Follow up Remicade after an allergic reaction

Clo, I reacted on my third infusion. My gi had them stop the infusion & give me IV benadryl & soluble medrol & slowed the infusion rate to a crawl. My infusions started at 7:00am with iv premeds & ended at 2:30 in the afternoon, a very long day. I did great with this protocol & never had another issue. I would discuss this with the dr, if you react once odds are it will continue unless you get premeds in advance.

Good luck.

Thanks all for responding.

Stray dog,

My infusions currently take 4 hours. I will see if they can slow it down more. You are right about it being a long day. 2 hour drive one way to get there. If we bump it longer it'll be a long day But if it stops a reaction I am all for it.

Keith,
How do you tell the difference? I had the antibody test done thru Prometheus. Antibodies were at 14.98??? Remicade level was at 1. (We had been pushing the Remicade out to 12 weeks, then went to 10 weeks and then 8 weeks because of the renal failure.) I had previously taken methotrexate to stop antibody development. Between surgery and renal failure I hadn't taken mx since March. I just restarted it 10.16. They are hoping that the methotrexate will lower the antibody level making my body burn thru the Remicade slower. Does it take awhile for methotrexate to build up in your system,?

When I came home the infusion center called and asked me to continue the benedryl for 48 hours just to be safe. I have never read that in here... So this is sorta freaking me out. I wonder if I should message my GI with the information, ask for a longer infusion time and a follow up Prometheus test?

Thanks for your help guys. I appreciate you!
Clo

One of your best resources would be the nurses at Janssen's Remicade Support Line. https://www.remicade.com/contact-us.html

The nurses there will have access to all the research data and information - if they can't tell you something then they will pull the data and ask that you have your GI or their office call in. They will also document your case and your adverse reactions. I have had to do this before for some of my reactions to biologicals (Serum sickness and possible Lyme Disease from a tick bite).

clo2014 said...


My Egfr was 85 last infusion and 77 this infusion. So much better. But GI thinks that he wants to raise the Remicade amount to 10 and shorten the duration to every 4 weeks until my Remicade trough levels come back up. He is hoping the reactions will calm back down if we get enough Remicade built up in my system.

Anyone ever hear of doing this?

Clo

My GI does this, he even goes for triple the dose for certain patients. He says “it powers through some of the reactions”.

With your other issues I’d check with your other doctors before you go that route, just so everyone is on the same page.

Premeds are Methylprednisolone 40 mg and diphenhydramine 50 mg. It was the infusion doctor (infectious disease doctor) who told the nurses-yes, he did confirm it to me also- that the Remicade could go bad if we have to stop it. 5 hours was the max that it was good for. I suggested mixing it in 2 different bags if we need to but no one responded to that. Will try again next week.

GI has stated he thinks he is going to keep everything the same. 7.5 every 6 weeks with methotrexate once a week. He wants to see if the methotrexate makes a difference in the next 13 weeks. That could all change once he gets the Prometheus results back.

No on the epi pen.... Although I didn't push it. He thinks if I take benedryl once I get home I should be ok. This scares me cause I live out in the middle of nowhere.

He sorta scolded me about not using his PA. She is a nightmare for me. She is not timely regarding my messages. Once she gets involved it seems like everything is a struggle. She listened to my concerns about methotrexate (I was really sick) and her response was... Well I don't know why you are telling me that you will continue to take methotrexate if it's not sustainable. (I had acute kidney failure right after that--she didn't address how Ill it was making me at all.) Then there's the time she decided the patients going to an infusion center they referred us to had to go to LabCorp to get our blood work done that day-before the infusion- because the infusion center was not sending over the labs in a timely manner. (I took screen shots the next day after my infusions and sent them in My chart to ensure she had mine so this wasn't completely correct.) I had to get a ride into their office 2 hours away, using a neighbor for my driver, using a walker, to pick up my lab orders because she refused to send them to the infusion center because she wanted all of us to go to LabCorp. She was furious because I was non compliant about going to labcorp--but I told her I as a patient I got to choose where to seek medical care and I was completely compliant with medications and requested tests.... And in the last 3 months since I started avoiding her like the plague.... My GI wants fecal tests. I again got rides to a LabCorp only to be told they didn't have the orders---twice. So after all this brouhaha with her... I am only seeing him. I advised all my other doctors they no longer had permission to use her and they must go thru my GI. Not his PA. So he brought this up .. asking me to use her services because she is on his staff... And when I started to tell him what had happened he said he didn't want to hear specifics. We needed to be cordial and play nice. I told him not to ask me to utilize her. She didn't like me and I do not trust her for timely or correct medical services. He told me to text him a short text if things went south again. I am so disappointed, my colorectal surgeon shares office space with him so I will probably have to look for a new surgeon too. Anyone know any good docs (GI & CRS) in the Dallas Fort Worth area? Why would a doctor not want to hear what happened? When I asked him if I had been unprofessional in person or via the portal he said no never. This PA is gonna mess around and cause someone she does not like some serious damage. (She didn't relay to him that I was in acute renal failure for 8 to 10 days. Thank God for my PCP.)

Nephrologist said to wait until I am alittle more stable before changing in case we have issues. I don't know... What do you all think?

Sorry for venting. I have never had this experience before.

Clo