Symptoms are back -- Is this normal before infusion?

I have my fourth Remicade infusion scheduled for this Thursday afternoon. This weekend I started getting really loose stools again and tonight I saw a little blood and am having very loose stools/mucous and not much stool coming out but I'm having gut pain like I need to go. I also have no appetite, but that may be from the super bad cold I got yesterday. So, basically my whole body feels like crap right now and I'm worried and really bummed because I thought I was in remission. I've been off prednisone for two months now.

Is it normal to get symptoms again right before your next infusion? Will I feel better right after the infusion? What am I supposed to do until Thursday? Go back on pred or just get sicker and sicker or what? Since I'm new to Remicade, I don't really know what to expect, like if this is normal or not (I hope not because it would suck to get sick every two months).

I called my gastroenterologist this morning asking if it's okay to get my infusion with this cold that feels kind of like a sinus infection and also mentioned my gut symptoms on my voicemail. The nurse called me back and said it's fine to get the infusion but she said nothing about my symptoms. I didn't press the issue because I thought maybe my stools were just off due to the cold but now I know this is UC symptoms. I'm going to call them again tomorrow morning.

Thank you.

This will be your first maintenance infusion. You might want to get your remicade levels checked to see if you are in therapeutic levels. You would need to get the test the day before your infusion (or right before the infusion), When I had mine checked it showed I was in the low therapeutic range & no antibodies so doc increased the dosage. I've now had 2 infusions at 10 mg/kg and I think I am about 95% back to normal.

My doc told me that if I start getting symptoms before my infusions we can move the infusions closer together. Like every 6 weeks instead of 8 weeks. That might be what you need rather than the increased dosage. 8 weeks may be a little too long for you.

I had to push my doc to get the levels checked. He said he liked to wait a little longer but he ordered the test for me right before my 4th infusion. Be persistent if you get push back from your doc.

Hope your cold passes quickly!

Are you still using rectal meds? They might help keep you from back sliding too much

I’m speaking from entyvio experience which I think is a little slower acting — IMO you’re still early in your infusions so I wouldn’t consider it totally unexpected. If it happens before your next infusion then it might be time to consider the time interval between infusions. You might also want to consider going back to nightly rowasa in the week before your infusion

Sorry to hear your symptoms are suddenly worse.

Getting the remicade concentration and antibody test is your best bet, you might need more medicine (and yes, getting your weight right in dosing is important).

Always mention taking pred to your doctor, and verify this. Prednisone tapering is only necessary if you've been on pred for 3+ weeks. If you are doing 50-mgs of pred until only this Thursday then you are fine to just cease it cold-turkey. For peace of mind, you could do a very fast taper: 50 to 25 to zero.

Maybe. There's no certainty in it all. Sat next to some people who feel instantly better as they are getting their infusion (claim their aches go away and bowels settle down). Others, like me, might take a couple days to notice anything.

If your worsened symptoms are due to insufficient remicade levels, then boosting those levels should stop the immune attack, and allow your body to heal. And there in lays the devil in the details. If the worsened symptoms did superficial damage then you'll bounce back ultra fast, but if the damage was more severe the bounce-back would inherently be much slower (days, a week, or longer *shrug*).

I understand why you took the pred, and I likely would've done the same. However, do make sure to keep your gasteroenteroligist within the loop and make sure he/she is contributing to these decisions as well

I was flaring right before my first maintenance dose and it took 3 days for symptoms to disappear. I went from so sick to fine in 3 to 4 days. My dose is 7.5mg/kg and that works for me.

Keep us updated! Hope you feel better soon!

Thank you. I know you've told me that before iPoop. I always forget.

I just got my bloodwork done. The lab girl I had seemed new and she had trouble sticking me and then once the needle was in, she said my blood was coming out really slow. I eventually very nicely asked for someone else. I'm not super confident she even printed out the correct test. She was looking it up in the computer and a Promethus test came up and she asked me if Promethus was the generic name for Remicade. I said no, that I think that's the name of a lab or a test (thanks, healingwell). So then she called someone on the phone and that person didn't seem to know either but told her to search for infliximab. So the test she printed out was called infliximab and anti-infliximab antibodies. I assume that's the same as what my doctor ordered even though it is named differently (Remicade trough with antibodies)? Anyway, the second girl got the needle in correct right away. Thank god.

I sincerely hope the nurse practitioner at the new infusion center I'm going to Thursday doesn't have to prick me a bunch. I'm starting to have anxiety over it. Either that, or someone needs to start giving me xanax as pre-meds before infusions, lol.

Ok, she didn't end up doing that one, so I guess that's a good thing. Thanks again.

Re hip pain....bursitis feels like that. If it doesnt improve, talk to your GP. X-rays don't show it, however manipulation testing can lead more to a diagnosis. Have you had IT band issues?

Hope all goes well at the new centre.

q

Not related to UC...but when flaring, there would be general and referred pain, discomfort and general inflammation possibly.
There are 3 bursa in the hip, mine is trochanteric bursitis. Hell pain, and it took a long while to get diagnosed, especially with me already having back issues and it could be assumed to be that. Celebrex worked amazingly for it.

q

It is...my sister has it, my dad had it. Thought I did, but no.

q