Anyone have experience with 80mg Humira weekly?

[Pilgrim]

I usually post on the kids forum, but the highest dose we've see there is 40mg every 5 days.

Has anyone been prescribed 80mg weekly?

I have not heard of this dose being used and GI is recommending it for my 9 year old daughter.

Let me know if you have any experience. Thanks so much.

 

[my little penguin]

Ds started humira at 9 -13
But the highest he was on was 40 mg every 5 days
So within a 7 day (one week) period he would get 80 mg
Example March 1 shot and then March 6th shot
But he did not get 80 mg in the same day

we were told every 5 days was as high as it went
might have changed since that was over 2 years ago

no issues or side effects at the higher dose
We added lidocaine to the syringe to reduce the sting which helped

 

[my little penguin]

Efficacy and safety of adalimumab 80 mg weekly in luminal Crohn's disease.
Bouguen G, et al. Inflamm Bowel Dis. 2015.
Show full citation
Abstract
BACKGROUND: In case of a loss of response to adalimumab, some patients with Crohn's disease may derive benefit from increasing the dosing frequency to 40 mg weekly. Efficacy and safety of adalimumab 80 mg weekly remain unknown.
METHODS: From February 2011 to September 2012, all adults who had active Crohn's disease, defined at least by Crohn's disease activity index >150 and 1 objective sign of inflammation, and required an adalimumab dose escalation to 80 mg weekly were enrolled in a prospective multicenter cohort study. Crohn's disease activity index and C-reactive protein levels were recorded during the first 14 weeks following adalimumab optimization and at 6 months. All adverse events were recorded.
RESULTS: Forty-two patients were included. The median age was 33 years, and the median disease duration was 8.6 years. Adalimumab was associated with steroids in 28% of cases and with immunomodulators in 10% of patients. Within the 14 weeks after adalimumab optimization, 14 patients (33.3%) achieved clinical remission (Crohn's disease activity index <150), and 23 patients (54.8%) had a clinical response. Clinical improvement was associated with a drop in the C-reactive protein level from 18 to 5 mg/L (P = 0.0008). After a median follow-up of 14.5 months, 5 patients underwent major abdominal surgery. Adverse events were reported in 13 patients (31%).
CONCLUSIONS: Adalimumab 80 mg weekly seems to be well-tolerated and may be effective in inducing clinical remission in patients with luminal Crohn's disease who failed to respond to 40 mg weekly or 80 mg every other week.
PMID
25803504 [Indexed for MEDLINE]

From

https://www.ncbi.nlm.nih.gov/m/pubmed/25803504/

 

[Pilgrim]

Thanks MLP! I read this report earlier today (it was the only one I could find) and in a way it wasn't very comforting. It seemed like a high rate of adverse events reported.

And these were all adults.

We're looking at an 80mg dose on the same day and then 7 days later 80mg and so on. Not split dosing.

I haven't agreed to it yet.

 

[DCCrohns]

As an adult, I maxed out on 80mg of Humira a week. I didn't have any adverse events but I did start sliding, so I was switched to Stelara.

 

[Pilgrim]

As an adult, I maxed out on 80mg of Humira a week. I didn't have any adverse events but I did start sliding, so I was switched to Stelara.

Good to know! Stelara may also be a possibility for her. How is it working out? How many years were you on Humira?

 

[DCCrohns]

I am trying to remember exactly when I switched to Humira, but at least four years (with frequency increasing over time). Stelara has been okay for me so far (I'm on it every 4 weeks)...also on Imuran and ongoing antibiotics (fistulizing Crohn's).

 

[Pilgrim]

Ouch. Fistulizing Crohn's. That is tough to treat. I hope you are seeing some results.

My daughter has been taking Humira for 5 years, similar to you. She started at age four and had dosages moved up along the way. I guess he just wants to max it out before switching to another med. We had methotrexate as well for a long while but he agreed to drop it last spring for her because she was doing well...maybe we should rather add it back in. I don't know. I hate the side effects of MTX.

 

[my little penguin]

Was the mtx shots or pills ?
Ds did horrid on mtx shots no matter the dose
Better with pills but still has a “max” dose which if he goes above lots of side effects
There is also lecovorin which can be taken woth mtx (24 hours after mtx dose ) to lower side effects
As well as increaing folic acid to 2 mg

a few other meds gave Ds migraines
So we avoid those

 

[Pilgrim]

MTX gave H migraines, even at a 10mg oral dose which was where she was at the end, before he agreed to cut it.
She started at a 15mg injection, if I recall correctly. She was quite sick at that dose (vomiting) and we did try many things including ondansetron. What did help was doubling the folic acid, but it took us awhile to get there.

 

[my little penguin]

That’s a tough one then
Meds that caused migraines we avoid for ds
It’s just too hard
Things to consider
Higher dose of humira should work faster since age is already on humira

Stelara is approved for 12 and up for Psoriatic arthritis in teens - only approved for crohns in adults
Stelara takes every bit of 6-8 months to see improvement and needs bridge therapy (steriods) until it kicks in
Stelara does better on the small intestine than large intestine
If she has any arthritis per our Rheumo Stelara has to be combined woth mtx otherwise it’s not effective for arthritis at all
Stelara still burns but not as bad as humira per Ds


it’s hard when there are very little good options

simponi is another options (I think was studied for crohns )
Of coarse remicade is preferred for kids and most insurances in the US now require infusions done in the home so lots of data there

that said per Ds docs - Ds was on anti tnf for 6 years (remicade plus humira ) they wanted Stelara since it was a different pathway and his body was too used to fighting the anti tnf drugs