Remicade infusion confused

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my little penguin

my little penguin

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Ds had another infusion
This time with steroids, Benadryl and Tylenol
No problem during infusion
Afterwards we go to leave
Tongue tingling :ybatty:
So back in we go plus throat burning:eek2:
Monitored vitals
Released after three hours:yrolleyes:
His tongue is still tingling now 9 hours after he finished his infusion :ymad:

Will talk to his allergist soon
 
Hmmmmmmmmm I hate the question marks Im certain that is creating for you.......
 
Doesn't help that he has a croupy thing going on as well right now ....
So the evening cough has us scratch our heads even further .

I really need the manual about now .
 
If he is having this type of reaction they may try giving him more benadryl first. I would also suggest rethinking the steriod issue. He is so young to be on such high powered drugs. My best to you and your family. If he continues on this route they may have to switch his meds.
 
MLP, could the tingly tongue be a side effect of the steroid and/or benedryl instead of remicade? Has he had this combination pre remicade before?

Hugs... it would be so nice to have 'smooth sailing' sometimes! :ghug: Hope all clears by morning and the allergist can shed some light on it! :ghug;
 
HE had tongue tingling Tess - last time with Remicade as well- no steroids that time
He has had Benadryl numerous times before with remicade and for various other reasons.

So far the only two times he has complained of his tongue was last infusion and this infusion.
His tongue was also burning and causing him pain by time I put him to bed - in addition to tingling.

He has alot of other medical "stuff" including severe allergies and asthma so that complicates the otherwise muddy waters a bit.
Hence the decision by the GI to pull in the allergist on this one.
 
I hope he sleeps well tonight and the tingling/burning is gone by tmrw! And hope you're able to get a quick answer from his allergist. :hug:
 
Wierd! Tingling and burning make me think of a neuropathy. I hope it goes away before morning. Does drinking water help?
 
Gi didn't want Benadryl unless it got worse
If we had to give it then we were to take him to the hospital .
He added tongue pain "like a headache ", still burning
And slight tingling this morning
Plus pain inside one check of his mouth
He did get Zyrtec and albuterol last night and this morning
Going to up date Gi in a bit
Thankfully he sees Neuro next week so I can get there buy in as well
Thinking less allergy at this point
And more ... I have no clue
 
Spoke with GI-
We gave benadryl this afternoon per his instructions since DS is still having tongue issues.
hopefully the benadryl will do its thing-
If it continues , gets worse or comes back 48 hours after the infusion ( wed noon) the GI wants to know. Not sure what happens then.........:yfaint:
 
Sorry nothing to add as I've no experience with remicade or allergies but just wanted to say we thinking of you guys and hope it all gets worked out favorably soon.
 
Benadryl did not work so far and its been an hour-typically only takes 20 minutes to work.:ymad:
- still tingly and burning on and off- not any worse but not any better.:ybatty:
 
Any evidence of a rash in or out of the mouth? Sometimes tingling precedes or occurs with oral inflammation or infection. I really hope the tingling goes away soon!
 
I also had tingling and mouth pain before I started remicade. It was due to my crohns. Doc thought I had an allergy but I was having inflammation in my esophagus, tongue and cheeks. I hope he feels better soon.
 
Ugh MLP, so sorry about the symptoms! I don't know if it's a reaction to the remicade or not. Ryan had a reaction on his 7th and 8th infusion. All was smooth sailing before that. On the first, he just had benadryl and tylenol. The next time they added the medrol (steroid) to try to stop it. His started with tongue tingling and throat pain, but quickly progressed to breathing problems, like minutes. Another thing though, it went away quickly after they stopped the remicade. Your son's hasn't gone away, so maybe not a remicade reaction. Ryan has asthma also.

I hope your "team" gets it figured out soon! Hugs!
 
:( sorry that the tingling hasn't gotten better. Wish I had some advice for you! :ghug:
 
Sorry it has not improved with Benadryl although that may be a good thing because maybe it shows that it is not part of an allergic reaction and is something else going on. You may want to call the remicade company tomorrow and speak with the nurses. They were wonderful when caitlyn had her reaction.
 
Still same
Derm found a broken lesion on the end of his tongue which was still red.

Big consult among his specialists soon
Gi may stop remi
Or space out to 8 weeks At lower dose.

Off to cry :(
 
I'm confused...isn't it likely that the tingling tongue is related to the lesion on the tongue?
If this is the case, then it makes other causes (allergy, neuropathy) much less likely, which is good! Am I missing something?

It's definitely awful waiting and not knowing and worrying. Hoping it will turn out to be something very minor.
 
If he only had a lesion
But he had throat burning
As well after the infusion
Derm thought the lesion was allergic in nature combine with the tingling and pain.
I don't know
At least three of his specialist maybe four are going to discuss
A plan forward.
 
So sorry he's having this complication! :ymad: I hope you're going to hear from his specialists soon.

I hope the tingling (and burning?) is lessening a bit???

:ghug:
 
MLP - I wish I had something helpful to add......

Instead Im sending hugs!!!

J.
 
So sorry to hear that things haven't improved. Sending Hugs your way. I hope it improves soon!
 
MLP
Sorry he has not improved. Sending hugs. hopefully all the specialists meeting together will figure something out.
 
At least two specialists are now recommending humira
They are going to forward their comments to Gi
Trying to come to grips with the whole thing.
His one doc was so nice about it and explained the reasoning behind the switch
At this point
Stating
Sensitivity reactions tend to build and are not dose dependent.
So going out 8 weeks would not decrease this risk.
He also stated increasing the steriods iv
And taking oral steriods days prior might work but really not a good long term plan
Since we are trying to avoid long term steriods
He thinks DS is a good candidate
For humira since he did so well on remicade
Still have to wait for the rest of the group
To weigh in and see what the plan becomes
Just trying to find a bit of peace with whatever the plan is
 
So sorry to hear about this complication. Wish I had some fabulous advice that would make it all better. Sending you lots of positive energy and hugs.

:ghug:
 
Any swelling of the tongue or just tingling???

Is there a way to do the equivalent of a skin test to check for allergies before they stop the remicade?

((((Hugs)))))) MLP. We all know the rules can change at anytime but man it sure does take your breath away when they do. I am sure you will figure this out.:heart:
 
Hope the itching/burning has settled down now. Good luck with the Humira if/when you have to start that. At least if you change then you won't have the worry about the reaction to the Remicade again.
 
I'm so sorry MLP that his treatment may have to change! Johnny's mom is right in that any change takes your breath away! :ymad:

He's done so well with remicade, I'm sure he'll respond to humira if the change is necessary.


You may have seen this but here's a link to a thread that discusses switching biologics
http://www.crohnsforum.com/showthread.php?t=42119

:ghug: :ghug:
 
MLP, if and when the change is made I hope DS responds really well. We haven't been faced with this but my friends nephew has. He had great response to Remicade but if he was feeling well he would miss his infusions:eek2: so the GI switched him to Humira.

His cousin has tried all the biologics to no avail, crazy how differing and insidious this disease can be.

:ghug:
 
Last edited:
Johnny'smom

You could in theory do a skin prick test - we asked prior to starting remicade.
However insurance will not cover it and you would have to buy at least one vial to do it
I think it was $1000 or more.

The HACA test checks for anitbodies which can determine if the drug is still effective but doesn't really help figure out who will or will not have a reaction to the drug.

His first rxn was 6 weeks ago -
while on Benadryl and Zrytec he had trouble breathing, itchy throat and tongue tingling.
Vitals were good so we decided to try again.

This time he had 4 mg of IV steroids , Benadryl, and zrytec.

His rxn consisted of a burning throat, tingling tongue ( with a broken hive dermatologist assumes) -redness of the tongue.

Dermatologist - saw the broken lesion on WEdnesday morning and said it was still red at that point-I did not see it on Monday - but I didn't look that close. - He was dx with drug eruption ( reaction) - on wed by dermatologist

He tongue may have been swollen on Tuesday evening- he stated it felt like someone was pulling on it. WE ended up at the ER a few hours afterwards but he was fine by that time- so all is well.

Still waiting on final decision-- but trying to prepare
 
So sorry that all of this is continuing. It's so frustrating when a medicine helps but is causing complications! I hope the team gets a new plan in place soon and gets him feeling better!

HUGS!!
 
I can't believe how much these tests cost!! We got a bill for $2200 for Johnny's blood tests from last month:yfaint:

Hope they figure this out soon and you get some answers. ((((Hugs)))))
 
Oh mlp. :(:(:( This is so heartbreaking to read so what must you be feeling...:ghug:

You are both in my thoughts and prayers, :heart:

Dusty. xxx
 
I'm sorry the Remicade didn't go over well this time. I hope the next thing will be the perfect solution.
 

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