Infliximab take 2

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polly13

polly13

Joined
Jan 28, 2012
Messages
566
Location
Tipperary, Ireland
And tommorow we try again.............. so far so good, Lucy is really well, chest infection has cleared up and blood work yesterday doesnt indicate infection so fingers crossed we will be able to start the infusions tommorow.
 
good luck tomorrow lewis goes back on the 17th we actually look forward to going in cause he feels so good afterwards for all the heart amd mind searching choosing for him to go on it what a turn around .hope she feels good after .xx
 
Holy Cow! I have never heard of such a wait. Are the infusions in a center at the hospital or are they just being done in the hospital. If the later maybe that is it...they have to order up the Remicade etc. I sure hope you get to go to a smooth sailing center for the rest!
 
Only one GI centre in the country so they are really busy but the wait was for doc to show up before infusion could go in , not much point telling people to show up at 8.00am and get them to wait to see doc until 12.30aaggh anyway the infusion is in an hour and things look good
 
So we are three days post infusion today. Lucy is in great form, she seems to have endless energy and is spending hours riding her bike, even had to put on rain gear on her this morning and leave her outside.............. this is not lucy so I am putting all this down to a positive side effect from the infusion.

However, I have seen no improvement in her IBD symptoms yet and while that doesn't concern me as the IBD nurse told me because one of hte fissures is so bad - it might take two infusions..... but everybody I have met in the last couple of weeks seems to have had a family member on Infliximab and everybody is saying that I will see an improvement imeadiately so that nagging voice is there - what if it doesn't work. If you child has been on or is on remicade/inflyximab how long before you saw results.

Many thanks as always
Polly
 
Wow, so fab to hear she is feeling good! :):):)

We have no experience with Remicade at our end but many a folk here don't see immediate results. I hope soon sees IBD improvement to match her energy levels! Good luck!

Dusty. xxx
 
Glad Lucy is feeling good and able to ride her bike! I have no idea on the Remicade, sorry. Hope it starts working soon!
 
hi well at last u got ur infusion with lewis infusion we saw immediate results his scond awnt so obvious now i no when hes due he starts getting tire a few days before. hes even had a peri anal abscess whilst hes been on that and aza . we have a meeting with our docs monday to se why they think this happened it could jst be a one of but thfistulas he has was the reason he went on them .if her energy levels are up its doing its job as her fatigue and inflammation must be reducing . i love the first few days after infusion .xx
 
It took DS well over three infusions...
Then one day out of the blue my kid was back --- not even infusion day ...
So it is possible
Having energy is a really positive sign ... Keep it up.
 
I would say that her energy and disposition is probably a good sign and would try to be patient with the rest. I have heard fissures take a while. My daughter responded quickly BUT she was also on prednisone so I am not sure how much of her early response was due to Remicade and how much to Prednisone.
 
The energy levels have dropped right back down to where they were prior infusion. Her ibd symptoms are slightly worse loads of screaming and blood doing her bm last night. I know it's too early to panic just yet but we are a little dissapointed.
 
Sorry to hear that she's not as perky today. Remicade didn't work for my son, but I know many peolple that it worked well for, and of those, some had immediate results and some took a while. One in particular says he feels like Superman for a week after and then levels back out. Maybe that is her case and it will just take time for the gut to heal. Remember it took a while for it to get like it is and healing will take time too! But the activity level is a good sign that the remicade is having an affect on her.

Hugs!
 
I am so sorry. :( We gave it a few months before calling it quits...I was hoping it was the solution for her. :(
 
Remind me...is she on anything else? My daughter was on prednisone at the same time so I attribute the quick recovery to the steroid more than the Remi. Also, Remi didn't get her all the way there she needed a course of EEN. Once that was complete (6 months post dx) it was smooth sailing.

Hoping it starts to work for her soon!
 
She is on 6 mp as well , she has been on that for a year at this stage I don't feel it has done anything for her. She has been on prednisone before and it probably worked better than anything else but GI is loathe to go with that again. She has been on flagyll pretty constant for a year but we had to stop it due to fizzy legs!! Will ask GI about the en but I don't think that is advocated in Peri anal disease. I am still hopefully that the infliximab will work but with every passing day I am starting to worry little more. You are giving me hope mlp.
Polly
 

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