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Crohn's Disease Forum » Parents of Kids with IBD » Lucy has had a bad reaction to infliximab


 
04-02-2013, 10:42 AM   #31
polly13
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Thanks bubbly panic off re chicken pox for the moment blood work shows she is immune re the ibd GI nurse concerned symptoms are returning and she is going to speak to the GI who will hopefully see us this week and move the infusion up a couple of days
04-02-2013, 11:48 AM   #32
Farmwife
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I hope it's not returning. Hugs to you both.
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I'm mom to............... Little Farm Girl 8 yr old
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dx Juvenile Arthritis
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dx Erthema Nodosum
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04-02-2013, 02:07 PM   #33
Bubbly
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So pleased to hear re chicken pox. Fingers crossed for next infusion, look forward to hearing all gone well x
04-02-2013, 05:15 PM   #34
my little penguin
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Fingers crossed
Hope it goes well
We have been officially pulled off remicade
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04-03-2013, 04:40 AM   #35
polly13
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Small update GI nurse called me back last night so GI is seeing us on Friday and the have moved her infusion forward to Friday as well, have also added cipro and low dose flagyll so now she is on infliximab, 6mp, flagyll cipro and movicol - how much meds can a little body take! The GI nurse was surprised that she was flaring again so soon after starting infliximab but has assured me that they still have some options so feeling a little better today.

Mlp saw your other post about starting humira really hope this one works and hope you are ok - it is so deflating when all hopes are pinned on a drug and it doesn't work- know how you feel.
Polly
04-05-2013, 01:38 PM   #36
polly13
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Had the infusion today and Again she had a reaction so again slowed it down and put it in over 7 hours and happy to say no problems. GI is stopping 6 mp and maybe adding methotrexate in 6 -8 weeks after 6mp is flushed out. Long long day but hopefully we will see some improvement over the next couple of days
Polly
04-05-2013, 04:38 PM   #37
my little penguin
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So sorry to hear about the second reaction.

DID they pre treat her with IV steroids prior to the infusion?
Glad to hear it stopped after they slowed it down.

Hope the MTX does the trick.
IS this infusion 3 or 4 for her?
04-08-2013, 03:52 AM   #38
polly13
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Hi mlp they gave the steroids and Piriton before infusion and again after the reaction. This was her fourth infusion so they think she will probably react always going forward but because it is not a full blown allergic reaction the are happy to continue with the treatment (just at a really slow pace for the infusion). Infliximab is Lucy's best option at the moment so they will do everything possible to ensure the infusion goes in. It is an absolute nightmare because a mothers initial reaction is to stop the infusion and not leave her within a mile if it after such a reaction but common sense has to prevail and she really needs it
04-08-2013, 04:18 AM   #39
my little penguin
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I completely understand.
We gave DS steriods prior to his last infusion after he had a reaction.
Unfortunately he reacted after the infusion. Was over both times .
This last time the symptoms persisted for a week after so ....
One of the specialists said it would have been different if he had reacted during then they could have slowed the rate or if it was one if the first few infusions then he would be a le to tolerate later but ...
Since he had tolerate 6 infusions first his would only get worse not better .
Good luck with the remicade
04-08-2013, 04:25 AM   #40
polly13
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Oh mlp that's really hard to take, we agonise and lose sleep when deciding to give these drugs to our children but for me once the decision is made you just want it to work but to go through the same agony with another drug is awful - you are in my thouhts
04-08-2013, 07:45 AM   #41
jmckinley
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Glad to hear that slowing the infusion down worked to stop the reaction. Ryan reacted at his 7th and 8th infusion, so I get it. The instinct to just yell "STOP" is so strong. But if it will work, then go with it. The other meds are certainly not better. Ryan's reaction did not stop with all the pre-treatments and slowing it down, so I am thankful that worked for you. I hope she is feeling great!
04-08-2013, 07:49 PM   #42
Farmwife
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I'm so glad they could slow it down but I know how that must weigh on your mind.

Hugs from Grace and I.
04-08-2013, 08:39 PM   #43
Brian'sMom
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7 hours!! My heart goes out to you both. At least you were able to finish the infusion I'm sending good vibes your way that Remi does its job!
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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-08-2013, 10:40 PM   #44
Kimberly27
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Wow! What a long day! You did well, Mama!

I hope things improve quickly for your daughter.

Kimberly
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04-09-2013, 04:58 AM   #45
polly13
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Just a which update - we love infliximab. In the 4 days since the infusion Lucy is 80 per cent better and fissures significantly smaller. Fingers crossed the will fully heal this time
Polly
04-09-2013, 01:56 PM   #46
CarolinAlaska
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Just a which update - we love infliximab. In the 4 days since the infusion Lucy is 80 per cent better and fissures significantly smaller. Fingers crossed the will fully heal this time
Polly
That is wonderful, Polly! Thanks for letting us know!
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04-09-2013, 03:02 PM   #47
Farmwife
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So great to hear some good news!
04-09-2013, 03:08 PM   #48
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Great news Polly!! Keeping my fingers crossed for your girl!!

It is amazing to me that these drugs can make a difference so quickly!
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04-09-2013, 04:30 PM   #49
my little penguin
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so great to hear
04-10-2013, 06:28 AM   #50
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Brilliant news.

My son has 3rd infusion in 11 days time, hope we also have a good outcome!
04-12-2013, 12:01 PM   #51
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Great to Hear! I am glad she was able to finish the infusion. Hopefully her reactions will allow her to still continue with it. Do they premeditate with an antihistamine? The one we use here is Benadryl. I don't know if it has a different name over there.
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Crohn's Dx'ed Sept 08
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