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Allergic Reaction to Remicade

:voodoo::voodoo::voodoo:

We went for a remicade infusion today and Ryan had an allergic reaction. He turned blood red, his chest tightened, he had trouble breathing, head hurt, and nausea! Poo!

The nurses stopped the infusion and called the GI. He came and checked Ryan out. The symptoms subsided after about an hour, but this may put us out the door on remicade :ymad:. Our last hope is that we will go back next week and take IV solu medrol and then the remicade and see if the reaction happens again...Oh Joy! :angry-banghead::angry-banghead: Anybody else done this combination?

Seriously, I can't believe I am upset about possibly leaving something I hated to start in the first place, but Ryan has been doing so well! Funny, my first reaction after the incident was that I couldn't wait to get to talk to you ladies!

I hate Crohns!!! :ymad::ymad:
 

my little penguin

Moderator
Staff member
Our rheumo mentioned iv steroids if a rxn occurs.
They give those btw in the ER if you have anaphylaxis to anything including food after the epi pen to stop bi phasic rxns.
Did he have antibodies in his blood tests?
Hope it goes well.
I assume they will give him Benadryl prior to the infusion as well...
 
Hi caitlyn,
Had a similar reaction to remicade. They tried with the solute drool and it did not help her she had a worse reaction the next time even with the solumedrol. Sorry not to have good news but every person is different so maybe Ryan will have better luck with it.
 
Oh no! Sorry to here about his reaction. There is a boy at C's infusion lab that had a similar reaction at some point but he is still on it, just now with solumedrol and a slower rate of infusion also(I think). He was there the last time C was there and his Mom was telling me about it. Anyway, he has remained on it for close to a year now without any other issues.
 

crohnsinct

Well-known member
Oh JMK how scary for you. I am so sorry after everything you have been through that this happened. I had to laugh though at your comments about how hard you fought it and now how you don't want to let it go...isn't that always the way!

I have no experience or knowledge but will pray that Ryan's experience is similar to the boy Clash tells us about.
 
mlp - He did have antibodies in his first HACA test. After the 2nd test, they called me and told me things were fine. So now my question is was the level still 5.6 or less...can antibodies go down? Or hopefully they didn't give me someone else's results and Ryan's are higher now!!! Paranoia setting in! Ryan did have tylenol and benadryl before infusion.

kim - another worse reaction is what I am afraid of! Ryan is pretty freaked out by the whole thing too! He will be so scared at the next infusion!

Clash - I hope our reaction goes that well too!

Crohnsinct - I was laughing at myself for feeling that way! It's amazing what fear does to you...And what it does to your kids is worse. I am grateful Ryan was very calm through the whole episode. I know he was scared, but brave. I hope things are going well for you now. I don't know the situation, but you have been missed!

The only wine in the house is warm, so I am stress eating Pillsbury Cookie dough I may gain a few pounds this next week if I don't find an alternative! Thanks for your support!
 
Really sorry to hear about the reaction - must have been horrible to watch. I hope the next infusion works with the extra med added. No experience there sorry. Plenty experience comfort eating ;). After Amy's appointment yesterday I went out and bought a rather large chocolate!
 

Tesscorm

Moderator
Staff member
How scary for you and Ryan! :ymad: I hope the other meds can control any reaction in the future so he can continue on it. :ghug:

Re the steroids... coincidentally, a friend's daughter is on remicade for crohns but she's begun to show symptoms before her next infusion and is beginning to develop antibodies... they've bumped up her schedule and her hospital/GI are going to give her steroids a few days before and after the infusion to help control her body's reaction (antibodies). We didn't get into the details about how much but it was the first time I heard of using steroids for this reason. If you'd like more info, let me know and I can ask...

Good luck!
 
I hate to hear that he had a reaction. That must have been very scary for both of you. Hopefully, the new med will prevent this from happening next time. I can totally relate to the feeling of being afraid of going off Remi! S has done so well on it and I don't want the good days to end. He has his 3rd infusion this Friday.

I have forgotten, how long has Ryan been on Remicade?
 
Thanks Tess - If they know how it helps and any risks that would be great info. Seems like a lot of medicine! It was scary. Thankful for the nurses quick response. That's why you take this stuff at a hospital! I have a friend whose son had a heart attack on a 5K run. After having this small (but nothing near as serious) experience, I have a new respect for what she went through and how she handled it.

Shelley - Ryan started Remi in March, but not at therapeutic levels. This was his 7th dose overall, 3rd at therapeutic levels. He tested positive for antibodies in June after 4th dose so we started methotrexate. We just got "normal" bloodwork in August! How stinking frustrating!!!!

Yes, Ryan is now scared to go for the infusion next week! Gonna be a long week. Hopefully, band will take his mind off things! At least he is feeling good now! Thanks God for small miracles!

Hope everyone is doing well!
 

Tesscorm

Moderator
Staff member
Spoke with my friend and, going forward, her daughter will be taking pred for 8 days, with her remicade infusion at the midpoint. This is to try to offset her body from creating antibodies (tests have shown that antibodies are building).

And, as MLP mentioned the possible use of steroids with reactions, perhaps it's worth asking your GI about this.

As far as risks :( ... I didn't ask. While it's not a long course of steroids, it is repeated courses of steroids (not sure how long they plan to do this???). :(
 

my little penguin

Moderator
Staff member
Tess what you said makes sense.
Any allergic reaction ( food , insect, or drug wise) the child is usually given solumedrol in the ER and then put on a pred burst ( 3-5 days) afterwards to keep down the likelihood of a second reaction.

Since it is a short course then you don't have to wean.
 

DustyKat

Super Moderator
Ugh hell jm :( I am sorry to hear that Ryan had a reaction. Super scary for you both!...:hug:

I hope the steroids work with the next infusion and it remains a viable option for you.

I so know that feeling of dread when starting a med only to wonder what the fuss was about and wish for back when it fails! We are perpetually between a rock and hard a place. :voodoo:

Good luck hun, I have everything crossed that this was indeed a one off! Sending loads and loads of luck your way...:goodluck:

Dusty. xxx
 
Thanks Tess. What your friend is doing is the same concept I guess, only we are taking the steroids IV. We need to try it one more time, at least. Don't want to move on to next drug unless we are positive remicade is a no go.

:dance::dance:On the good side, Ryan's SED is 10 and CRP is .8 and iron is good! His HACA was less than 3.1 so also good, very little antibodies to remicade now.

On the blue side today though!:yfrown: Ryan's wrist is hurting and it just brings home the "Rock and a Hard Place" feeling. I so don't all these issues for him. He loves playing his saxophone...it is his release. I am hoping he hurt it and can't remember and that it's not the start of arthritis or something. This crap can test your faith, for sure!

CLASH - Thanks for the article! At least I know we are trying the right next steps!

On a funny note.....

Our dish network receiver stopped working yesterday. We called to have it replaced and it was going to take 3-4 days to get. Lady overheard me say "That's okay I guess but we can't have people over to watch the Bama game on Saturday". She said, "Oh, that's a hardship! I will put in for a service call tomorrow!" :ylol:

On the road tonight for the County football game! I LOVE watching Ryan have a good time with the band!!!

:mario2::mario2::mario2:
 

crohnsinct

Well-known member
What article? Clash sent you an article privately? What's going on? Another conspiracy to keep us city girls in the dark I am sure!
 
Yes, crohnsinct...It was an article on how to drive city girls CRAZY!!! :runaway::runaway:


See Clash...works like a charm :D:D:D
 
Crohnsinct, yep I'm holding all articles private til I can get on that schmancy fancy cupcake eatery list of yours...it was cupcakes wasn't it? Sheesh...this last CD episodes of C's is truly frying my brain!

Jmckinley, I hope it works out.for Ryan and the iv pred does the trick!
 
Haha MLP! I just tagged jmckinley in David's latest post on the IBD book he does. Oh and everyone forgive the typos I'm on my mobile it seems the cable company hit our uverse lines when digging! Ughh and my fingers just can't effectively work this small keyboard!
 
Hi all , I'm lewis mum , lewis is starting remicade english name infliximab tuesady I no some have had bad reactions to this drug . There starting him slowly over a 4 to 5 hour period just wanted to no what other reactions peeps had and still continued using it just so I no not to freak the hell out if they say well try again if he does have one . I'm hoing he will be nuce and easy and infliximab may be come my friend and not hate it like I hate Crohn's .... Hope you have a better infusion nxt time and he dosnt get to worked up .xxx
 
Lewis' Mum - Ryan did really well in the past, especially when they run it slow. This reaction was right after the infusion started and happened very fast. It slowed down soon after they stopped the IV. I hope it goes well for him. It's a life saver when it works!

Ryan has some weird joint pain in the infuson arm. It started Thursday (infusion fail on Tuesday). His wrist is a little swollen and the vein is really protruding. Keep in mind that he plays saxophone, so it could be repetitive injury, but you know how our Mommy minds work!
 
Hopefully it's just a bit of inflammation. If that was the infusion arm, then the meds would have had time to reach the veins in the arm before they switched it off. The tissues are probably just irritated and will settle over time. Might be worth giving him an over the counter antihistamine (piriton/piriteze here) if he is allowed.
Hope it gets better soon!! I know about that mommy mind worrying. Andrew has got some strange patches of skin on his legs - because he was on the Aza my mind zooms forward to skin cancer - talk about paranoia ;)
 
Thanks Sascot! I had given him tylenol because he can't have ibuprofen with no results. Didn't think about antihistamines. If it's an allergic response, that might work!:thumleft:
 

my little penguin

Moderator
Staff member
Also if it does not go down talk to a rheumo since it could be crohn's related.
H1 blockers such as benadryl work and sometimes an added H2 blocker (zantac) can help- talk to your ped about it.

hugs
 
Hope Ryan's infusion goes smoothly this week. It just plain sux that not only does he have to deal with the physical side of crohns, but also emotionally have to face doing it again after such a scary experience. Our kids have to be so brave way too early in their lives
 
I am talking to GI tomorrow to try to postpone infusion to the next week. This coming week, Ryan has reminded me, is finals week for him. He doesn't need the added stress of infusion with tests coming. Since his bloodwork is good, I am hoping they will do it.

May see GP tomorrow about wrist. Will ask GI about it. Tonight I will try one of the meds you guys told me about. Thanks!
 
I started having that same reaction a few infusions ago (and I've always pre-medicated with Tylenol and an antihistamine.) Throat and chest closed up, turned red and couldn't breathe. It happens about fifteen minutes into the drip. When it happens, we stop for a half hour and then re-start without any issues.

The doctor who administers my infusion said we could try adding a steriod IV if the reactions become severe, but I'm not sure I want to go down that route.

At this point, I'm considering switching to Humira - not only because of the reactions, but also because the Remicade is becoming less and less effective. I'm already on a high dosage/short interval - 10 mg/kg every 4 weeks.

If Remicade works well for Ryan, I would suggest you try pre-medications and/or steroid IV (and maybe even add azathioprine or methotraxate). Best of luck to you.
 
Well nothin' doin' on moving the transfusion. They have no openings that will allow enough time. It will take 5-6 hours this time with the solu medrol and slowing the infusion rate. So, Thursday it is! Fingers, toes and eyes crossed!

Scoutfinch - your symptoms sound identical. I am glad that you could continue to use it after the reaction. Sorry that the remicade is fading. Ryan already has methotrexate injections added to the remicade regimen. If this doesn't work, we will be off to Humira also. I am really hoping this will buy just a little more time because it works for now.

Thanks for the pep talks!

Oh, I almost forgot...the wrist is better today, but still hurting. I'll be interested to see 1. what GI says and 2. if it happens again after this next infusion. Truth is, I just hope it doesn't come back and don't care what it was...It is an upsetting pain for a teen who LOVES to play saxophone!
 
Just wanted to say good luck for the infusion!! Hope all goes well and there is no reaction this time. Will check in when I get back from holiday.
 

DustyKat

Super Moderator
Good luck for Thursday jm! I will have everything, and I mean everything, crossed! :goodluck:

Dusty. xxx
 
Just wanted to wish you Good Luck with the upcoming infusion!! I'm with Dusty, I'll have everything crossed for you guys!
 
:( that sucks that he had a reaction!! if he continues having the reaction try to find other treatment options. and have you tried changing his diet at all? just saying cuz that's the best treatment I know of and I know quite a bit about it (only thing that helped me) so if you got questions I'd be glad to tell you about it. I hope everything goes well and he is able to continue though!
 
Thanks Ladies! :mademyday:A little apprehensive about tomorrow, but gotta put on my big girl panties and be optimistic for Ryan.

On a happier note...today is my Anniversary! Been married for 20 years to a great guy who drives me nuts! Am I crazy or what!:ywow:

Sarah, I would be interested to know what foods you found to be your triggers. We have been trying to do some diet elimination. Even went full SCD for about 2 1/2 months. It helped some, but he lost so much weight, we had to scale back.
 

Tesscorm

Moderator
Staff member
:Karl: Happy 20th Anniversary!! :Karl:

And, good luck for tomorrow... hope all goes well!!!! :ghug: :ghug:
 

crohnsinct

Well-known member
How come JMrogers is married 20 years and she isn't being teased as old...oh yeah cuz she married younger than me:shifty:

HAPPY ANNIVERSAY AND HAPPY INFUSION TOMORROW!!!!!!!!!
 
Happy Anniversary!!

Yeah the diet can be tough because there can be so many foods eliminated. I posted on my page thingy what my specific diet is. It's a lot to take in at first but I found it extremely helpful. My biggest thing is definitely staying away from cows milk though. You can use almond milk and goats milk yogurt as substitutes and they're very similar :)
 

DustyKat

Super Moderator
Wow! Happy 20th Anniversary!



Congratulations!


And sending loads and loads of well wishes and good luck for today...:goodluck:

Dusty. xxx
 
On my tablet at the infusion clinic. So remicade is out. Ryan had another reaction and we are hanging out so they can make sure its over. GI out of town, so we will get a new plan next week.

I hate the feeling that this is completely out of my control!
 
I was thinking about you guys at Grace's eye doc's apt. today.:heart:

Sorry it went that way. Was it as server as last time?
Poor kid. :kiss:
Tell him anytime he wants to stay at a farm he's welcome here.:D FREE LABOR!:wink:
 
Don't tempt me Farmwife! I might just pack him up and send him. Good luck with that LABOR thing though!

Yes, this was our last shot at remicade. The reaction was bad enough in spite of tylenol, benadryl pills, hydrocortisone, and IV benadryl, that they won't try again. We will be on to a new plan next week after discussions with GI. The stress of this morning brought on some GI symptoms for Ryan. Heck, my stomach feels like crap too! He is sleeping the day away, probably for the best.

...that moment when you realize you are completely out of control of a situation.....
 
Sorry he had another reaction. I was thinking of you guys today while on the way to GI! Hoping it was all going well. I know the out of control feeling, sending hugs and support your way!
 

DustyKat

Super Moderator
I am so very sorry to hear this jm. :hug:

It surely is awful to feel that you are always looking over your shoulder waiting for something to pounce. :( Good luck with your GI appointment next week, I hope more than anything they are able find your boy lasting peace and relief.

Dusty. xxx
 
Aw hunny , that's proper rubbish, hopw iu find another med that works, I was talking to a lady on the ward she said her son had a reaction to rem and he was given something that was like a epi pen and injected himself I should ov asked the name for u, sending hugs over the sea.x
 
Lewis' Mum, it is probably Humira that you are talking about. That is what our GI mentioned trying next.

Trying very hard to have a good attitude. "Ok, check that one off. We know where we stand, he is essentially feeling ok right now, so we have some time. Move on and find a new course".

Doesn't work every second of the day. Tears want to hit unexpectedly, but dealing for the most part. I know it could be worse. Hugs to everyone!
 
Sorry to hear about the bad reaction. Glad he is feeling ok now, you must have been so stressed.
Hope the GI comes up with a good new plan next week
 

Tesscorm

Moderator
Staff member
It's so frustrating! I can imagine your disappointment at having to start fresh with a new med! :( I hope Ryan is feeling better today and yesterday's GI symptoms are gone, poor kid! :ghug:

Guess we all know that feeling of losing control! :ghug: :ghug: Hope all goes well at next week's apptmt.
 

crohnsinct

Well-known member
NO WAY! Dang Flabbit! So frustrating when he seems to be doing so well otherwise.

Glad he recovered nicely. Good luck with the next step! Keep us posted.

Now if you could all get your kiddies inline my blood pressure would really appreciate it. O is doing so well but I stress every day about darn IBD and not for her sake but for all the others. I literally feel my heart race when I see you have all posted. I was off line for over 24 hours and was getting the dt's not being able to check on everyone....or was that my alcohol withdrawel?
 
So scary! Such a bummer when Remicade is working so well too. Just wanted to pop in that Alex is doing well on Humira after Remicade. <hugs!>
 
Yay! Glad to hear the Humira is working for Alex since that may be our next step.

Interesting...I talked to GI Nurse today. Ryan's SED and CRP are even better this week than last week and he is 8 weeks out of remicade treatment and has had 2 failed attempts at infusion. Her theory is that MAYBE it's the methotrexate that has him feeling so good and MAYBE we should try using just that and keep an eye on bloodwork.

Sounds like a possibility. Wonder if the GI will go for trying that? Then maybe we could keep Humira in our back pocket for later.

Crohnsinct...I am torn right now. I am very worried, frustrated, etc over this setback with the remicade. At the same time, I feel very blessed that Ryan is doing well in spite of it all. It could be so much worse, I know that and feel guilty for being down in the dumps. I need......a punching bag, a bottle of wine, and some brownies!
 
That's great that Ryan is doing well despite all the stress with the Remicade. It would be good if he could just keep taking the methotrexate and not have to change yet.
Might have to join you if you bring out the wine, punching bag and brownies! In fact you can punch the bag while I drink the wine and eat the brownies :ylol:
 
I need......a punching bag, a bottle of wine, and some brownies!

1 A punching Bag, I'll send crohnsinct!:ymad:

2 A bottle of wine, I'll send grape juice. You'll thank me later.:thumleft:

3 Brownies, I'm make it! Do you want the "clean" brownies or the "not so clean" brownies?:lol2:
 

Tesscorm

Moderator
Staff member
I think I want Sascot to make some 'special' brownies - she's just been to Amsterdam after all!! :lol:
 

my little penguin

Moderator
Staff member
Has he ever been on Mtx by itself?
If not then maybe the Gi would go for it.
Also keep in mind most at our infusion center are on 8 week sch for infusion.
We did Mtx but no go.
Hope it continues to work for him.
 
I'll be taking those "special" brownies please :whistleinnocently: I mean, if you're gonna make me drink grape juice, I'm drinking clean. Right? Might as well have some fun somewhere. And send Crohnsinct right on down. After some special brownies we can go out and hang with the college students. I know this cute Deputy Black who can arrest us for bad behavior! :emot-cop:

(I really need to get out :ytongue:)
 
MLP, We have never done methotrexate alone before. GI went straight to remicade after the 6mp failed. We did infusions every 8 weeks until bloodwork showed it wasn't helping, then went to 6 weeks. Maybe methotrexate will work for a while. :ysmile:
 
See y'all that's how messed up you are.:eek:
When I said "uncleaned" I meant processed as in non-organic.:ymad:

Y'all need to move onto a farm and clean those dirty minds out.:yfrown:
 

crohnsinct

Well-known member
Oooh! Deputy Black! Throw in his friend Fireman Fred and I am there!

It's been a while since I got thrown out of a bar for fighting...I am just itchin'...be right there JMK and second those brownies! and grape juice? :boring:

As for the MTX alone question I totally agree. That is what I was actually discussing with Clash the other day. That's why I would want all the Remicade numbers etc because maybe C just needs MTX and keeping the Remicade is just over medicating him...but unfortunately if the levels and antibodies come back fine, once you add MTX, the only way to find out is to stop the Remicade and if it was really helping then good luck trying to reintroduce...so we all just stay chained to it hoping,

FWIW at our infusion center they said they only have a few kids at 8 weeks and that 6 seems to be the norm. I am actually anxious to see if since O is doing to fantastically (pay no mind to the squaking crows) well the doc will try to start moving her schedule out a bit. I just did our healthcare spending account and had to figure out the cost of infusions for the year. At the conservative 8 weeks the Remicade costs a total of $25K...ugh! We of course pay a small portion of that but still! Guess I am going to have to find a way to pay for all that grass fed beef huh?
 
Come on Crohnsinct! My brother is a fireman. I can call on one of the Combat Challenge team guys! They are all pretty hot! (Reminds me...I need to make lunch one day and take it to the station :biggrin:)

Farmwife...I sorta live on a mini farm. We have 5 acres, 2 dogs and a horse, 4 wheeler, dirtbikes. Shhh, I hear you laughing... :rof: Not anything like your place, but I'm not "citified". We just live on the outskirts of the wildness. Our town turns into complete chaos in the fall when there are Bama home games! I get to be both, city girl/county girl!

OK, back to crohn's (we seem to get off track on every thread :blush:), I am learning the disadvantage of the top down approach! If the methotrexate is what has gotten him into remission, then we have eliminated remicade from our arsenal for nothing. If we had tried the metho first, remicade might have been an option for later. He probably still would have had a reactioin, but who knows now?
 
Such a bummer that he had another reaction. :hug::hug:

Is it possible that the Remicade healed him enough that the MTX will now work as a maintenance therapy? I think that is the concept behind the top down approach, inverting the pyramid as they say. Kick the disease hard with the big guns and and move to lesser drugs to keep it down. Hoping that is the case and you can use Humira way down the road (or never once they figure out the causes and solutions to IBD).
 
Sorry I am just catching up. I have had a very stressful several weeks so have only had time to glance at a thread or two here and there. I am sooo sorry about the reaction although I have to say I am not surprised. Caitlyn had the same sort of thing. About the methotrexate alone. Caitlyn was on it with decent results for just under two years until it stopped working. It is definitly worhtwhile pursuing and holding the humira for later when needed.
 
So the GI called today for a game plan. We are going to continue to do the Methotexate injections alone and go back to see him in a month. Do bloodwork and look at him then to see how things look. We are just to call him if anything looks worrisome.


:thumleft: I'm good with this! So far, he is doing pretty good. We shall see!
 
Jmckinley, just checking in to see how things are going!! Hope all is well with Ryan and the MTX is kicking CD butt!
 
Thanks for checking on us Clash! So far, things are pretty good. Ryan seems a little tired, gassy, and pale, but his weight is maintaining. He's been really busy with school and band, so I hope that is the culprit. I am hopeful that the methotrexate is enough to keep CD at bay. We will go to the GI office on the 20th to have bloodwork done. That will tell us if it's working or not.

How about C, how is he doing?
 
:dance::dance::dance::dance::dance: This is my THANKFUL DANCE!!

Very excited today! Went to see the GI yesterday. Ryan has gained 2 pounds since the infusion went sour. Got his bloodwork results today and right now, his levels are all great. GI says we can see him in 6 MONTHS unless something comes up!

We will continue the methotrexate AND he will let us wean off the prilosec for the first time in 3 years. Can this really be? Very hesitant to believe it's going this well, it's been so long!



Also, we talked to the new nutritionist. She was very helpful and actually the first person to suggest that the paleo or SCD can be helpful! Are they catching up?

Let's toast with some champagne! (Sparkling Cider for you Farmwife):)
 
Wow, what great news!! It's about time the nutritionists caught up with some of the diets that might help. Ours just did the "eat whatever he wants but avoid it if it causes pain". Enjoy this time ;)
 

DustyKat

Super Moderator
Yeehaw jm! :mademyday:

I have everything, and I mean everything!, crossed that all keeps heading into positive territory! :):):)

Dusty. xxx
 

Tesscorm

Moderator
Staff member
Wow, what a super post! So happy to hear he's doing well! Great news to receive just before the holiday! :banana:
 

crohnsinct

Well-known member
:dance::dance:woohoo! Thankyou Ryan! I needed an excuse for Champagne:lol:

Love the bump out in appointment also!!!
 
Thanks everybody for the well wishes! Lots to be thankful for here, not forgetting great friends to share good news with!

Hope everyone is having a good weekend. :ybiggrin::ybiggrin:
 
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