Covid and Inflectra infusions timing questions

So update. I can’t get my infusion until January 12 due to having to wait to recover from covid plus my doctors office is closed the first week of January. I’m stressing so much about this. Is this going mess everything up having to wait so long in between? I am having the antibody/drug level test done next Friday though.

Is there another facility where you can get your infusion?

I know my infusion orders give me a week leeway either way but I’ve never had to go longer. Only twice have I had a conflict with timing and both times I opted to go in early.

Sorry this is an issue! Sorry I don’t have any advice!

HaleyA,

Hopefully the antibody test results should be in before your next infusion. If it were me I would message for the results and ask if your GI wants to change the amount of your Remicade on January 12th. I would also ask if they wanted to shorten the timeframe so you can plan accordingly.

If you are still struggling I would suggest reaching out to ensure you have enough meds to get by on until January 12th.... And enough for alittle while after--just in case.

I also want to stress that you do not mess around on your timing unless you absolutely have to. I have only had mine changed because of surgery, a build up of Remicade in my system, or a lack of Remicade. An optimal amount of Remicade in your system is between 7 to 11.My GI prefers 10 to 11. Once I went into complete remission and my Remicade amount rose to 29 which is exceptionally high. No infusion for 12 weeks that time, and we dropped it down to 5 kg/mg every 9 weeks. Then we shortened the time frame to 8 weeks, then 6 weeks. When it stabilized at 6 weeks we left the time alone. Recently my body started to use more Remicade so we have raised the dosage to 7.5 kg,/mg every 6 weeks. My doctor checks my levels at least 4 times a year. The Prometheus test bills your insurance. If they do not pay then Prometheus has an assisted payment program based on your income. The max I have had to pay is 200 or 250., The minimum was 75.00. I haven't utilized another testing company so am unsure how that would go.

Good luck. Please let us know how it goes.

Clo

P. S. When I am stable he only checks levels once a year or so.

I think it took about a week for my doc to get the results, but not really sure.

My remicade levels were really high -- >34, 0 antibodies (well the test actually just says <3.1 for antibodies but that's the lowest level they report). I thought the doc would want to change my dosage or frequency but he was ok with it and said with my levels that high I don't have to worry about antibodies. The last test I had a year ago had my levels at 27 but I was still having minor symptoms until we went to every 4 weeks. I'm in remission now and don't want to mess with it. As long as it's not dangerous it can stay that high.

I had levels within therapeutic range - but not especially high - and no antibodies, and symptoms. Based on that, the hospital doubled my dose to 10mg/kg.
I also had to wait about a week for the blood results- i don't think that was necessarily because the test itself took a long time but because it's an uncommon test they had to send it off to another lab/hospital.

Hang in there.

Test results take about a week.

For me, I have had symptoms with high or low readings on Remicade or antibodies. It just depends on what is going on. The symptoms range from mild to awful. Heat intolerance caused by Crohn's is the pits. I walk outside when it's above 83 and start gagging, sweating, the world turns, I puke and then almost pass out. Not a pretty site. Lol... But Remicade makes them much better than they were. Remember--your journey will be easier and better than mine. My GI says I am .01 percent of 1 percent.

When I have antibodies we always pretreat with steroids and Benadryl prior to the infusion and then for 24 to 48 hours afterwards. Once the Remicade levels are back up and antibodies are down we stop post and pretreatment. If we don't pretreat during the infusion I start clearing my throat, then coughing..and that's when we know we need to use the premeds and stop the infusion for about 20 minutes. Most GIs do not ask you to take Benadryl post infusion. Mine just started after my last 2 infusions to be safe. Your Infusion team will recognize if you need to pretreat. They do this all the time....so no worries.

Let us know how it goes.
Clo

Post Edited (clo2014) : 12/22/2021 9:17:02 PM (GMT-7)