6MP + Remicade

How come you aren't able to just go on 6mp?  I was recently on 6mp and worked for me for 5 years but then my liver enzymes went up. Now my doctor is putting me on allopurinol with 6mp in order to get in a therapeutic range. If that doesn't work then my doctor will stop the 6mp and I'll go on remicade.

i started 6mp and remicade at the same time. however, i was also on canasa, 40 mg prednisone, cipro, flagyl, prilosec, and zofran. my doctor honestly didn't tell me to try one- he said i had to take everything at once for it to work. since it was my first flare, i really wasn't sure about anything so i just did what he said. looking back, i was TOTALLY overmedicating and wished i'd knew to give medications time to work.

after i tapered off the prednisone and antibiotics, i was just on 6mp and remicade. my liver enzymes were very high at 50 mg so i dropped down to 25 mg. the remicade completely stopped working when i did this. literally like an on and off switch. i think the 6mp was somehow making the remicade work. not sure. i started 6mp again by itself after going off of it for a while (liver enzymes still high at 25 mg) but the 25 mg dosage didn't do anything for my UC.

Unfortunately, if you have pancolitis, cortifoam isn't going to do a whole lot for you. Your doctor was being optimistic when he quoted 8 weeks for 6MP for you, it's often more like three months...

Copays vary wildly for Remicade. It was covered 100% with no copay for me because my insurance company considered the infusion to be medical, not pharmacy, but unfortunately for others it can be pretty expensive. I'd recommend just calling your insurance company and getting a human on the phone who can explain it to you.

Have you ever used prednisone? How severe are your symptoms now?

Oh, 6MP is covered for me, not worried. Just worried about the Remicade being covered, since that's what we'd rather I be on. I'm not thrilled about being on antibodies, but they're more specific than 6MP, which I find mildly terrifying.

I'm just wondering how much trouble people had with insurance taking care of Remicade. We're STILL waiting for my insurance (Aetna) to authorize it. And in the meantime, I got letters from RemiStart, and I was wondering if anyone else did when they were trying to start Remicade. This is happening pretty fast for me--I just had my first appointment with this new doctor last week, and I've already had a flex sig and a bunch of new medication!

I'm COMPLETELY aware that cortifoam isn't going to be a miracle cure for pancolitis. I just literally cannot get out of bed anymore because I'm so sick, and I refuse to take prednisone. We're counting on the foam to get me functioning enough to get to work while we wait on this stupid authorization from stupid Aetna.

Have you used cortifoam before? I'm really not trying to be a buzzkill I just think you should know that it's unlikely to make much difference for you in terms of day to day function. If you're willing to use rectal corticosteroids I'd suggest going straight to a hydrocortisone enema instead, if you can retain it you'll get much more relief from the enema than the foam.

Another option to try for short term relief if you won't take prednisone is an antibiotic like Flagyl or Cipro. I'd probably start with Cipro if I were you. Like you said, you need something to work now so you can get out of bed and get to work -- for most people that thing is prednisone, but if you're unwilling to take it, you've got to explore other options.

Pluot, do you think antibiotics would help? I'm not sure how that would work if I don't have an infection. Antibiotics also appear to be a trigger for my flares, so I'm very wary of them. I'll ask my doctor this week and see what he thinks.

I actually requested the foam instead of the retention enemas because I'm so sick, I can't retain enemas right now. So far, it's helped a little; this morning, I had two almost completely solid stools (for the past week, most of my BMs have been almost entirely liquid, not even just soft). I'm still dealing with fatigue, but that takes a while to go away.

Yeah, doc says it might take up to 8 weeks. It makes sense, given how 6MP works, since it'll take a long time before there's enough drug to mess with DNA synthesis. I'm glad my doc started me on them now. My last doctor (I'm on my 4th, for a variety of reasons) was concerned that I was getting sicker, but didn't seem concerned enough to, you know, do anything about it! If he had started me on 6MP back in December, when it was clear that mesalamine wasn't working well enough, it would have an effect already :(

ScienceGirl said...
Pluot, do you think antibiotics would help? I'm not sure how that would work if I don't have an infection.

lol, doctors don't really know how they work for IBD either. But they do. Cipro is a pretty powerful anti-inflammatory in its own right in addition to its antibacterial properties. Cipro, Flagyl, Xifaxan, and vancomycin are a few antibiotics that are known to improve IBD symptoms in a decent number of patients. I myself think my flares were triggered by azithromycin, but other antibiotics helped my symptoms tremendously. Anyway, as quincy says, I give advice, take it or leave it.

I'm on 6mp and I haven't really seen any trouble with it. I do have a little nausea the next day after taking it, usually around this time, but it is very slight. If I take it too late at night I am unable to sleep. Otherwise, everything has been fine for me with it. All of my bloodwork has been good so far.

I am on 100mg once per day. Started at 25, increased to 50, and finally to 100. I've been on 100 for about three weeks.

Been suuuuuper sick lately, beyond exhausted. Didn't sleep last night, even though I was exhausted because I kept having to get up to go to the bathroom.

Good news is that my insurance authorized Remicade; I'm starting next week!

I was wondering, has anyone gotten the side effects from 6MP before it starts helping? I'm not expecting to improve on 6MP for several more weeks, but I have mild to moderate nausea on a pretty regular basis over the past few days.

good luck with Remicade! To answer your question, I had the worst fatigue of my life while on 6MP, and the fatigue started almost immediately. I was a total zombie. So you can definitely get side effects before benefits.

Well, it's been 4 days since my very first dose of Remicade. I'm not sure if I'm experiencing side effects, or if this is just my body's healing process. But things are definitely happening.

The good: I was able to get up on Friday (about 36 hours after the infusion) on very little sleep, and get through the whole day, energy-wise. Urgency wasn't much better, but my BMs were much more productive, and between BMs, I wasn't spending as much time feeling sick and crampy. BMs were also more solid, although I'd still classify them as diarrhea/not normal.

Fewer BMs Saturday, and I was able to eat a bit without running to the bathroom immediately after a first bite of food. BMs weren't as great, but they weren't much worse. But I did notice that I wasn't waking up in the middle of the night to use the bathroom, and that I was able to tell the difference between gas and BM (it's been a YEAR since I've been able to tell the difference).

Today (Sunday), I'm still seeing the same improvements. I've had good days and bad days during this flare, but never three good days in a row. No blood, very little liquid, using less toilet paper, and almost all of my BMs are definitely solid (although still soft and not very big).

The bad: I am SO tired! I've been sleeping for 12 hours at a time, but then I'm still groggy. I've accidentally taken some naps, too.

I also, naturally, got a cold immediately after (went from almost nothing on Thursday night to definitely a cold today). Awesome. Good job there, me.

I always get super, super fatigued before I get better, so I'm unsure if this is a side effect or a sign of improvement. When I was just taking Asacol HD, I'd get mostly better, and then the mesalamine enemas would make me super better within a couple weeks--during the last week, I'd be even more fatigued than I'd been while sick. Given how much I've improved in 4 days, I wouldn't be surprised if this was a healing fatigue. But I also wouldn't be surprised if it was a side effect.