedures. I have let my employer know and she has been great! She said she will hold my job for me while I get the surgery done. It is the best decision I think I can make right now. My husband is active duty military and hoping to retire in a couple of years, so seeing as I will more than likely need the surgery eventually, I figure better to get it done now while I can get it covered completely then later. Wish me luck and I’ll post again once I get the first surgery done. Thanks for all the support!
      Wendy

      • Adam
        Adam July 10, 2012 at 10:11 pm #

        Hi Wendy,

        I wish you the very best with this doctor and the next few days/weeks for you and your UC. Please keep us posted on how things go for you and your family.

        -Adam

  2. Bev June 20, 2012 at 4:19 pm #

    Hiu Wendy,

    Boy, I sure wish I could help on how long one should hang in there to see whether or not a certain med is working. I have never been on remicade. I took the enemas, asacol (or lialda), and steroid enemas. Nothing worked very long for me, either. I actually refused to try the steroid pills, or remicade.

    I do know that I had to take probiotics for at least two months before I saw good improvemnt. I think that we expect whatever we try, medical or natural, to work right away! Heck, the symptoms of this disease can be so bad that we can’t wait for something to work, right?!

    Anyway, my point I guess, is, give the remicade a fair shake. If it doesn’t work in the end, at least you tried it for it’s full course.

    Try a good probiotic as well, and give it time, like at least two months, to work. You might find that it does…

    Cheers,
    Bev:)

  3. Bev June 20, 2012 at 4:20 pm #

    Oh, and definitely try Adam’s suggestion regarding the SCD diet.

    I believe diet and probiotics are the way to treat this mother!

    Cheers:)

  4. Joe T. June 20, 2012 at 10:41 pm #

    When I had my first remicade infusion, it worked like a charm where humira failed and shut down my colitis that week! I initially had some trouble with side effects, ie: itching and flushing, but within a couple of months my body adapted. Now I have no side effects & my body seems to have developed antibodies that now render the remicade useless in my fight. But it did work wonders for me in the begining.

    SCD was really tough for me to maintain. I tried my best, but was often too weak or sick to keep upwith the diet myself. I did it for almost 6 months and I wasn’t getting the results I wanted considering the amount of effort I put into it. Jpouch surgery is looming in my case. Everyone I’ve spoken to who’s had the procedure seems to be glad they did it. I’m almost at the point of giving in, but a big part of me isn’t quite ready to surrender well, a big part of me! Good luck in your fight against this bastard of a disease.

    • Nelly July 18, 2013 at 3:53 pm #

      Hi also developed antibodies against remicade…. I don’t know what to take next if known get a flare again?

      • Mrs. Hudson July 21, 2013 at 1:41 am #

        I think IvIg is your next step. It’s expensive, so doctors don’t like to use it. I talked about it in this thread in September 2012. Google it and see. We are almost approaching a year since my hubby’s colon removal, and we haven’t been to the hospital, Ermine… things are so normal, that we don’t really know what to do. I really hope you you’re able to find something that works for you. Keep us posted.

  5. Paul Willoughby June 21, 2012 at 4:06 am #

    Hi there. I’ve been on remicade for 5 years. I think you should have noticed if it were having any effect after 4 infusions. However, sometimes they need to go in and have a look at your colon to see if it’s improving so it may be having an effect even if you’re still having diarhea problems. In my case, the distal end of my colon doesn’t have much, if any lining left after all teh years of inflammation so even when I don’t have a lot of colitis activity, I still need to deal with the urgency and diarhea. Ask you doctor for some diarhea medication and see if that doesn’t help you. Also, ask him/her to scope you to see if the remicade is working – even if just to look at the sigmoid colon.

    best wishes,
    Paul

  6. Maggie June 21, 2012 at 9:22 am #

    Hi, Wendy. When I first went on Remicade, I had been diagnosed with UC and Crohn’s and was into a 6 month flare. The first infusion was immediate relief! I couldn’t believe it. I stayed on it for awhile but the co-pay was too much, I went off, back on, but now I’m sure I can’t go back on it again. Like Paul Willoughby says, if it was going to work it probably would’ve by now. I wish I had answers about the surgery for you. The surgery might be a possibility for me in the next 2 years. Good luck to you.

  7. Lara
    Lara June 21, 2012 at 2:36 pm #

    I’ve been on Remicade for a year now. I noticed positive results within the first week of my first infusion. It’s been wonderful for me! The only side effects I’ve really noticed are: increased appetite for a few days after my infusion; I get really cold; and I get pretty fatigued for about a week after my infusion. I’m going to schedule my yearly colonoscopy next week & will see how much actual improvement I’ve made.

    I think everybody will vary with their results. Just give it some time & talk to your doctor if you’re really unhappy.

    I hope you feel better soon!

    • Florida Karen September 9, 2012 at 12:06 pm #

      Lara:

      I too wonder if Remicade is working although I have only had 2 treatments…3rd is scheduled for this Friday. What I have noticed is amuck more solid stool but yet still some blood associated with it. Think that is a sign of some improvement?

  8. Sara June 21, 2012 at 3:55 pm #

    My Remicade stopped working the morning after my third injection. I woke up with such severe joint pain and stiffness, I couldn’t even dial the doctor or 911. i finally managed, though, and spent a few hours in ER. i don’t know if I had an allergic reaction, but I do know my body rejected the Remicade.

  9. David June 23, 2012 at 10:16 am #

    Hi Wendy:

    Sorry to hear about your struggles with UC. I`m 59 years old and was diagnosed with UC 5 years ago. My dad also had UC and was diagnosed with the disease in his early 40`s. Like you I`ve been on several medications both steriod and non steroid to try and control the disease. I`ve had the same symptoms and constant flaring as you`ve had or have. I`ve been on and off Prednisone for the past 3 or 4 years. I had my 5th Remicade infusion about 3 weeks ago and will have my 6th infusion in mid July. I`ve been off the Prednisone for about a week but I`m still doing the Cortenemas every other day. My UC appears to be under control for the past month and I`m hoping for continued improvement. I had a terrible reaction after the 4th infusion with severe joint pain and stiffness and my doctor put me back on 40mg of Prednisone with a 2 month taper and finally off the Prednisone and that`s where I`m at today. I also have a huge appetite when I`m on the Prednisone but have managed to keep my weight close to normal for my frame. I try to eat right with colon friendly foods, manage stress and get some routine exercise. When I received my 5th infusion, the infusion nurse added Benedryl and a mild steroid to avoid another reaction. As a result I didn`t have any reaction after the 5th infusion. My doctor tells me that it may take 6 to 8 infusions to know whether it`s going to work or not so I`ll give it more time. If at that point I start flaring again, then my doctor wants add Methotrexate along with the Remicade. If that doesn`t work then we might try Humira and has also discussed my surgery options, the J pouch and full colon removal and colostomy. I hope the Remicade works for you and I think you might have to give it more time.

    Best of luck Wendy and I hope you feel better soon.

    David

  10. Mrs. Hudson June 28, 2012 at 4:19 am #

    Wendy,
    You are not the only one. My husband had remicade and it did absolutely nothing for him. In fact, he got worse. The doctors have started him on IvIg and he seems to be responding well to it. This is the last Dutch effort before the J_pitch. Sorry for the typos. Perhaps you can look into that. Maybe you can heal your Colin still?

    • Jay September 20, 2012 at 8:46 pm #

      What is LVLG?? You mentioned your husband is on it. Please get back to me ASAP. Thanks!

      • Mrs Huds September 20, 2012 at 11:58 pm #

        Jay,
        IvIg is immunoglubulin g. It’s kind of less caustic than Remicade because it’s naturally produced in the body anyway. It’s super expensive, like Remicade. Look it up. I don’t think it helped us art all, but it’s worth a shot.

  11. Ed June 28, 2012 at 10:39 am #

    Hi Wendy,

    I am a 51-year-old male that was diagnosed with UC about 11 years ago. My diagnosis is now indeterminate Crohn’s colitis. All medication failed over the years, and I have the two-step j-pouch surgery about two years ago. Even in the absence of the entire colon and most of the rectum, I have UC/Crohn’s symptoms that require treatment. Remicade worked well the first three infusions, but have apparently completely stop its beneficial affects. I know your life is difficult. Preparing for multiple major surgeries is almost impossible. I was in the hospital for 23 days after my second j-pouch surgery, and it took about two additional months to return to work part time. Living with a j-pouch has been very difficult for me, and complications such as fistulas, fissures, and severe cramps are daily reminders of my disease. Exhaust every avenue before opting for j-pouch surgery. I may have to go back to a colostomy bag because of j-pouch complications.

    I wish you good health and peace.

  12. Nicole August 19, 2012 at 7:37 pm #

    Mello, My name is Nicole I am 31 and I was diagnosed with UC about 2 years ago. I am pretty sure I have suffered from this since I was 18, but was to embarrassed to ask a Dr why I was using the restroom so much. 2 years ago I was hospitalized for 5 days and a GI infromed me that I had UC. I was put on prednisone, colazal, amitriptlyne, and a pro-biotic. With all of these I was still not getting any better so I stayed on the prednisone : ( oober weight gain, and switched to Asacol sp? 4 colonoscopys later,I have now started Remicade this month and had my second treatment 2 days ago. I am not feeling any better…. infact I am feeling worse! The cramping on the left side is very painful, I am using the restroom a lot more than before :P, I have slso been experience some off and on pain on my right side, and in my lower back. I was really going into these treatments with high hopes, but now I am feeling like NOTHING is going to work. I am at a breaking point with UC and very overwlemed with trying to work, and function day to day. Oh, did I mention I teach kindergarten?? yeah, needing to rush to the restroom is next to impossible……. thinking of work tomorrow stresses me out! Ok, thank you for listening to me complain about my life with UC! : )

    • Mrs Huds September 20, 2012 at 7:59 pm #

      Nicole,
      My husband was going through this with tyre aching joint and breaking out mouth and running to the bathroom 10-20 times a day. He was like that until he got his colon removed last week. The first thing he said was why didn’t I do this earlier? Maybe that’s the way to go. I know GI doctors want to heal first, but if it’s not working, then perhaps something different should be considered?

  13. Jeff September 20, 2012 at 1:58 pm #

    I am going through somewhat of the same challenges, however, Remicade has worked for me, it just seems to have stopped working. In talking with my doctor, she wants to do a new test called Anser IFX which is to determine if your body is making antibodies to the protein in Remicade. In my case, I went from a minimal dose that was working, then stopped working after 2 years. I went through a reinduction of Remicade at the highest strength in May and have seen no response to the increase. I have never stopped Remicade, and have also been on Imuran off and on to see if it would help any. I am just waiting now to see if insurance will cover the test. The company, Prometheus that developed the test appears to focus specifically on UC and Crohn’s.

  14. wayne May 26, 2014 at 7:43 am #

    I have been on remicade for 5 sessions now. I noticed results after the 3rd, but after my 5th, things have went way south. I was on opium tincture 4 times a day, and it worked great then my insurance raised my price on this medication, and had to quit taking it. Ever since then it has been pure disaster. What other options can i try? Is the surgery where they create a colon worth trying? PLEASE any input would be great

  15. Paul Willoughby May 26, 2014 at 11:09 am #

    There’s a new medication that should get FDA approval this month: Vedolizumab. It works differently that remicade – it targets white blood cell movement into the intestines rather than blocking TNF- alpha. It’s too late for me, I’m afraid – I am meeting with a surgeon soon. Good luck.

    Paul

  16. Audrey August 4, 2014 at 7:01 pm #

    I’ve tried everything and am currently still on Remicaid but the jury is still out. The thing that helped me the most was prescribed by my naturopath. He treated me for SIBO which my GI doctor dismissed. I was tested for it and sure enough the test came back positive. He then prescribed VSL#3 for my crohns symptoms, which saved my life! I had been in a flare for 6 months, lost 20lbs on an already slim frame, my hair was falling out and I was exhausted. This prescription strength probiotic was a miracle for me. I highly recommend it and do consider being tested for (Small Intestine Bacterial Overgrowth)SIBO. This is common in IBD patients.

  17. Brent November 24, 2014 at 4:57 am #

    I had no problems or symptoms growing up and all of a sudden in 1995 (I was 21 at that time) it felt like somebody stabbed me in the gut and I had to run to the bathroom in severe pain. My bowel movement looked like a gallon of blood was dumped in the toilet. I was at work at the time and ended up going home and straight to the bathtub. I sat in there for hours constantly adding more hot water as it cooled off. After about 4 hours the pain started to ease and as soon as I stood up it was pure pain and had to go right to the toilet again with the same results. To make my long 1995 story short, I ended up not eating or drinking anything (except a little water) for 3 days and I dropped down to 118lbs (I’m 6’1). I went to the hospital and had every test you could think of including colonoscopy. The doctors put in a central line (so nothing entered my mouth, food or liquids) and also put me on prednisone and pentasa. After 3 weeks I thought I was good and the next day I was going to start on clear liquids but that night it all went wrong. My intestines went into spasms, I had a morphine pump that was hooked up to my IV and it didn’t help any, the nurses and doctors added more morphine to my IV and a large dose of prednisone, still nothing worked. I remember my body going cold and hospital staff everywhere around me freaking out rushing my bed down the halls of the hospital. I was surprised to wake up the next morning and when I did I had this plastic bag stuck to my skin just above my right hip and a large stitched up cut about 8 inches long that went around my belly button. They took out my entire large intestine. I did end up having 2 more surgeries (in 8 months time) to have a J pouch constructed. Talk about a lifestyle change. I am now 40 and just recently, I started having really bad rectal pain from gas and urgency to have a bowel movement pressure. (The last GI doctor visit/inspection was in 1995), I refuse to have any device or digit exam unless I am in desperate need or severe drop-to-your-knees pain. So after a recent flexi scope and cipro, flagyl, prednisone, plus other drugs I can’t remember the names of, I started to have really bad joint pain too (like my wrists, shoulders and elbows got hit with a hammer and all the bones were broken). I ended up back in the hospital (because none of the drugs helped even the slightest bit) for CT and MRI have now been to the hospital for 4 surgeries (in the last 4 months) for fistulas. I was put on remicade 2 months ago, had the first 3 infusions, and just had the 4th done at the hospital 3 days ago during my stay for another seeton surgery. The 4th and most recent remicade dose was the maximum amount and I still don’t or haven’t yet felt any effects from the drug. I too wonder how long I should wait for this drug to work seeing as how I was put on it after the first 3 surgeries for fistulas only to have more fistulas pop up 2 months later? I am sorry to hear about others with this same issue and I have been searching for as much info on the Internet as I can get, while taking a mental count of how people react to different drugs and diets. I came up with a variable that is impossible to describe :( it really does come down to everyone is different and there is no real “best thing to do”. I want to try every diet and drug out there to see what works for me but I am not the most patient person either. Has anyone failed the remicade but did well on humira?

    • Mary November 29, 2016 at 5:44 pm #

      My daughter tried humira for several months with no improvement. She has now started remicade. But so far hasn’t seemed to help much either.

  18. Elizabeth Noel November 4, 2015 at 9:11 am #

    I have Ulcerative Colitis that started in 1993 when I was 23. It was on again- off again symptoms (depending on my stress level) until my third son was born in 1997. Then I had chronic symptoms of the bleeding and pain. The Prednisone and Asocol (anti-inflammatory) helped to keep the symptoms away but didn’t clear up my unhealthy colon. In 2008 I was introduced to a patented nutrition product that not only helped my body grow new healthy cells in the colon but also helped me with other health issues. The only time I have a flare up is when I worry myself sick. My last colonoscopy was in 2013 and the doctor said I had only patches of the disease and the rest looked pink and healthy.

    • Shelley February 25, 2016 at 8:26 pm #

      Hi Elizabeth,

      Can I ask what kind of patented nutrition product you got?

      My husband has UC and we tried vendulizumab/Remicade but he still suffers a lot.

      Thanks a lot! Wish everyone here healthy and happy.

      Shelley

  19. Elizabeth Noel March 10, 2016 at 8:55 am #

    Shelley,
    My family and I are all on a product called “Reliv”. We started in 2008 and have had great results. I know that this nutrition has helped me stay symptom free and medication free for years at a time. I would be happy to answer any questions and share my story anytime. I could also introduce you to others who have had success with this problem and others. Feel free to email me for my personal number. emnoell5@yahoo.com. Sincerely, Elizabeth

    • Elizabeth April 23, 2016 at 1:26 pm #

      My email address is wrong on here. the correct one is emnoel5@yahoo.com. just on L in the address. sorry for any inconvenience.

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