Inflectra Levels & Antibodies

Hi all,

I recently had my infliximab levels tested and they were below range and I'm on the low (albeit very low) range in antibody level as well. I'm on max dose every 8 weeks. I just stopped Imuran in January after being on it for 3 years. They now want to do max dose every 4 weeks and put me back on Imuran at 100mg. With all that said, I've been in remission and doing fine for 2+ years. They said it's only a matter of time before a flare would start and I could lose ability to use this medicine.

I'm hesitant. It feels aggressive. To double the max dose and put me back on Imuran. She said antibodies this low are reversible if we follow that plan of care. And it's not permanent meaning I could end up spacing out infusions down the road and maybe come off Imuran again as well.

Anyways, just looking for some thoughts or if people have been in similar situations. It's frustrating because I feel fine. But on the flip side, I know if I don't go along with this and a big flare starts, I'm going to be kicking myself.

Thanks,
D

This is a hard one. I have inflectra infusions every 8 weeks and I’m excited to be in remission. Still having chronic fatigue Though, and not sure how the infusions may or may not contribute to this. I hope you find the reassurance you need. I think for me, if I felt healthy and trusted my doctor (both no’s for me atm) I would do it.

Thanks for all these responses. I have had inflix levels tested before, and they were only once in non-therapeutic so we upped the dosage. As for Imuran levels, they have always been below therapeutic level, even at 175mg. My GI said that my low levels are fine and will help to boost Inflectra levels and keep me from developing (even more) antibodies. I spoke with my old GI and she also believes this is a good tactic in being proactive. Better to get me back to a safe place, then slowly decrease medicines, than to do nothing and risk a potential flare. This disease is always about cost/benefit and making informed decisions, which I hope I'm doing.

Been miserable for about a month.
I was on Xeljanz 10 mg morning and night from 7/3/21 to 9/25/21
Initially it did ok. I would have a solid poop in the morning, then 2 soft loose stools or some diarrhea in the afternoons and or evenings.
I think I remember it worked fast. I got there within three or four days.

Late August it started to go down hill, then…started flaring.

I’m currently in a prednisone taper, that’s all I am taking, I’m in the 20 mg for 10 days phase.
Still miserable. Pretty much a month of flaring. Cramping is the worst.

Yesterday I did an all liquid diet. Just protein shakes, ensure, plain vanilla ice cream, bone broth, electrolyte drinks, etc.
Going to stay with that today and tomorrow. I think it may have helped a little. Though I am amazed I am still having brown diarrhea when I am not eating any solid foods. Probably 6 to 8 times a day including in the night. That’s crazy to me.

Saw GI Monday. He urgently pushed through an order for me to get on Inflectra.
So thankful he sped this up. The clinic called me yesterday and did a phone interview.
Initially I was bummed, Because when I left the office Monday the insurance lady there said it would probably be three weeks before I could start that treatment. She said Cigna moves slow.

I did exceedingly well on Humira from the fall of 2016 to the spring of 2020.
He thinks Inflectra is going to work great for me.

His office called yesterday. I need to go into the lab this morning and get some blood work done. The nurse left me a voicemail and said the clinic won’t start your Inflectra until you get initial blood work done.

Anyone know what they will be checking and why? Just curious.

Post Edited (Rusty Barr) : 9/29/2021 6:40:18 AM (GMT-6)

HaleyA said...
Hey Rusty, I recently started Inflectra and had to have blood work done before it. They tested me for tuberculosis and made sure I had hepatitis antibodies. They said these were standard tests I had to do before starting.

Thanks. Yup. Just left. They said the blood work was for Hepatitis B and TB