Update: Remicade, TB, and Home Infusion

Hi! I haven't been here in a while. At first because I was just waiting and waiting for things to happen. And then partly because I am/was doing a lot better.

Recap: Decided with my doctor to start Remicade because of persistent, mild, inflammation. But I failed by TB test. After waiting a month to see the infectious disease specialist, we did another test and it came back positive again (though just barely). Unfortunately, my travel history gave the doctor enough reason to believe that the result might be real, so he decided to treat the latent TB. He prescribed Rifampin for 4 months, but I was able to start Remicade after 1 month of treatment. I can not wait to be off the Rifampin. First, you are supposed to take it on an empty stomach (i.e. 1 hour before you eat or 2 hours after), but I've mostly given up on that, since I'd just forget to take it. It also interacts with birth control pills so they are less effective. And it can cause liver problems, so you aren't supposed to drink on it or at least not a first when they are checking your liver enzyme levels.

Finally, after 2 months of waiting, I was able to start Remicade. For insurance reasons, I was only able to have my first two infusions at the apheresis center at the hospital (it would have been the first three, but there was a weird timing issue. My insurance company would only cover the hospital infusions for a 45 day window from the time of approval, not from my first infusion, which seems silly but whatever).

The Remicade has been great - for a while. But the closer I get to my next infusion, the worse I feel. I just had my third infusion today, 4 weeks from my last infusion, and I felt like I might be in the beginnings of a flare the past few days. Though admittedly, I was pretty bad about continuing the Rowasa, since I had been feeling so good. But I've learned that lesson now. My next infusion is in 8 weeks, and I'm a little nervous that I won't last that long, but we'll see.

For this infusion, since I couldn't have it done in the hospital, and I can't get to one of the outpatient facilities b/c I don't have a car, I had it done through Home Infusion. It was super easy. My big box of supplies was dropped off last night. It had the remicade, which I put in the fridge upon arrival, and it also had all of the supplies the nurse would need for the infusion like the pump, needles, gloves, sharps container, blood test tubes, and anaphylaxis medications just in case. I'll hold on to all that stuff and next time they will just deliver the Remicade and maybe more blood test tubes. The nurse arrived this morning and gave me my infusions. She took my vitals a few times throughout the process and that was about it. She was very nice.

I was a little nervous beforehand, because it was my first time doing home infusion and I didn't hear anything from anyone (the nurse or driver) until the evening on the day before. But everything worked out.

I'll definitely be doing home infusion from now on. At least until my situation changes (I move or get a car), but even then I'll probably keep doing it.

I sent a message to my GI the other day letting her know that I get a lot worse farther out from my infusions and asked if we'd consider changing the dose/frequency. So I'll see what she says. She also order a trough test last time I saw were. I'm supposed to do that right before my 4th infusion to check the levels of the drug and check for antibodies.

I am on Inflectra (Remicade biosimilar) and just had my fourth infusion today. They started me on 10mg/kg because my I seem to have a pretty strong immune system, but I am 99% sure I am going to go down to every 6 weeks based on symptoms. The Pharm.D. assigned to me said it's not uncommon and we can move to every 4 weeks if necessary. Did a level/antibody blood draw yesterday, so we shall see.

I too had a diagnosis of latent TB before starting Entyvio. I just finished a year of izinosid Tb meds. Was able to start the Entyvio after a month on the meds.

Faith