• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Humira Club Support Group

my little penguin

Moderator
Staff member
If it's the pen(auto injector )
They make a loud click when you hit the button
We use the syringes which are much easier to control the rate of the medicine going in
It does burn (not in the U.K. Though they have the newer formula )
Waiting patiently for that in the US

Tiredness is a given
It's a sign the med is working
Some get a rash as the injection site
Ds has had that more than once
But no issues
You can ice before and after
You may also see a small bruise - depends on where you inject
Again not an issue
Good luck
 
I am getting my Humira today and my nurse comes tomorrow to do the first injections with me. I am nervous about it but hope it works.

I talked to my dr. today and I have inflammation and colitis but not strictures. She put me at moderate right now based on my colonoscopy and endoscopy.

I feel lucky as my symptoms have been mild to moderate for the past few weeks. Only one major flareup. It took so long for me to be diagnosed as I had not the usual symptoms and everyone put it that I was just an anxiety ridden person and that was causing my acid reflux and bloating.

Additionally, I am lucky as right now I do not have an issue with foods. I seem to be able to eat anything when I am not nauseous and can actually eat. The nausea comes and goes as does the bloating and it does not matter what I eat it is still there.

I have come to realize that I need to take each day and live it to the fullest as my symptoms may get worse but hopefully better.
 
I am getting my Humira today and my nurse comes tomorrow to do the first injections with me. I am nervous about it but hope it works.

I talked to my dr. today and I have inflammation and colitis but not strictures. She put me at moderate right now based on my colonoscopy and endoscopy.

I feel lucky as my symptoms have been mild to moderate for the past few weeks. Only one major flareup. It took so long for me to be diagnosed as I had not the usual symptoms and everyone put it that I was just an anxiety ridden person and that was causing my acid reflux and bloating.

Additionally, I am lucky as right now I do not have an issue with foods. I seem to be able to eat anything when I am not nauseous and can actually eat. The nausea comes and goes as does the bloating and it does not matter what I eat it is still there.

I have come to realize that I need to take each day and live it to the fullest as my symptoms may get worse but hopefully better.

So, how are you doing? Tired? Relieved? How do you feel about doing the injections by yourself now?

My blood work finally came back (huge Quest screwup) so I'm hoping to start next week. Fingers crossed!
 
So, how are you doing? Tired? Relieved? How do you feel about doing the injections by yourself now?

My blood work finally came back (huge Quest screwup) so I'm hoping to start next week. Fingers crossed!
I actually start tomorrow with the Four injections I will definitely let you know. Hoping all goes well. :)
 
Anyone had indigestion /acid reflux as a side effect? I started humira beginning of June and a month later started having really bad indigestion and acid reflux, which I never really had an issue before. Anyone?
 

Lynda Lynda

Senior Member
Location
N/A
Whoa, last Humira post here was 2017 ❓
Is there another "Humira" thread ❔

Recently I have watched YouTube videos of people injecting Humira with syringes as well as the "pens." 🙁 Ouch.

Well, my Humira Nurse Ambassador ( yes, that is what she is called ) will be at my apartment on Monday to explain everything to me. I am more worried about the cost than the injections right now.💸

I will have to be a strong advocate for myself to try to get financial assistance for this drug. I live on a fixed-income.... Social Security Disability.

Does everyone get prednisone first then move on to a biologic later ?
My doctor is going right to the biologic first.
I was just diagnosed with Crohns. ☹

Have a good weekend. 🐼
 

Lynda Lynda

Senior Member
Location
N/A
Lynda, there is a program that will help with the payment and then you have to only pay five dollars each time.
Thanks !🌻

I will ask my "Humira Nurse Ambassador" about that. I do not even know if my health insurance company is going to approve this drug for me yet. The Nurse and I will go over that process. A Humira prescription requires a Pre-Authorization from my Health Insurance Company. 😕

Humira can keep the cost high because they hold the patent, so no generic for Humira can be made. 💊

🙂
 
Hello Everyone,
I had my first 4 shot loading doses yesterday and it went pretty well. Patty, the infusion nurse was awesome. She calmly told me not to tighten up and her soothing voice worked. It was far from pleasant but not as bad as I thought would be.

BTW: Canada and some other countries now have the non-stinging shots without the burning citric acid. The USA is slower to do this due to FDA requirements, which are frustrating, but I think somewhat good as drugs get a lot more research before they're released on the public.

I did all 4 in my thighs. My tummy is swollen and tender from the Prednisone. On the sidelines for nearly 8 months, my once sculpted by bicycling legs are now chicken legs with a lot of loose skin, which may have helped the pain factor. She did the first one and I did the last three. The Humira rep was there and I got a take home kit with a talking needless pen to practice with in case my brain fogged mind forgets in two weeks.

I did feel like Hell before I went to bed last night. I had a rough morning yesterday. I woke up late and had to rush to get a pressure valve repaired in order to get the sprinkler system working so it could be aerated and fertilized. When I turned the water on it shot ten feet in the air, so I had to fix it. Prednisone makes me crazy and I had a big shot of angry adrenaline, which helped me get it done fast but ruined me afterwords when I crashed. So that weakening of my body may have made the reaction to 160 mgs harder to take.

I'm l am looking forward to success and getting to what seems to be so ellusive, remission.
 
Last edited:
I wish to join the Humira Club.
My GI doctor told me it is common protocol after failing Remicade to go to Humira. Humira has human derived antibodies, hence the name. Remicade has antibodies derived from mice, which I had an allergic reaction to. He said it will likely work for at least a year. He wants me on Stellara, but because it cost $30,000 to $70,000 a year, it is hard to get approved before failing 2 other treatments.

Most of the treatments have a 60% chance of working, it's somewhat of a roulette wheel. I hope we all get the ball to land on a winner as soon was possible.

If your doctor puts you on Humira, here is the contact information for the Humira Complete program, which is at no cost to patients.

800-448-6472 or visit Humira.com

Good Luck
 

Lynda Lynda

Senior Member
Location
N/A
My mind is just spinning around in circles this afternoon. So many unanswered questions about this Humira. My health insurance company, my application for assistance, how long these processes take and are there any added costs that I have to pay. I see my GI tomorrow, he will fill out his form regarding my Humira dosage and send that form to whoever needs it. And I will talk to my Humira Nurse Ambassador on the phone tomorrow too.
I'm tired. °102 here today. And I am starving for real food.
 
The non stinging Humira will take longer to roll out in the US, partially due to being the largest market in the World and also due to the strict rules of the FDA.

Abbvie the manufacturer has got the US patent extended from 2016 to 2023, to block the other companies who developed lower cost alternatives. As well Abbvie raised the price 63% between 2013 and 2016 to cover themselves if the original parent expired as it should have. $57,000 a year per patient and $16 billion in revenue they are slow to change anything that will disrupt their profit margiins. $10 billion here in the US, 63%. So hopefully the will start to roll it out the non stinging US formula this year, but there's no way to know.
 

Lynda Lynda

Senior Member
Location
N/A
I heard that the new Humira is only available to pediatric patients in the USA right now ?

I received my 90 day supply of Humira pens yesterday. They are in my fridge right now. My Humira Nurse Ambassador will come to my apartment on Monday morning to familiarize me with the pens and I will do my first loading dose. I have watched a few videos on YouTube of people giving themselves their first loading dose at their homes or in a doctors office. And one person did the syringe injection in her stomach.
 

Lynda Lynda

Senior Member
Location
N/A
thike. You have learned so much in a short time ! I dont even know what a biome is.....yet. It sounds like your participation in the Crohn's Foundation has really helped you.
 
Yes, I learn from this forum, my support group, my GI docs, my nutritionist, the Internet and books.

The MicroBiome Solution by Robynne Churkam is where I learned about the Biome. There are 10 times as many cells in the biome in the large intestines than anywhere else in the body. Good bacteria and bad bacteria and yeast.

The doctor that leads my support group explained it's like a city. When the economy is good there are still criminals but they are kept in check by the good people. When the economy’s bad, criminals get out of control. Diet and antibiotics can cause a bad economy in the gut,

I take probiotics, Renew Life 50 Billion and Florastar. They both have gel coatings that insure they will make it through the hydrocloic acid in the stomach. Liquid and other probiotics not protected typically lose 80% of their biotics.

I was on many, many antibiotics growing up as a under developed child, due to being born 6 - 8 weeks premature with an unformed heart with a hole in the center. I grew out of all of that and was a healthy man until Crohn’s smacked me down. That may be why my biome needs the probiotics which cost a lot, but I save 50% through Amazon.
 
Joined this thread again on my 2nd go-around with Humira. Starting again on a higher dose (not sure what dose until it arrives) to try to heal fistulas. Also staying on Entyvio. Extremely thankful for excellent drug insurance today!

Trying the pre-filled syringes instead of the pens this time, especially if I am doing weekly or perhaps even two doses weekly.

Encouraged to hear that a non-burning formula is in the works. Though I won't hold my breath for getting it in Canada. Health Canada takes even longer than the FDA to approve things.
 

Lynda Lynda

Senior Member
Location
N/A
Joined this thread again on my 2nd go-around with Humira. Starting again on a higher dose (not sure what dose until it arrives) to try to heal fistulas. Also staying on Entyvio. Extremely thankful for excellent drug insurance today!

Trying the pre-filled syringes instead of the pens this time, especially if I am doing weekly or perhaps even two doses weekly.


Encouraged to hear that a non-burning formula is in the works. Though I won't hold my breath for getting it in Canada. Health Canada takes even longer than the FDA to approve things.
:welcome:

There are some members here from Canada. 🍁

Tell me how those syringes work for you. I just started the Humira pens. What gauge needle is it ? I am assuming its subcutaneous?

Take Care ❤
 
Did the 4 injections last night. Much much much better with the syringe. Will look for the gauge later but smaller than the pen. Mostly it is better because you can control the rate of the injection.
 
Lynda,
Here in the US, children are now getting the non stinging shots.

So hopefully, since It’s good enough fot kids, then adults should get it soon.


QUOTE=lgpcarter;1009446]Joined this thread again on my 2nd go-around with Humira. Starting again on a higher dose (not sure what dose until it arrives) to try to heal fistulas. Also staying on Entyvio. Extremely thankful for excellent drug insurance today!

Trying the pre-filled syringes instead of the pens this time, especially if I am doing weekly or perhaps even two doses weekly.

Encouraged to hear that a non-burning formula is in the works. Though I won't hold my breath for getting it in Canada. Health Canada takes even longer than the FDA to approve things.[/QUOTE]
 

Lynda Lynda

Senior Member
Location
N/A
I have to use the pens.
I qualified for financial assistance, they send me the pens.
So it is the pens for the next 90 days.
The pens aren't too bad.
After June 25th I only do one pen every two weeks.
Take Care.
 

Lynda Lynda

Senior Member
Location
N/A
Ok, is anyone taking Humira AND the 6mp pill together ? And what side effects have you experienced? Some of these threads are dead or have extremely low activity, so I am asking this question here. I did not want to start a new thread. Thanks.
 

emmaaaargh

Moderator
Staff member
I'm taking Humira and azathioprine (which is broken down in the body to 6mp). I was on azathioprine for 5 years before adding the Humira. They're often used together because the azathioprine can reduce the likelihood of developing antibodies to the Humira, keeping it working for longer.
 

Lynda Lynda

Senior Member
Location
N/A
I gave my injection on Monday in my abdomen. I use the Humira pens. It did not hurt very much at all. All my other injections really burned.
 
Hey Im Jessica. Recently healed from my latest surgery and trying to sneak back into remission! Just got back on 6mp and waiting in the approval from insurance to get back on humira(since my veins are no longer capable of taking the beating of regular infusions) Also desperately hoping I haven't developed antibodies since I wasn't on it for long before(fingers crossed).
 
Hey Im Jessica. Recently healed from my latest surgery and trying to sneak back into remission! Just got back on 6mp and waiting in the approval from insurance to get back on humira(since my veins are no longer capable of taking the beating of regular infusions) Also desperately hoping I haven't developed antibodies since I wasn't on it for long before(fingers crossed).
Hope it works out for you! Are they testing you for antibodies or just waiting to see if it works?
 
Still on Humira every other week. The whiskey and rum help with the pain of the injection...just sayin... and I’m still on pentasa. 2 once a day. Even though doc says 2 twice a day
 
The FDA finally approved the non-burning Humira for adults as well. I have been on it for the past month and find it so much easier to handle.
 
Hi, I'm new here and have been on Humira for about 4 months. I was doing great for the first couple months and then all of a sudden I was having a swelling reaction around my injection site. Recently I took it and the next the I was really nauseous, light headed/dizzy, and I couldn't go to the bathroom at all! I wanted to know if anyone else has experienced this? My doctor doesn't think it was an allergic reaction because my blood work, CT, and X-Ray came back normal but I'm concerned
 

my little penguin

Moderator
Staff member
Injection site reactions (swelling or hives ) where you inject is common woth biologics including humira
Ds would get welts larger than his hand while on humira
But he was NOT HAVING a systematic allergic reaction(anaphylaxis) just a minor local reaction - the two are not the same

Not having a bm for 24 hours after biologics is “normal “ for ds
He calls it the system reset
This has happened with many biologics for him
He is on #3 now Stelara
Anaphylaxis is a severe allergic reaction involving two or more systems
Symptoms of anaphylaxis usually involve more than one part of the body such as the skin, mouth, eyes, lungs, heart, gut, and brain. Some symptoms include:

Skin rashes and itching and hives
Swelling of the lips, tongue or throat
Shortness of breath, trouble breathing, wheezing (whistling sound during breathing)
Dizziness and/or fainting
Stomach pain, vomiting or diarrhea
Feeling like something awful is about to happen
Your child’s doctor will give you a complete list of symptoms.

From
https://www.kidswithfoodallergies.org/page/what-is-anaphylaxis.aspx

If you have anaphylaxis to anything food or med please call 9-1-1 /go the ER

Ds has had anaphylaxis to anakinra (hives/wheezing/nausea -all at once within minutes of injection) required epipen to stop the reaction as well as high dose steroids
 
Hi there. I am writing from Canada. I am not sure if this site is US or Canadian. Anyway. My wife has Crohn and she started a few months back Humira and it seems to work better than anything she tried before. (She does weekly injections)

The thing is, Humira is very, very, very expensive. While we are both employed, our workplaces have decent drug plans and we can afford this drug. Now, we are going to retire soon and, well, a month of Humira costs almost my entire monthly pension. Pretty much everything I saved while working would go to medication. I looked around for private or group med plans I can buy into; they all cap annual medication expenses to 4000-5000 - of course.) What to do? Is there a generic version?
 

my little penguin

Moderator
Staff member
No generic
But if you call my humira ambassadors for Canada
They can talk you through what discount cards are available
In the US with commercial insurance you can use the discount card and get a copay Of $5
But once you retire there are different plans
Also talk to the social worker at the ibd center
They know of other cards /plans specifically for Canada
Tagging tesscom
Pilgrim
 
Hi, I'm from Ontario and I know that Trillium Ontario will offer assistance for medication. I suggest looking into Trillium Ontario to see if you can qualify for assistance with Humira. My son is on Remicade and it is partially covered by my extended health insurance and the rest is covered by Jensen (Pharmaceutical company that makes it), however, I know that my plan will only cover while he is in school, so often wonder what will happen after that. I have been told that there are systems in place to help people get medication if they cannot afford it. Good luck and please keep us posted.
 
Many thanks for the replies.

Not sure who the little penguin's Humira ambassadors for Canada are. (Is the "little penguin" a spokesperson for the Humira manufacturers?)
 
Location
San Diego
Not sure who the little penguin's Humira ambassadors for Canada are. (Is the "little penguin" a spokesperson for the Humira manufacturers?)
I'm pretty sure My Little Penguin is not affiliated with Abbvie, the maker of Humira, or any other drug company. She is the mother of a child who has Crohn's. And I believe her child is currently on Stelara, which is not made by Abbvie.
 
I'm also in Ontario. Ask your wife's GI about any support available through AbbVie (the company that makes Humira - they will often help pay for it).

I second the suggestion to look into the Trillium Drug Program. https://www.ontario.ca/page/get-help-high-prescription-drug-costs

Once she turns 65, the government will cover it.

I know some workplaces will offer extended benefits to retirees until they reach 65. Maybe talk to HR at both of your workplaces?

We need a national pharmacare program!

Laura

Hi there. I am writing from Canada. I am not sure if this site is US or Canadian. Anyway. My wife has Crohn and she started a few months back Humira and it seems to work better than anything she tried before. (She does weekly injections)

The thing is, Humira is very, very, very expensive. While we are both employed, our workplaces have decent drug plans and we can afford this drug. Now, we are going to retire soon and, well, a month of Humira costs almost my entire monthly pension. Pretty much everything I saved while working would go to medication. I looked around for private or group med plans I can buy into; they all cap annual medication expenses to 4000-5000 - of course.) What to do? Is there a generic version?
 
My little penguin is my username
I am just a mom whose kiddo was dx with crohns at age 7
And he was on humira for over 5 years
Now he takes Stelara and has for the past two years

I do NOT work for any drug company

“My humira” is a program by AbbVie in the US

https://www.humira.com/humira-complete/cost-and-copay

Which helps people in the US afford humira
In Canada is it Abbvie Care that helps if people can't afford the medication. My understanding is that everyone on Humira gets assigned a case worker/nurse when they start the medication. https://abbviecare.ca/
 
Many many thanks for all people who replied. Very useful!
Many thanks to "my little penguin" who organized this group. I am sorry to hear about your little one. I hope soon doctors will find a cure for him so he can have a better life. (My wife was diagnosed at the age of 50, and it has been a blow; I imagine how terrible to be diagnosed at a very, very early age.)
 
hello everyone, I am a newbie to this forum...i hope it's ok to post.
I have been diagnosed with Crohn's Colitis since about 2012. No small bowel involvement...all in the colon. Flares on and off after 2012 but then a long stretch of about 2 yrs in remission. Last flare was Jan/Feb which was my most difficult and longest. previous to that was June last year. I've been on Lialda which I think has been good.

My GI has prescribed Humira and frankly I am in denial and afraid. I don't feel 'sick enough' at the moment to warrant this drug. I have read so much ( too much) online and it seems that most patients have tried a few options before Humira or have severe CD in the SB.

For me, when I am NOT flaring I feel ok and forget how sick i do get during a flare. I keep trying to remind myself that the goal is to prevent inflammation and to remember how ill i get during a flare.

So my question is, did anyone start Humira during a time of calmness/remission ?
Also is there anyone here with Crohn's Colitis ?

Thank you so much for any insight !
 

my little penguin

Moderator
Staff member
Rose09
Ds was on humira for over 5 years
The goal is stop inflammation cycle since that causes damage
Damage can’t be fixed
Your intestine is like a garden hose
Flexible
Inflammation causes scar tissue (think pvc pipe)
The scarring can also cause narrowing
So a normal hose can move freely
PVC is rigid and doesn’t move
This can cause obstructions /fistulas or perforation before and after the stricture

So while you may not feel sick enough outside
Inflammation that is allowed to continue inside can caused significant damage

Humira allowed my kiddos intestines to return to looking healthy on scopes
That is the goal
Healthy intestines
Regardless of outside symptoms

It’s hard when you feel well
 
my little penguin, thanks so much for your reply, you have managed to calm my nerves and help me think a little clearer. I have definitely been burying my head in the sand for a long time because I don't have strictures and have not had surgery so I felt 'ok' to keep on with Lialda. Now my GI doc is telling me that Lialda is not even on the recommended list of drug options.

I keep searching online for those who started Humira outside of a flare and I don't seem to find anything. It would help my anxiety...I am so worried about 'rocking the boat' so to speak...I have normal bm's right now since mid march, lol
but you are so right....healthy intestines is the goal.

I'm so glad your little one has had good scopes, that is truly the best thing I've heard today !
 

my little penguin

Moderator
Staff member
Ds wasn’t in a flare when he started humira
He was dx at age 7
Placed on remicade by age 8 - allergic reaction after a few infusions
So humira was it
He is now 15 so almost 8 years of biologics
Gets far less infections than my other kiddo who is non ibd

5-asa like liadia only treat the surface of the intestine like a dream
They work well in UC since that only affects the top layer
Crohns affects all layers
So inflammation is left to simmer below the surface

That’s why the Cochran reports do not recommend 5-asa for crohns
As mono-therapy
 
Lialda seemed to work fine for quite a while, I'm not sure why I was prescribed it for Crohn's in the beginning but it did seem to help.
 
Top