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3rd Entyvio infusion, still symptomatic

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Ulcerative Colitis
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 7/28/2019 4:41 AM (GMT -7)
Had my third Entyvio infusion last Thursday and I haven't gotten the results I was hoping for. I'm scared that since this infusion didn't improve my symptoms that I'll have to try something else. I've read of people stating they found relief months after starting Entyvio. I'd like to know if anyone that had a late response to Entyvio on this forum can give me some hope. Do I tough it out and simply wait? I've been on Remicade and Humira already.

If it helps knowing symptoms are the usual diarrhea, urgency, gas, etc. Blood comes when I strain or as streaks on stool. There's been no consistency in symptoms, some days are more tolerable however those days are often followed by a bad day. I'm hoping someone with experience being on Entyvio can give me their personal account on how the medicine worked for them.

Thanks.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 623
Posted 7/28/2019 10:56 AM (GMT -7)
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!
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!
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 7/28/2019 9:35 PM (GMT -7)
Currently, I also take Asacol. I finished my prednisone taper last week just before the day of the infusion. You're right, I am at the sixth week mark. I guess I can give rectal medication another shot. I stopped a little while back because I developed painful hemorrhoids and it was exceedingly frustrating trying to retain anything.

I was talking to my dad today about my feelings on Entyvio. I used to inject Humira weekly so I always felt like I had some medication in me. I get a bit restless thinking about the long periods between infusions. It's like I don't know what to do with myself until I get better. Eight weeks is a long time and it feels a lot longer when flaring. I'd like to know if the relief came on gradually or did you still have those days of increased symptoms among the better days getting into remission.

Thanks again!
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noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 335
Posted 7/29/2019 7:23 AM (GMT -7)
Most patients don't have a response to Entyvio until after the 4th infusion.
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
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 15505
Posted 7/29/2019 8:11 AM (GMT -7)
Entyvio take a long while to work for some, I would not loose hope before 12-14 weeks in. Remicade/humira are much, much faster in response and if that's what you are measuring against then I understand the frustration!

There's still xlejanz to try, and that has a similar, fast response like remicade/humira do.
Moderator Ulcerative Colitis
John
, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, and rowasa

They say "Always trust your gut." Have you met my gut? No way I'm trusting that masochistic, jerk!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 623
Posted 7/29/2019 9:09 AM (GMT -7)
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.
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!
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 7/29/2019 3:30 PM (GMT -7)
I used the suppositories and the enemas. I think the enemas caused more symptoms maybe it was just the amount of fluid causing problems. I used to get some relief with steroid foams but I stopped them alongside other rectal medication when my butt didn't want to cooperate. I can give them another round.

What were your symptoms like before you got the first maintenance infusion? Within weeks six and 14, was there considerable improvement or only a little? I've been flaring since February so I'm desperately looking forward to some relief. Thank you so much for the help and thanks to the two before you.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 5513
Posted 7/29/2019 7:35 PM (GMT -7)
Are steroid foams available in the U.S.? Sorry to hijack your thread...
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.
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Casey_LB
Regular Member
Joined : Mar 2015
Posts : 248
Posted 7/29/2019 10:53 PM (GMT -7)
For me, it was about 3 months before I thought Entyvio was working, and then slow improvement over the next 9 months.
Male 54
Dx'd w/ UC 2013, flare since 4/14
Asacol HD 800mg, 6/day
Start Remicade 12/14, nonresponsive, DC'd 3/15
Start Humira, 8/15, nonresponse, DC'd 12/15
Hydrocortisone enemas helped, regressed after stopping,

Start Entyvio 12/2015.
Restart hydrocortisone 12/2015
Start UMass IBD_AID diet 12/2015
Improved w/ Entyvio, hydrocortisone, IBD-AID
Colonoscopy showed clinical remission in 1/2017.
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greenuc
Regular Member
Joined : Sep 2011
Posts : 228
Posted 7/30/2019 5:06 AM (GMT -7)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 15505
Posted 7/30/2019 5:10 AM (GMT -7)

Sara14 said...
Are steroid foams available in the U.S.? Sorry to hijack your thread...

Yes, there's steroid foams within the USA. Uceris foam is a brandname, and treats the rectum and sigmoid colon. I'd imagine there's generic hydrocortisone/budesonide foams as well.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 5513
Posted 7/30/2019 8:55 AM (GMT -7)
Thank you!
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.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17513
Posted 7/30/2019 8:30 PM (GMT -7)
I wish you all luck. For me, I gave up after 10 weeks. I was only getting worse. All these meds only work for about 50% of people, or less, 50 is a very positive outlook when you really look at the research. Give it time, but always be ready to make a move.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 623
Posted 7/31/2019 4:39 PM (GMT -7)
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)

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valleyguy
New Member
Joined : Sep 2012
Posts : 19
Posted 8/2/2019 11:22 PM (GMT -7)
I started entyvio just over 2 years ago. The first infusion showed no symptomatic improvement. I couldn't wait until my next infusion hoping this one would show some improvement. Not much. However, after the third I did notice appreciable improvement and since then, symptoms have gone and my life, as I knew it before, returned. This has been a miracle for me and it could be for you. I can't say this med will definitely help but to make a determination you should stick with it for at least two more infusions. Be patient and you may well notice improvement shortly.
Good luck!
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 8/8/2019 9:23 AM (GMT -7)
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.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1295
Posted 8/8/2019 9:41 AM (GMT -7)
Have you not seen any improvement at all? You won't have another infusion for 8 weeks, correct? See if they can check your Entyvio levels right before your next infusion.

I loved Entyvio and responded fairly quickly. By the time of my 4th infusion I was completely symptom free. I was really bummed when it stopped working for me.
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 8/8/2019 9:46 AM (GMT -7)
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.
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Happier!
Regular Member
Joined : Feb 2014
Posts : 283
Posted 8/8/2019 10:19 AM (GMT -7)
Yes!
Finally!
After about 9 months
Born in ‘62. Symptoms since October 2012.
Diagnosed January 2014 IBD, Ulcerative Colitis, Pancolitis
Currently: Apriso, Entivio, Valtrex... it varies.

Have tried: Almost every healthfood thing in the world (NO help)
If this could be cured with herbs, vitamins or diet…
Good days, bad days and a lot of sleep.
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dontscopeme
Regular Member
Joined : Jun 2012
Posts : 303
Posted 8/8/2019 10:38 AM (GMT -7)
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.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1295
Posted 8/8/2019 5:20 PM (GMT -7)
I had noticeable improvements between the 2nd & 3rd infusions and was completely symptom free by the 4th. I am not sure that's typical though. I have heard that it can take longer.

For almost 1.5 years on Entyvio it felt like pre UC ... I was completely normal. I don't know why I lost response.

I hope you start to see some improvements soon!
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 623
Posted 8/8/2019 6:20 PM (GMT -7)
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.
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!
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jayce
Regular Member
Joined : Nov 2007
Posts : 419
Posted 8/8/2019 8:29 PM (GMT -7)
I have read that people beginning entyvio when they're not flaring badly, or their flare is under control from steroids,, or other meds, seem to respond sooner.
Also, maybe your dr can try moving the infusions closer together for now, maybe every 4 weeks.
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valleyguy
New Member
Joined : Sep 2012
Posts : 19
Posted 8/8/2019 11:16 PM (GMT -7)
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..
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 5513
Posted 8/9/2019 9:53 AM (GMT -7)
valleyguy -- Great story and perspective.

dontscopeme (love your user name, btw) -- I really hope you can find some relief soon.
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. 15 mg pred. Started Remicade 7/25/19.
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