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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Titrating Humira dosage


11-26-2017, 11:45 PM   #1
dzwilks
 
Join Date: Nov 2017
Location: Cleveland heights, Ohio
Titrating Humira dosage

I'm doing very well in Humira. No abdominal pain, no food sensitivities!
I feel very fortunate but since anti TNF is associated with infections and cancer, I'm thinking that it makes sense to titrate the dose to the point that it keeps the inflammation down but no more than that. I'm continuing on all my low risk medications that helped me avoid bad symptoms for over 15 years since my surgery. My doctor said that I must take c reactive protein and calprotectin and colonoscopy more often if I want to reduce the dosage of Humira. Has anyone else done this? From my googling, it looks like people in Europe might be more familiar with this approach. I'm in the States so I feel like a bad patient. My doctor says I'm a good patient as long as I keep doing well on something.

11-27-2017, 12:03 AM   #2
my little penguin
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Join Date: Apr 2012

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Why would you want to take less humira
Infection rate is higher for opportunistic infections
So if you were to get the flu then you have a higher chance of getting a tag along like pneumonia

Cancer is higher risk with aza and 6-mp for lymphoma than for humira
That said
Humira was found to be effective by keeping levels stable at a minimum of every two weeks

Ds was on humira for almost six years before it stopped working
Each time it was spread out for dosing due to non Crohns reasons including surgery
The humira Be came less effective and dosing needed to be increased
Until the last year Ds was taking humira every 5 days

So please be aware you may be risking losing aed that actually works for you
Ds started Stelara in August and we are still waiting for it to be fully effective
They told us minimum of six months on the drug to see results

Europe doesnít titrate down
In UK - They use humira for a year
If the scope is clean then they stop it
Wait for the next flare and hope humira works again
This is not due to infections
But cost
There are many papers on the hospital stay cost is calculated versus keeping folks on humira
Itís cheaper for them to hospitalize people

Plain and simple funds are a large factor

Lower level meds all have risks
Pediatric GI will no longer prescribe 6-mp or aza
Due to lymphoma risks
They use methotrexate instead
Again risks
5-asa are mild but not approved for Crohns
Due to not proven to be any more effective than placebo

I wish there was a easy answer
Meds have risks
Going under treated risks inflammation which raises cancer risk as well

Ds takes ivig which does not have those cancer risks
However
It does have other scary risks and horrid side effects

Good luck
__________________
DS - -Crohn's -Stelara -mtx-IVIG
11-27-2017, 11:38 AM   #3
dzwilks
 
Join Date: Nov 2017
Location: Cleveland heights, Ohio
Why would you want to take less humira
Infection rate is higher for opportunistic infections
So if you were to get the flu then you have a higher chance of getting a tag along like pneumonia

Cancer is higher risk with aza and 6-mp for lymphoma than for humira
That said
Humira was found to be effective by keeping levels stable at a minimum of every two weeks

Ds was on humira for almost six years before it stopped working
Each time it was spread out for dosing due to non Crohns reasons including surgery
The humira Be came less effective and dosing needed to be increased
Until the last year Ds was taking humira every 5 days

So please be aware you may be risking losing aed that actually works for you
Ds started Stelara in August and we are still waiting for it to be fully effective
They told us minimum of six months on the drug to see results

Europe doesnít titrate down
In UK - They use humira for a year
If the scope is clean then they stop it
Wait for the next flare and hope humira works again
This is not due to infections
But cost
There are many papers on the hospital stay cost is calculated versus keeping folks on humira
Itís cheaper for them to hospitalize people

Plain and simple funds are a large factor

Lower level meds all have risks
Pediatric GI will no longer prescribe 6-mp or aza
Due to lymphoma risks
They use methotrexate instead
Again risks
5-asa are mild but not approved for Crohns
Due to not proven to be any more effective than placebo

I wish there was a easy answer
Meds have risks
Going under treated risks inflammation which raises cancer risk as well

Ds takes ivig which does not have those cancer risks
However
It does have other scary risks and horrid side effects

Good luck
Thanks so much for your informed opinion. It's not uncommon however for patients that have achieved remission to want to stop taking Humira. In fact, abbvie wanted to do a study showing that they could reduce the dosage based on diagnostic testing or stop the Humira for up to 48 weeks and restart it as needed. None of the recruits however were willing to even entertain a smaller dosage or only temporarily suspending the Humira. They all wanted to just terminate the Humira.
The study has been withdrawn.

ClinicalTrials.gov Identifier:

NCT01674413



11-27-2017, 12:06 PM   #4
my little penguin
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Join Date: Apr 2012

My Support Groups:
There are studies on who may be able to stop entirely as well as relapse rates
Which is different than spreading the dose out
Which allows for antibodies to form and the drug to become less effective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408449/

http://www.mentoringinibd.com/optimi...ing-biologics/

https://www.researchgate.net/profile...ld-we-stop.pdf


http://crohnsandcolitis.ca/Crohns_an...GICS-EN-LR.PDF

And many more
Everything has risks
After having burnt through two biologics by the ripe old age of 13
For Ds (he was dx at age 7)
And only limited drugs available
Itís just not a risk worth taking for my kiddo

That said adults are different
Itís just good to educate yourself on all the risks
12-02-2017, 07:27 PM   #5
dzwilks
 
Join Date: Nov 2017
Location: Cleveland heights, Ohio
Hi my little penguin,
I read all those links but I didn't notice where it talked about spreading the dose causing antibodies. I appreciate that abbvie would want to find the most effective dose with the least side effects but perhaps the optimum dose is different for certain individuals. Of course if there is evidence that spreading out the dose to 3 weeks causes damage I won't do it. The half life of the drug is said to be between 10 and 20 days.

12-02-2017, 08:09 PM   #6
Maya142
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Join Date: Jul 2013

My Support Groups:
It depends on how quickly your body metabolizes Humira. If you do spread it out to 3 weeks, I would ask to have a Humira levels test done before your dose. That will tell you if there is still Humira in your body at 3 weeks.

If there is 0 Humira in your body at 3 weeks, then I would go back to 2 weeks to prevent antibodies from being built up. And if you do have antibodies, loss of response is much more likely.

Personally, if it were my kids, I would not mess with a drug that is working. There are a limited number of biologics and you don't want to go through them too fast. My daughters are in their early 20s (started biologics at 13 and 15 year olds) and both have been on a number of biologics and are quickly running out of options due to loss of response.

The risks of cancer are very small. The risk of cancer from inflammation is much higher, according to the many rheumatologists and GIs we have spoken too. The risk of complications from inflammation - like abscesses, strictures, fistulae - is much higher than the cancer risks from Humira.

This is a good presentation about the risks and benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-02-2017, 09:48 PM   #7
dzwilks
 
Join Date: Nov 2017
Location: Cleveland heights, Ohio
It depends on how quickly your body metabolizes Humira. If you do spread it out to 3 weeks, I would ask to have a Humira levels test done before your dose. That will tell you if there is still Humira in your body at 3 weeks.

If there is 0 Humira in your body at 3 weeks, then I would go back to 2 weeks to prevent antibodies from being built up. And if you do have antibodies, loss of response is much more likely.

Personally, if it were my kids, I would not mess with a drug that is working. There are a limited number of biologics and you don't want to go through them too fast. My daughters are in their early 20s (started biologics at 13 and 15 year olds) and both have been on a number of biologics and are quickly running out of options due to loss of response.

The risks of cancer are very small. The risk of cancer from inflammation is much higher, according to the many rheumatologists and GIs we have spoken too. The risk of complications from inflammation - like abscesses, strictures, fistulae - is much higher than the cancer risks from Humira.

This is a good presentation about the risks and benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/
Thanks so much. I will watch that video about medication risk. The Humira level test is a good idea too. I'll speak to my doctor about it.

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