10-29-2018, 11:05 PM   #1
BoyMama2000
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Humira v Remicade

My son is 20 and it appears that Stelara is not doing it for him. They upped Stelara to every 4 weeks and it only lowered FCP a bit, then added in uceris and FCP went to 20. We hoped that the increased dose of stelara would then kick in and we will get confirmation from his FCP later this week, but his stool didn't look good when I just collected it. If his FCP is high again, he will move to a new med.

He is a junior in college and is very muscular with a very high metabolism so they had to increase Stelara since his levels were very low. His GI seems to lean toward Remicade (he has never has Remi or Humira before) since it is easier to dose. I do wonder if he would need a lot of humira given his need for a lot more Stelara.

He will be doing an internship this summer and it will be intense....60-80 hours a week (investment banking). Given this, do you think Humira or Remicade will be better. I would hope he could get a half day off to get an infusion but have no idea how that will work. As important, do you all think one is more effective than the other for most people? He has had Crohns since age 13 but it was mild then (only in terminal ileum), it is now throughout his large intentine and rectum. At least it was on his last scope in March.

I would love to learn the pros and cons of both and your experiences with either treatment.

Thank you all!
10-30-2018, 08:17 AM   #2
my little penguin
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Ds has been on both.
It’s just a matter of what med will actually work
Remicade more likely to cause reaction
But can be up dosed easier /more frequently etc...
Works in 6-8 weeks so faster
Ds needed 7.5 mg/kg every 6 weeks at age 8 (he was dx at age 7)
But had two allergic reactions (very allergic kiddo multiple drug allergies )

Humira
Took almost 6 months to work
Needed higher dose 40 mg vs 20 mg -Ds was only 9 at the time
Then higher frequency
Had to add mtx
And keep upping frequency every year
At the end of humira was on 40 mg every 5 days (max dose )
Lasted over 5 years till he switched

Currently on high dose Stelara (almost 15)
90 mg every 4 weeks plus mtx
Mainly for his Arthritis
Crohns seems ok
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10-30-2018, 08:59 PM   #3
Maya142
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I would go with Remicade. You have much more flexibility with the dosing of Remicade. You typically start out at 5 mg/kg and infusions are done every 8 weeks. But MANY kids and teens and actually young adults, metabolize medications faster than older people.

You can go up to 10 mg/kg every 4 weeks. That is the max FDA approved dose. But some doctors are using "high dose Remicade" to get refractory disease under control. It's done in JIA and for uveitis - I know some parents on the forum have had their kids on 15 mg/kg to control the inflammation.

My daughter went up to 20 mg/kg and was also on MTX/Imuran/Arava with Remicade. Immunomodulators like MTX are often used with Remicade to prevent the patient from making antibodies to the drug.

Humira is an option too. There is now a citrate free version that does not burn. It is more convenient for a college kid - a shot every 2 weeks or every week (depending on what he needs).

The only issue with Humira is that you can only play with the dose so much. You can go from biweekly to weekly or every 5 or 6 days.

In terms of efficacy, no one can say. It depends on the kiddo. But Remicade is better studied for IBD I think. And it has been used longer.

My girls both did better on Humira than Remicade. Remicade did help them, but for a shorter time than Humira. My older daughter lasted 5 years on Humira, and the younger one lasted about 2 or 2.5 years.

Good luck!
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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
10-30-2018, 11:07 PM   #4
BoyMama2000
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Thank you for your input! What are your girls taking now? It is certainly a journey of trial and error!
10-30-2018, 11:08 PM   #5
BoyMama2000
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Little Penguin...glad your son is doing well on Stelara!
10-31-2018, 04:25 AM   #6
Maya142
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Older one does not have IBD, just AS (Ankylosing Spondylitis) - she's on Cosentyx and MTX. My younger daughter has had a more difficult journey because her AS has been active causing severe pain. She is on Cimzia for her IBD and another IL-17 inhibitor like Cosentyx.

Oddly enough her AS does not respond to anti-TNFs like Remicade, Enbrel, Simponi etc. but her IBD responds to them beautifully.
10-31-2018, 09:08 AM   #7
BoyMama2000
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The human body remains a mystery. I am always hopeful that we will someday figure out why certain meds work for some and not others .
02-11-2019, 01:51 PM   #8
Jonny84
 
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The human body remains a mystery. I am always hopeful that we will someday figure out why certain meds work for some and not others .
Have you heard about Qu Biologics coming treatment? They are able to identify biomarkers in the blood that will predicts a patients response to their drug - QBECO SSI. This will likely lead to personalised treatment in IBD for the first time.
02-14-2019, 10:38 PM   #9
Lady Organic
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I just started Humira. I opted for Humira most important reason for me being autonomous injecting the drug at home instead of having to go to a infusion center.
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
02-20-2019, 05:29 PM   #10
aypues
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100% Remicade.
It's the most effective of all the biologics, and can easiest to dose escalate in case of a low drug concentration.

Once infusions are tolerated and no reaction occurs, they can be given more quickly - like 2 hrs. He could probably go on a Saturday while he's off, or after work one day.

Usually only have to go once every 8 weeks after initial doses, but can be as low as 4-6 weeks for some.

Humira isn't as easy to be dosed as high as Remicade, and in trials it's not quite as effective anyway - maybe due to the dosing issue. It is more convenient, but for me it didn't do anything. Whereas Remicade worked immediately, like within a day I noticed the pain easing off.
02-21-2019, 09:56 PM   #11
Lady Organic
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100% Remicade.
It's the most effective of all the biologics,

Humira in trials it's not quite as effective anyway .
I'd like to know where you got this information? I always thought and saw both these biologics were quite equivalent, maybe Remicade slightly better, but only in case of fistulizing crohns.
02-23-2019, 01:50 AM   #12
aypues
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I'd like to know where you got this information? I always thought and saw both these biologics were quite equivalent, maybe Remicade slightly better, but only in case of fistulizing crohns.
https://www.ncbi.nlm.nih.gov/pubmed/27058635/

Besides the study, IBD docs have all told me this. They can control the dosing much more easily which is what determines efficacy most of the time.
02-23-2019, 08:10 AM   #13
my little penguin
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I think it depends on the doc
Rheumo use humira more
And are more familiar with how to change the dosing
Simply by changing the frequency
Every 14 days
Every 10 days
Every 7 days and highest dose is every 5 days

Remicade is only
5mg/kg every 4-8 weeks to
As high as 10 mg/kg every 4 weeks
So each has there limits

Ds tried both
Humira worked better -longer
Over 5 years

Remicade sorta worked -for 8 months but he had two allergic reactions since it’s murine based (mouse protein) and has a high reaction rate in the general population

Humira is humanized so no extra reaction risk

There really isn’t a one size fits all
02-23-2019, 01:27 PM   #14
aypues
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right. but Remicade is easier with insurance approval since it's been around for 20 yrs with countless studies for IBD. And it's weight based, which is why it's easier to manipulate.

I had no luck with getting a 7 day dosing schedule approved with insurance on Humira, but went to 4 week and 10 mg/kg with Remicade with no issues at all. A 7 day dosing schedule on Humira is a double dose. I am on a quadruple dose of Remicade since standard dosing is 5mg/kg every 8 weeks after induction. So there is more flexibility with dosing there, and I've had 2 different insurance carriers and both approved the very high Remicade without issue.

When I asked about Cimzia they said the same thing, it's a standard dose and they don't have the weight based dosing flexibility. They said the studies weren't done correctly so insurance won't pay to increase the dose in the same way as Remicade.

It is good we have so many options but there are studies showing efficacy differences between them, and you want to give yourself (or your loved one) the best chance possible for success.
02-23-2019, 01:50 PM   #15
BoyMama2000
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My son is not on remicade by his IBD docs do prefer remicade for the easily ability to dose. That us likely what he would go to next if adding Imuran to Stelara does not do the whole trick. Stelara is working but not 100%.

Of course, Humira is a bit easier lifestyle since you don't need to go to transfusions. I think that is why many docs prefer it. My son will graduate in a year and be an investment banker....long hours. So that is a consideration for him as he may not be able to get out for infusions so that is why he may do humira first if this does not work.

He has been in Imuran in addition to Stelara for 2 weeks and platelets are getting below normal so they are re-testing in 1 week to see if this is significant...time will tell. We very well may be making a change.
02-23-2019, 10:43 PM   #16
Lady Organic
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https://www.ncbi.nlm.nih.gov/pubmed/27058635/

Besides the study, IBD docs have all told me this. They can control the dosing much more easily which is what determines efficacy most of the time.
Thanks. I have looked at the litterature before my choice and have seen different studies and depending on each, small percentages differ each time, sometimes in favor to remicade, sometimes in favor of Humira. In most studies I have seen authors conclude that both drugs have similar good rates of clinical benefits, without significant differences between them. This is one, for example, favoring slightly Humira by a few percents, but with authors concluding with similar good rates:

https://www.ncbi.nlm.nih.gov/pubmed/30295785

Last edited by Lady Organic; 02-23-2019 at 11:15 PM.
02-24-2019, 10:00 AM   #17
Jonny84
 
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The way I see it they are both about equally effective and are both good options. I was on remicade for 3.5 years and it did a great job. Had to come off because of side effects.

I'm now on Entyvio - just had my 4th infusion. I was sceptical at first at it takes 6 months to reach full effectiveness. Obviously the tnf inhibitors work more quickly but now I'm 3 months down the road with Entyvio now and its working well and I know there is more improvement to come over the next couple of infusions.

Added to that, I still have one of the big guns - Humira in the locker for a rainy day.

Basically the way I look at things I'm just waiting around for Qu Biologics treatment to get approved then things should hopefully get a lot better for many people with IBD.
02-25-2019, 12:50 PM   #18
Scipio
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Added to that, I still have one of the big guns - Humira in the locker for a rainy day.
Plus Stelara as well. It is shaping up to be a big gun too. It's growing in popularity as a Crohn's treatment. And similar to Entyvio it appears to have fewer side effects than the anti-TNFs.
02-25-2019, 01:41 PM   #19
Jonny84
 
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Plus Stelara as well. It is shaping up to be a big gun too. It's growing in popularity as a Crohn's treatment. And similar to Entyvio it appears to have fewer side effects than the anti-TNFs.
Yeah, Stelara is a good shout. I did see a video the other day from an IBD conference which suggested that Stelara should be re-positioned in the treatment pyramid as it has a higher chance of success in tnf naive patients. So leaving it until after tnfs might not be ideal.

Personally I would have preferred to have had the option of Stelara and Entyvio before the tnfs as they have fewer side effects.
02-25-2019, 03:06 PM   #20
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Hi

Remicade all day for me. I found it the only biologic that was effective straight away. I had to stop because of reactions and start humira. Humira done nothing for me and I took it every week with Imuran.
I am now on stelara every 4 weeks the last year and if anything my crohns is spreading. Even though I have an ileostomy with my diverted colon still in place. I actually want to go back to Remicade and maybe methrotrexate because I have no other option except Entyvio which the doctors don't think will work.
I can't have my colon removed because my the raging inflammation will stop me from healing.
Everyone is different so you just have to try the meds and hope they work fast.
Good luck
02-25-2019, 04:13 PM   #21
Scipio
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Yeah, Stelara is a good shout. I did see a video the other day from an IBD conference which suggested that Stelara should be re-positioned in the treatment pyramid as it has a higher chance of success in tnf naive patients. So leaving it until after tnfs might not be ideal.

Personally I would have preferred to have had the option of Stelara and Entyvio before the tnfs as they have fewer side effects.
It is sometimes being used as the first biologic in the US. That's how I got it. My GI said it was well-suited to my type of Crohn's and recommended it. I've never had an anti-TNF or any other biologic.

I'm guessing that NHS rules are more restrictive in the UK and require that you first fail the anti-TNFs before trying Stelara (or Entyvio). That's unfortunate, but in a way I don't blame them. Full retail price for Stelara in the US is extremely expensive - way more than the anti-TNFs. Fortunately my insurance covers it.
02-26-2019, 04:17 AM   #22
Jonny84
 
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Yeah - Remicade and Humira have been around for long enough the biosimilars are now on the market and they are a lot cheaper.
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