# Switching from Remicade to Humira



## my little penguin (Mar 23, 2013)

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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## Dexky (Mar 23, 2013)

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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## Momto2girls (Mar 23, 2013)

Good luck! I hope the switch goes well and is the magic bullet!


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## kimmidwife (Mar 23, 2013)

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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## elainesmom (Mar 23, 2013)

what is LDN?


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## kimmidwife (Mar 23, 2013)

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.


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## elainesmom (Mar 24, 2013)

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?


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## kimmidwife (Mar 24, 2013)

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.


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## Switalski (Mar 24, 2013)

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. :ysmile:


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## vtfamily (Mar 24, 2013)

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


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## Tesscorm (Mar 24, 2013)

NO experience, just sending good luck there are no blips if you do have to make the switch! :ghug:


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## polly13 (Mar 24, 2013)

Wishing you the best with the switch


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## my little penguin (Mar 24, 2013)

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.


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## Tesscorm (Mar 24, 2013)

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 :ywow.  But, just in case you'd forgotten about it...

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

:ghug:


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## jmckinley (Mar 24, 2013)

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.


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## vtfamily (Mar 24, 2013)

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.


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## Clash (Mar 24, 2013)

Humira and Remicade have the same concerns over lymphomas, all TNF blockers used for CD so far carry these risks.


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## vtfamily (Mar 25, 2013)

Clash said:


> 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


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## Clash (Mar 25, 2013)

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!


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## vtfamily (Mar 25, 2013)

Clash said:


> 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


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## Clash (Mar 25, 2013)

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!


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## vtfamily (Mar 25, 2013)

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.


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## Farmwife (Mar 25, 2013)

:ghug:


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## Brian'sMom (Mar 25, 2013)

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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## my little penguin (Mar 25, 2013)

Did you add the humira to lidocaine to reduce the injection pain / burn?


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## Jenn (Mar 25, 2013)

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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## Brian'sMom (Mar 25, 2013)

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.


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## my little penguin (Mar 25, 2013)

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


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## Marni's mom (Mar 25, 2013)

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?


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## Brian'sMom (Mar 25, 2013)

my little penguin said:


> 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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## my little penguin (Mar 25, 2013)

THey give you a vial of lidocaine- where you draw up X amount and then dispense the humira auto injector into the same syringe - I think???
-I haven't asked the specifics since 
1.) he is still on remicade 
2.) not a doc so I would have to ask our doc if this is even possible.


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## Dexky (Mar 26, 2013)

I thought you meant a lidocaine surface treatment!  Yeah, I don't think I'd want to mess around with that^^!


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## my little penguin (Mar 26, 2013)

neuro ordered brain MRI prior to next remicade:yfaint:
still waiting on GI:ybatty:


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## Tesscorm (Mar 26, 2013)

Sorry there are suddenly so many questions surrounding his treatment! :ghug:  its so tough when you're in limbo and just waiting....

But why the brain MRI?


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## my little penguin (Mar 26, 2013)

remicade and tNF blockers can cause demylination and lesions (MS  or MS like)
SO....
since he still has tongue tingling over a week later that is moving from spot to spot 
Neuro wants to make sure it is just a minor side effect of remicade.

DH took DS to the neuro so ...no questions:yrolleyes:
just have to wait for the MRI


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## my little penguin (Mar 26, 2013)

> Neuropathy developed early (8 months) after treatment introduction. Various clinical patterns were encountered, including pure sensory neuropathy. Immunomodulating treatments were always required for neuropathy control. Chronic demyelinating neuropathy developed either after change of anti-TNF-alpha drug or spontaneously after treatment discontinuation without any drug reintroduction.
> CONCLUSION:
> Influence of anti-TNF-alpha treatment continuation on the long-term course of neuropathy is variable, suggesting that anti-TNF-alpha treatment withdrawal is not always necessary for neuropathy control.


from;
http://www.ncbi.nlm.nih.gov/pubmed/19364934


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## my little penguin (Mar 26, 2013)

> Can Serious Adverse Reactions Occur With Remicade?:
> 
> Patients on Remicade may have a higher risk of developing cancer or lymphoma. People with rheumatoid arthritis have a higher risk of lymphoma, making it hard to determine which is directly responsible.
> *People on Remicade may develop a demyelinating disorder (multiple sclerosis), but this is rare.*
> ...


from:
http://arthritis.about.com/od/remicade/p/remicadefacts.htm


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## my little penguin (Mar 26, 2013)

http://www.crohnsforum.com/showthread.php?t=37722

more


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## Clash (Mar 26, 2013)

:ghug: I remember also reading a few more studies after posting in that thread from 2012, I don't think I saved them but I will see if I can find them again. So sorry you are in limbo right now, sending hugs your way!!:ghug:


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## vtfamily (Mar 27, 2013)

my little penguin said:


> neuro ordered brain MRI prior to next remicade:yfaint:
> still waiting on GI:ybatty:


Sorry you're having to weigh through another set of tests and questions.

If it looks like MS is a possibility, will you be looking at Tysabri?

Cheryl


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## Clash (Mar 27, 2013)

Hmmm... I am apparently not entering the key words I did back then because I have yet to come across it. If I happened upon it though I will post it!


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## my little penguin (Mar 27, 2013)

Still,,,,,,,,, waiting on call from GI:hallo3:

:voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo:

maybe Thursday ( not holding my breath.:lol2


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## my little penguin (Mar 27, 2013)

> We describe eight demyelinating central nervous system syndromes and two peripheral nervous system syndromes associated with TNFAI therapy. Characteristics from these cases are analyzed with data from 141 additional cases from the literature. Onset was between the ages of 36 and 65 years in 84% of CNS cases, distinguishing TNFAI-associated disease from sporadic multiple sclerosis. Symptoms occurred within one year of TNFAI therapy in 71%. Etanercept therapy was reported in the majority of cases of CNS syndromes and infliximab therapy in the majority of neuromuscular syndromes. Significant disability remained in 67% of cases although 82% had been followed for less than one year.


*Mult Scler. 2011 Dec;17(12):1472-87. doi: 10.1177/1352458511412996. Epub 2011 Aug 3.
Inflammatory neurological disease in patients treated with tumor necrosis factor alpha inhibitors.
Solomon AJ, Spain RI, Kruer MC, Bourdette D.
Source
Department of Neurology, University of Vermont College of Medicine, Fletcher Allen Health Care, University Health Center, Vermont 05401, USA. andrew.solomon@vtmednet.org*

from:
http://www.ncbi.nlm.nih.gov/pubmed/21816758


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## my little penguin (Mar 27, 2013)

> Nine patients were included in this study. Sex ratio was eight and mean age was 49±9 years. One patient had previous history of subarachnoïdian hemorrage. All the patients previously received immunosuppressive drugs, including methotrexate (nine) and leflunomide (four). Three patients had a brain MRI before initiation of anti-TNF treatment, which was normal. Clinical episode was stroke-like in three cases, clinically isolated syndrome (CIS) in five cases, and peripheral neuropathy in one case. MRI showed lesions suggestive of demyelinating T2 hyperintensities in four cases, vascular infarcts in two cases, and non-specific T2 hyperintensities in three cases. Barkhof and Tintore criteria were fulfilled in one of the four CIS cases. CSF study was available for six patients. It was normal (four cases), showed oligoclonal bands (one case) and lymphocytic meningitis (one case). Anti-TNF alpha discontinuation was decided in five cases. Outcome was favorable for eight patients. One patient, whom MRI fulfilled Barkhof and Tintore criteria, and CSF showed oligoclonal bands, further developed relapsing remitting multiple sclerosis.



*Rev Neurol (Paris). 2012 Jan;168(1):33-9. doi: 10.1016/j.neurol.2011.06.005. Epub 2011 Nov 17.
[Neurological adverse events under anti-TNF alpha therapy].
[Article in French]
Cohen M, Baldin B, Thomas P, Lebrun C.
Source
Service de neurologie, hôpital Pasteur, CHU de Nice, 30 voie Romaine, BP 69, Nice cedex, France. cohen.m@chu-nice.fr*

from:
http://www.ncbi.nlm.nih.gov/pubmed/22098827


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## my little penguin (Mar 27, 2013)

> The neurological symptoms appeared on average 5 months after initiation of the treatment. For all patients, the inflammatory process was confirmed by brain magnetic resonance imaging. The symptoms totally or partially regressed as soon as anti-TNF-alpha treatment was stopped except for one patient who developed clinically defined MS.


*Cytokine. 2009 Feb;45(2):55-7. doi: 10.1016/j.cyto.2008.11.002. Epub 2008 Dec 23.
Inflammatory demyelinating events following treatment with anti-tumor necrosis factor.
Fromont A, De Seze J, Fleury MC, Maillefert JF, Moreau T.
Source
Department of Neurology, University Hospital of Dijon, 21000 Dijon, France.*

from:
http://www.ncbi.nlm.nih.gov/pubmed/19109035


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## my little penguin (Mar 27, 2013)

forgot to mention - history of abnormal EEGs so we are also trying to figure out if the tongue tingling ( involving half the tongue at this point ) are simple seizures .


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## CarolinAlaska (Mar 28, 2013)

MLP, I'm so sorry!  I am glad they are checking and not blowing off his symptoms.  I hope it doesn't cause any long-term damage.


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## Sascot (Mar 28, 2013)

Sorry to hear it's still ongoing!  Glad they are keeping an eye on things though.  Hope the GI calls!!!


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## Momto2girls (Mar 28, 2013)

I'm so sorry! This sounds scary. I sure hope they get it all sorted out. My older daughter had reflex anoxic seizures. I know when she had her tonsils out they had to take special precautions -- maybe it is the same type of thing with Remicadee type infusions? I don't really have any idea. Hers was a vagal response and I think this must be different. Hugs...hang in there.


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## upsetmom (Mar 28, 2013)

:ghug:.:ghug:.:ghug:


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## Dexky (Mar 28, 2013)

my little penguin said:


> forgot to mention - history of abnormal EEGs so we are also trying to figure out if the tongue tingling ( involving half the tongue at this point ) are simple seizures .


This history started before Remi??


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## my little penguin (Mar 28, 2013)

A couple of years ago he had EEG s ran as part of a basic work up for other stuff
One was abnormal so they ran a longer one still abnormal .
No signs of seizures - just a certain percent of the population will have abnormal EEG s 
Especially with Other stuff and migraines ( from Ibd)
He later had two normal EEG s
But tongue tingling in spurts like he is having ( last 5 seconds or sometimes 5 minutes)
can be from
Remicade  Neuro or allergic
Ms 
Or 
Simple seizures
Or something else ....

So long story .. Kiddo is very complicated 
Which is why he has a few different specialists
Which all seem to agree no more remicade
But haven't heard from the Gi what they want to do


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## CarolinAlaska (Mar 28, 2013)

How scary.  I'm glad they are moving away from Remicade, but I hope they can find something effective that is safer!


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## Clash (Mar 28, 2013)

Have you heard anything yet, MLP? I've been thinking about you and DS, I hope they can find the cause and a med that he can switch to!!


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## my little penguin (Mar 28, 2013)

Will probably have to wait until Tuesday at this point........:ymad:

Holiday weekend = :ybatty:  at the GI office on Monday so....

Tongue still tingly and moving from the same side to the tip

otherwise he is "fine" :confused2: NOT-- gave miralax yesterday and today
Zofran Tuesday, levsin on Sat/Sun Monday

not typical post remicade meds..oo:
usually he waits until a few days before his next infusion to need those.


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## Clash (Mar 28, 2013)

So sorry you have to wait even longer due to holiday and there are symptoms showing up. I hope this gets resolved soon!

What does he take the levsin for? I'm just asking because when C was first dx actually the day of the first colonscopy the diagnosing GI(not C's GI now) px'ed C levsin for pain, the levsin is the kind that melts under your tongue. Now when he cramps he wants to take it but I wasn't sure(we have a standing refill)


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## my little penguin (Mar 28, 2013)

Levsin- stops the stomach from spasming and/or cramping can be used in IBD/IBS patients.
since he tends to cascade once things go down hill-GI tries to slow things down a bit.
it didn't work at all before remicade but now if he has bad cramping the stomach pain drops quickly.
only problem it can cause constipation- which is his issue.
Lots of issues right now so not sure which end is up at the moment.


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## Tesscorm (Mar 28, 2013)

So sorry that you have so many worries right now...  wish I could do more than just give a virtual hug! :ghug: :ghug:


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## DustyKat (Mar 28, 2013)

Thinking of you and your little penguin and sending loads of love and well wishes across the pond...:ghug: 

Dusty. xxx


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