Increasing Inflectra dose

CCinPA said...
Getting those levels checked will definitely help make a decision. It doesn't sound good that you seem to be getting worse instead of better. Going back on budenoside should help with symptoms. Stay on it for at least 8 weeks (that's the standard length of time for Uceris -- I would imagine the generic is the same). It gives the colon a chance to heal. The first time I was on Uceris I was pretty much back to normal before 4 weeks but doc told me to stay on the full 8 weeks. 2nd time it didn't work as well and I was on it for several months until Entyvio kicked in.

Thanks. The 9 mg each morning of budesonide is definitely helping. Much less times …that feeling each day “I might want to go”. Yesterday I went 4 times instead of the 6 or 7 times a day I was averaging a day before the budesonide.
I’ll do the 8 week course of 9 mg. I think you’re right. My colon hasn’t really healed in a long time.

Yes, give it 2 weeks to fully kick in.

straydog said...
I may be wrong, but while on Humira didn't you get pneumonia & your gi took you off of Humira for a bit & you decided to go medication free for about 8 months? You then flared & tried Humira again & found you had developed antibodies?

If this was you, I am thinking your disease activity is worse than you realize. Now that you've been given an increase it's going to take time for things to heal.

It sux no doubt, but hang in there.

Yes. That’s me. Thanks.

Yeah one of my gripes against old GI. When I went to see him after I got over the pneumonia …I asked him if I could just stay off Humira because I had been in remission for so long. He said, “I don’t recommend that, but, yes, there are people who stay in remission on just diet”. So, I told him let’s give it a try. Then 8 months later I started to have troubles and I went back on Humira and it wasn’t working. We discovered the antibodies to Humira. Argh.
Now I can’t pin it completely on him, but I’m thinking had he told me up front about the possibilities of antibodies to Humira occurring if I stay off it…and that it might never work again for me? I might have opted to go right back on it.
We will never know. Not sure what I would have done. But I would have liked that explained to me on the front side. So, the whole antibody thing took me completely off guard. And I haven’t had a long stretch of remission since.

Anyway…

So, you think I need two or three rounds of the higher dose 10 mg of Inflectra every six weeks, plus the budesonide 9 mg for 9 weeks, then things will heal?

Post Edited (Rusty Barr) : 8/7/2022 11:40:40 AM (GMT-7)

I agree with poopyd!

Isn’t there anecdotal stories that if you develop antibodies to humira then you might also to remicade/inflectra (or vice versa) because they’re somewhat related medications? Or am I dreaming that?

I had antibodies to Humira, but not Remicade. They are both TNF blockers, but have different proteins in them so just because 1 is a problems doesn't necessarily mean that both will be.

How are you doing, Rusty? You are about halfway through your 6 week cycle and have been on budenisode for a couple weeks now. Are things any better?

Thanks. I’ve got an appointment tomorrow with new GI.

Took about two weeks for the budesonide to kick in. Taking 9 mg each morning. I’m going 4 or 5 times a day of late. Usually brown chunky mush. Sometimes stools. Not great. But better than 7 or 8. Which is what was happening before the budesonide, when I was just on the 10 mg of Inflectra alone.

I’ll ask him tomorrow for blood work. To check Inflectra levels in my blood and antibodies. I’m two weeks away from my next infusion. Not sure if I should get the blood work done asap, to see if antibodies now, then why do another infusion, right? Start talking about a new drug?

Or …do I wait until the day before my next infusion to check my blood? My concern with that is, if I get the blood test right before the next infusion, then my blood work comes back after the infusion, and shows high antibodies before that infusion, That infusion was a waste of time. Right? I know some have said it might take two or three cycles of the 10 mg dose for the Inflectra to really work well.

Post Edited (Rusty Barr) : 8/15/2022 8:12:55 AM (GMT-7)

It sounds as if you are in a better place regarding urgency. No pain or mucus? Personally I'd keep everything as is and keep communicating with your new GI.

Yes, you get the levels checked right before your next infusion...unless your doctor wants to do it alittle sooner. And no it's not a total waste to get the levels checked right before. It gives the amount left in your bloodstream and let's you know what you need to change. Remember, with a good GI they can get your amounts and timeframe changed in the next 6 weeks and that might help you reach remission. Your doctor can also add other meds to help you in the interim. My insurance refused to decrease time-frames unless the trough level check was completed right before my infusion. It was a part of their "standard of care" process.

My doctor has done the antibody test at different times. He explained his reasoning....When he was considering changing the time frame and moving the infusion up 2 weeks we did the test at the timeframe of when he would want the new infusion to take place. Example... I was having infusions at 8 weeks and started to struggle at 5. He then did a test at 6 weeks to see where I was on trough level and antibodies. If my trough level was ok and I didn't have antibodies it would indicate it wasn't working for me at that time for many different reasons...and we would do more tests. If trough level was low and there were antibodies we decreased timeframe between infusions and we added methotrexate back in to lower the antibodies so the Remicade levels would rise. (For me-methotrexate lowers my antibodies and makes it so I don't burn thru Remicade as fast which ultimately causes my levels to rise even more over the next 2 or 3 infusions)

When I was stable and getting better - we would lower the amounts and extend the timeframe. He would have me extend the next infusion by 2 weeks and do a trough level right before the infusion to see what my levels were. We would do another test right before the infusion about 3 months later to ensure my trough levels remained over 5. (Minimum trough level to sustain)

When we thought my levels were too high he checked it right in the middle of the infusions and then before the next infusion.

So there are times when you might not get the test right before BUT usually that is how it should work.

These tests are so expensive. Thankfully I had really good insurance and they paid for most of them. Prometheus also had a program where if payment was denied by your insurance they would allow you to apply to their program for relief. At that time the price could be reduced based on income. The lowest was 75.00 per test and it went up from there to 275? I think. It's been awhile. So I'd research those costs with the different labs/insurances and see what works best for you.

It sounds like you are in a much better place though and that your new doctor is proactive.

Please let us know how it goes.

Clo

Post Edited (clo2014) : 8/15/2022 9:07:37 AM (GMT-7)

Hi Rusty ... as others have said -- you need to get the test right before your infusion. I believe you said you had IBS before developing UC. What were your symptoms then? Inflectra, or any med, can get you back to pre-UC, but I doubt that it will do anything for IBS.

Good luck at your appt. I wouldn't say we know more than docs, but we only have 1 patient and 1 disease (our own) to worry about so we can be much more focused than doctors who have hundreds of patients with multitudes of diseases. We are like our own specialists. I know I have gained a LOT of knowledge from ideas discussed on this forum.

Thanks.
So. Saw new GI this afternoon. He wants to keep me on the 9 mg each morning of the budesonide until further notice. And he wants me to get Inflectra 10 mg every 6 week, dose number 2, …then, …we will do trough and antibody test right before Inflectra 10 mg dose number 3.
He thinks it’s best to give the Inflectra at 10 mg at least 2 cycles before doing trough/antibody test.

He also said something about trying “immaran” on top of the Inflectra, down the road…that that’s an option.

Hey Rusty,

I'm sorry your son and your family had to go thru that. I am very glad he is in remission.

Stress is such a foe. It's one of those things you usually think you have a handle on... Until suddenly you don't.

Your GI is probably hoping that if you start to build up your trough level to approximately 10 you won't develop antibodies and you won't have to be on another medication in addition to.

As far as the test timing, it looks like he is trying to wait and see. If that's the approach he's taking it'll probably sorta frustrate you... But my GI is always telling me he follows the norm and patterns, he can tell when a patient is in a "danger zone" and he knows when to implement stronger measures. (sigh .. I really have a problem with that wait and see. I'm sorta a take charge person so..... I can't give you alot of good advice on this.) So I am sure that you are ok and that he'll time the test correctly.

This GI sounds much better than your old one. I think you'll be ok to stay your course and to have the tests on his timeline.

I'm crossing my fingers and hoping for the best for you and your family!

Ttyl.
Clo

Rusty, strictly a guess on my part but my thinking is your dr is wanting to wait to see if there is a change in your response. He's given you some options, there is also the possibility of adding Imuran, at least he doesn't have his head in the sand. My gi puts his patients on it if they are on Remicade or Humira, he indicates it can help enhance the effects of the drugs & helps potentially decrease developing antibodies.

I agree with you about younger drs. I ditched my cardiologist & pulmonary drs. I was seeing older ones & they were stuck in the 90's & had no interest in learning anything new beyond that.

Patience, patience, patience, easier said than done.