Entyvio Stalled?

I started Entyvio in July. During my loading dosages, I saw improvement. Down to 3-5 BMs a day and typically none were diarrhea. Most BMs were often nothing but air and mucus. Bleeding was also down, it was still there, but not nearly as much as when the flare started.

fast forward to the last week or so, i just had an infusion, my 5th one since I started in July. things have kind of stalled if not deteriorated slightly. BMs are typically 6-7 per day, again, not diarrehea and often nothing besides air and mucus. bleeding is probably a little worse, but not noticeably. the stomach pain and discomfort is what has really picked up. typically, i'd have a BM and the urge and pain would go away for a while before my next BM. now, I try to go, nothing happens, and the pain and discomfort comes back minutes later. it is a feeling where i know i dont need to use the bathroom, but that could change relatively quickly. so it's really just a discomfort that isnt solved by going to the bathroom. the urgency has continued to stick around, it isnt much better/worse.

my thought: could it be that the inflammation on my colon has started to subside, hence the reduction in symptoms such as diarrhea, but my rectal area remains inflammed?

Not sure what is causing this stalling considering i was feeling better. i had started drinking ginger juice nightly, typically 50ml-100ml depending on the day. i have stopped that to see if it makes a difference.

any Entyvio users experience consistent progress and then a sort of relapse?

I am not on any other medications besides Entyvio. I have voiced this concern with my GI, but he maintains he wants to see if the Entyvio would work by itself. I do it the standard 8 weeks and dosage (cannot remember what amount). We havent talked about moving it up, but I think we will for my next appointment because I start to notice a decline around Week 7.

My main concern would be that entyvio is primarily focused on fighting inflammation in the colon. if i do have inflammation in the rectal area, would that really be effective? I could be wrong about Entyvio, but i thought it was for the colon inflammation.

thanks, i would tend to agree additional medication is probably necessary.

For these enemas and suppositories, are they maintenance treatments where I'd be doing them daily even while in remission or do people tend to come off of them as the inflammation goes away?

Are there oral medications that are an option instead of the enemas and suppositories that do the same thing as they would, just taken orally? I have had some trouble with enemas and suppositories during procedures prep, etc.

Post Edited (UCer23) : 12/14/2017 9:16:29 AM (GMT-7)

Gotcha, that makes sense.

Would me failing Lialda earlier last year impact whether I could take something like mesalamine? Lialda worked great for like 4 months and then failed.

totally agree with ipoop! He gives great advice. I'll just add about my entyvio experience. I was on prednisone when I started my infusions. I started to taper once I started and was able to continue a 10 mg taper a week. Once I finished the pred I was having some occasional mild symptoms closer to the next dosing date so we added in canasa at night and uceris foam during the day and those did the trick. I just had infusion #7 a week ago and haven't used uceris for a couple months. I had also quit the canasa but just recently added it back in because while my colonoscopy showed no visual inflammation the biopsies showed an area of active colitis. Basically I am symptom free now

UCer23 said...
For Lialda, I used it for a few months and was in remission before ultimately entering this flare. So Lialda doesn't fail per say? it just isnt effective at that level that the flare was at, but combined with something, could help me get over the hump?

Correct. Lialda always creates an anti-inflammatory affect on our bodies but is only so powerful. Beyond a point of inflammation severity, lialda alone isn't enough to control our UC symptoms. Lialda can be part of a combonation therapy that gives a remission.

UCer23 said...
this compared to Humira where I never saw one day of relief? that means it actually failed or its like the Lialda, just on a much bigger scale of it not being effective versus this flare?

Unlike Lialda that always have an affect, biologics can be blocked or circumvented by our immune system. Biologics are proteins designed to interfere with a specific step in how our immune system requests, responds, or completes an attack. A biologic only works when it successfully blocks that step in the immune attack cycle. Humira targets the signaling portion of the immune response, effectively muting the immune battle cry to send an attack. If your immune system develops antibodies to Humira then, yes, you've failed it as humira is now blocked and no longer does anything at all. Humira itself has now been blocked and no longer has any affect within your body. Tnf-alpha is only one signaling mechanism our immune systems can use to rally a battle-cry, our immune system can circumvent humira by using a different protein, and Humira is failed.

Can humira only be 60% effective? Sure. Some people clear humira from their blood at a very fast rate. Sometimes the battle cry is so loud and pervasive that humira can only block a portion of that cry, muffling but not stopping it entirely. Humira can be part of a combination therapy that gives a full remission. You have't failed humira, rather it is just part of a larger solution. For example, humira muffles the battle cry, imuran/6mp greatly reduces the amount of WBC's your body can create for the attack, and Lialda removes any inflammation caused by the WBCs that do successfully attack. (Dramatic simplifications of rather complex processes, but gets the point across).

Post Edited (iPoop) : 12/19/2017 9:25:13 AM (GMT-7)