3rd Entyvio infusion, still symptomatic

Are you using any other meds? It’s pretty normal to not see much improvement this early. I was on prednisone when I started my infusions. I don’t recall precisely when I started tapering but it seems as if it was by the time my loading doses were done. I also used Uceris rectal foam and suppositories to help with symptoms.

When we say we find relief months in it means 3-4 months with entyvio. You’re only 6 weeks out yes? If you’re not using any rectal meds or steroids by all means add them in while giving time for entyvio to work.

I am in remission. I was in symptomatic remission by month 5 but complete remission (colonoscopy- confirmed absence of inflammation) took longer.

Good luck! If you have any other questions ask away!

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UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

Most patients don't have a response to Entyvio until after the 4th infusion.

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30 year old female
Ulcerative Pancolitis (w/ backwash ileitis)
Current meds: Entyvio, 20mg MTX injection weekly, Apriso, Canasa, B12 injections monthly, 50,000 IU Vit D weekly, iron infusions
-TPMT deficiency-
Failed Remicade

With entyvio the improvement was slow and steady for me. Early on in the infusion timeline I would have a little breakthrough in symptoms towards the end of the 8 weeks. But nothing like before. Maybe an increase in urgency and frequency and some cramping. But you’re right — it was like a roller coaster of symptoms — a bad day or two and then ok for awhile. As long as it’s not everyday for a while

Have you tried mesalamine suppository? I found those kind of soothing. Also Uceris foam wasn’t too hard to retain usually or irritating.

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UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

Are steroid foams available in the U.S.? Sorry to hijack your thread...

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35 years old; diagnosed UC March 2007 (prob. pancolitis; couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since Dec. 25, 2016 until I started smoking again May 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. 10-20 mg pred. Starting Remicade 7/25/19.

This is an encouraging thread. I am at 6 weeks/3rd infusion as well and have had no change in symptoms and no improvement in CRP. Hopefully it will start working soon.

Thank you!

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35 years old; diagnosed UC March 2007 (prob. pancolitis; couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since Dec. 25, 2016 until I started smoking again May 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. 10-20 mg pred. Starting Remicade 7/25/19.

I searched and found my old thread on Entyvio, and this is something I posted:

"I'm a little worried that I'm not in complete remission yet. It's been 3 1/2 months, but I know they say to give it 6 months for full effects, and on the whole, I'm really doing well. I've had a little bit of urgency when I have to have a BM, but nothing like before. Down to 1, maybe 2 BMs a day, but they're soft and a little loose sometimes. "

I was on prednisone when I started my infusions, but started a slow taper with the first one. I believe I finished the taper on my last loading dose, or around there. Also, there was a mistake in my original prescription order, so I had my third loading dose at 4 weeks instead of 6 ... so 3 infusions in 4 weeks (0, 2 weeks, 4 weeks). I don't know if that helped with my response rate.

I also used Uceris foam during the day and canasa every night until infusion 5 or 6.

Post Edited (FlowersGal) : 7/31/2019 5:51:14 PM (GMT-6)

Thank you again, FlowersGal and thanks for the good luck, valleyguy. I've had a rough past couple days. My rectum, like many others I assume, is the most problematic and stubborn part of this flare. I pass solid stools but do so many times a day rather than all in one go. It's simply too inflamed and weak to hold stool for very long. Of course, I do still have movements that are mostly mush, less formed stool. Admittedly, I've been slacking on the rectal medication even still. I have trouble retaining which I'm not convinced is entirely physical. Anxiety is back at full force and while I have Ativan to help calm myself, I'm very hesitant to use benzodiazepines. Benzos scare me just as much as biologics.

I'm trying to persevere. I think what hurts the most is that I was hoping for some relief with Entyvio and it's just more waiting. I did the waiting game with enemas, then prednisone, then doubling humira, etc. I also worry that my body will not keep up. I'll come around again with an update in a week or so.

But before the 4th infusion you did have improvements and the 4th brought you to complete remission? I'll give my specialist office a call and see what they have to say.

Could you elaborate, Happier? How was the progress? As you can tell by my quick replies I'm hovering the forums today as my mental state is in shambles. How does one wait nine months for medicine to work? I barely pass a day's time without getting frustrated at this situation.

I completely understand your anxiety! When I was my sickest I was a mess mentally too and crying at the drop of a pin and soooo worried. Ive had anxiety and want to tell you that it’s truly better to take the Ativan than to stay worked up. I’ve taken Xanax as needed for years. I’m very careful with it and take as little as possible. I usually cut my pills in half and they’re the lowest mg anyway. Anxiety feeds on itself and the longer you let it run unchecked the worse it can get. I usually found all I needed was to take the edge off for awhile and didn’t let myself depend on them.

If you are having trouble holding the enemas see if you can try the Canasa suppositories. Or steroid foams. You really sound as if you need some rescue butt meds to get you over the hump. Or prednisone.

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UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

Years ago on my first Las Vegas visit, the hotel had a once a week program whereby several tables would be set aside for amateurs or those who know little or nothing about gambling. Each contestant had a coach, either a pro gambler or someone very astute as to the game of poker, stand close and offer advice as to what moves to make. The game was seven card or stud poker. Cards were dealt after which I realized I had a mere pair of sevens.. Under my breath, i uttered the words that I wish I could be dealt another hand, after which my coach leaned down and whispered in my ear, "Son, poker is like life. You've got to play the hand your dealt." Best piece of advice I ever got.
Those of us who were dealt with this affliction have no choice, no re-deal.. We make the best of it and do whatever we can to make it better knowing there are others with worse hands.
My point is to reach out for whatever may come your way for relief and be patient. The best remedies take time. If you have started endyvio, well it does take time for a positive reaction if it does come at all. If not, there will be something else which may help but stay positive as hard as that may be. We won't get a new deal, but even with a bad hand, you may yet win a pot. Oh yes, I won the game with a pair of sevens..