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Inflectra/infliximab question… minor blip?

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Ulcerative Colitis
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Posted 8/2/2022 10:55 PM (GMT 0)
I have been on Inflectra since September 2021, getting it every 4 weeks with good results.
So over the past two weeks I’ve experienced some cramping and some mucus when having a bowel movement. These are the only symptoms. No blood, no urgency and no diarrhea like I have with my normal flares. I have been under an incredible amount of stress so maybe this is the reason for the minor symptoms but I’m unsure.
My questions are this: is it normal to have minor blips while being treated with a biologic? Or does even a small increase in symptoms indicate antibodies or medication failure? Should things be close to perfect all the time if it’s working or do some symptoms happen from time to time?

I have an infusion tomorrow and hoping that just takes care of this. Things are not bad bt any means but having these minor symptoms just worries me.

I’d love to hear your experiences and thoughts
Posted 8/2/2022 11:50 PM (GMT 0)
HaleyA,
You should probably have your Remicade and antibody trough levels checked. They draw blood right before your Infusion. Some doctor's do it a day or 2 ahead of your infusion.

If you build antibodies the Infliximab won't work as well. When that happens your doctor may try adding another med to limit the antibodies... Like methotrexate or others.... If your medicine trough level is too low they may raise the amount and or shorten the timeframe. (Timeframe can't be shortened. 4 weeks is the shortest timeframe) I'm unsure if you are getting 5kg, 7.5 or 10 kg of meds...

I am on 10 kg every 6 weeks. When my antibodies get above 3 on the trough test I take methotrexate. When I take methotrexate the antibody level reduces and the Remicade trough level increases. When my trough levels of Remicade get low I start methotrexate also. Once the trough level raises back up to 10 or above I don't have to take methotrexate.

When doing a trough test it is supposed to be taken right before your infusion... However.... If you are in a pattern indicating your symptoms are occuring at 2 or 3 weeks your GI may want you to take it at that time to see what your levels are at that moment.

My GI utilizes trough tests alot to monitor my disease medications -- but I have severe fistulizing Crohn's AND UC so that may not be the norm.

Clo
Posted 8/3/2022 12:05 AM (GMT 0)
Clo,
I had my levels checked in I think February. My levels were lower than they needed to be which is when we changed the medication to every 4 weeks. I am getting 5kg every 4 weeks.
My doctor doesn’t like to do the test too often unless necessary because it’s very expensive but maybe I should ask for it?
Do you have some symptoms come back when your antibody levels go up? And increasing the dose can cause them to go back down?
Posted 8/3/2022 12:05 AM (GMT 0)
Haley, yes a person can have a blimp while on these meds. Stress can affect people in different ways, when it happens with me I get cramps & diarrhea from hell. I would keep an eye on things, hopefully whatever the stress is you are dealing with will be over soon. Contact your gi if things don't improve in a few days contact your dr.

Take care.
Posted 8/3/2022 12:26 AM (GMT 0)
Haley,

Stress will cause me to have those issues also. Once the stress calms down I return to how I was before. (Slowly) When I have this happen I contact my GI and my primary care doctors.

It may be the stress is sending you into a miniflare. So when I start having blips I start a food diary to make sure my body isn't starting to have issues with something. It sounds crazy--but I started a new seasoning salt that I loved. Sprinkled it on everything. GI could not figure out what was wrong. Multiple trough level tests... Finally started a food diary .. wrote down everything... I kept telling my GI that I was only eating my safe foods. GI had me stop condiments and that helped. We slowly added things back in and when I got to that seasoning salt it started everything up again. What a mess. Sigh... I love that seasoning salt.

What were your numbers?

My GI tries to keep my Remicade levels above 10 and antibodies below 3.

When my antibody level starts increasing so do my symptoms. For me it starts with my extra intestinal symptoms... Psoriasis scalp itch, night sweats, uveititis, then it starts impacting me with nausea, trapped gas, going to the bathroom more, excess mucus.

As the trough levels rise the symptoms start to recede.

Clo
Posted 8/3/2022 12:33 AM (GMT 0)
My levels were below 5 and they only told me I had no antibodies detected.

I was really really stressed about a vacation because before Inflectra vacations weren’t super fun because I was always having symptoms on them. I just got back from the vacation. But when I got back yesterday I also started my period so lots of cramping so hard to tell if things are going back to normal haha
Posted 8/3/2022 1:10 AM (GMT 0)
Good news that you didn't have antibodies. The level is a little low though.

Oh.... I can't remember where I read it...it was a study though... But hormon levels can impact people with IBD and cause sorta mini flares right around periods and/or ovulation.

Plus coming back from a vacation.. for me .. I am always just alittle stressed during vacations. When I return my body sorta goes thru a readjustment period. Then after a few weeks it gets better.

It takes me like 3 infusions when we are trying to increase my trough level before I see or feel a change when we change my dose or change my time frames. So I wouldn't request a test yet.

Clo

Post Edited (clo2014) : 8/2/2022 6:13:49 PM (GMT-7)

Posted 8/3/2022 1:20 AM (GMT 0)
Should I make the nurse or doctor aware of it at my infusion tomorrow? (I get my infusions at my doctors office) Or just see what happens after the infusion?
Posted 8/3/2022 5:33 AM (GMT 0)
If my doctor and nurse did my infusion I would let them know that I was having symptoms at 2 to 3 weeks now. They will want to watch you and make sure your dosage is appropriate and that you are getting dosage increases as needed. They'll probably tell you to wait for a couple more infusions. (We go at least 8 weeks after med/timing changes before expecting any changes... But that varies individually.,) You want to give the new dosage of meds enough time to work.

I also send a message to my GI thru our portal so we have a point of reference.

Clo
Posted 8/3/2022 9:33 PM (GMT 0)
Infusion went well. Fingers crossed things go back to normal. I actually didn’t have any cramping this morning with my bowel movement.
The nurse acted like stress was a pretty common issue with GI problems.
So hopefully that’s all it is
Posted 8/4/2022 8:54 PM (GMT 0)
Just wanted to add — I’m on entyvio and a 5 year remission. I still get blips where things are not bad but not normal. It never hurts to add in some rectals (if you haven’t already) as those are really great for “blip” symptoms.
Posted 8/4/2022 9:10 PM (GMT 0)
Yeah I’m going to see what happens since getting my infusion yesterday. Today was actually totally normal with no issues so hopefully it just continues.
Unfortunately rectals don’t work for me. I used mesalamine enemas for about a year with semi good results and then they just stopped working and actually became really painful to have the medication in there.
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