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Humira Level Too Low?

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Ulcerative Colitis
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FLGuy
New Member
Joined : Nov 2018
Posts : 12
Posted 9/25/2019 11:53 PM (GMT -7)
I’ve unfortunately been having a flare up for a little over a year now and I am not sure how much longer I can continue like this. Prior to this flare up, I was taking Apriso to maintain my remission. When my flare up began, I was very reluctant to try a biologic (given the possible long term risks, cost, etc.), so we tried just about everything else (suppositories, enemas, steroids, probiotics, different brand of mesalamine, etc.). The only thing that worked for me was prednisone, but my doctor said I couldn’t stay on it long term.

I reluctantly started Humira in May, and still wasn’t feeling 100% better after 3 months, but my doctor said it may take up to 6 months to know for sure if the medicine would work or not. At this point, he recommended a blood test to check my antibody levels. During this 3 month period, I was taking 40 mg every other week (aside from the initial higher dose on day 1) and the humira level came back as being low enough to probably be the reason why I wasn’t feeling better.

My doctor said this could be due to how my body absorbs or metabolizes the medicine. Has this happened to anyone before?

Now he is trying to change my prescription to an injection once a week, but my insurance company is trying to use every stall tactic and excuse to prevent this. This may end up having to go through the appeals process, which sounds like it could take weeks.

In the meantime, I am still sick, as nothing has changed, and I am starting to lose hope. Has anyone had a similar result with humira levels being low, and/or difficulties getting insurance approval to increase the frequency of the dosage?
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 9/26/2019 2:14 AM (GMT -7)
Did you have any response to Humira at all? I had initial response with the loading doses but it never got any better and slowly was getting worse. After about 4 months doc increased to weekly injections, but it just wasn't enough. i then switched to Remicade and had better response, but after 5 months still not in remission so dosage was increased. It's been almost 6 weeks since the increased infusion and I am doing much better -- still not remission, but feels like I am finally headed there.

Weekly injections work for many people, but I developed antibodies to Humira. As long as you don't have antibodies and have had some response you should have a good chance for it to work.

Stay in touch with your insurance and doc to make sure no one drops the ball. I have had times where insurance said they were waiting for info from the doc but doc never got the request for more info. And then when they got it and sent the info, insurance said they didn't receive it and the doc had to send it again. Even with all those delays it only took a couple weeks to get approvals so hang in there!! Hope you get relief soon!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16197
Posted 9/26/2019 5:26 AM (GMT -7)
DIfferent possible causes for low humira levels.
1.) You could be using up the humira fast, due to your disease severity and extent.
2.) Your blood could be clearance humira proteins very fast.
3.) Antibodies against humira can cause the medication to be less effective, and have very low levels.

Getting Humira more frequently, likely weekly, might help when you get through the insurance nonsense.

Switching to remicade might work, as remicade is weight dosed, and you have a lot more options for dosing (adjusting frequency and/or amount of med given each time).
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FLGuy
New Member
Joined : Nov 2018
Posts : 12
Posted 9/26/2019 6:43 AM (GMT -7)
Thanks for the replies. Does anybody know how long you can stop taking Humira before it is an issue if you plan on continuing the medicine?

I was supposed to take my last two week interval dose last Thursday. When my doctor sent the new prescription over to the specialty pharmacy to increase the frequency of my dosage a few weeks ago, it of course needed a prior authorization from my insurance company.

The new prescription then basically voided the original one, leaving me unable to reorder any Humira whatsoever. Without any Humira on hand, this caused me to miss a dose. While I’m waiting for this nightmare to pan out with my insurance company and a likely set of long appeals, I’m without any Humira. How long can that continue before it is a issue, as I know you just can’t start and stop this medication at a whim?
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 9/26/2019 7:17 AM (GMT -7)
They should be able replace or revive the voided prescription. Even if the doc had to send another, it should be filled because already approved.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 9/26/2019 8:29 AM (GMT -7)
Wow, sounds like a nightmare. I'm so sorry you are having to deal with this hurdle from your insurance company. I hope you and your doctor's office can get it resolved quickly. I would call your doctor's office to get the original prescription renewed while you wait for the higher dose to be authorized. Hang in there.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 9/26/2019 9:30 AM (GMT -7)
Check with your doc .. they may have a sample pen for you to use until this get straightened out. I had a misfire one time and the doc was able to give me one so I didn't miss my next injection because it was taking Humira too long to replace the pen
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 9/26/2019 9:39 AM (GMT -7)
Yes, good idea to ask if they have any samples.
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FLGuy
New Member
Joined : Nov 2018
Posts : 12
Posted 9/27/2019 4:37 PM (GMT -7)
My doctor did not have any sample pens, as they said they needed to be ordered if they ever required any. I didn’t expect Abvie to just hand them out for free like other pharmaceutical samples given the cost of the medicine. He did manage to send another prescription back to the specialty pharmacy though, who said they are still processing it. Just what I wanted to hear.... more time wasting. In the meantime, I’m starting to feel worse, and will probably not get any more Humira until late next week, which will be two weeks past when I was supposed to take my last dose.

Since my health insurance company essentially decides what essential and life changing medicine I have access to and how much of it based on their greed, and not entirely on my doctor’s reccomendations, is there any other way to buy Humira? Can this medicine be purchased from Canada (or somewhere else) somehow?
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Sproutlet
New Member
Joined : May 2017
Posts : 14
Posted 9/29/2019 9:00 AM (GMT -7)
Hi smile
I am also on Humira. Before I received provincial (& extended health) coverage, Abbvie gave me my initial doses, as well as the next 2 months of Humira for free.
Do you have a “personal care specialist” with AbbvieCare? If yes, I’d contact them to see if they can get you your Humira pens. I think they don’t want you to ‘fail’ Humira so would rather give you a couple of ‘free’ pens if you then continue on their medication.
If you don’t have this “personal care specialist”, I’d recommend contacting “AbbvieCare program” to see if they can help.
Good luck and hope you’re feeling better soon!
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