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Infliximab antibodies and trough level question

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Ulcerative Colitis
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Posted 8/2/2023 2:29 AM (GMT -5)
Hi everyone,

I’ve been on infliximab since February 2020 and overall it’s been really good for me (I had a bad 1.5 years after being diagnosed stuck on steroids and quickly developing antibodies to humira). Anyway, at my last infusion 8 weeks ago they did the blood test to check the trough levels of infliximab and for antibodies and yesterday when I was having my infusion again I asked for the results. Unfortunately I’ve developed antibodies, having previously not had any. I’m in the uk so ranges may be different but my antibodies level is 16 and anything under 10 is considered ‘no antibodies’. I’m not sure what the upper level is for this test so maybe 16 isn’t that high? My ibd team haven’t contacted me and I had my infusion as normal yesterday and was booked in for the next one in another 8 weeks as normal. My trough levels were 3.7 (acceptable range is 3-7) which is on the low side.

When the test was done in March 22 the trough level was 7.8 and I had no antibodies. I guess I’m just wondering what anyone with more experience thinks about these results and whether anything should change? I’m really keen to stay on infliximab as long as possible because it’s been good for me and no side effects that I can tell. Other questions:

- once you start producing antibodies, can this be reversed or will it just continue to get worse?
- is the combination of some antibodies + borderline trough level significant?
- what causes trough level to fluctuate? (In July 2020 my level, for example, was 4.3 but then it’s been 7.8 now down to 3.7)
- would losing weight have any effect on trough level as I’ve lost quite a bit of weight since last year (6kg)?

Thanks so much for any advice
Posted 8/2/2023 5:18 AM (GMT -5)
Sorry to hear that you have developed antibodies, but that can be reversed by increasing the dosage and frequency of the infusions. Your doc should have made a change as soon as they received the test results 2 months ago. Please contact them right away. Hopefully they can increase the dose and move up your next infusion so you aren't waiting another 2 months. Losing weight would only affect the amount of remi you receive because it's weight based, but that shouldn't affect your levels. Since you have high antibodies and low remi levels they will likely increase remi to 10 mg every 4-6 weeks. Hopefully they will make this change quickly so that you don't get to a place where you start flaring because by then it may be too late to reverse the levels.
Posted 8/2/2023 8:05 AM (GMT -5)
Thanks for your reply. I was kind of hoping maybe they thought the result was ok and nothing needed to be done but doesn’t sound like this is the case. I contacted them straightaway but not heard anything back yet
Posted 8/2/2023 8:46 AM (GMT -5)
Ribbon, let us know what you hear back from the drs. When I was on Remicade they had to increase the dose & move the infusions closer together.

Take care.
Posted 8/2/2023 9:51 AM (GMT -5)
Increasing the amount plus shortening the time frame should help. Additionally Dual therapy while on an anti TNF helps negate the development of antibodies for some people.

My GI prescribed methotrexate to help me. It's driven my antibodies down 3 times. Each time my antibodies were above 10. I was having reactions during infusions..... scary times. We implemented premeds (Benedryl plus steroid) prior to the infusion with additional Benedryl after the infusion. I took/take a table form of methotrexate. Dosage depends on antibody level and if there are any reactions occuring. (Usually 10 to 20 mg. Taken once a week.)

I've been on Remicade since 2015.

Once antibodies start forming they need to react quickly. Once you stop responding and start flaring it's much harder to get it to start working correctly again.

Clo
Posted 8/2/2023 12:26 PM (GMT -5)
Thanks for the replies, unfortunately not had a response today - they are apparently understaffed at the moment. I’m getting a little worried since it’s already been 2 months since these results, although I could have developed antibodies at any point in the last 15 months or so since that was when the last test found none. Fortunately I’m ok and haven’t noticed a return of any symptoms. Clo, I’m on mercaptopurine too which I thought was potentially meant to help prevent antibody formation.
I will update when they get back to me, unfortunately they have form for being slow and making mistakes and to be honest I’m expecting them to reply something along the lines of the antibody level isn’t very high so they will just see how I go. They were talking about taking me off infliximab since I’ve been ok for a while (real reason is because it’s expensive for the nhs) so I’m concerned these results will give them a reason to do this
Posted 8/2/2023 1:19 PM (GMT -5)
Had exactly the same in January and I’m from the UK too. Short story of it, I was in full remission with infliximab for 3 years. My IBD team decided to take me off it due to high anti bodies with no plan in place. 2 months later I started to flare and Prednislone didn’t get me better, which meant i ended up in hospital for 2 weeks with a severe flare. Thankfully after months of hell, I’m back in remission now on a medication called Xeljanz which is a Jax inhibitor and got me back into remission. I have that twice a day now tablets along with my usual Mesalazine. I also made a complaint to the NHS about my IBD team basically putting me in a flare.
Posted 8/2/2023 4:54 PM (GMT -5)
Ugh NHS. You have to be your own advocate. My sister was flaring on humira for months and her doctors did nothing, eventually they tested her for antibodies and she indeed had antibodies. The protocol with humira is to increase the frequency of injections when that happens, but because her doctors were morons and she wasn't dropping dead, they just let her suffer as they didn't feel it was urgent to change something. I eventually persuaded her to go to a university hospital where she is getting proper care. Unfortunately it was too late to try to salvage things with humira but she's doing ok on another tnf-inhibitor. I genuinely don't understand why so many doctors do not know the best-practise protocols for different drugs but it really frustrates me.
Posted 8/3/2023 6:25 AM (GMT -5)
Hi everyone, thanks for all the replies. Just an update: I went to my GP this morning to see if she could help but got told that she was ‘sure they would have contacted me if the antibody levels were bad’ sigh. Anyway, I now finally got an email from my ibd nurse just saying that the results of all infliximab tests are routinely reviewed at some meetings they have - no idea when the next meeting is. So basically this implies they haven’t looked at my results and they’re now from 2 months ago and I’ve just had another infusion as normal 2 days ago at my usual dose. I don’t know whether I’m over reacting here.
Posted 8/3/2023 10:00 AM (GMT -5)
Ribbon, it's frustrating having to wait for answers. After how they handled your situation while on Humira I understand your concerns, you are not over reacting.

The only thing I can suggest is, since you are not having any issues enjoy the time, don't let this disease rob you of this. You have a little one at home to enjoy, concentrate on the good times.

If by chance at point you start having issues, keep a log & contact the drs.

Hang in there.
Posted 8/3/2023 7:03 PM (GMT -5)
Ribbon,
My antibody levels were 15 and 17 over a period of a couple of months last year. When i started to have symptoms the dose was increased from 5 to 10mg/kg at the same 6-week interval. A low dose Prednisone taper was added and things are better.
Without knowing units of measurement or the normal range who can interpret your 16? I suspect the test methods are similar because I am now under 10 and considered normal.
So yes, it looks like increased antibody levels can be reversed. It would be nice to know what your IBD team thinks and at least have a repeat test before you next infusion.
Posted 8/4/2023 1:37 AM (GMT -5)
I don't think you're overreacting at all. I'm in the U.S., but if I had a test 2 MONTHS ago and hadn't been given my results, and then got blown off when I asked them about them, I would be livid. However, it's a good sign you aren't having any symptoms and it may be nothing to be too worried over. That sucks they can't give you information though.
Posted 8/4/2023 5:18 AM (GMT -5)
You are not overreacting at all! Can you find another doctor like poopydoop suggested? Antibodies that high need a dose change in order to reverse. Good that you are in a solid remission though so hopefully you can get the doc to make the change before anything changes with that. Can you get an appt with your doc to talk about this since the nurse didn't seem to be concerned? 2 months is far too long to wait for test results!
Posted 8/4/2023 9:19 AM (GMT -5)
Hi everyone,

Thanks for all your replies. Unfortunately it’s pretty difficult to change drs here in the uk, it’s a very different system to in the US. I have no direct way of contacting a consultant in the team at my hospital, only the ibd nurses and the one I spoke with via email didn’t even address my concerns re the antibodies just stated the results will be reviewed routinely at their next meeting. I only get blood tests done every 8 weeks just before I have my infusion and they have to specially request the infliximab tests - it won’t be checked again therefore until end of September at my next infusion at the earliest, assuming they don’t just pull me off them. It’s all very frustrating. It seems insane it can take that long for them to review results when standard blood tests at the drs come back within 5 days.
Unfortunately I don’t know the units for the antibodies range just that the nurse wrote down that 0-9.9 was normal and mine was 16. A quick google suggests it’s nanograms per millilitre here in uk - not sure if that helps interpret how high it is. Previously they just said I had no antibodies but no idea whether that meant 0 or whether it could have been 9 for example - who knows. Always feel like I am very much kept in the dark about things.
Posted 8/4/2023 9:33 AM (GMT -5)
You can change hospitals and doctors in the UK, but you need a referral letter from your GP (or another doctor). Also you need to do your own research to find out where is a good alternative, as there's no point in switching if you're not going to get something better.

I'm living outside the UK now, but at my first hospital here I could never reach the doctor directly, only via nurses and in the end it wasn't good enough when I was flaring and they didn't take me seriously until it became an emergency situation. I'm at a different hospital now where I can email the doctor directly.
Posted 8/4/2023 9:37 AM (GMT -5)
Ahh okay. Yep I know it can be done but would be a lot of hassle and like you say, I’m not sure the alternative is necessarily better (there’s only really one other hospital as an alternative)
Posted 8/8/2023 8:25 AM (GMT -5)
Just got another question but don’t want to start a new thread… is it common to sometimes be constipated after an infusion? I had my infusion last Tuesday and suddenly since then have had really large and hard stools and feeling uncomfortable; I remember this happened after my last infusion too. Just wondered if anyone else had experienced this?
Posted 8/8/2023 9:22 PM (GMT -5)
I always have good luck with stool softeners. Maybe take one the day of infusion and the day after and see if that helps. Or take miralax that day.
Posted 8/9/2023 4:14 AM (GMT -5)
Thanks for the advice flowersgal. Midge, sorry you also have a useless doctor - seem to be too many of them around! I’m doing ok though fortunately the constipation and hard stools have aggravated a fissure I had.
Posted 8/17/2023 9:06 AM (GMT -5)
Just an update: I got a letter from my ibd team today saying they have applied to increase my dose to 10mg/kg for 3 doses. Not sure why 3 - maybe they will review it after this and the either continue or stop or go back to 5mg? Anyway, I guess this is good news and hopefully can be sorted in time for my next infusion in 6 weeks!
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