How long will Remicade stay in one's system?

So I've been on Remicade for several months (solidly in that every 8 weeks window now), but it's not doing much as I go between 30 and 40mg of Prednisone to give some semblance of normalcy (10 times a day semi-solid no bleeding, manageable urgency)... So we did the blood test a month ago at the end of an 8 week period, there were 0 antibodies to Remicade, but there was also 0 Remicade in my system! So next week (it will be now just 6 weeks instead of the usual 8) we're going to double the Remicade dose to see what happens. I suspect there are many severe pancolitis individuals here like me that have not had much success with Remicade... true? If so, I suspect this won't do a darn thing except maybe give me a headache. So what biologic worked with you if anything? Entyvio? I think that is what I'll choose next. Doctor wants to try two 10/ml (I was 5 before) infusions of Remicade 6 weeks apart to see if that will allow me to taper the Prednisone. I'm losing so much muscle mass on Pred - I need to get off of it (also, anyone able to stave off the muscle decline with exercise successfully?) Thanks, I hang up and listen

Your doc is doing the right things by checking for antibodies and checking your trough levels, then adjusting frequency and dosing. Bumping up frequency and dosing is the right next step, so see how it goes.

You're burning through Remicade quickly, either because you're a fast metabolizer, or you're UC is using it all up, or your colon is leaking protein into the stool.

One question: Have you done many blood tests since you've started Remicade? If so, have they checked your serum albumin levels? Are they normal or low?

great feedback - thanks, all. beave - the blood tests I have have shown the "SED Rate and CRP Inflammatory markers are ok" <-- not sure what this means and, then the specific test for antibodies and levels for Remicade. Colon leaking protein... that's a good lead... are the SED Rate or CRP a measurement of this?

Also, thank you on the "street smarts" of an every 8 week regimen for severe pancolitis; I thought it was quite lengthy, but at 5 ml Remicade, I never saw 1 hint of change; it was always the Pred that made the difference... I have some hope for 10 ml and every 6 weeks, but honestly if I don't see something in the 3 days after the 10 ml dose, I'm going to be leaning towards Entyvio. Do y'all think I should give it 2 doses of 10 ml every 6 weeks before rushing to judgement? I soooo appreciate the UC street smart of this forum. sooo good. thanks everyone!

beave - ah makes total sense now. I have an appt with the GI doc 2 days after the new infusion regimen... I'll ask. Thank you!

I'd try the increased dosage for a couple infusions, it just might work. The test confirmed you do not have enough remicade in you, thus the flare and the pred. Some have had good luck with an increased dosage in regaining and sustaining a response!

Did remicade work at all for you? Not sure whether or not there was at least initially a positive response at all for you.

If remicade were to fail, then I would recommend going to another type of biologics with a different mechanism of action: entyvio (slow working) or xeljanz (fast working) are two examples that are approved for UC. There's stelara on clinical trial and off-label use for UC.

You can always add immunomodulators (azathioprine/imuran/6MP) to remicade to give it an added boost. Combination-therapy always produces the best results for us!

Remicade only improves symptoms in about 60-ish% of us. Try the higher dose and then quickly move to entyvio or xeljanz. With no initial improvement on remi, that certainly reduces the odds of luck with an increased dosage... not impossible but not high hopes either...

Any questions on prednisone dosing I would address to your doctor. If you've been on pred for more than 2-months then a very careful, gradual taper process is necessary. If you've only been on pred for a couple weeks time, then a fast taper is allowable. Taper too fast and you will suffer from withdrawal symptoms.

Classic withdrawal systems are fatigue and body aches. You generally only experience withdrawal symptoms when 12mgs or less of pred though! As you're weaning off of pred, your sleeping adrenal system has to wakeup and resume producing cortisol and make the deficit of pred and what's normal cortisol levels within your body. Withdrawal is those adrenals not awakening at all, or at least only partially doing their job but not producing enough cortisol to fill that deficit. Adrenals cortisol naturally regulate asleep and awake cycles (highest cortisol levels at wakeup, lowest at bedtime and overnight while sleeping; abnormally low = fatigue), and are mild pain relievers that take care of mild aches and pains (without cortisol or pred then you get generalized aches and pains).

Going from 40mgs of pred directly to zero can get you hospitalized with much more severe cardiovascular affects. So, never quit high dosages cold turkey; dangerous. We taper for a reason!

Post Edited (iPoop) : 10/1/2018 9:23:14 AM (GMT-6)

You've been on Pred since April, and therefore you're going to have to go at a turtle's pace once you get below 12-15mgs. Something along the lines of 40-mgs, 30-mgs, 20-mgs, 15-mgs, 12.5-mgs, 10-mgs, 7.5-mgs, 5.0-mgs, 2.5-mgs, to finally 0-mgs. Often when we've been on pred that long, we might even need 1-mg drops at the very end of it all (5-mgs, 4-mgs, 3-mgs, 2-mgs, 1-mgs, to finally 0-mgs).

Racing off of pred after being on it that long is a recipe for disaster, strong withdrawal, and likely an appointment with an Endocrinologist-specialist doctor (specializing in hormones to reawaken your adrenals and resume normal cortisol production) using your taper scheduled mentioned. What you said is fine for a short, 2-month course with pred. Once you're getting 5 or 6-months in, you gotta go waaaaaaay slower....

Post Edited (iPoop) : 10/1/2018 11:54:47 AM (GMT-6)

They don't call it the Devil's Tic Tacs for nothing ;-) Seriously though, do check with your doctor on the taper schedule. He/she should be telling you the right dosages, and giving you the right sized pills.