Feeling terrible

Hi everyone,

It’s been a while since I’ve been on the forum. Long story short, started inflectra infusions in November 2019 and I’d never felt better. I was back to my old self with basically no issues.

I went for my last infusion on December 11 and when the nurse asked me how much I weighed I said 170-175. I got my infusion done in an hour and went home feeling fine.

Fast forward to Monday and my GI calls me and asks me if I’m in pain because my enzyme levels are high based on the bloodwork prior to my infusion. I really felt fine at the time of the call.
So she sends me for more blood work, which I do, then I go for an ultrasound which looks ok, then I paid for a private MRI to see if I had a pancreatic divisium or stones or anything and had it done immediately. GI’s office called the next day and said it looked fine.

So I’ve been trying to figure out how this happened and I’m wondering if this could be it:

The day of my infusion I only at 10 tater tots before I went with a half glass of water. I know, I know, that was stupid, my wife already scolded me. Then to top it all off when I told the nurse what I weighed I said 175 but I was actually 160 and I hadn’t checked my weight in a while and it does fluctuate 10lbs or so depending. So I’m assuming I got too much inflectra, and I got it all in an hour.

In the weeks leading up to Christmas I was not eating the best, fats, fried, not drinking enough water. Then in the days after the GIs call I noticed more pain in my pancreas area. I also have crazy belching after eating, and my digestion generally feels like crap. I keep losing weight. In November I was 170-175 lbs and today I’m 158. I’m nervous to eat because it causes discomfort.

I’m not flaring, no blood in stool and I feel good UC wise. I’ve also noticed phantom itching sometimes which isn’t terrible but it’s there. I also have dry flaking skin on my eyelids since starting the infusions but it gets better in the summer and I use moisturizer and the occasional cortisone cream if it gets bad.

So my question is what do you think? Is this a cascade of evens due to poor diet then exacerbated by too much inflectra which caused me to feel even worse?

My wife is pregnant and being induced on Wednesday and I have a call with my GI on Monday. Between feeling like crap and and being nervous about my wife and baby and my own health, Im just looking for some insight. I’m due for my next infusion on Jan 22. Also, I don’t get any Benadryl prior to my infusions.

Thanks everyone!

If your dosage is 5 mg/kg of inflectra then for 175 pounds your dose would be 400 mg, 160 pounds would have been about 370 mg. I doubt that difference would affect you much since the max dosage is 10 mg/kg.

Which enzymes are high and how high were they? Are you on other meds? Poor diet for too long can make anyone feel like crap, but you have weight loss too so very concerning.

I have had acute pancreatitis from a reaction to medication. Based on that experience, I have since identified a small window of time where I was having some possible mild symptoms. They resolved on their own. Over the years of having blood drawn monthly, I have learned that there is often something that is mildly out of wack, so to speak, but that generally resolves on its own by the next month. Since all of your tests showed you are good, I would try to relax, but just continue to eat well so you feel better.

Now to the belching. Belching can be partly due to low acid. I am on a PPI due to errosions in my esophagus from acid reflux. I have acid wash up 7 hours after eating if I lay on my stomach, partly due to a hiatal hernial. All the gut throw up (what I call the extreme urges to push due to inflamation) over the probably just stressed my system on the upper end. The biggest help to easing digestion I have found is digestive enzymes. Several I have tried weren't very noticeable, but Enzyme Medica Gold helps a lot. It is pricey, but when you compare actual amounts per capsule, it is comparable because so many others are weak. Hope you get to feeling better!