High Humira levels but flaring

[LuckyD]

Has anyone experienced a UC flare but have high humira levels (25.38)? I've been on humira for almost 10 weeks now and for the last two weeks my symptoms have gotten worst (urgency, cramps and diarrhea). Coincidentally around the same time I switched from Apriso to generic mesalamine; not sure why my GI changed this. I do biweekly shots of humira and I have been switched back to Apriso since Friday after bringing this up to my GI. No improvement so far....now they put me on a prednisone taper until we wait for new lab work. They're checking for C.Diff, parasites, etc.

The waiting game sucks...they talked to me about considering Entyvio next if humira doesn't work or redoing my loading doses & increasing my humira to weekly. This disease is so frustrating...just when I was finally seeing improvement. ☹

 

[Scipio]

Well, the diarrhea could be due to something other than your UC, which is why your doc is testing for infection with C. diff., parasites, etc. Assuming those are not the cause and the real cause is a worsening of your UC, then it could be either one of the two things:

1. Primary nonreponse - which is when the Humira simply didn't work for you. This is the likely explanation if the drug never worked for you or never worked very much - that after you started on Humira you never went into real remission, showing only weak or no improvement.

2. Secondary nonresponse - this is when the drug works at first, putting you into a decent remission, but after a while it loses its effectiveness and the symptoms come back. The most likely cause of a secondary nonresponse is the development of antibodies that bind with and inactivate the drug.

If you have an infection then the first step is to treat the infection. If you have primary nonresponse then the next step is probably to switch you to another biologic, Remicade or something. If you have have secondary nonresponse then normally the first step is probably dose intensification - to give you a higher dose or give doses more often. But you already have a pretty high drug concentration, so that approach is unlikely to work. They may try adding an immunomodulator such as azathioprine of MTX to knock down the antibodies. But you will probably also have to switch to a new biologic.

 

[LuckyD]

Thank you so much for educating me on the subject; very informative. I was told that my labs show no antibodies to the humira. I guess I'll have to wait and see what my new lab work show.

 

[my little penguin]

10 weeks isn’t very long for humira after starting it
Most need a bridge therapy (steriods ) when starting biologics to allow the
Humira typically takes 3 months but can take up to 6 months to work
When Ds started humira it did nothing for over two months but he was on the kiddie dose
Then they moved him to the adult dose which still took another 4 months to complete get relief

Good luck

 

[LuckyD]

Thanks for your feedback MLP. I figured 10 weeks was still to early to gage effectiveness. I was surprised to hear my GI talking about switching to Entyvio. Maybe he feels this way since I responded 3-4 weeks in and now going backwards?

Anyway...I'm back to prednisone which has never done anything good for me except give me some nasty side effects. I wish I was one of those patients who got some relief and gain weight with it. I'm still 15 lbs underweight at the moment.

 

[my little penguin]

Entyvio takes 6-12 months to be effective
Typical is 8 months
And needs a bridge therapy
As far as weight
Have you tried formula ?
Boost /peptide /peptamen
They can be used as a supplement to food
Or as Een exclusive enteral nutrition (formula only )
They use this in kids a lot instead of steriods
Ds did both
When added as supplemental formula - Ds gained weight

 

[LuckyD]

I have not tried formula...I assumed this was only for kids. I do drink a banana smoothie everyday with some oat milk and peanut butter.
I'll make sure to bring this up to my GI. I'm frustrated with my clothes fitting so big and looking like a skeleton.

 

[my little penguin]

Gi will have samples to try
Most start with semi elemental
GI can prescribe it and insurance covers under durable medical equipment supplies (not prescription coverage )
https://www.nestlenutritionstore.com/shop-by-brands/peptamen.html

 

[LuckyD]

Just wanted to give a quick update in case anyone else goes through something similar.

I got my lab work back and the good news is that I don't have C.Diff or any other virus or infection. On the other hand my Fecal Calprotectin levels are still high (595) but have gone done significantly since I was diagnosed in October (1500+).

So for now, my GI is considering redoing my humira loading doses and possibly put me on weekly shots. We'll have to wait for the insurance paperwork to go through. He also put me on a 50 day prednisone taper (20mg to 2.5mg). So far the prednisone has helped a bit..I managed to put on 3lbs since last week when I started taking it.

I have a follow up appointment on Monday to discuss the details. I'm hoping these adjustments finally do the trick. Considering where I was at when I started humira in January, I feel I'm still in a much better place than where I was in October.

 

[my little penguin]

FWIW Ds was on humira for over 5 years
3 months every two weeks at 20 mg
1 year every 2 weeks 40 mg
2 years every 10 days 40 mg plus mtx
1 year every 7 days plus mtx
1 year every 5 days plus mtx

so there is plenty of room to change things up as needed
Glad you have a plan