Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira Club Support Group


 
06-22-2018, 02:11 AM   #3331
Lynda Lynda
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Location: Arizona
Thanks !
06-22-2018, 04:03 AM   #3332
thike1966
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Location: CENTENNIAL, Colorado

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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]
06-22-2018, 07:27 PM   #3333
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
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.
07-09-2018, 12:26 AM   #3334
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
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.
07-09-2018, 03:34 AM   #3335
emmaaaargh
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Location: Brighton, United Kingdom

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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.
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Hi, I'm Emma!
20 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Inflectra 5 mg/kg, azathioprine 37.5mg
07-11-2018, 11:49 PM   #3336
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
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.
08-09-2018, 08:46 PM   #3337
jacinthebox
 
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Location: grand rapids, Michigan

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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).
08-22-2018, 06:01 PM   #3338
lgpcarter
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Join Date: Jun 2013
Location: Canada

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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?
__________________
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Stelara every 8 weeks, B12 every 2 months, Vitamin D 2000 IU

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Methotrexate, Prednisone, Imuran, Humira, Cipro and Flagyl.
02-19-2019, 09:56 PM   #3339
LCATC945
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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


02-21-2019, 08:32 PM   #3340
aweitzm1
 
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Location: New York, New York

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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.
__________________
Dx 7/2017
Humira 8/2017
Effexor 4/2017
Ambilify 6/2017
Klonopin 2 mg as needed 2/2015
Liquid Tumeric
Calcium 7/2017
B12 7/2017
03-23-2019, 07:38 PM   #3341
amax12
 
Join Date: Mar 2019

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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
03-31-2019, 06:37 AM   #3342
my little penguin
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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.or...aphylaxis.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
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DS - -Crohn's -Stelara -mtx
04-02-2019, 07:52 PM   #3343
galen
 
Join Date: Jul 2018
Location: Ontario

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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?
04-03-2019, 02:01 PM   #3344
my little penguin
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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
04-03-2019, 04:56 PM   #3345
Jo-mom
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Location: Toronto, Ontario

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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.
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Mom of L (20)

Diagnosed at 19 with moderate to severe crohn's (July 2018) - likely had it since early teens asympomatically -

Enteropathic arthritis - diagnosed June 2018 - showed symptoms mid teens.

Entocort August 2018 to January 2018
Remicade - Sept 2018 to May 2019 -5 mg/kg every 4 weeks

May 2019 to present 10 mg/kg every 4 weeks
04-03-2019, 05:48 PM   #3346
galen
 
Join Date: Jul 2018
Location: Ontario

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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?)
04-03-2019, 06:16 PM   #3347
Scipio
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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.
04-03-2019, 08:04 PM   #3348
my little penguin
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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
04-03-2019, 08:26 PM   #3349
lgpcarter
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Join Date: Jun 2013
Location: Canada

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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...ion-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?
04-03-2019, 08:29 PM   #3350
lgpcarter
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Join Date: Jun 2013
Location: Canada

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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/
04-04-2019, 08:22 PM   #3351
galen
 
Join Date: Jul 2018
Location: Ontario

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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.)
04-14-2019, 11:29 PM   #3352
Rose09
 
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Location: Maryland

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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 !
04-15-2019, 09:06 AM   #3353
my little penguin
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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
04-15-2019, 11:57 AM   #3354
Rose09
 
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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 !
04-15-2019, 03:09 PM   #3355
my little penguin
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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
04-16-2019, 06:26 PM   #3356
Rose09
 
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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.
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