Upping dose/frequency of Remicade

Hi, folks--been a while since I updated.

Things have been so-so since my last Remicade loading dose four weeks ago. I was doing great for a while, but the past couple of weeks, I've started to backslide. I'm back to 10+ BMs a day, mucous and often blood, less solid stool, bad urgency and cramping, and so on. Very miserable.

I saw my GI today, and we decided to increase my 6MP from 50mg to 75mg per day. We're also doubling my Remicade dose (from 5mg/kg to 10mg/kg, or whatever the units are) and doing infusions every 6 weeks instead of every 8. Honestly, I haven't had any side effects, and if my seasonal allergies are any indication, I am not very immunosuppressed!

He also gave me some samples of Align. Has anyone tried that (probiotic)? I can't take VSL#3 because it's too expensive and also super gross (didn't dissolve in my beverage, made beverage smell/taste like garbage), so I haven't tried probiotics since then.

I'd love to hear from anyone who's tried Align, or who's had their Remi dose/frequency increased after not seeing enough results.

I recently increased the frequency of Remicade from 8 weeks to 6 weeks (still at 5mg/kg).  I noticed gradual improvement with remicade over time.  After my loading phase, I would notice symptoms come back at week 5-6.  My dr  shortened the interval to every 6 weeks after 4-5 months.  It took about two 6 week doses for me to say that things are good.  I have not seen mucous or blood since shortening the interval. 

I was not one of those people who saw drastic improvement right away.  For me, a little patience was also needed.

 

There are many different kinds of probiotics. For most UC'rs it is necessary to take extremely high dose probiotics, such as VSL. Even though Align is a fine probiotic it is like a grain of salt in a haystack. By the time you take the dose needed, you would be paying more than the VSL. It doesn't hurt to try though. By the way, I take VSL capsules because I really don't see why people would want to take that powdery stuff where it is very difficult to adjust dosages and many complain of the taste. I can see if you have to because insurance is covering it but I definitely prefer the capsules.

I was doubled to 10 mg/kg after my first infusion. My GI has patients who receive as much as 20 mg/kg. 10 mg/kg is very common. You might consider asking for an infliximab levels blood test first -- this will identify the actual levels of infliximab in your bloodstream and can help your GI determine if the issue with Remicade is because you aren't getting enough into you (vs. simply not having a full response to a therapeutic dose). Insurance has a tendency not to cover the test though so you might want to call and confirm before it's ordered.

I took Align for a long time before I was diagnosed... so... my experience with that particular probiotic is that it doesn't do much of anything. But probiotics are such an individual thing, I think you have to just try it and see.

My dose was upped and increased to every six weeks after the AnserIFX test. It is the only one for Remicade levels and antibodies. It is $250 if your insurance doesn't cover it. Mine did.

I'm taking 7.5 mg/kg now, and we have room to go up more if necessary.

Remicade at 5 mg/kg didn't do anything at all.

Thanks, folks. I do think that probiotics won't really do much for me. It's not that I think they're completely bunk, just that when you're super sick, it's like gary said--not very helpful!

I'm worried that my insurance company will resist covering the higher and more frequent dosage, although I doubt they have any grounds to refuse coverage. However, I would be SHOCKED if they covered the antibody level test. I hate insurance companies so hard.

Very anxious about having to wait another two weeks for my next infusion. Getting sicker every day, just like before. I don't think the 6MP is doing anything.