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Unusual Remicade Concentration and Antibody Results

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Ulcerative Colitis
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Posted 3/9/2015 4:28 PM (GMT 0)
I've been taking Remicade since October (my 4th infusion was in January) without any improvement in my ulcerative colitis. My doctor ordered a Remicade concentration and antibody test and called me with the results last week. The test showed that the concentration was in the therapeutic range, AND I have developed antibodies. He told me that, normally, one would expect to see one or the other and not both.

He contacted some doctors that he knows at Massachusetts General Hospital, and they said that these results are fairly unusual but do happen sometimes. They reviewed my case, and recommended that my doctor double my Remicade dosage to 10mg/kg and start me on methotrexate (once I finish with my current course of prednisone).

I was just wondering if anyone else has received similar results, and if so, what did you do and how did it turn out?
Posted 3/9/2015 4:35 PM (GMT 0)
I didn't do the tests to check for antibodies but I never had any result from Remicade, even at double dose. I tried it with MTX. I was on prednisone at the time. I think it's smart that you're waiting until you're off prednisone to start the MTX. How are you going to taper off if you're not seeing results with remicade?
Posted 3/9/2015 4:42 PM (GMT 0)
I'm not sure. My doctor wanted to provide me the information so that we could talk about it in person at my appointment next week, and how exactly this will work is one of my questions. This is the third time I've been on prednisone, and I do well until I taper to 10mg. At that point, things get steadily worse, but I could probably grin and bear it for a couple weeks until I'm off... I'm not sure how quickly he would expect to see improvement from the increased dosage of Remicade and the methotrexate, which is my worry.
Posted 3/9/2015 5:41 PM (GMT 0)
Often, remicade is used concurrently with an immunosuppressive medication (that is imuran, 6mp, or aza), specifically to reduce the odds of antibody buildup. I'm surprised you were not initial given the two concurrently back in October, when you started remi.

Increasing the remicade dosage can be enough to offset the antibodies, in some. It is worth a shot.

Methotrexate is not commonly used in uc, much more common in Crohn's disease.
Posted 3/9/2015 5:50 PM (GMT 0)
I have been on Remicade for almost a year.  Within five months it started to wear off so my doc ordered the Anser IFX blood test for Remicade.  My results were uncommon as well...it showed that there was a therapeutic level in my blood and that I had NOT built antibodies.  This means that on paper I should be feeling great, but I was not!  Based on what my doc and Prometheus labs told me, I should probably move on to another class of drug since the anti tnf's will most likely not work.  I was bummed.   Remicade was working somewhat, just not as well as it did when I first started.  My doc did not want to give up on Remi yet, thank god.  He added MTX in December and I have been feeling great.  I tried adding Imuran before and it made me deathly ill so I was reluctant to start another immuno drug, but knew my chances would be better with it.  Glad I tried MTX -- in combination with Remi it worked wonders.  I am on 5mg/kg still.
Posted 3/9/2015 7:57 PM (GMT 0)
You have had four infusions with no improvement at all or have you at least had a little improvement? After six infusions with no change in my condition my doctor took me off Remicade because it clearly wasn't working. I didn't have even a little improvement.
Posted 3/9/2015 8:22 PM (GMT 0)
Quick question for a friend of mine.. She has had two infusions thus far with no improvement and was wondering how long she should give it. I got immediate results when I started so I didn't know how long those who did not respond right away waited before they moved on..thanks!
Posted 3/9/2015 8:38 PM (GMT 0)
Nix, usually the loading doses of remicade are sufficient to tell whether a patient gets any response at all to remicade (that is initial doses given at weeks 0, 2 and 6). Usually the gastroenterologist and insurance requires proof that it's working, to continue what is a very expensive medication. Healing fully, most certainly, takes time.

I noticed my first improvement on remicade, a week after the second infusion. I noticed a much bigger improvement a week after the third infusion, and steady improvements every one afterwards. It took nearly a year on remicade, for me to achieve remission.
Posted 3/9/2015 8:43 PM (GMT 0)
Thanks for the replies. I've had no improvement what-so-ever on the Remicade, and I can't take it with aza because aza gives me pancreatitis. I don't want to give up on Remicade yet, if there's any hope of it working, because I know there aren't a ton of other options. I was just curious if anyone has had success with it even though they had some antibodies.

Thanks again for the replies!
Posted 4/13/2015 4:48 PM (GMT 0)
Reviving this post...

Last spring after about a year on Remi, I told my GI I wasn't sure it was helping, so we tested for antibodies. I had high levels of Remi in my system and high levels of antibodies. I didn't see the actual numbers until recently. Her strategy was to shorten the duration between infusions, first to six weeks then later to four (I don't get a dose based on my weight but a flat number--400mg--which works out to about 6.5mg/kg).

Fast forward to now, two years in, and I'm still not convinced the Remi is really helping so I'm planning to stop. My understanding is that once you build up antibodies, there's no point even trying other TNF drugs like Humira.
Posted 4/13/2015 5:20 PM (GMT 0)
Incorrect, if you've developed antibodies to remicade, try humira or simponi, as there's no certainty that you'll develop antibodies to the other tnf-alpha blocking medications. Remicade is 75 percent human protein and 25 percent mouse protein, and its the mouse part that makes antibody development more likely with remicade. The other tnf-blockers, humira and simponi, are 100 percent human origin proteins.

You could go straight to entvyio, if you want, but don't base the switch on: humira or simponi won't work for, because they may work great. Personally, I'd base the switch to entvyio on no antibodies present for humira and no improvement in uc symptoms, as that states quite clearly that anti-tnf medications have failed you.

Cheers,
Posted 4/13/2015 8:33 PM (GMT 0)
I never had any response to remicade. It works wonders for about 60% of people, the other 40% are non-reponders. Then there is a group of secondary non-responders, they respond for a while and lose response rather quickly, often within the first year. I just made a long post about this the other day and I am sure no one read it so I will not repeat, but the point is, not everyone responds to remicade. I did the loading doses, tried a double dose and added MTX and I still wasn't able to get off pred and I didn't feel any better than before trying it. Not even minimally. If you responded and lost response, you should try Humira or Simponi. In my case, I tried Simponi and Remicade, both without response.
Posted 4/13/2015 11:02 PM (GMT 0)
I hesitate to post this, but I am doing very well now. I got a 10 mg/kg infusion almost a month ago and I just took my fourth dose of MTX today. I'm down to 4-5 BMs a day. I still have some urgency, but it's nothing like before.

I really hope it lasts.
Posted 4/13/2015 11:20 PM (GMT 0)
Good you're improving DRR. It took a full year for me to reach remission on remicade, give it some time.
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