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Humira antibodies

I think I've read just about every thread on this forum since my son was diagnosed with Crohn's disease 2 years ago, and it's been incredibly helpful. I think this is the first time I couldn't find a similar scenario to our current situation, so here goes: my son is 17, and after diagnosis 2 years ago he started biweekly Humira, and went into remission within a few months. His main symptoms were diarrhea/frequency, some vomiting, and serious weight loss. He's gained 50 pounds and 2 inches in height, and BMs are totally normal, once a day.

This summer, he had a pretty obvious flare. Weight loss, fatigue, BMs up to 2-3 a day. Our doctor checked his Humira levels and it came back with a trough level of 5 and "moderate" antibodies (she didn't give an exact number). So, she added Methotrexate injections and increased the Humira to weekly. All of his symptoms resolved, he gained 10 pounds back, and actually seems to be doing better than he was on biweekly Humira alone before the flare. After 10 weeks, she checked his levels again, and his Humira trough level is up to 14 (was 5 previously), BUT the nurse said he still is showing "some" antibodies. She wasn't able to tell me if it was higher or lower than the last time, and said the doctor wants to talk to me about it when she is back in town in a couple of weeks.

So now I'm driving myself crazy trying to guess what the doctor might be thinking or planning. If there are still antibodies, does that mean our days with Humira are done, even though his trough level looks good and he is doing great? His fecal calprotectin dropped from 403 during the summer flare to 27 last week, and he has no symptoms at all. All the other bloodwork was normal as well, according to the nurse. I'd love to know if anyone has experience with continuing Humira when there are antibodies present! Thanks.
 
Location
San Diego
So now I'm driving myself crazy trying to guess what the doctor might be thinking or planning. If there are still antibodies, does that mean our days with Humira are done, even though his trough level looks good and he is doing great? His fecal calprotectin dropped from 403 during the summer flare to 27 last week, and he has no symptoms at all. All the other bloodwork was normal as well, according to the nurse. I'd love to know if anyone has experience with continuing Humira when there are antibodies present! Thanks.
No symptoms
Blood work normal
Humira = 14
FCP = 27
These are all really great news.

For that reason I think it is very unlikely that a GI would change medications when the drug level is high and the patient is doing so well (no symptoms). The rule of thumb is that the first biologic that a doc tries for a given patient will be the best one. If forced to switch the follow-on biologics probably won't work as well and last as long as the first one did. So most GIs will battle to hang on to that first biologic for as long as they can.

Since your son is doing so well, I suspect you are just seeing a little residual antibodies that aren't really getting in the way of the drug. The GI may adjust the immunomodulator dose to try to knock it down, or maybe not even that. S/he may just do nothing for now and see how it goes. If it ain't really broke, don't fix it.
 
Thanks! You make an excellent point as far as sticking with the first biologic you try for as long as possible. I really hope that's what his doctor has in mind considering how well he's doing.
 

Maya142

Moderator
Staff member
Hi and welcome (though sorry you have to be here)!
I agree with the above response - I really think you might be ok, though perhaps your GI may want to up his MTX dose. Or she may just want to check in just to see how your son is doing, since he does still have some antibodies. My daughter had antibodies to a different biologic, Cimzia, though her antibody level wasn't terribly high (but it was definitely high). We increased her frequency from every 4 weeks to every 2 weeks and her trough level went up and her antibodies went down, although not to zero. We continued on Cimzia for two years after that, if I'm remembering correctly.

When we switched, it was because Cimzia stopped lasting 14 days - it lasted about 9 and then she'd start having symptoms - diarrhea, sometimes up to 10 times a day, would wake up at night to go to the bathroom, had increased urgency, small amounts of bleeding etc. and her arthritis would also flare. Her blood work was not normal (but it never is, so that's not the best example) but her Calprotectin was high, although hers is never sky high.

Your son isn't in that situation - thankfully he is still responding well to Humira and his blood work and FCP are both normal (in fact, FCP is great!!). So hopefully you won't have to make any changes.

I will add, though, that Humira can be given more frequently than once a week - my daughter was on 40 mg every 6 days for a while, another parent's son was on it every 5 days and another parent's little girl was on a double dose weekly (80 mg weekly). So that may also be something your GI may want to discuss.

I'll tag some other parents, some of whom have dealt with this: @pdx @my little penguin @crohnsinct @Jo-mom @Pilgrim
 
Thanks for the detailed response! My least favorite game is "guess what the doctor is thinking?" but I can't help playing it every time I get a shorter than desired message from the nurse! I always want ALL the details right away, and that just doesn't seem to be the way things work. My son is currently on 25 mg methotrexate injections, so I imagine that may be the maximum for that, but there is room to increase the Humira if that would be the direction she is considering.

I just can't help looking at how he seems to be doing since adding the MTX and going to weekly Humira (feels great, gained 10 pounds in 3 months, normal once daily BMs) and wondering why she would want to change anything. But obviously, any presence of antibodies is not good, so maybe there's more that she wants us to be considering going forward.
 
I hate waiting too!

My daughter developed antibodies to Remicade several years ago, after we dropped methotrexate from her combo treatment. After adding back methotrexate and increasing the Remicade dose, her antibody level dropped back down to undetectable. So antibody development is not a one way street that always leads to a biologic switch. Hang in there until you can talk to the doctor!
 
That's interesting to hear! Do you recall how long it took for the antibodies to go down after adding MTX back? My son has been on MTX and weekly Humira for 10 weeks now, and his Humira trough level went from 5 to 14, but I have no detailed level on the antibodies- just "detected" and "still detected." I always want exact numbers!
 
That's interesting to hear! Do you recall how long it took for the antibodies to go down after adding MTX back?
I just went back to look at her labs from 2016. She had antibodies (low but detectable) on Nov. 30, she started back on MTX on Dec. 2, and her antibodies were undetectable on Jan. 13. She's still on infliximab today, 5 years later, although she's now at the maximum dose and may need to switch to something else soon.
 
Thanks for checking on that! It makes me wonder if our doctor is concerned that he still has antibodies after 10 weeks of MTX plus weekly Humira. I'm trying to feel encouraged that his trough level went up from 5 to 14 during that same time, but I don't know if that makes a difference. It seems to be helping based on how he's feeling as well as his other labs, but I just don't know.
 

Maya142

Moderator
Staff member
The fact that his trough level increased is really a GOOD sign. I also hate the waiting game (and also play "what on earth is the doctor thinking" game - that's quite common on here, as I'm sure you have gathered) but perhaps one day I will learn to be patient (hasn't happened yet 😬, though my kiddos are now both quite grown-up). And I'm also encouraged by the fact that he gained weight and feels well and his labs look good.

Honestly, if it were my child and the doctor came back after seeing those results and wanted to change his biologic, I'd get a second opinion before doing. Because you don't want to run through biologics too quickly - there are really only 4 or 5 used for kids, and so I wouldn't even want to up his dose unless his trough level was low or if he had a lot of symptoms and blood work/his FCP supported that. I'd want to save a higher dose of Humira for when he's flaring instead. Also, you are right that typically not more than 25 mg of MTX weekly is used for IBD.

Anyway, all that said, I'm a mom and not a doctor! But I do think if you're uncomfortable with what your doctor is suggesting that a second opinion is a great idea. A second set of eyes never hurts. But for now, since we don't know what his GI is going to say, I would say do your best not to worry about it. She may just want to check in to see if he has symptoms or if he feels like Humira lasts only 5 days of the 7, for example.
 
You have a good point as far as thinking maybe his doctor just wants to check in on how he's feeling based on the improved trough level and continued presence of antibodies. Nothing seems to trigger my anxiety as much as partial data! I almost wish the nurse had waited until the doctor was back in town to tell me the lab results, but I would have gone crazy waiting anyway. I can't help wondering if there's a chance that the MTX is helping directly with the inflammation with that big of a drop in his fecal calprotectin while he still has antibodies to Humira. I can't find much information on MTX as a monotherapy for Crohn's disease, though.
 

my little penguin

Moderator
Staff member
So the mtx boosts humira
So the combo of the two do much better thdd as n humira alone in the higher levels of inflammation.
So once on a biologic one does not go backwards to just an immunosuppressants such as mtx
 
That makes a lot of sense, and definitely fits how our doctor explained it. I kind of wish we'd started with the MTX right away along with the Humira in case it would have stopped him from ever developing antibodies, but the doctor never suggested it when we started Humira. I just can't figure out why the antibodies are still there, but the Humira trough level is way up compared to before adding MTX. I guess the MTX did its job raising the trough level, but not getting rid of the antibodies? I wonder if the antibodies will eventually go down if we stick with the weekly Humira and MTX.
 

crohnsinct

Well-known member
You could be my new best friend. I also hate partial data. Hate waiting. Hate missing doc's calls on Friday at 4:50 p.m. that leave you wondering for a whole weekend....heightened when said doc is then out of town for a week! And I especially do NOT enjoy playing out favorite game around here, "outguess the GI".

I will throw one more option for what the GI might want to discuss...the antibodies. If the drug is working, which it seems to be with those results, can I get a woot! woot!...they could be coming up with an antibody plan....ie: with Remicade there is a premedicate with Benadryl, steroid etc option so the kid does not have an anaphylactic reaction. Perhaps, inject in the office a couple of times. etc.

It honestly could be anything from a hey how ya doing check in to I am not comfortable with this level of antibody. Unfortunately you just have to wait, but please celebrate that the drug is working and keep us posted.
 
"Out-guess the GI," I love it! Yes, apparently that is my (least) favorite game as well. I gave in today and called the nurse back to see if I could squeeze a little more information out of her, and I must have caught her in a good mood, because she was able to dig up a bit more detail on his antibodies. Apparently, they are definitely DOWN from August, so maybe in the low to moderate range now instead of moderate to high? Also, we were able to get in for a consult appointment late next week to actually talk to the doctor in person and find out what she is thinking as far as next steps.

Of course, none of this will stop me from playing out-guess the GI for the next 6 days...
 

crohnsinct

Well-known member
This is excellent news! I don't imagine the GI has anything sinister to discuss. You can play the game but I am a pro...12 years and running!
 
I'm trying to focus on the potential positive news, but the waiting is always the worst. Today I distracted myself by nearly slicing my thumb off while cutting an avocado and hitting myself in the foot with a sledgehammer while pounding a stake into the ground. Maybe non-stop Googling of medical studies is a safer activity for me!
 
Well, we had our GI appointment today, and the news was mixed but cautiously positive. We finally got a copy of the official lab results, and his Humira trough levels were as we thought: improved from 5 in August up to 14 in November after increasing Humira 40 mg to weekly and adding 25 mg MTX injections. His antibodies are down, but only slightly. From 198 in August to 139 in November. Both are in the intermediate range, which our doctor says is the range where she is okay with a cautious watch and wait approach for the next 3 months until we run all the labs again. Obviously, if any symptoms pop up, we would check sooner. She says that Remicade would definitely be the next option if things take a turn.
 

Maya142

Moderator
Staff member
That sounds like a good appointment! I know antibodies still aren't where you want them to be but you do have a plan B, in case she needs to switch.
 
Yes, I'm trying very hard to focus on the positive for now, which is not always my strong suit. The tricky part for us is that although we know Remicade has a good chance of being very effective if we need to switch, it would be a pretty major challenge for our family to make it work, which is why our doctor has been doing everything she can to squeeze every last bit of effectiveness out of the Humira/MTX combination. We are in a pretty remote northern area, and Remicade infusions would mean overnight trips with hotel stays for us. Not a pleasant thought, especially when you add in our roughly five months of "exciting" winter driving conditions!
 

my little penguin

Moderator
Staff member
Most kids and adults can have home health nurse come to your house or Dorm Room to do the infusion
No need to travel
Most insurances insist on that now
So worth looking into
 
I so wish that was an option for us! With my son's history of anaphylaxis (food and medication allergies) coupled with how far we are from medical care, his doctor strongly advised against that as an option if we need to switch to Remicade. As an unfortunate side note, home health nurses are in very short supply up here...the average wait time for new patients is 9-12 months right now. I appreciate the suggestion, though!
 

my little penguin

Moderator
Staff member
Ugh ….
Given his food and medication anaphylaxis (my kiddo is the same )
You may want to talk to your Gi about “other “ options

my kiddo reacted to remicade (murine protein -mouse ) -humira is more humanized less likely to react
Docs stated it wasn’t if he would react but when
Ds given his history
He made it 8 months on remicade
Lots of skin rashes
And finally full reaction x2
(Second time they used iv solumedrol and Benadryl -still didn’t stop it )
 

crohnsinct

Well-known member
IDK where you live but many of the specialty pharmacy providers have infusion centers now staffed with nurses, pharmacists and medical doctors and they are very capable of handling allergic reactions. You seriously would not be able to tell that you weren't at a hospital based infusion center. Just put that in your hat in case your child has to move to Remicade but for now just enjoy the good news!
 

Maya142

Moderator
Staff member
You could try another injectable anti-TNF - they're used less frequently, but Simponi is approved for UC and Cimzia is approved for Crohn's (in adults, though there have been pediatric Cimzia trials definitely). My daughter did well on Cimzia for almost 4 years (after which she developed antibodies and it would only last for 9 out of 14 days, so we had to switch).

She has also had home infusions - she doesn't have a history of anaphylaxis, but the nurses carry epinephrine and everything else they would need for an allergic reaction. BUT our circumstances are different - we are fairly close to a hospital - about 10 minutes away at most. If he has a history of anaphylaxis and you're really far away from a hospital, it would depend on what his GI/allergist think is safe.

Stelara could also be an option, but as I'm sure you know, it's not an anti-TNF.
 
You all make really good points. The doctor did mention Stelara as a possibility, but seemed to prefer giving Remicade a try first if we need to move on from Humira. I hear rumors that a new pediatric clinic with an adjacent infusion center may be coming to our general area in the next year, so that's hope for the future. As for now, can I just stick my head in the sand and pretend that the MTX will get rid of all the antibodies and that Humira will keep working for the foreseeable future? Uncertainty is my least favorite thing ever, and this disease seems to specialize in it!
 

my little penguin

Moderator
Staff member
Hugs
None of us know how long each med will continue to work
And we all dread each med change since your left with the “will it work “ how long till it works “ then “how long will it work “
I get antsy close to 5 years since that is the longest he made it so far (humira )
Stelara he has been on 4 plus years now 🙈
 

Maya142

Moderator
Staff member
You know, in rheumatology, they actually do not test drug levels and antibodies. The reason is that when they did studies, they found that in rheumatology patients, antibody levels did not correlate with whether the drug worked on not. Some patients had no antibodies and failed drugs. Others had high levels of antibodies and the drug still worked. The one exception is Remicade and that's because it's made of mouse protein. But for humanized biologics like Humira, they still do not check drug levels and antibodies. So definitely stick your head in the sand and hope for the best!
Also, if your son is turning 18 soon, then that should give him access to adult infusion centers - even if he's with a pediatric GI. Not always, but sometimes. So there is hope. There was a mom on this forum who always used to say "Don't borrow trouble" - I think that makes a lot of sense (of course, easier said than done, but it's worth a try!).
 
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