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


 
03-25-2013, 09:06 PM   #31
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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.
__________________
DS - -Crohn's -Stelara
03-26-2013, 05:00 AM   #32
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
I thought you meant a lidocaine surface treatment! Yeah, I don't think I'd want to mess around with that^^!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-26-2013, 05:37 PM   #33
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
neuro ordered brain MRI prior to next remicade
still waiting on GI
03-26-2013, 06:34 PM   #34
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

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

But why the brain MRI?
__________________
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
03-26-2013, 06:44 PM   #35
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
just have to wait for the MRI
03-26-2013, 06:51 PM   #36
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
03-26-2013, 06:52 PM   #37
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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.
Remicade should not be used by congestive heart failure patients.
Remicade can cause an infusion reaction in some patients (itching, chills, flushing, low blood pressure etc.)
from:
http://arthritis.about.com/od/remica...icadefacts.htm
03-26-2013, 06:58 PM   #38
my little penguin
Forum Monitor
 
Join Date: Apr 2012

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

more
03-26-2013, 09:43 PM   #39
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
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!!
__________________
Clash
Mom to
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
03-26-2013, 11:39 PM   #40
vtfamily
Senior Member
 
vtfamily's Avatar
 
Join Date: Mar 2013
Location: Palmdale, California

My Support Groups:
neuro ordered brain MRI prior to next remicade
still waiting on GI
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

Last edited by vtfamily; 03-26-2013 at 11:54 PM.
03-27-2013, 07:29 PM   #41
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
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!
03-27-2013, 07:51 PM   #42
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Still,,,,,,,,, waiting on call from GI

:v oodoo:

maybe Thursday ( not holding my breath.)
03-27-2013, 07:54 PM   #43
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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. [email protected]


from:
http://www.ncbi.nlm.nih.gov/pubmed/21816758
03-27-2013, 07:56 PM   #44
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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. [email protected]


from:
http://www.ncbi.nlm.nih.gov/pubmed/22098827
03-27-2013, 07:59 PM   #45
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
03-27-2013, 08:32 PM   #46
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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 .
03-28-2013, 12:36 AM   #47
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
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.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-28-2013, 03:46 AM   #48
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Sorry to hear it's still ongoing! Glad they are keeping an eye on things though. Hope the GI calls!!!
03-28-2013, 05:26 AM   #49
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
__________________
Supermom to 2 girls: Little Girl (4) & Big Girl (7)

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
03-28-2013, 05:45 AM   #50
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
..
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



03-28-2013, 05:52 AM   #51
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
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??
03-28-2013, 11:06 AM   #52
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
03-28-2013, 07:27 PM   #53
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
How scary. I'm glad they are moving away from Remicade, but I hope they can find something effective that is safer!
03-28-2013, 07:34 PM   #54
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
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!!
03-28-2013, 08:06 PM   #55
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Will probably have to wait until Tuesday at this point........

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

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

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

not typical post remicade meds..
usually he waits until a few days before his next infusion to need those.
03-28-2013, 08:10 PM   #56
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
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)
03-28-2013, 08:13 PM   #57
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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.
03-28-2013, 08:15 PM   #58
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
So sorry that you have so many worries right now... wish I could do more than just give a virtual hug!
03-28-2013, 10:53 PM   #59
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Thinking of you and your little penguin and sending loads of love and well wishes across the pond...

Dusty. xxx
Reply

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


All times are GMT -5. The time now is 02:40 PM.
Copyright 2006-2017 Crohnsforum.com