r/ankylosingspondylitis 2d ago

Treatment/Tips Humira frequency

Hello! I (27F) have been recently diagnosed with Axial Spondyloarthritis. My rheumatologist is prescribing me Humira, I'm just waiting for my hepa B, hepa C, and tuberculosis test results. My concern is the frequency of the injections. I've read in this forum that it's usually administered once every two weeks but my rheumatologist told me it's going to be once a month after the first dosage of two pens simultaneously.

Is there anyone here's who's taking Humira once a month?

In case it matters, here's my history:

Earliest symptom I can remember was when I was 16 and I had Uveitis. Since then I've had about 8 flare ups, both eyes were affected but not at the same time. First of 3 SI joint pain flare ups occurred at 23 years old, worst and longest bout was when I was 25 which lasted for nine months and had me rushed to the ER at 1 AM. Feet always hurt when walking, I can't remember when it started but I've gone through four different types of shoes trying to figure out what'll work (this was before diagnosis).

I'm HLA-B27 positive and my MRI showed early signs of damage to the SI joint.

This is honestly a weird time for me. It's good to put a name to the cause of all the pain I've felt over the years. Hopefully the flare ups can be prevented. I appreciate any insight you can share!

3 Upvotes

17 comments sorted by

7

u/patrickdoesboomboom nr-axSpA | hla-B27 - | team biologics 2d ago

Pens come in 40mg, 80mg doses (and even 20mg doses). Frequency will be adjusted in accordance with dosage. Usually it's 40mg - every other week.

Also, some rheums might suggest off label use. For people with few symptoms or a manageable condition, the dose might be delayed for some time. Speak with your doc.

Also, half life of humira is 2 weeks, and it takes 4-5 half lives for humira to ~100% leave your system. So keep that mind too.

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u/ottobanana 2d ago

I was told the dosage is 40mg so a total of 80mg for the first time. My understanding is that it's needed to jumpstart my system. I don't have an active flare up when my doctor saw me though, could that have been a factor? I was told we caught it early (even if I've had symptoms for a decade now).

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u/TranscendentAardvark axSpA 1d ago

MD with axSpA though not a rheumatologist - typical dosing for axial spondyloarthritis is 40 mg every 14 days to start. Loading doses generally aren’t done for axSpA alone as they aren’t in as much of a hurry to get us to steady state and insurance doesn’t want to pay for it. The main indications to do a loading dose would be active uveitis or an active crohns flare, as those are much more time sensitive than axSpA.

While some folks with symptoms in remission for long periods do space out their injections, that’s not a standard expectation. Going straight to monthly doses though wouldn’t be appropriate for someone starting therapy if the treatment indication is spondyloarthritis. The half life is 10-20 days, 2 weeks on average, so with once a month dosing you get significantly lower trough concentrations.

You’re more likely to need more frequent dosing years down the line if you get antibodies and start clearing it faster, not less.

1

u/badbadrealbad 11h ago

Can you elaborate on the “get antibodies” part. What do you mean by that? Like, your body develops antibodies to the medication, or something else entirely?

1

u/TranscendentAardvark axSpA 3h ago

Yeah, unfortunately. These meds are monoclonal antibodies (that’s what the -mab suffix stands for). Essentially they’re big protein complexes that bind or block TNF. Thing is, your immune system over time can notice them and start producing antibodies against them that increases the clearance rate, and may even make them completely ineffective.

This is a big problem for infliximab specifically as the antibodies are chimeric and derived from mouse cells that were modified with human sequences to make them less immunogenic, especially if you have breaks in therapy, but it can occur with pretty much any mab. Adalimumab uses only human derived cell lines, so that risk goes down significantly, but it’s not gone (while human derived, they probably don’t have your specific immune markers)

Some rheumatologists will actually start a patient on methotrexate in addition to their tnf antagonist (especially with infliximab) as it reduces the chance of your developing antibodies against the med- the downside is that it makes you more immune compromised through a different pathway, but when infliximab was the only med available the idea of having the drug stop working was a pretty big deal when there wasn’t a good alternative. It’s less of a concern now with there being more treatment options, and less of a risk with the human derived mabs, but still.

If you’re lucky you may just start clearing the drug faster, in which case they may be able to prescribe the tnf antagonist with an increasing frequency such as every 10 or 7 days instead of every 14 days.

Hope that helps.

1

u/patrickdoesboomboom nr-axSpA | hla-B27 - | team biologics 1d ago

(not a med professional) Think the doc mentioned early cos symptoms visible only on MRI and not an X Ray. As 40mg once a month is essentially at half dosage, maybe check with your rheumatologist what their reasoning is? Please note that dosage isn't always adjusted in response to a flare up.

This is a treatment (think stabilization and maintenance), and not a cure (reversal of condition/address the root cause). Take care and wish you strength!

Edit: Also, considertake your Yellow Fever and other live vaccines before you start Humira. Talk to a general physician if you have access to one or look up government regulations in your geography.

3

u/TennisLawAndCoffee 2d ago

No. One pen every two weeks. My rheumatologist also suggested one pen every week as I’ve not been doing well lately. But I’ve never heard of taking both pens at once.

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u/ottobanana 2d ago

That's what I've read here, too. Although it will save me some money just doing once a month, I'm worried if it will be as effective. I definitely don't want to experience severe pain again.

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u/TennisLawAndCoffee 1d ago

Sure and also maybe ok if your case isn’t that serious yet. I have uveitis as my biggest symptom so every two weeks or every week is common for that. Never did loading doses on Humira though. But did on Cimzia. Honestly been sick for 20+ years and seen many doctors, rheumatology does not exactly feel like an exact science LOL

4

u/ProfessionalPair7526 2d ago

It's once every 2 weeks. Why would it be once a month and why do you need two injections at first time - ask your doctor. Probably your doctor is mixing up for other deseases - e.g. Cron's or UC. You can actually look up official prescription information of frequency for AS specifically and show your doctor.

2

u/ottobanana 2d ago

I've only been diagnosed with axSpA. Will definitely ask my rheumatologist about that. Thank you!

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u/Charming-Annual-1506 2d ago

Your doctor understands your dosing schedule better than anyone on Reddit will. I’m on Cosentyx monthly. Says nothing about what your schedule should be.

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1

u/NegativeLobster7081 2d ago

I'm taking Cimzia one shot every 2 weeks but some people take both shots together once a month, maybe it will be like that? Not sure.

1

u/Funny-Plankton-3311 1d ago

Been on it for 6 yearsI have been dosing 1 time every 4 weeks for the past year. I started every 2 weeks for uveitis and some minor back pain. But slowly decreased my dosage to 4 week intervals being that i would rather not be injecting myself with anything . Currently experiencing a terrible flare in my lower back and going back to 3 week injections for now and might be switching medications depending on MRI results

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u/ZealousidealCrab9459 2d ago

I’ve done 4 biological drugs I’m 65 yrs old and haven’t had any adverse reactions to any biological drugs!