Has Remicade ever made you WORSE?

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gavin92
Regular Member


Date Joined Aug 2011
Total Posts : 61
   Posted 9/10/2012 5:08 PM (GMT -6)   
I've been having Remicade infusions every 2 months. I've had 10 so far. So this summer, I had my usual annual flare (always around June) and I've noticed something bizarre.

I had to be hospitalised due to the severity of the flare 10 days AFTER one of my Remicade infusions. I immediately felt worse after having the infusion but just shrugged it off thinking "this is my 7th infusion, and plus Remicade can't make UC WORSE".

However, I've had two more infusions since then and the same thing has happened; I've felt worse. After my most recent one (7 days ago) I feel like it's tipping me into a flare. I will now probably refuse my next infusion as I feel it will cause more damage than good.

So my question is; have Remicade infusions ever made you worse?

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 2265
   Posted 9/10/2012 5:22 PM (GMT -6)   
No never has.
Diagnosed with UC in '02
Past Treatments: Cortisone, Mesalazine, Azathioprine, MTX, Sulfasalazine, Remicade, Humira
Current Treatments: Apriso (extended-release capsules) 1,5g, SF Rowasa, Colocort, SCD diet
Currently flaring since beginning of '12 descending colon to rectum.
Last coloscopy: 5/4/12

uc-logic
Regular Member


Date Joined Oct 2010
Total Posts : 151
   Posted 9/10/2012 5:41 PM (GMT -6)   
If the remicade is no longer working for you I believe it could make it worse. I would suggest talking to your doc about it though.
Starting Remicade March 5th 2012
Multi Vitamins

Been on: Asacol, Sulfasalazine, Prednisone, Imuran

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 22022
   Posted 9/10/2012 6:16 PM (GMT -6)   
Hmm that's odd...perhaps you were headed for the flare in the first place? I know that my Remi starts to wear off at about the 6 to 7 week mark (I go every 8 weeks). But, normally after my infusion - like literally the next day, I'm right as rain again.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular

allswell
Veteran Member


Date Joined Oct 2011
Total Posts : 667
   Posted 9/10/2012 8:20 PM (GMT -6)   
I got worse not long after my first infusion and stayed that way until the fourth was out of my system I thought it was not a coincidence but the other factor was that I was completely off pred, but also cort enemas and
Mas and suppositories for the first time on a few years.. I definitely got thrush issues though from the Remicade which made it harder to eat, like no appetite, and I had just strait blood.
proctitis 2004, Asa sup., 2006 hydrocort sup. worked for a while when I remembered to use them, 2009 spread to left put on prednisone, asacol, then Apriso. Switched docs tried lialda, rowasa, back to hydro enema and Apriso. 2010 6mp added, 2011 pancolitis ,Remicade, bad flare after no.1,2, pred now, and rem

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3169
   Posted 9/10/2012 8:30 PM (GMT -6)   
I was on Remicade for about 8 months. It never ever kicked in fully and got me to a good place. I was still going to the bathroom too much and had bloody D. about 6 months into it I got much, much worse. I was going to the bathroom 20 to 30x a day, with accidents and I was just really ill. I kept hoping the next infusion would help but that never happened. My doc finally pulled me of of it and I decided to go forward with surgery.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy with my results of this surgery-got my life back! :)

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6521
   Posted 9/10/2012 8:49 PM (GMT -6)   
gavin: I don't know anything about Remicade but wanted to respond to your yearly flare. Short story: I had another autoimmune disease over 20 years ago. Up and down all the time, bad treatments, bad drugs, treatments not working, kind of ditto UC. Went through it for years. I noticed yearly "flares" every fall from about August through October. You could bet money it would happen. After about 8 years of this I decided to concentrate on the why of it all and finally concluded that fall allergens were contributing to my condition. The doctors laughed at me but I was able to work my way through the system and eventually took allergy shots to control my actually mild allergies. Bingo! I started getting better and after 9 years of the disease it has been under control. That was over 10 years ago and I have been in a med free remission ever since. I recommend you look into allergies or maybe seasonal food choices to see if you can find something that might help.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 2 pills X 4; Vitamin D 5000 ius 1 pill X 2; DGL 400mgs 1 pill X 3

Didn't do anything: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Boswellia, Pepto Bismol, Omega 3 fish oil, Beano, Lactaid

Discontinued: Slippery Elm - meds were just passing through, Immodium - making me feel constantly constipated in beginning and now have solid BMs

gavin92
Regular Member


Date Joined Aug 2011
Total Posts : 61
   Posted 9/10/2012 10:24 PM (GMT -6)   
@Allswell - I also get issues with Oral Thrush (ongoing for almost a year) due to Remicade, Prednisone & 6-MP. I've taken 2 courses of Flucanazole but they don't seem to make a dent in it. I know that it won't go away until I stop the immunosuppressants but I'd rather have oral thrush than a flare up! My thrush does get worse after an infusion and I'm wondering if the infusions make the thrush worse and it's gotten into my digestive system now; and that that's the cause of the feeling worse and NOT UC? Thoughts guys?

@garylouisville - I have been suspecting this as it does seem odd I flare around the same time every year (almost to the day). However, I just attributed it to exam stress as I'd be hospitalised a day or two before my first exam (happened this year and last year). Also, I'm on 6-MP, Asacol, Prednisone & Remicade and they all are slowly failing on me. On top of that after two colonoscopies and biposies, the doctors have said they're not able to determine whether it's UC or Chrons (after 2 times! But they did say they were 99% sure it was UC). What allergens affected you? Could you please elaborate?

allswell
Veteran Member


Date Joined Oct 2011
Total Posts : 667
   Posted 9/10/2012 11:56 PM (GMT -6)   
I did feel likevthevthrush had gone down my esophagus, I took the fllucanazol and it worked after trying the swish stuff. Not sure how close that was to ending Remicade. I was also on cipro, flagyl for a few weeks after my flare got worse, somewhere into second infusion. My thrush symptoms were feeling like I had a lump in my gut, I actually started questioning if I had chrohns.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6521
   Posted 9/11/2012 12:42 AM (GMT -6)   
My allergist rates allergies on a scale of 1 to 4 where 4 can be life threatening. The worst I scored was 2 with a bunch of them being fall pollens and molds, just when I had my troubles every year. After starting allergy shots my autoimmune disease went away and it has stayed away for over 10 years. It's possible yours is due to yearly stress but you may want to check out seasonal allergies in your area to see if some correspond to June and then get tested. It's also possible your diet changes to a summer diet at about that time.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 2 pills X 4; Vitamin D 5000 ius 1 pill X 2; DGL 400mgs 1 pill X 3

Didn't do anything: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Boswellia, Pepto Bismol, Omega 3 fish oil, Beano, Lactaid

Discontinued: Slippery Elm - meds were just passing through, Immodium - making me feel constantly constipated in beginning and now have solid BMs

gavin92
Regular Member


Date Joined Aug 2011
Total Posts : 61
   Posted 9/11/2012 2:06 AM (GMT -6)   
@garylouisville thanks for the advice. Did you ever get classic allergy symptoms; runny nose, itchy eyes and painful sinuses? Because I have experienced those quite a bit, which is why your post resonated with me so much.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6521
   Posted 9/11/2012 7:27 AM (GMT -6)   
gavin: I never got any normal allergy symptoms such as runny nose, itchy eyes, sneezing, etc but I did get yearly sinus infections every fall. Every fall I would have a relapse of my autoimmune disease along with a sinsus infection. A relative told me every year for years that I had allergies but I emphatically denied it telling them I have never had allergies and didn't then, just sinus infections. After several years of this happening every fall I began to warm to the idea of getting tested for allergies. I asked my autoimmune doctors if they thought there was a connection in it all and they all laughed at me. Finally I went to my GP (who was also laughing) and he agreed that it wouldn't hurt to get tested for allergies so we set it up. I was shocked to learn that I not only had A LOT of mild allergies, but many of them revolved around fall pollens and molds, just when I would relapse every year. The allergist then began treating me for allergies using various nose sprays and meds. Didn't seem to help my autoimmune disease at all. After thinking about it a lot and still getting laughed at by my doctors I was able to talk the allergist into giving me allergy shots. They start out at a very low dose, gradually increasing it. In the very beginning I didn't notice much but as the shots got stronger and stronger, my autoimmune disease got weaker and weaker. After about a year of slowly getting better my disease just disappeared and I got the last laugh over my doctors. I still get allergy shots to this day to keep my first disease in check. That was over 10 years ago and I've been doing fine ever since, except for now coming down with UC two years ago. I'm about 100% sure that my UC is caused by the Epstein Barr Virus residing "dormant" in my colon, causing an autoimmune attack which is inflaming my colon. My UC first started while I was in the hospital for Mono. Since most doctors don't try and find out the cause of UC (and other autoimmune diseases), only treating the symptoms, no one ever gets cured. I cured my previous bout of autoimmunity because I treated the cause, not the symptoms. I am now going down the road of trying to treat my EBV infection to get rid of my UC but, unfortunately, there is no known way to irradicate an EBV infection. Since you have a clue as to possible causes of your UC if you try going down that road you may eventually find the exact cause and be able to treat that instead of merely treating the symptoms of UC. I wish you luck.

Post Edited (garylouisville) : 9/11/2012 6:33:34 AM (GMT-6)

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