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Crohn's Disease Forum » Parents of Kids with IBD » Switching from Remicade to Humira


 
03-23-2013, 08:01 PM   #1
my little penguin
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Switching from Remicade to Humira

WHen you switched from Remicade to humira

Did you have to go through a mini flare again until the humira built up
if so how long until it built up?

Was it a smooth transition and you did notice the difference except maybe the method - shots versus infusion?

More questions later
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03-23-2013, 09:31 PM   #2
Dexky
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No switch for us MLP but good luck! When EJ came off 6mp to start Humira, it was declining bloods but no real outward symptoms. His bloods stabilized fairly quickly after the H but his have never been completely normal. We just get less red than the last time, and hopefully less again next time!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-23-2013, 10:14 PM   #3
Momto2girls
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Good luck! I hope the switch goes well and is the magic bullet!
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Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
03-23-2013, 10:16 PM   #4
kimmidwife
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I hope the switch goes well. Caitlyn switched from remicade to humira after her first try of remicade way back when she was first diagnosed but she only had two doses. She couldn't tolerate it and had a bad reaction to the shots. Good luck I hope it goes smoothly with no hitches.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-23-2013, 10:20 PM   #5
elainesmom
 
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what is LDN?
03-23-2013, 10:39 PM   #6
kimmidwife
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Low dose naltrexone. If you go to the front page to the treatment forums there is a lot of info on it. It has been the only thing that has worked for our daughter.
03-23-2013, 11:04 PM   #7
elainesmom
 
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thank you! so far, nothing we have tried has worked. waiting for tests to see if she developed antibodies to remicade. she was sick with fever and joint pain within 2 days of getting her 2nd infusion. she was better almost on the day she was due to have her 3rd infusion and had an allergic reaction to it. prednisone gave her the moon face and terrible acne rash which has scared her face, it did relieve her symptoms though. asicol and apriso, not sure what purpose they serve other than to cost me a ton of money each month. this is terrible to say but i am so desperate for her to get some relief that i have thought about having her try nicorett gum, i heard that helps. any thoughts?
03-23-2013, 11:08 PM   #8
kimmidwife
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I don't think I would try nicorrete gum that does not sound right. It contains nicotine which is not healthy. Look into LDN. Hopefully it will work for you guys as well as it has for us.
03-23-2013, 11:11 PM   #9
Switalski
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Just made the switch, and no problems. I developed an adverse reaction to Remicade over time, but absolutely zero negative effects from Humira. I am through the loading doses and on a reguklar two-week schedule. No flares while waiting for it to build up. You should do just fine.
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Right hemicolectomy April 4, 2012
Gall bladder removed February 16, 2015
Current meds: Humira
Adverse reaction to Remicade, but it worked
03-24-2013, 04:28 AM   #10
vtfamily
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Gus had a smooth transition from Remicade to Humira. Unfortunately, Humira didn't do the trick for him either.

We did Humira and methotrexate at the same time. The Humira pen is easy to use, but a little brutal on the kids. It shoots the needle out and you have to hold it there for a count of 15 to make sure all of the medicine goes into the skin. The medicine itself also burns/stings. So, make sure you ice the area well in advance and have plenty of TLC for after.

Good luck with it. I hope it is effective for you!!!
Cheryl
03-24-2013, 11:25 AM   #11
Tesscorm
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NO experience, just sending good luck there are no blips if you do have to make the switch!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-24-2013, 01:49 PM   #12
polly13
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Wishing you the best with the switch
03-24-2013, 01:58 PM   #13
my little penguin
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Still waiting for the official word as to what the plan will be from the GI.
I know he was waiting to speak to one more of DS's specialists first before deciding .
Just trying to prepare - in case.
I do better if I research first before I have to decide.
03-24-2013, 02:11 PM   #14
Tesscorm
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I know you've seen the thread below (and I may even have recently linked it for you??? Brain can get a bit mushy at times ). But, just in case you'd forgotten about it...

http://www.crohnsforum.com/showthread.php?t=42119

03-24-2013, 04:45 PM   #15
jmckinley
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No experience here, just wishing you luck with the switch. When our GI talked about that switch last year, he acted like it should be a very smooth switch.
03-24-2013, 10:23 PM   #16
vtfamily
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At least the "warnings" for Humira are "better" than Remicade. With Remicade, there is the concern over lymphomas. With Humira, it's "only" TB.

I don't know about you, but the potential risks of the medications are the most difficult part to absorb as parents.

Best of luck to you two.
03-24-2013, 10:31 PM   #17
Clash
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Humira and Remicade have the same concerns over lymphomas, all TNF blockers used for CD so far carry these risks.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-24-2013, 11:06 PM   #18
vtfamily
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Humira and Remicade have the same concerns over lymphomas, all TNF blockers used for CD so far carry these risks.
Thanks Clash,

It was quite some time ago when we were first looking at Humira for our son. He did use Humira for a short time, but it didn't work for him.

After looking it up again, I'm a little surprised at the warning updates. Then again, the longer drugs are in use, the more we learn about them. Still, nothing drained all of the blood from my face faster than the warnings for Tysabri...Yikes!

Cheryl
03-24-2013, 11:14 PM   #19
Clash
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I was the same about all of them. I had seen the commercials and my Mom has taken Remicade and MTX for a few years for RA. So when C was dx'ed and px'ed the Remicade, I read the pamphlet and called my Mom and freaked out. She was so funny and sweet...she said well my other option as well as C's is to live in pain and fear of pain and not be able to be our happy selves and enjoy life. I chose enjoy life. It made it a little bit better but not much!
03-24-2013, 11:28 PM   #20
vtfamily
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I was the same about all of them. I had seen the commercials and my Mom has taken Remicade and MTX for a few years for RA. So when C was dx'ed and px'ed the Remicade, I read the pamphlet and called my Mom and freaked out. She was so funny and sweet...she said well my other option as well as C's is to live in pain and fear of pain and not be able to be our happy selves and enjoy life. I chose enjoy life. It made it a little bit better but not much!
Here! Here! I totally agree. I'm grateful to an industry that keeps plugging away at finding a good solution that works for all who suffer with Crohn's!

Tysabri wasn't an option for my son. He's had his 2nd dose of Stelara already. If that doesn't do the trick...perhaps the next one (Vedolizmab) will.

Our ultimatel goal is for a full and happy life for our children!
Cheryl
03-24-2013, 11:33 PM   #21
Clash
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I think it is when the med(whichever one it turns out to be) starts to work for your child and all of the sudden, they are full of life, outta bed, not curled in pain or sleeping hour upon hour and at that moment...you say a prayer that this drug will work forever and that your child will be able to go back to childhood and enjoy!!

I really hope the stelara works for your son. I think I read on one of the treads here that a sister drug for Tysabri drug was coming out that didn't carry the risk of PML, it scares me too. But then my teenage son is on Remicade and MTX, so I guess the fear isn't completely rational!
03-24-2013, 11:51 PM   #22
vtfamily
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Correct, "Vido" (Vedoilzmab) is expected to complete trials in 2014 or 2015 and DOES NOT carry the PML risk. Hallelujah! It helps me to push forward to learn about the next generation...before we arrive at it's doorstop!

Your fear, the fear we all have...really the weight of having to make these decisions on behalf of our children...it absolutely rational! I'm glad we all have each other!

Sorry MLP..we kind of hop-skipped past your Humira question.
03-25-2013, 04:20 AM   #23
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-25-2013, 09:54 AM   #24
Brian'sMom
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No problems with switch for us. Smooth transition. Just different in method. Shots took some getting used to. We went thru an anxiety stage...but its been nice doing them at home and on our schedule. Brian is now fine with injection. Of course he'd rather not do it...but he handles it just fine now. Good luck with your transition. Why are you changing?
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-25-2013, 11:21 AM   #25
my little penguin
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Did you add the humira to lidocaine to reduce the injection pain / burn?
03-25-2013, 01:03 PM   #26
Jenn
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Alex was building antibodies to Remicade, which is why we made the transition to Humira and he was already flaring. The loading doses calmed it right back down again.

The first loading doses were a shock to him and horrible. The nurses at the GI office did it, one epipen in each leg at the same time, he SCREAMED. Icing for 10-20 minutes beforehand helps, the numbing cream didn't help at all. Buzzy might, I tried something similar but it seemed like it just vibrated the liquid out. The med burns as it goes in. We had to go to the syringe vs epipen because epipen is not available for the pediatric dose. I control the injection speed and going a little slower with the syringe is much less painful for him. Also let the syringe warm up while he's icing helps. Humira provides a free home nurse to help you administer the first dose (minimal training), also a nurse on-call line. They also have a discount plan for everyone $5 copay. Have had some ups and downs, we are all a little needle phobic and he has randomly bruised, bled, welted, or rashed, but most times are fine. Hard to get a 45 deg angle all the time, sometimes I'm too steep, others too shallow. sigh. Pretty routine a year later for us now though. Much quicker and easier than the remicade 3-hour tour.... Good luck!

ps. I hate hate hate hearing the Humira commecials, I cringe every freaking time. :/
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
03-25-2013, 07:08 PM   #27
Brian'sMom
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We use lidocaine to numb the skin. But the thing that makes it not hurt or burn for him the best is to ice the leg until the skin is pink all around the spot we're going to inject. We use one of the freezer packs that comes in the styrofoam cooler with the Humira.
03-25-2013, 07:51 PM   #28
my little penguin
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I was told you could mix the lidocaine and humira in one syringe and inject at basically once- eliminating the sting/burn.....
anyone try this???
not that we have a plan yet....
but if that is what they decide I want to be prepared
03-25-2013, 07:56 PM   #29
Marni's mom
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When Marni switched from Remicade to Humira the Remicade hadn't helped, so the symptoms were all still present. So, it's hard to say if she went through a mini flare at the transition. And still after about four months of Humira, we're not seeing an improvement...and I was just asking today when the docs came in how much longer we wait to see if the Humira is going to work. No real answers.

On another note...I was about to start a new thread to ask....do any of you or your kids have "trigger smells" that trigger pain when present? We experience this when we go into certain stores. I get it too. It's the kind of thing where we just know when we walk in that a trip to the bathroom will be necessary because the scent in the store triggers cramping and abdominal pains. Does this happen to anyone else, or are we just mutants from another planet?
03-25-2013, 08:42 PM   #30
Brian'sMom
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I was told you could mix the lidocaine and humira in one syringe and inject at basically once- eliminating the sting/burn.....
anyone try this???
not that we have a plan yet....
but if that is what they decide I want to be prepared
I haven't heard of this. We use the pre loaded pens so it wouldn't be possible for us anyways
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