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Totally had enough now.. Infliximab nightmare?

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Posted 9/14/2018 9:33 AM (GMT 0)
Hi All!

I've felt for a while that my infusions were having less and less impact on me, my fatigue has become crippling, I'm passing up to 8 BMs a day (from super hard to mousse-like) and I'm back on a beige diet. I have been told my levels are fine so it must be working.

So, after my second-to-last infusion I came down with shingles. Not nice and a total surprise, but was told my infliximab levels were good (7.2) and it was unlikely to be a reaction.

I had my last infusion 8 days ago. On the day, I got a small red rash around the injection site about an hour afterwards, and Wednesday night (6 days after) I got an awful sore throat. Yesterday I felt awful and today I feel like I'm dying. It doesn't just feel like a cold, it feels worse than that. My throat is killing me, my head is pounding, I'm hot and cold, my ears ache and I can barely focus, plus I'm shattered.

Is this just another coincidence or could it be that I am reacting to the infusion?

I feel brushed off by the IBD Team when I mention things now - should I seek advice from my GP instead?

I'm not a hypochondriac, but I am starting to get seriously fed up!
Posted 9/14/2018 12:25 PM (GMT 0)
Aimee, sorry to read that you are struggling right now. My suggestion is go see your GP, I suspect you have something else going on. I am not completely convinced it’s the Remicade. When I was on Remicade, once in awhile I would not always have the best reaction I had hoped for.

If your signature line is correct & you are receiving it every 10 weeks, you may need to move the infusions closer together. My gi said that it needs to be tailored to the patients needs. After making adjustments I was having my infusions every 4 weeks.

If you feel your drs are not being of any help, get a 2nd opinion. If you are having constipation problems, get some OTC stool softeners, Miralax, colace or something along that line. They do not work like a laxative, it usually takes several days to kick in & you must drink a lot of water.

It’s Friday & if your GP can’t see you today, consider a minor urgent care. They can address the sore throat & ear issues. Take care.
Posted 9/15/2018 12:20 AM (GMT 0)
I would definitely agree that you're not getting it frequently enough. I get mine every 6 weeks at a double strength dose.

I always feel a bit crummy afterwards, and if I am at the start of a cold or other virus, it'll suddenly get worse.

Do you have fever?
Posted 9/15/2018 11:28 PM (GMT 0)
Totally agree with the others on moving your infusions to 8 weeks. Also agree on you getting to your GP. Definitely sounds like something viral. The shingles virus alone can make you feel really bad for a week or more ahead of the eruptions, and can take another couple of weeks for the symptoms to dissipate. Probably good to stick with a low residue diet for awhile, and hope you're feeling better soon.
Posted 9/16/2018 6:12 PM (GMT 0)
I would be very concerned about the way you're feeling, you do not sound like a hypochondriac at all. If you read the remicade prescribing information, the risk of deadly infections is possible. It's not likely, but it does happen. It happened to me. I had chest pain, high heart rate, low blood pressure. I was dizzy, tired, wheezing... Take care of yourself, and don't discount what your body is telling you. If you feel bad, go to the ER and get admitted. Better off going sooner than later in these situations, as a lung infection like the one I had, moves fast. It could be nothing, or a simple cold, or it could be something more sinister, but since you said you feel *really* bad, you should get seen.
Posted 9/18/2018 10:23 AM (GMT 0)
Thank you all.

I had an awful Friday night, ended up vomiting and feeling like I was dying. I didn't..!

I still feel quite head heavy.

My infusions started out at 8 weeks (300mg), but I suffered awful migraines, and the medication level in my blood was 11 (over medicated), so they dropped it to 10 weekly and I'm now 'therapeutic' at 7.2.

I know there are lots of bugs etc around, but around a 7/8 days after my last 5 infusions I have felt unwell enough to contact the IBD team, and have wound up with flu and shingles (shingles after the last one). Interestingly I work in an environment that uses infliximab for another purpose, and was advised shingles was a notable event, but the IBD team have been disinterested. I feel like they think well the Crohn's is 'controlled' so leave her to it.

Every infusion is making feel crap afterwards, so how long do I stay on it until I give up? I'm tempted to just say actually, it's been 2.5 years, I don't want my next one because they make me feel so unwell..! It's like being stuck between a rock and a hard place!

I've never felt unwell before an infusion, so I really don't think I've been 'sickening' for anything that has been triggered by the infusion. With the shingles, I was fine until a week after, then I got all flu-like, then a week after that hey-presto, shingles.

I feel like giving up!! Arrgghh!
Posted 9/18/2018 3:37 PM (GMT 0)
Aimee, by chance are you given any pre-meds prior to your infusion? I was given IV soluable Medrol & Benadryl prior to starting my infusion. This really helped with some of the after affects. I usually felt a little rough the first 2 days after my infusion & then it was over. It seems that so far the Remicade has kept your disease pretty much in check. I suspect this is why the dr is continuing it. I can't tell if you have had these symptoms for 2.5 years or if this is something that has cropped up recently.


Did you ever get checked by your PCP for the other problems you were having. I haven't seen anyone on here that their dr said shingles were related to Remicade. Shingles is a virus & some people can be more prone to getting a virus than others.

If you are not happy with your dr, get another opinion. As patients we have the right to seek care with another dr. It's no guarantee things will change, but a consult may be worth thinking about. If you get taken off of Remicade I would start looking now & research Stelara. So far, it seems to be having a good track record. Since migraines are an issue, I would steer clear of the of the sister meds of Remicade.

Take care.
Posted 9/18/2018 5:57 PM (GMT 0)
Have you had bloods checked recently?
Do you get premedicated? straydog is right, a lot of people do... It might help.
Posted 9/19/2018 2:39 PM (GMT 0)
Hi Both. As I am on mono-therapy I get a steroid shot before the infusion. And I take a Benadryll at home before as I used to get awful hives the night after an infusion - that's gone now!

The symptoms I get 6-8 days after the infusion now I've had since August 2017, so a year. The last two times it has turned into something more (last time it developed into shingles). As immuno suppressed people we are of course at more risk of viruses than others, and shingles can be seen as a reaction, however my attack was disregarded completely, and I felt stupid for contacting the IBD team. My GP was also surprised that no one was concerned.

My bloods are done at each infusion, not in between as I try not to go to the GP. My potassium is consistently low, but my other levels all seem Ok.

I am just aware now that for the last year, around a week after each infusion, I have started feeling unwell. Delayed reactions can take up to two weeks to appear but seemingly that doesn't matter!

Should I just keep having the infusion until the reaction becomes so severe that I end up really ill? It may be controlling my Crohn's symptoms to a degree but it's now affecting the rest of me - I feel like a right flake!!
Posted 9/19/2018 2:56 PM (GMT 0)
If you feel these reactions are interfering with your quality of life, I suggest having a discussion with your dr & talk about something different. I would not go on any of the sister drugs as you may well have the same reaction. Stelara is having very good results so do some research on it.

One thing about crohns we can never predict it.
Posted 9/23/2018 3:15 AM (GMT 0)
I think that Humira is actually worth a shot. A lot of the times, the reaction to Remicade is due to the mouse protein that is used, which is absent in Humira.
Posted 10/3/2018 10:23 AM (GMT 0)
Well, I'm now waiting for a clinic appointment, hopefully before my next infusion on 15th November..

I don't think I'll have much luck with Humira, it's quite pricey so not sure the NHS would go for it?

I'm now on a liquid diet as every time I ate I was sick, with nausea for hours afterwards, so I'm on shakes and watery soups until that improves.. Oddly though only one bout of proper kick-in-the-gut pain just below my ribs about 2 hours before I ate and was sick the first time, no pain or discomfort since..!

Watch this space..!
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