Hi I live in a big metroplex city where there are already a large amount of  cases of covid. I have a Remicaide Infusion coming up within the next week. Is it worth it to try to stretch it out? Has anyone gone a month or two without their remicaide? I do not want to develope antibodies, and I have only been taking it for a few months. Is it an option to stop it for now and continue when things get better? Finding another provider is not an option for me, I am on the 1 specific hospital program to receive my infusions there. 

 

This may be helpful to other Remicaiders as well. Any feedback is appreciated. 

Original Post

What a difficult choice to make!  If you don't do the Remicade on time, you risk a flare and also a build-up of antibodies; yet, if you go to the only facility in your area you risk Covid.  What a horrible place to be in! I don't have an answer for you in this catch 22.  I'll be praying for wisdom for you in either case.

Have you talked with your GI or Surgeon to see if there is a possibility of having the infusion at home with a home nurse infusing it? Maybe they have another idea we haven't thought of to protect you during this crazy time.  Just a thought.

Thinking and praying for you!

 

Since the virus is primarily spread from touching hand to face, I think I’d risk the infusion rather than miss a dose.

Easy for me to say, right? I was on Remicade for 10 years before the pouch. There were lots of times I had scheduling conflicts but never missed by more than a week. The c19 situation is a lot different I realize. Hope it works out whatever you decide!

I don’t think it’s accurate to say that the virus is primarily spread from touching hand to face, though touching contaminated surfaces (that may have been touched by dozens or hundreds of people) is certainly a risk. The risk is mostly related to the number of people you’re exposed to, so a crowded infusion room is much riskier than individual infusion rooms. Masked healthcare workers are safer to be around than unmasked ones. And, unfortunately, an infusion today is probably much safer (in most parts of the US) than it will be in a few weeks.

It’s important to keep some perspective and think through the risks/harms and the benefits of each path. How bad is your health likely to be without Remicade? How risky is your infusion facility? Are other biologic medications still available to you if Remicade becomes unavailable, or have you failed on some?

Just had my infusion this past Friday. I was instructed by my GI that the risk/benefit analysis easily gravitates in favor of continuing with your scheduled Remicade infusion and not risking development of antibodies, as once that happens you are done with Remicade as a treatment. My infusion center adapted and has put patients in individual, private patient rooms, and only have 2 patients in the big infusion room at a time on opposite sides of the room.  I got my choice of 2 private individual rooms. They don't have much staff there outside of the individual Remicade nurse. So it was like getting it at home. My nurse wore gloves and a mask and took my temperature and blood pressure more than usual. My temperature ran consistently between 96.6 and 97.1 and my BP was also good, between 130 and 135 over 80 to 85 pretty consistently. 

You will be asked if you have any upper respiratory symptoms and your temperature taken when you walk in the door, and if you fail those tests your infusion will be delayed. I had viral pneumonia last year (April 2019), perhaps another one of the corona viruses, and they wouldn't infuse me until I was 14 days past symptoms. So it was delayed 21 days total but I am on a 6 week cycle so it wasn't too bad. I was not any worse for it except for the chronic dry cough which I still have.

To those of you who get infused in a gastroenterology office, they aren't doing colonoscopies and pouchscopies any more, so their only business now is infusions and they are adapting to provide patients with a safe infusion experience. Hence they only had a few admin people and the Remicade nurse. I overheard one girl calling patients and scheduling "televisits", which is where it's all headed now through various telehealth apps. 

Here in Connecticut, I was told that Yale's infusion center may be converted into another use due to Covid-19 and the facility at 800 Post Road in Guilford will become a massive infusion center servicing all of Connecticut. The Guilford facility is where I usually go anyway, and I am fortunate to live not too far away. 

Last edited by CTBarrister

Glad your infusion went well CT. I have my infusion on Monday. I was also advised by my GI it was best continue with my infusions (Inflectra, a biosimilar of Remicade). My thinking is that postponing would just have me going in at the height of the pandemic curve, along with risking relapse.

I have mine done in the infusion center at my medical center. It usually is packed, mostly with cancer patients. I hope they keep out visitors.

Jan

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