Humira not working, but no antibodies/levels fine

[Fi'sMom]

So about 2 months ago I started to flare after a year and 3 months on Humira with no issues (along with Lialda). Blood and mucus in small quanities, nausea, and pain- just like it started before. Thank goodness I am not going more than usual.

GI ordered the Anser ADA test to check levels and antibodies- no antibodies built and sufficent levels of Humira (I take 2 pens every 2 weeks). What gives? Anyone else have this issue?

I did Uceris for 3 weeks that didn't help, now on to Cortifoam (2 days)- which I am not hopeful about. I think it got a bit worse in the last week or so, because now I have pain. I know GI is trying to avoid Pred unless we have to.

 

[ronroush7]

I wonder if your doctor needs to switch dosage or do the injection every week instead of every two weeks?

 

[Fi'sMom]

Unfortunately- at the dosing of 2 pens every 2 weeks the test shows I have enough of the med in my system the day before I take my next dose. So going weekly won't fix it. Of course I have to be the odd one. I trust the GI- he specializes in IBD (doesn't treat patients with other issues) and conducts research, he knows his stuff.

 

[ronroush7]

I don't know. I am about the three month point of Humira myself. Maybe you need to try another biologic. Ask your doctor.

 

[Clash]

Has he considered combo therapy like humira and methotrexate?

My son has been asymptomatic for a few years. During this time he has tried remicade, remicade + mtx, high dose remicade on a short schedule + mtx, surgery, then humira + mtx and weekly humira + mtx.

His issue may be that his body doesn't fully respond to anti tnf. For some people tnf isn't the main driver of inflammation so for instance even though it improved his inflammation on the various doses of remicade and he was asymptomatic there was still lingering inflammation.

 

[Fi'sMom]

For various reasons I can't do methotrexate. We did 6-MP for a bit, but even at 25mg I was a zombie- all I did was sleep. I was fine off it for 8 months. We could try AZA, but likely to have similar reaction as 6-MP. I am just frustrated because I was fine for so long and there is no good reason for this flare, as nothing has changed! Sometimes I just want to the colectomy and be done with this crud.

 

[ronroush7]

For various reasons I can't do methotrexate. We did 6-MP for a bit, but even at 25mg I was a zombie- all I did was sleep. I was fine off it for 8 months. We could try AZA, but likely to have similar reaction as 6-MP. I am just frustrated because I was fine for so long and there is no good reason for this flare, as nothing has changed! Sometimes I just want to the colectomy and be done with this crud.

Sending support.

 

[JackG]

When I was diagnosed, my doc said to make sure I stayed on my meds because Crohn's was "a tiger". Back then nobody knew about the disease, now it seems like everybody knows somebody with it. I wonder what the stats say; are the numbers increasing?

I don't know why you would get worse after that long on Humira, other than the tiger is unpredictable. They tried Aza with me and my arms broke out enough to scare the office staff when I walked in without an appointment. Humira has been good for me for 3-1/2 years, but it's increased my psoriasis and given me joint pains I didn't have before. Then I found that they prescribe Humira for both of those conditions. What?

 

[hcrum87hc]

I'm in kind of the same situation. In December, we did the Anser test after flaring up on Humira after a little over a year (40mg every other week), and my GI said the results showed no antibodies and good levels of Humira in my system. He then put me on Imuran (currently 150mg), but I don't think this combo is working. It worked in the past, but it's hard to tell since I have a couple severe strictures. I guess I'll know for sure when I have the strictures removed next week.

 

[ronroush7]

I'm in kind of the same situation. In December, we did the Anser test after flaring up on Humira after a little over a year (40mg every other week), and my GI said the results showed no antibodies and good levels of Humira in my system. He then put me on Imuran (currently 150mg), but I don't think this combo is working. It worked in the past, but it's hard to tell since I have a couple severe strictures. I guess I'll know for sure when I have the strictures removed next week.

Sending support

 

[JackG]

hcrum87hc, I had several strictures that led me to going on Humira. They were about to do surgery in both cases, but my GI instead recommended that they:

1. drain my stomach to relieve the pressure and

2. put me on a dose pack of prednisone and

I'll be darned if the strictures didn't relax. I was only in the hospital three days each time. During my next colonoscopy in each case he used something to widen the area. Both times the strictures happened at the same area where I had surgery thirty years before.

 

[Fi'sMom]

Glad to know I am not alone. Luckily, I have no strictures. GI tried Uceris, now Cortifoam (which I fugured wouldn't help)- to try to get things under control. Since that isn't working I bet next will be more Prednisone (my GI tries to avoid it at all costs as he looks at the bigger picture and the long term consequences, although I don't mind it because it works and gives me tons of energy). I guess after that it is back to square one. Will be interesting.

 

[Charlotte.]

What about trying a different biological if combo therapy isn't an option?

 

[Tony H]

So about 2 months ago I started to flare after a year and 3 months on Humira with no issues (along with Lialda). Blood and mucus in small quanities, nausea, and pain- just like it started before. Thank goodness I am not going more than usual.

GI ordered the Anser ADA test to check levels and antibodies- no antibodies built and sufficient levels of Humira (I take 2 pens every 2 weeks). What gives? Anyone else have this issue?

I'm on humira for just over a year and in the last couple of weeks I have been starting to go a lot more and getting some mucus and cramps , my last bloods were ok but that was two months ago , I'm waiting on an appointment with the gi and taking predfoam which I hope might help a bit , funny enough the symptoms started roughly around the time I started taking the new formulation of humira.

 

[ronroush7]

I'm on humira for just over a year and in the last couple of weeks I have been starting to go a lot more and getting some mucus and cramps , my last bloods were ok but that was two months ago , I'm waiting on an appointment with the gi and taking predfoam which I hope might help a bit , funny enough the symptoms started roughly around the time I started taking the new formulation of humira.

How has the formulation changed?

 

[my little penguin]

New formulation is available in Europe but not in the US yet

 

[ronroush7]

I'm on humira for just over a year and in the last couple of weeks I have been starting to go a lot more and getting some mucus and cramps , my last bloods were ok but that was two months ago , I'm waiting on an appointment with the gi and taking predfoam which I hope might help a bit , funny enough the symptoms started roughly around the time I started taking the new formulation of humira.

Hope the doctor can get you feeling better.

 

[aypues]

Unfortunately- at the dosing of 2 pens every 2 weeks the test shows I have enough of the med in my system the day before I take my next dose. So going weekly won't fix it. Of course I have to be the odd one. I trust the GI- he specializes in IBD (doesn't treat patients with other issues) and conducts research, he knows his stuff.

What is the Humira level that the doctor is saying is enough? There is new research on levels that has changed.

 

[Ranchmom]

So about 2 months ago I started to flare after a year and 3 months on Humira with no issues (along with Lialda). Blood and mucus in small quanities, nausea, and pain- just like it started before. Thank goodness I am not going more than usual.

GI ordered the Anser ADA test to check levels and antibodies- no antibodies built and sufficent levels of Humira (I take 2 pens every 2 weeks). What gives? Anyone else have this issue?

I did Uceris for 3 weeks that didn't help, now on to Cortifoam (2 days)- which I am not hopeful about. I think it got a bit worse in the last week or so, because now I have pain. I know GI is trying to avoid Pred unless we have to.

I was on Humira for 6 years until February of this year. In August 2015, I started to feel generally unwell with cramping & pain. My GI increased my dose from 1xweekly to 2 needles a week. All testing came back with good levels of Humira & zero antibodies but I just wasn't getting better. In December the drug company tried to ship me 16 syringes to get through their shipping blackout dates over Christmas/New Years but the shipment went MIA for 4 weeks leaving me without any meds for that time. We tried reloading doses and again all tests came back with no antibodies and good absorption levels. My GI took me off Humira in February stating that sometimes despite everything looking good with stool tests & bloodwork it just stops working effectively. I was switched to Stelara & although the inflammation in my bowel is down I developed 2 partial obstructions & a structure on my past surgery site (I've had 3 resections) over the time I was on nothing while they tried to track down my meds (finally found out it was delivered to a drugstore 6000km away and was just sitting in their fridge).
They just don't know why it stopped working but everything you've said is exactly how it happened with me as well. It may have just run its course of usefulness for you and you may just need to something else.
I hope you sort it out! It's no fun after feeling so great with no explanation of why it just stopped working.