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Remicade levels low and antibodies present

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Ulcerative Colitis
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Posted 11/10/2019 6:43 AM (GMT -8)
I finally got my test results back.

My doctor's note with the results was this: "Infliximab (Remicade) level low, antibodies present. Explains your loss of response. Will need to switch to a different drug in the same class and consider Imuran for 6-12 months to reduce the chance of further ab formation. Probably will start prior authorization process for Humira, unless you want to do something different. Can discuss further at our f/u appt next week."

Results: Infliximab Drug Level 3.3 ug/mL
Note
In the presence of serum anti-infliximab antibodies, the
infliximab drug level reflects the antibody-unbound (free)
fraction of infliximab in serum.
Quantitation Limit: <0.4 ug/mL
Results of 0.4 or higher indicate detection of Infliximab.
COMMENTS:
- The optimal drug concentration depends upon patient-
specific factors including the disease and desired
therapeutic endpoint.
- Target trough ranges of 3 to 7 ug/mL and 5 to 10 ug/mL
have been studied in inflammatory bowel disease (1,2).
- In severe CD, higher trough levels (>10 ug/mL) may be
necessary to achieve fistula healing (3).
- In rheumatoid arthritis, EULAR responders had higher
trough levels (median 3.6 ug/mL) than non-responders
(0.5 ug/mL) (4).

Anti-Infliximab Antibody 40 ng/mL
Note
Interpretation:
The above result is a LOW Antibody titer.
Quantitation Limit: <22 ng/mL.
Results
of 22 or higher indicate detection of anti-
infliximab antibodies.
22 - 200 ng/mL: LOW antibody titer, little/no apparent
reduction in free drug level
201 - 1,000 ng/mL: INTERMEDIATE antibody titer,
variable reduction in free drug level
1,001 or greater ng/mL: HIGH antibody titer, notably
diminished or absent free drug level
Comments:
- Anti-drug antibodies may develop at any time during the
course of biological therapy.
- Low titer anti-drug antibodies may have little/no effect
on drug level/efficacy. Antibodies in low
titers may be transient and disappear overtime (5,6) or
they may progress to higher titers (6).
- High titers are likely to be more consequential, leading
to loss of drug efficacy by preventing drug binding to TNF
and/or increasing drug clearance (6,7).
- Maintenance of drug levels greater than 3 ug/mL may reduce
the risk of developing anti-drug antibodies (8).
- This
anti-infliximab antibody assay is not impeded by the
presence of infliximab in serum (up to 100 ug/mL), and all
positive antibody results are verified by a confirmatory
test.

My notes and questions: I was only on 3 vials of Remi (I should have been on 4 for my weight but they never bothered to weigh me) at the time this bloodwork was taken. I got 4 vials at my last infusion, on Oct. 31. I was able to get off prednisone right before my 3rd infusion and felt like I was in remission for 2 months. These antibody levels seem pretty low, so should my doctor be trying anything else, like increasing my dose and frequency before moving on to Humira and imuran? What are my chances of Humira being effective if I failed Remicade?

I'm currently taking 50 mg of pred and still having symptoms (abdominal pain, sometimes blood, painful BMs, but formed and leaning more towards constipation past 2 days! I can't win... ). It's been 2 weeks. I've never had such a poor response to pred before in my life.

Please help me decipher my results and figure out the next best step before my appt. Nov. 18. Thanks!

Also, please share any experiences with Humira or imuran.
Posted 11/10/2019 9:19 AM (GMT -8)
Aw! So sorry! I know you were so happy to be heading into remission.

I have no advice as I know others more knowledgeable than me will chime in. Have you tried entyvio? I know it’s a different mechanism than remicade so won’t affect the same antibodies.
Posted 11/10/2019 9:21 AM (GMT -8)
Thank you. No, the only biologic or immunosupressant I've tried so far is Remicade. I'll keep it in mind.
Posted 11/10/2019 10:12 AM (GMT -8)
I haven't had the lab test you mentioned above so I can't comment on that but I can relate me experiences with Humira, Remicade and Entyvio. I started out on Asacol, then Lialda, Cort, and melsamine enemas plus Prednisone with no success.
After 2 years we moved onto Humira for a year with some short lived success, than on to Remicade. When I first started Remicade at 5mg/kg plus Lialda I did fine during the start up period. But when my infusions were scheduled out to every 8 weeks I flared big time. So we scheduled them every 6 weeks and I still was flaring.
When then moved me onto Entyvio because of some major skin issues and I failed big time again. So we went back to Remicade, increased the dose to 10mg/kg every 6 weeks and bingo by my 2nd infusion I was getting better. I have been doing great until after last Infusion. I was changed to the biosimilar without my consent and I am now back to square one. I will be put back on Remicade in 5 weeks. I don't know if it will work this time though, because everyone knows that you never stop a Rx that is working because it is not likely to work again. I went off Remicade before and back on again and it worked. I pray to god that happens again. I loved Remicade and being Well for the last 2 years.

Oh I almost forgot to mention I was told that it was common to flare a bit just before your next infusion. While on Remicade I did sometimes and sometimes not but would be well again in 4 to 7 days after my Remicade Infusion.
Posted 11/10/2019 10:24 AM (GMT -8)
Thank you for sharing your story. How did you live for 2 years without any relief? I'm just starting to wonder how do I work and make do if I may not feel well for months or a year? I can make do if I get pain meds and as long as the prednisone continues to help me somewhat, but without pain meds, I can't function like this, so I'm wondering what others do when they don't respond to meds for months or years.

Yeah, I know some people flare right before their infusion and then get relief. I was hoping that would happen to me but I haven't gotten relief and had to go on 50 mg pred. It's been 2.5 weeks since my last infusion so I don't think it's going to do anything.

I read your post about them giving you the biosimilar. I would be so mad. I know my insurance company and the mail order specialty pharmacy I was going through are required to inform me before any medication switches, including to a biosimilar. The hospital here tried to give me Inflectra once but I said no (it was a big mix-up on their end). I hope the Remicade works for you again.
Posted 11/10/2019 10:41 AM (GMT -8)
Thanks Sara for your sincere response. I was wondering if a bump up in your dosage and frequency would help you. Might be something you might want to ask your doctor about before making a change to another med. In answer to your question on how I lived without any relief. It would of been impossible if I hadn't had help from my partner with getting supplies and such. I was pretty much housebound during that period and the pain was unbelievable. Never stop asking questions and pushing back when needed. Help may be just around the corner.
Posted 11/10/2019 12:19 PM (GMT -8)
Sara,
I’m sorry to hear about your test results. I’ve had great success with Humira—feel free to ask me any questions about it.
It took a few months for me to reach remission and I ended up increasing the dose to weekly injections (you start with every 2 weeks).
Personally, I prefer the convenience of being able to inject at home instead of having to go to a hospital/infusion center. The injection is 5 mins out of my week — super easy!
Wishing you well,
Lisa
Posted 11/10/2019 2:39 PM (GMT -8)
Go for the Humira if it's an option. Of all the biologics, I liked and felt Humira was the most stable and effective. And it had me fully in remission while it worked. The loading dose sucks. When I did it, it was four shots in the stomach in, like, an hour or so. Then two soon thereafter (like a week later).

I want to say that I got almost two years on Humira but due to a job loss in 2017 was not able to get it for almost two months. After that when I got back on it, my immune system killed it. Since then it was all downhill to the surgery. I've idly wondered if that break in treatment somehow started my slide but its so water under the bridge now that it doesn't matter.

But back on point, Humira was good stuff for me. Little to no side effects and quick response.
Posted 11/10/2019 3:01 PM (GMT -8)
How many mg/kg are you given and how often are your infusion? The max you can do is 10mg/kg at every 4 weeks. If you are there already, and your drug levels are this low, your body metabolizes the drug too fast and you need to move on.

I started on Humira but developed antibodies + my body was metabolizing it too fast, so once a week wasn't even working, so I switched to Inflectra (Remi biosimilar) along with Imuran. The imuran is to prevent antibodies. I've been mostly symptom free for a little over a year (randomly, a few days before I get my period, I have 1-2 days of bleeding, and I am not sure if it is because I have always gotten D with my period since I was a teen and it's irritating things, or if the hormone changes impact the UC). So you can definitely switch between the two and see one work and not the other.
Posted 11/10/2019 3:04 PM (GMT -8)
Newme: Thank you so much for the encouragement! I will ask my doctor about that. I cannot imagine 2 years of suffering with no relief. I really hope you get back into remission again soon!

Lisa: Thank you so much for sharing your positive experience with Humira! That is reassuring. How long did it take for you to start noticing any results? Yeah, I think I'll like doing my own injections a lot more than the whole infusion deal, too. That took a lot of time and money and I had a few bad experiences where the nurses poked me for an hour trying to find a vein. I won't miss that!

Andy: That is encouraging to hear! Thanks so much for sharing. Thanks for the heads up about the loading doses, too. So are all the shots given in the stomach?

Is there a copay assistance program for Humira?

Thanks everyone!
Posted 11/10/2019 3:07 PM (GMT -8)

suchatravesty said...
How many mg/kg are you given and how often are your infusion? The max you can do is 10mg/kg at every 4 weeks. If you are there already, and your drug levels are this low, your body metabolizes the drug too fast and you need to move on.

I started on Humira but developed antibodies + my body was metabolizing it too fast, so once a week wasn't even working, so I switched to Inflectra (Remi biosimilar) along with Imuran. The imuran is to prevent antibodies. I've been mostly symptom free for a little over a year (randomly, a few days before I get my period, I have 1-2 days of bleeding, and I am not sure if it is because I have always gotten D with my period since I was a teen and it's irritating things, or if the hormone changes impact the UC). So you can definitely switch between the two and see one work and not the other.

5 mg every 8 weeks. I've only had 4 infusions. I was also not being given enough the first 3 times based on my weight. They upped it to 4 vials this last infusion.

Thanks for sharing your experience about switching! I'm glad it is working for you!
Posted 11/10/2019 3:29 PM (GMT -8)
I got some immediate relief from the Humira loading doses so my GI and I suspected it was the right med for me. I was on a Pred bridge while the medicine took effect. It's a bit of a blur now (I was quite sick and it was over a year ago) but it likely took 2-3 months for the Humira to really kick in and for me to get off the Pred. Like I said earlier, I had to increase to weekly injections for the med to be effective.

There are two loading doses for Humira. The first loading dose used to be 4 injections and the second loading dose was 2 injections. I think that's changed so the first loading dose is now 2 injections and the second loading dose is 1 injection. You should confirm with your doc.

You can inject in your belly or your upper thigh. When my colitis was flaring I preferred to inject into my thigh as my belly felt sensitive. Now I mostly inject into my belly as I have a bit of fat there. Ask for the citrate free formula (citrate free has been out for a year and should be standard now but I would still ask). The injections really don't hurt (I feel a bit of pressure, nothing more). I was terrified of self injections (something about doing it myself freaked me out) and the nurse who taught me couldn't have been kinder and now it's really no big deal at all!

Yes, there's co-pay assistance. I pay $5 a month for 4 pens.

Best,
Lisa
Posted 11/10/2019 3:47 PM (GMT -8)
Awesome. Thank you, Lisa!
Posted 11/11/2019 6:25 AM (GMT -8)
Hi Sara, I would agree with your initial assessment: increase infliximab/remicade dosage/frequency would seem like the recommended approach, to get you within an ideal therapeutic (healing range). Your levels of remicade are too low, and you have minor antibodies. Minor antibodies can usually be overcome with more remicade, more frequently. For example, getting 5-mgs per kilogram every 6-weeks could be beneficial for you. That would be the standard recommendation for a test with results as yours are. Given that you were started at the wrong dosage (they never weighed you), they could do a 4-week infusion at 10-mgs or something of the like to try and get you up to the right levels fast.

The one important footnote of having antibodies against remicade, is you are more prone to having side effects now: joint aches/pains, rashes, fevers, etc etc (as your body is fighting against the remicade). So most certainly, pre-medicate with tylenol and an antihistamine (benadrly/claritin) and even consider IV solumedrol as a pre-med. Something you might factor into your decision, is that increased risk of side effects.

I think your doctor us jumping-the-gun a bit here, on saying switch to humira due to this test alone. Provided you have not lost all hope in remicade.

Given, there might be more reason than just this test to get you to switch bioligics. You're response is waning, you're on pred, and doing rather poorly with your current quality of life. That could be a reason to ditch remicade, and try something like humira/simponi/stelara/xeljanz which all respond in 6-weeks or less. Entyvio is an option, but a lot slower acting (10-12 weeks or more in some). If you have a gut feeling that is where you ultimately go, then that could be a valid path.

What to do: Regarding switching to humira/other, depends where you feel is the right path. There's some reason to give remicade more time at the right dosage (give it another month or two at the correct dosage and see where you land), and also a possible gut-feeling call to say switch and you might get better results (why delay the inevitable?). You could also add the thiopurines now (azathiopurine/imuran or 6MP) to give you a helping hand.

Another point you brought up is antibodies. If I have antibodies to remicade, can I take humira? Yes, you can. The molecular structure of humira and remicade is different enough that your immune system will have to learn all over, from the ground up, on how to make antibodies against humira. Your immune system may never succeed in that quest.

A note, that humira is NOT a weight-based drug. They start everyone on the same dosage, and increase the shot frequency if necessary.

What a bunch of idiots you've run into, at the infusion center and not weighing you. The low dosage made you a lot prone to having antibodies, and bingo you got them...jeesh!
Posted 11/11/2019 9:45 AM (GMT -8)
Thanks so much, iPoop. That all makes sense and I agree. Yes, I seem to run into a lot of idiots. Lol. I'm starting to feel close to back to normal today after 2 weeks on prednisone. I went up to 60 mg on my own for a few days because the doctor's office never responded to my question about that (they will call back and respond to about half of what I've asked...). Anyway, I'll discuss this all with my doctor next week (they never responded about getting me in sooner either). I find it a little odd he is wanting to jump right to Humira, too.
Posted 11/11/2019 3:54 PM (GMT -8)
My doctor just wrote me. He's squeezing me in tomorrow at 8 a.m.
Posted 11/11/2019 4:30 PM (GMT -8)
I agree with iPoop ... increased dosage, closer together may very well be exactly what you need. You were doing so well after the loading doses, but before your first maintenance dose you lost response. Maybe changing to every 6 weeks and going to 7.5-10 mg/kg would be perfect for you. You don't want to just blow through biologics too fast.

Good luck!
Posted 11/11/2019 5:19 PM (GMT -8)
Thank you for the advice! I'll discuss all this with my doctor tomorrow. I'm thankful he's getting me in a bit early.
Posted 11/12/2019 6:03 AM (GMT -8)
I decided to go with the Humira and imuran. My doctor came in early and talked with me for 30 minutes and answered all my questions. He said I could try an increased dose of Remicade, but he thought Humira (or Entyvio) would be the better option since I already have antibodies (he didn't seem to think it mattered the antibody test was fairly low). He said I was probably already starting to develop antibodies after the 2nd infusion. I also didn't want to wait 3ish more weeks while still struggling to have another Remi infusion, then wait even longer to see if it works and even longer to have my antibodies and Remi levels checked again.

I just got a bunch of bloodwork done, including the enzyme test for imuran, CBC, iron, and CMP. He said I need bloodwork every week for the first month on imuran. He is starting me at 150 mg assuming my enzyme test comes back okay. He really hit home the lymphoma risk. I asked him if he had seen that in his patients and he said once. He said I the plan is to only have me take imuran for 6 months to a year. I think he must have lost that one patient. Very sad. He has only used Xeljanz once so far, which I found surprising. I guess it is fairly new.

He told me not to taper pred until at least my first Humira dose. So I guess I'm going to be on 50-60 mg pred for a while longer. He also refilled my Tramadol which made me feel relieved. It felt good to have someone validate how sick I am and not act like I am a drug seeker. He ordered a bone density scan after I asked if I should get another one. He also told me to get a pap smear and a dermatology check-up once a year since I'm now on immunosuppressants.

He told me colitis can be deadly. He said Crohn's doesn't usually cause mortality, but that UC can be very serious. I knew it could happen but have never had a doctor tell me that.

So now, I just wait on my bloodwork results and wait to get the Humira approved. Fingers crossed it works for me.
Posted 11/12/2019 6:29 AM (GMT -8)
The lymphoma risk is highest in males I believe ages like 18-25 so it should be a lower risk for you (though still a slight risk).
Posted 11/12/2019 6:57 AM (GMT -8)
It sounds like a smart plan Sara. I hope you have luck with humira & imuran. If not, there are other options. On here, drugs like xeljanz seem popular, but in reality, I would imagine the # of people who don't respond to the other, more common options, is quite low. I am sure you will do well with Humira. Actually, Imuran alone, could get you into remission, so the combo may do the trick!
Posted 11/12/2019 7:07 AM (GMT -8)
I've read that, too, Bull. Thank you.

NSSG -- Thank you! Yeah, good point that probably more worst case scenarios are here on the forum.
Posted 11/12/2019 8:07 AM (GMT -8)
Good luck, sounds like a good plan, keep us posted on how it goes! We're all certainly worried about you, flaring for so long and not getting relief (even at 60mgs of pred)! Unfortunately, there is no easy-button with this whole UC thing...
Posted 11/12/2019 8:16 AM (GMT -8)
Good luck sara, I like your plan.
Posted 11/12/2019 8:21 AM (GMT -8)
Thanks guys! smile

Got my CBC results back super fast: WBC is 14.8. I have slightly high immature granulocytes. I read that prednisone can also increase your WBC. Usually my bloodwork is pretty much normal even when I'm super ill.

Iron and ferritin are normal. Glucose is a little high.

Post Edited (Sara14) : 11/12/2019 8:32:38 PM (GMT-7)

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