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increased Humira dosage to 1 pen / wk

my son (28) has been on Humira for CD for 2+ years (1 pen / 2wks) - Dr is increasing dosage to 1 pen / wk /// is that considered a high dosage and does it come w/ significantly more risks?
 

my little penguin

Moderator
Staff member
Ds started humira at age 9
Once every two weeks
Then switched to every 10 days after a year
Then every week after another year or so and finally every 5 days
He was able to be in humira for over 5 years
No increase in risk
Risk is simply from taking the med
No issues in 5 years
He was also on mtx (due to juvenile arthritis as well as crohns )

He had to have minor surgery (non crohns ) and held humira which made it stop working when he restarted
Switched to Stelara at 14 (almost 3 years ago )

so for him biologics (even at higherfrequency has not presented a problem
Fwiw he is on Stelara 90 mg every 4 weeks and has been for 2.5 years
 

Lynda Lynda

Member
Location
Arizona
When you say "no issues" what does that mean ?

I have been using the Humira Pen Injection for almost 3 years.
First was the loading dose and 6mp.
Then the Humira pen once every 2 weeks for about 2 years.
Then the Humira pen once a week for the past 9 months.

2021 : I get diagnosed with latent TB and am currently seeing a Pulmonologist and being prescribed Rifampin. Rifampin once a day, two 300mg capsules, for 4 months.

2021 : I go to the dentist and find out that I have a lot of tooth decay and need one new crown and 6 fillings. I will need more dental work in the future.

2021 : I go to the ER and the Hospital.
I am admitted to the Hospital for just 24 hours.
Based on a CT scan, blood work, doctors consulting each other at the Hospital, I am told I am having a Crohn's flare.
Hospital doctors thought I may have an obstruction.
I follow up with my Gastroenterologist, three visits so far.
I have stool sample tests.
I do not have c-diff or giardia, but my calprotectin is 568.
Next week I have a CT Enterography scheduled.
Then I see my Gastroenterologist to find out what he is going to recommend for my future treatment for my Crohn's.

It is apparent to me that Humira is no longer working for me and I may have to change to another biologic.
It seemed everything was going well until this year.
Now I have decaying teeth, latent TB and a Crohn's flare, all at once.

So, when you say "no issues" do you mean you are experiencing no side effects from your biologic or do you mean your inflammatory disease is fully under control with no problems at all ?

My calprotectin levels :
March 2018 : 694, before Humira
December 2018 : 420
June 2020 : 668
April 2021 : 568

Lynda
 

my little penguin

Moderator
Staff member
Your caloprotectin levels have been high since 2018
Not even close to normal even on humira

Normal fecal caloprotectin is under 150 for crohns patients and under 50 for everyone else
My child has crohns not me
His fecal caloprotectin was only above 150 once in 5 years on humira (up to 230) then dropped right back down to below 15 so yes his inflammation was under control the entire time .

The majority of adults who are older (over 50) have issues with there teeth . This not a crohns issue but a age issue and genetics
My kiddos teeth are fine after 10 years of crohns

He did need to switch to Stelara after 5 years on humira
 
I've been on weekly humira (one 40mg pen every week) for a year now. I have zero side effects and my UC is in clinical remission (my labs are normal..still waiting on a follow up colonoscopy).

I don't think going to weekly humira from bi-weekly necessarily has any added risks. Many of the reasons patients go to weekly is to maintain acceptable drug levels that can't be accomplished from taking it every 2 weeks. In many cases patients process/burn through the drug much faster. Additionally, weekly humira is more common than you think and not necessarily a high dose. A high dose would be someone taking it every 5 days or 2 pens per week.
 
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