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Uc symptoms returning a week before remi infusion

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Posted 4/21/2014 1:34 PM (GMT 0)
My next remi infusion is tomorrow (4/22) and for the last week I've noticed my UC symptoms slowly returning (more blood in poop, more urgency, and the dreaded gotta wake up in the middle of the night to take a poop). Everything has been solid and formed without mucus though. So, I got a little scared of a relapse/flare and I've been taking 5mg of pred, once a day, for the last 3 days; which seems to have cleared it up just fine; improving. I plan on discontinuing the pred cold turkey after my infusion tomorrow (only been a few days on it).

Does this mean that I now need more than 5mg per KG of remi (e.g., 10mg per KG)? Or that I need to have infusions more frequently than every 8 weeks? I've been on Remicade since Sept 2013 (about 6-7 months). I've read that about 30% of people on Remicade eventually need to do this. Either that or maybe increasing my 6mp from 75mgs to 100mgs (which would be my max)? Or should I just shut up and deal with the symptoms, use endocort, pred, or something briefly and not complain about it lol? I'll see my GI in early May so I'll query him then. Wanted to see what you all have to say about this 1st.
Posted 4/21/2014 1:50 PM (GMT 0)
nah, just eat more chocolate poop man turn
Posted 4/21/2014 1:55 PM (GMT 0)
Lol soy man, the chocolate helps cheer me up and gives me a sugar buzz but that's it.
Posted 4/21/2014 2:37 PM (GMT 0)
iPoop. I have followed your progress over the last year and I wonder...do you think that the Lialda and 6mp help?

I know you have not been able to get remission. Have you ever thought that maybe you could switch those 2 drugs or drop them now that you are on Remicade? Is Lialda the only 5-asa that you have tried? What if you are having an adverse reaction to it slightly and its hurting more than helping? I say this because I had tried a couple and felt different on each one. I'm sensitive to the other ingredients in the pills.

Maybe you could discuss with your doctor trying 5mg of Remi every 6 weeks with Rowasa and dropping the other 2. Shouldn't Remi be enough to keep you stable so you can see if the other 2 drugs were hurting or helping? Or take it slow and drop one at a time.

I see in your sig about supplements not helping but I would highly suggest a probiotic. Regardless of UC they are really good for your immune system and gut. I really like VSL #3 DS and maybe your insurance will cover it like mine does.
Posted 4/21/2014 2:56 PM (GMT 0)
TotesMagotes said...
iPoop. I have followed your progress over the last year and I wonder...do you think that the Lialda and 6mp help? 4 pills of Lialda and nightly Rowasa was enough for my 1st year of UC; kept me in a quazi-remission-state but I eventually flared up. 6mp was added during the flare but was not enough to pull me out of it, even with the assistance of pred. So, I added remi in Sept. No idea whether 6mp works, all I know is it couldn't pull me out of the flareup. I just take it as it makes me less likely to develop antibodies to remicade.

I know you have not been able to get remission. Have you ever thought that maybe you could switch those 2 drugs or drop them now that you are on Remicade? My GI has discussed this as a possibility, if I am well healed on remicade then start tapering off some of those meds or at least lower the dosage. However, it is all dependent on the results of a scope which is in May. I got to be healed enough to warrant dropping dosages or drugs (aka remission I assume). Is Lialda the only 5-asa that you have tried? No, I initially started on Asacol HD then later switched to Lialda. What if you are having an adverse reaction to it slightly and its hurting more than helping? I say this because I had tried a couple and felt different on each one. I'm sensitive to the other ingredients in the pills. Not sure I'd suddenly have a reaction to these, as I understand allergic reactions are immediate not something that happens years later.

Maybe you could discuss with your doctor trying 5mg of Remi every 6 weeks with Rowasa and dropping the other 2. Plan on asking about it in May. Shouldn't Remi be enough to keep you stable so you can see if the other 2 drugs were hurting or helping? Theoretically but I have some aggressive uc that doesn't play by the rules it seems. Or take it slow and drop one at a time.

I see in your sig about supplements not helping but I would highly suggest a probiotic. Regardless of UC they are really good for your immune system and gut. I really like VSL #3 DS and maybe your insurance will cover it like mine does. I tried VSL DS #3 for two months with no change in symptoms. When my insurance at work switched to Antem BCBS, VSL suddenly became about $130 a month with the new policy so I dropped VSL like a hot potato.

Posted 4/21/2014 10:57 PM (GMT 0)
I have been on 75 mg 6mp since April 2013 and it alone plus then trying Uceris and Entocort wasn't enough to pull me out of my flare at the time (I didn't wanna do Pred again, I hate it). So in July 2013 I started Remicade, the normal dose every 8 weeks. That wasn't working for me and I had the same problem where I would get symptoms about 2 weeks before my next dose. My doctor then started me on a double dose of 10mg per KG. I still wasn't feeling well so my doctor moved my infusions to every 6 weeks. It took a few infusions of the double dose at 6 weeks for me to finally not have symptoms before the infusions (this last dose I had this past monday was the first time I had felt okay all the way up until my infusion).

Before the flare that caused me to start 6mp and then the Remi, I had been controlled by Lialda my first year diagnosed and then Pred once to pull me out of a flare. I would talk to your doctor about upping your dosage or moving it to every 6 weeks. My Gi told me that eventually he would move my treatments back to every 8 weeks or lower my dosage when I started feeling better for a longer period of time.
He also told me the same thing about taking 6mp and Remi at the same time can help with not building anti-bodies and he said personally he has had a higher success rate with his patients when they take both (who knows), but I'm feeling better than I have in 2 years.

Hopefully you start to feel better!
Posted 4/22/2014 12:28 AM (GMT 0)
I had that problem as well so since my insurance wouldn't cover a dosage increase, I stopped in cold turkey. I am aware of the antibody possibility but so far, I am peachy and in "remission". I take Uceris, Asacol and enemas on top of my sig.
Posted 4/22/2014 4:27 PM (GMT 0)
You might want to get your Remi levels checked right before your next infusion. This can judge whether you have adequate levels in your system or if you are metabolizing it faster than you used to. Sometimes that happens. The Promethius test isn't always covered by insurance, so check. Increasing the Remi dose or bringing it closer to 6 weeks can help alot. Dual therapy is also effective, but mostly for the antibody build up risk as I understand it.
Posted 4/23/2014 1:31 AM (GMT 0)
I had my infusion this afternoon. The infusion nurse made an appointment for me to have a GI consultation tomorrow morning (funny how people complain it's hard to see their GI; move to New England as the GIs here are amazing). Thanks for the ideas I'll ask a few things. Funny the nurse said something about he wanted my remi levels checked thru Prometheus, but of course I already had the IV in my vain (so not going to happen) lol, so interesting katmom.
Posted 4/23/2014 6:01 PM (GMT 0)
this has happened to me before.sounds like "breakthrough symptoms" they may need to up your dose or bring it in to 6 week intervals.
Posted 4/23/2014 7:27 PM (GMT 0)
I had to have infusions every 6 weeks. 8 didn't work.
Posted 4/23/2014 7:50 PM (GMT 0)
Update, I saw my GI this morning.

He gave me a Prometheus labs kit, form for this test from them specifically http://www.anserifx.com/ and he said to have my blood drawn a few days before my next infusion which is in June, 8 weeks out. He wants to check my remicade levels in my blood a few days before the next infusion. Have the wizards at Prometheus labs in CA run the numbers and see if I am, in fact too low in remicade in my system before the next infusion.

He said he wasn't all that concerned about me seeing a little blood only on my tp, the week before the infusion. As it wasn't a lot of blood in the toilet. He was more concerned about me having to wake up in the middle of the night to poop. He was glad the 5mgs of pred took care of the symptom degradation, not a lot of pred really.

I have a scope in a couple weeks and he wants to see what that, and the Prometheus labs results are before changing anything around. So, I guess wait for now and stay the course.
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