Alright Remi users! ?'s

[izzi'smom]

DD is scheduled for her first infusion Monday, 8/15. Of course it falls in the middle of a week away with my SIL...

Those of you that have had reactions...were they immediate? I'd like to leave the day after her infusion if possible.

Also, I haven't gotten any info other than reading up on the Remi drug facts...any points that may be helpful? We got a PPD and received her 5 YO vaccines early. Anything else to plan for?

Thanks in advance!

 

[davidr]

I believe that most reactions occur during the infusion, which is why they start out slow and gradually increase the rate. That said, I have heard of cases where the reaction occurs later, but it doesn't seem to be that common.

 

[Lydia]

My reaction took a year to happen and it was very gradual. So gradual it took me awhile to connect all the dots and link it to the remicade. But the remicade healed my fistulas in 4 days, and saved me from a colostomy so I cant complain. Now that I am stable enough, I can move on to imuran. My first year on it was awesome. I felt great with little side effects, even during and right after the infusion.

 

[Steph<3]

When I receive my infusions I am out of it that day and usually a day or two after. So she might be out of it too. Especially if they give her liquid benadryl. I haven't had any reaction yet but from what the nurses have told me each time I've gone in is that Remi users will typically feel an allergic reaction during the infusion (hence the benadryl). Good luck to DD!

 

[rygon]

They do say it can give u flu like symptoms as well. I had my 1st infusion yesterday, with a steriod to counteract the side effects and had no problem at all

 

[moogie]

The only reaction I have is the weakness and tiredness I feel after the treatment. But that leaves after a nights sleep.

My nurse says she's been doing this for 2 years and she has never had any patients showing signs after the infusion. SO I guess it's rare. When somethings happens it's right at the begining usually.

Good luck!

 

[PaulsPain]

I had my fist infusion last week. Everything went smoothly. I wasn't given any premeds. As mentioned they start very slowly. The nurse told me only 3 drips in the first 15 minutes and it slowly ramps. Afterwards, I felt like I was hit by a truck- extremely fatigued. The next day I had nausea that lasted all day that thankfully went away the next day.

My discharge papers talk about a delayed reaction and give a list of symptoms. If you experience any of them they instruct you to call the office or go to the ER. I did ask the nurse about delayed reactions. She said in her 8 years there she has only heard of one case of somebody having a severe reaction after leaving the infusion center.

 

[hannah-rose]

Has the Remicade healed your fissures Paul?

 

[Mountaingem]

When I receive my infusions I am out of it that day and usually a day or two after. So she might be out of it too. Especially if they give her liquid benadryl. I haven't had any reaction yet but from what the nurses have told me each time I've gone in is that Remi users will typically feel an allergic reaction during the infusion (hence the benadryl). Good luck to DD!

I'm the same-my doctor recommends taking Benadryl and Tylenol every four hours the day of the infusion, and the day after.