Son starting Remicade - some newbie questions

[Tesscorm]

Hi everyone,

My son, 18, will be starting remicade soon. I'm terribly worried about this, not happy about it, generally feeling sick to my stomach at the thought that he needs this medication :ack: but... his GI is adamant that he begin remicade to try to minimize the risk of future surgery so... we are starting down this road.

I hoping some of you with experience can help answer some questions for me re things to watch out for and ongoing testing.

Can you tell me what symptoms you have been told to watch for while on remicade? I understand that reactions can occur during the infusion but this is watched while you are at the centre. But, can you have a reaction later in the day or the next day, etc.? What about other side effects? ie infections, any muscle pains?, fatigue, fevers, coughs, rashes, lymph nodes, etc. Anything specific that your GI has mentioned you should watch for. I have no idea what to watch for and am not completely confident that the GI will be as upfront as everyone here, may just quickly gloss over some things.

What blood tests does your GI run while you are on remicade? What sort of result would indicate any kind of problem?

And (sorry, just one more :redface, what tests does your GI run to determine it's effectiveness? I'm particularly concerned about this as my son's labs are fine right now (CRP only slightly above normal), has no outward symptoms and feels great. He's starting remicade because MREs show that he was 20-30 cm of inflammation in his TI. Should I expect another MRE soon? How soon could we expect inflammation in his TI to be lessened?


Thanks for all your advice!!! It is much appreciated!! :shifty:

 

[Clash]

Tesscorm, we get a sheet of what to look for with Remi infusion. It divides it by time frame and what to call doctor about.

First, it says to seek Emergency Medical Attention if you experience a sudden onset of shortness of Breath or Chest Pain(which I would assume indicates an allergic reaction)

The following are possible side effects and should be reported to your physician's office so they can be treated

0-7 Days after infusion
headache, nausea, difficulty breathing, redness or drainage from IV site, low blood pressure/feeling faint, chills or flu-like symptoms, skin itching or rash

7-21 Days after infusion
malaise, joint pain, fever

As far as blood work, I believe C gets CBC-Diff, Comprehensive Metabolic Panel, CRP. There may be one or two more I'll dig around and see.

C once had a blister come up on his lip suddenly after we left the infusion center. I called the Remi nurse she said to give benedryl and if any other symptoms occur to head to ER. Nothing else occured and the blister went down before I think the benedryl even had a chance to work. Not sure what it was all about.

You can have the antibodies level test and the remi levels test to check out effectiveness, I suppose. It is fairly easy with C, he is either having no symptoms or symptoms. I guess we are looking at all of that now. If we go by when sypmtoms start returning we are looking at 3 to 4.5 weeks of no symptoms after infusion. I guess we'll know more when his antibody test and fecal calprotectin come back this week.

Even though Remicade isn't getting C there, I am still so very thankful for the few weeks of no symptoms he experiences after his infusions. I know Remicade may not work out and we'll kick it to the curb but it will be hard to lose that period of no CD symptoms at all. It has to be harder with Stephen because he isn't having symptoms to begin with.

HUGS!!!

 

[Tesscorm]

Thanks for ALL the great info, Clash!!! :worthy:

 

[Clash]

Chase has only ever been fatigued after infusion and it really isn't for very long, maybe an hour or so if that(part of it may be the drive home because he does sleep where ever we ride too) and I don't know if it is due to the Remicade or the Benedryl, kwim. But I would track how he feels for several infusions and report them, that way if anything that ever concerns him or you occurs, you'll have a journal to refer the GI to his norms.

 

[AlliRuns]

2 days before my first infusion, I got a phone call from the specialty pharmacy in Toronto. The pharmacist was VERY through. She went through all the risks, possible side effects, things to watch for, things to avoid, etc.

I had previously had a convo with the doc, and another with the consultant from BioAdvance, but the pharmacist was the most clear.

 

[Tesscorm]

Thanks AlliRuns :ybiggrin:

 

[AlliRuns]

I recommend against reading the drug information on the Janssen website.. It will make it seem scarier than it actually is.

Also, the nurses at the infusion clinics are very professional and know what to do if anything should happen.