Highest dose of Humira?

[lgpcarter]

Anyone on a dose higher than one injection/ week?

I tend to process medication pretty quick and have a higher than average BMI. on it specifically to heal fistulas and apparently higher levels are needed for that. Was on Humira weekly before and it didn’t do anything. Adding to Entyvio this time around and really hoping for some results.

 

[my little penguin]

Ds was on a humira shot every 5 days for about a year till it stopped working
He was then switched to Stelara
He takes that at 90 mg every 28 days

 

[Maya142]

My kiddo was on Entyvio and another biologic for a while. She has always needed a higher dose than normal of ANY biologic she has been on.

For Humira, which she was on a couple years ago, she was on 40 mg every 6 days. I don't know why she needed more Humira because she was very underweight at the time, but she did. But I think have seen on the forum members saying they are on 80 mg per week.

The combination of Entyvio and another biologic did not work well for my daughter - she got drug-induced Lupus from it but that is very rare apparently. But she does not have fistulas - she just needed a different biologic for her AS and her IBD.

 

[lgpcarter]

Thanks! I am going to see my GI next week. They've never monitored drug levels for me before, but I think that is the plan this time. I have always also needed more - doing monthly Entyvio and did monthly Remicade by the end of that too.

I will do pretty much anything to get these fistulas closed at this point.

 

[Maya142]

My daughter also tried high dose Remicade - would that be an option for you? She went up to 20 mg/kg every 4 weeks. It was a VERY high dose and I was very nervous about infections, but she was fine.

It was for her arthritis and her GI was not in charge of it - in fact, her GI said she had never used more than 10 mg/kg. But it has been used experimentally for severe arthritis in kids/teens/young adults since at least 2013-2014.

And I know right now there are some teens on the Parents' forum who are on doses higher than 10 mg/kg every 4 weeks.

Her rheumatologist did say they would not use such a high dose on older adults - that kids and teens tend to metabolize drugs more quickly.

I was just thinking of Remicade because typically they say that's best for fistulas - or at least, there is a lot of data with Remicade and fistulae.

 

[lgpcarter]

Thanks Maya and MLP - I always appreciate your input. Back from GI visit today. Humira levels "virtually undetectable" - didn't ask for numbers, antibody test results still not back. Moving to 2 shots a week.

I'm done with Remicade - had infusion reactions when I tried to go back on after a break to get pregnant. Never was tested for antibodies. I wonder if my GI would even bother to test and consent to re-try if no antibodies. It worked really well for a number of years. Based on reactions, though, would say antibodies are likely.

Next step will be trying Stelara again, this time with the Enytvio. Starting to think more seriously about an ostomy. Rectal/perianal disease just won't let up.

Thanks again.

 

[my little penguin]

On Stelara were you on high frequency???
Can’t remember

Ds took every bit of 8 months to respond to Stelara
and had to increase 90 mg every 4 weeks

 

[Maya142]

So you are on 80 mg of Humira a week? Just wondering because we begged for that dose about 5 years ago and was told that it was too risky.

And that you shouldn't inject Humira too often because of the preservative (NO idea if this is true - I doubt it is).

Good luck - I hope two shots a week + Entyvio is the magic combination that will work well for you!!

 

[lgpcarter]

Thanks.

Yes, 80mg/week. Today was injection day, so was the first at 80.

My GI didn't say anything about the preservative - just said to call if I started to feel really achy and joints started acting up (no joint pain/arthritis normally).

 

[my little penguin]

Ds was on 80 mg a week
(Humira of 40 mg every 5 days )
Did this for over a year
No issues woth the preservative or anything
Nobody even mentioned it as a concern
Good luck

 

[Maya142]

It was just 1 ped. rheumatologist about 5 years ago...saw her once in the hospital and never again. Have also never heard that again. So I was curious.

We wanted to do it every 3.5 days though, not every 5.

 

[bostton1]

Thanks.

Yes, 80mg/week. Today was injection day, so was the first at 80.

My GI didn't say anything about the preservative - just said to call if I started to feel really achy and joints started acting up (no joint pain/arthritis normally).

Ds was on 80 mg a week
(Humira of 40 mg every 5 days )
Did this for over a year
No issues woth the preservative or anything
Nobody even mentioned it as a concern
Good luck

I know this is an old thread but how did you get insurance to cover this dosage? I have the savings card which drops my co-pay from $5,600 for 40mg twice a month to $5. Does humira provide an additional savings card or does your insurance just pick up the tab?

 

[DCCrohns]

I was on 80mg/week (two syringes at the same time) for a while. I started to slide backward, so I am now on Stelara (started at every 8 weeks and am now on every 4 weeks). For both increased dosages, I had the same reduced fee with their assistance programs. It did take some justification from my doctor to up my dosage but I have a long enough history that it was approved without too much push back.

 

[lgpcarter]

I’m in Canada so it is probably a little different. My insurance is paying for it all, but I have previously benefited from programs for Stelara and Entyvio and I know Abbvie is good about helping patients as well.

 

[bostton1]

Thank you for the info.

My son just started on the 5th while hospitalized, they gave him his four doses in the hospital and then a week later his 2 shot booster before being discharged and then told the insurance company he needed to start the first four shot course as soon as he was released.

So we got six extra doses shipped to us that the gi told us to hang on to in case he needed to increase his dosage. But he predicted that after he tapers from prednisone and is solely on humira that 40mg long term won’t be enough and we’ll only be able to double dose 6 times which will keep him in remission more then likely but after he runs out of the extra doses that he’ll likely have to be on Methotrexate in combination with humira.

But I’ve seen all over the internet that people are doing weekly 40mg injections or 80mg every other week. So I was curious how people were paying for that and/or getting prescribed that dosage. We have really good insurance but from talkimg to all the different gi’s over the two weeks he was hospitalized his gastro clinic didn’t even mention that option of increasing his humira dose or frequency and just talked constantly about needing to add Methotrexate medium/long term.

We heard Methotrexate a thousand times but never anything about upping the humira dose or frequency long term, I didn’t even know it was a possibility until reading online. I guess it’s something to discuss at our next appointment in a few weeks.

 

[Maya142]

It is quite common to up the frequency of Humira - I'm honestly surprised your doctor is making such a big deal of it.

Both my daughters started with Humira every other week, then we moved to every 10 days and finally to every week. My older daughter stayed on weekly Humira for 5-6 years.

My younger one was a different story. She was put on weekly Humira too, but it wasn't helping enough. So we added MTX. And that made the difference - the combination was like magic for her!

We had no insurance issues getting it approved weekly. And both my daughters re-tried Humira later and we went straight to weekly the second time and insurance approved it. We even did Humira every 6 days for my younger daughter.

Are you going to a children's hospital for your son? A teaching hospital or university hospital is typically what I'd recommend - that way you know the doctors are keeping up with the research to some degree! Are you going to Boston Children's?

A second opinion is also another very helpful option. The top 3 pediatric GI departments are Boston Children's, CHOP and Cincinnati Children's - they have a LOT of experience with pediatric IBD. And honestly, given your GI did not seem to think upping Humira (which is standard in difficult cases!) was an option, a second opinion is probably a good idea.

 

[my little penguin]

Second that ^^^^

But just to be clear
Ds was on 40mg every 14 days
Added methotrexate (oral tablets)
After a year increased 40 mg to every 10 days plus methotrexate
Good for another year before increasing to every 7 days a plus methotrexate
That last led another year before increasing once last time to 40 mg every 5 days with methotrexate still being taken

(Ds was growing and gaining weight from ages 9 to 13)
Then switched to Stelara plus methotrexate August 2017
90 mg every 8 weeks
And increased to 90 mg every 4 weeks in a March 2018
But remained on methotrexate as a boost to the biologic

Next to no kids are on humira every 5 days at 40 mg
Every 7 days yes
But not every 5 days
Humira is used more frequently in kids with jia
So ds rheumatologist controlled the humira
Not GI

Gi tends to use remicade which is weight based for dosing (5 mg /kg)
So as the kiddo grows /gains they can stay at the same dose
Humira is straight 40 mg
So when my kiddo was 70 lbs -then he was getting 40mg
But still getting 40 mg at 130 lbs (so the actual dosing for weight decreases drastically)

 

[Maya142]

Yes, we asked about doing 80 mg per week of Humira but were told that dose is not given (though clearly it is in special circumstances). It is definitely not given often and in my daughter's case, it was her rheumatologist who prescribed it every 6 days. Her GI would not give it more often than every 7 days.

But 40 mg weekly is pretty standard and it's not terribly difficult to get it approved - or at least, it wasn't for us.