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Posted 7/19/2015 10:04 AM (GMT -7)
Just wanted to keep a log. I fought hard to avoid remi or humira or simponi first. This'll be my first biologic, I wanted to give it a fair chance without efficacy potentially being altered by prior TNF use. Uceris worked wonders in terms of putting me back into remission, I just wish it'd keep me there. I know there are long term studies out there referencing side-effect profile of long-term 6mg Uceris use and everything I've read looks outstanding, just wish that dosage was available for possible maintenance. Anywhoo, new to the forum, will answer any questions and keep everyone updated when I can!

EDIT (As I can't figure out how to post signature I'll copy and post in this edit. Or maybe it has posted and I just can't see the signature portion of my post?)
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
150 mg Imuran
Lialda 4.8g
Uceris 9mg

Post Edited (TheITIS) : 7/19/2015 11:07:26 AM (GMT-6)

Posted 7/19/2015 1:05 PM (GMT -7)
I'll be starting Entyvio in 2 weeks too. I was on Humira for 6 months, which cleared up my inflammation in upper part of the colon, but I still have severe inflammation in 1/3 of my lower part of the colon, near rectum. so My GI thinks Humira has stopped working and we are starting Entyvio. hopefully this works for both of us.!!
Diagnosed with UC July 2013
Big flare in May 2014, still not in remission
Humira since January 2015, increased dose to once a week now.
VSL #3 DS one packet a day
Feosol Biferra and Vit D 5000 once a day
Posted 7/19/2015 6:27 PM (GMT -7)
Go to My Profile, Edit Profile, and enter your signature. When posting, make sure Include my signature is included. I've noticed signature changes sometimes don't take affect until you close your browser and come back in fresh.

Entvyio takes 14 weeks for some, slow working, so be prepared for the long haul. Good luck!
Moderator ulcerative colitis
M, 37, uc (proctosigmoiditis) in remission
Rx: Remicade 5mg per kg/8 weeks, 75mg 6MP, weekly Rowasa
Diet: Diet mods and supplements haven't done a thing for me
UC causes complicated relationships with colons :::: we have trust issues ::::
Posted 7/20/2015 6:47 AM (GMT -7)
Good luck! :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso
Posted 7/20/2015 11:25 AM (GMT -7)
Infusion 1 completed:

Nurse took my vitals, took blood with the intention of testing for JC virus, then off to infusion land. Was out of there in about 45 minutes.

YoungmanUC: make sure you get onto Entyvioconnect which is basically a patient copay assistance program. You can find the paperwork on their webpage, you need your Gastro to fill out some stuff. Infusion price was 78 bucks with entyvioconnect, without it would've been close to $500.

iPoop: did all that, hopefully it posts as I'm using a new browser today versus yesterday. Also, you mention entyvio taking 14 weeks to work, I find that odd as insurance only authorized me through 10. I guess they want the information from my gastro before they re-authorize. Insurance has really needed their arm twisted through all this. What's also odd is my gastro seems like he's in a rush to pull me off the uceris (i've been on and off of it for a long time) and kind of implied that after my second infusion he was going to try to take me off. Should I fight to stay on as a bridge until I get through my loading doses of entyvio?

notsosicklygirl: thank you, and I hope you're not so sickly :)
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
150 mg Imuran
Lialda 4.8g
Uceris 9mg
Posted 7/20/2015 11:37 PM (GMT 0)
I'm not on entyvio but from what I've read on entyvio warriors, a bridge is needed for several infusions. Two infusions are not enough time and several patients need entyvio every 4 weeks which was the interval during the trials. My understanding is that the insurance companies dictated the 8 week interval. Good luck and I wish you great success!
42 yo; pancolitis dx 2001
asacol max dose for several years
prednisone and rowasa when flaring
remicade since 2009; zofran, canasa
Factor V Leiden-blood clots x3
gabapentin & cymbalta for peripheral neuropathy in feet
Posted 7/21/2015 6:19 AM (GMT -7)
I had my first infusion last Thurs. Felt fine after but I'm currently dealing with side effects....weakness, nausea, headache. I'm committed to this for 14 weeks and will re-evaluate. My infusion clinic has 10 people using Ent. and although early in the game she has noted that most patients have some improvement.

I'm a bit concerned with having my IVIG infusion on Friday plus my second Ent next Thurs. Hopefully my body will rally and I'll be able to handle both.

I'm extremely fortunate being Canadian as I'm covered for both drugs.

Good luck! May we find remission!
Posted 7/21/2015 7:58 AM (GMT -7)
I am really excited to start this since I am hearing very positive things from people who have used it. I hope this drug works for everyone..
Diagnosed with UC July 2013
Big flare in May 2014, still not in remission. Severe inflammation in 1/3 of lower part of the colon
Allergic to mesalamine
Humira since January 2015, increased dose to once a week now. it stopped working after 6 months.
Starting Entyvio.
Feosol Biferra and Vit D 5000 once a day
Posted 7/21/2015 9:24 AM (GMT -7)
They took regular Asacol 400 mgs off the market but they still have Asacol 800 mgs. They also have Delzicol, which is a 400mg Asacol pill put inside of a capsule. I never understood why, when that change happened, doctors didn't use one of those instead of putting someone on a completely different medicine. Another thing that might help is that Asacol is usually taken several times per day whereas Lialda is usually only taken all at once - one time per day. If your body prefers the several times per day dosing you can split the Lialda up and take it several times per day instead of all at once. When I was on Lialda I found that worked much better for me than just taking it one time per day.
Pentasa (500mg) 2 pills X 2

VSL#3 1 capsule; Prescript Assist Probiotic 1 capsule; Probiotic 3 - 1 capsule; Grape seed extract (1)400mg X 2; Nopal capsules 3.9 grams per day; Vitamin D3 (1) 5,000 IU X 2; DAO as needed due to dietary histamine intolerance

Gave me trouble: Zymactive, Renew Life Probiotic 80 billion, Florastor, high histamine foods
Posted 7/21/2015 10:53 AM (GMT -7)
Just thought I'd check in. Let me preface this by saying I appreciate all the feedback and comments, I'll do my part by keeping an accurate log and description of my dance with vedolizumab

The only big side-effect I've had is migraines though it has substantially diminished since first infusion yesterday morning. Regarding movements I'm only getting urgency in the mornings, maybe going 3-4 times a day on a bad day. I think I can thank the uceris for holding on. Even pre uceris I was going 2-5 times maximum, blood here and there. Initially my GI thought we could qwell a flare by doing a 8 week uceris burst, did a colonoscopy (this april) and he wanted to immediately start me on a biologic. I fought to stay the course on the steroid and obtained a VSL DS script that I've been taking religiously since this spring along with olive oil shots (yes you heard that right, shot glasses of olive oil daily because YOLO) along with serious diet mods. We reevaluated around early June with several blood tests still showing inflammation. Put the paperwork in for Entyvio and here we are.

platinumpixie: the fact that you mention the trials showing promise with only 4 week intervals frightens me. I've had to fight pretty hard to get the entyvio prescription and doubt my insurance would be willing to cover 4 week intervals vs 8 week.

rbartolo: pardon my ignorance but what is IVIG? Hang in there buddy, hopefully we'll see result soon. Were you on a prior biologic and if so how long did it last for you?

youngmanuc: I'm with you pal, keep in touch.

garylouisville: my mail order pharmacy automatically made the change to delzicol when asacol was pulled. Within two weeks (could've been coincidence however I've read too many posts about delzicol giving people issues) I was in the second flare I've had since diagnosis. My first GI (dropped the guy when he said he wanted to try remicade first and really wasn't willing to fight insurance for entyvio. I have it in my mind that remi is my nuclear bomb last resort biologic similar to my current GI as it has highest success rate) gave me the choice of HD and Lialda, I told him whatever he thought. We went with HD as asacol has been on the market longest, I started noticing I was passing them often in my movements. He assured me that the medication was being released. Started seeing a new GI who hates HD and likes Lialda better as it is able to dissolve at a lower PH in the gut then asacol HD and he put me onto that. Very hard to tell if there is a difference at the moment, great idea with taking the lialda multiple times a day, I think I'll try that.

Quick summary: no real news to report other than migraine side-effect, I think it'll pass before the 48 hour mark as I'm feeling better now and it has been a little over 24 hours.
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
150 mg Imuran
Lialda 4.8g
Uceris 9mg
Posted 7/21/2015 11:02 AM (GMT -7)

YoungmanUC said...
I am really excited to start this since I am hearing very positive things from people who have used it. I hope this drug works for everyone..

it definitely doesn't unfortunately, I've seen more people not have luck than have luck based on reading entyvio warriors on facebook.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso
Posted 7/21/2015 1:29 PM (GMT -7)
I've had 8 entyvio infusions w/out much success. I'm adding back Imuran to see if it helps after finishing a round of prednisone.

My Entyvio infusion tips! First off the infusion is fast. I have my vitals checked, get a bag of saline and then the nurse runs the Entyvio. In and out in no time.

Side effects....about 3 days post infusion I have really, really bad headaches. I also become light sensitive. This lasts (without fail) 3 days. I would suggest staying super hydrated before and after the infusions. That seems to help a bit w/ the headaches. It has made me extremely sun sensitive so make sure you wear sunscreen if outside for long periods of time. I also seem to have extra gas a day or two after the infusions.

I think that is about it. I will post more as I think of it.

Oh and lots of people in my GI's office are having great success with this med. I seem to be the only one it is not working for (my typical mo). My doctor wanted me to give it a full year in case I was a delayed responder. Hence continuing on the med even though not doing well currently.
Tried: Entocort, Uceris, Mtx, Imuran, Humira, Remicade, Cortenema, Rowasa, Prednisone
Currently on: Entyvio (7/31), Budesonide Suppositories
As of last scope (6/14/14): Moderate to severe UC to 25cm
Posted 7/24/2015 4:09 PM (GMT -7)
Hello all, just wanted to check in after this first infusion and give updates regarding side-effects and BMs.

I know the real test will come when I pull the uceris and I really don't know when to do that but honestly I haven't had multiple movements a day since infusion 1. I see my gastro a week after infusion 2 (roughly 2 weeks from today) and I'm concerned he'll try to talk me into pulling the steroid. I need to have a counter-time frame as to when I believe it best to do so. Like many of you I think two infusions isn't enough time, still need that uceris bridge, when will be enough time that I can consider dropping the steroid? I go to the washroom once in the morning and that's basically it. Still too early to comment on efficacy but we'll see in time. One and only side-effect I've had is the migraine/headache issue that lasted maybe 48 hours.

pink1: Why did you stop imuran? I know a lot of the other tnfs gastros like hitting you with the 1+2 (imuran+tnf) punch in order to theoretically prevent the build-up of antibodies so I'm curious if maybe you had some bloodwork done that showed something that made you pull imuran?

Will continue checking in, cheers all!
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
150 mg Imuran
Lialda 4.8g
Uceris 9mg
Posted 7/24/2015 4:45 PM (GMT -7)
Try taking an antihistamine before bed the day of your infusion....works wonders for my horrid Humira headaches I was getting and many thanks to ks1905 here at the UC board for sharing that info with me, one of the best tips I've ever gotten lol!! Major life saver, I've never really been prone to getting headaches so I can now truly empathize with those that suffer with migraines...those headaches would be at full force and last as long as 3 days after giving myself my Humira shot.
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.
Posted 8/3/2015 4:08 PM (GMT -7)
Infusion 2 completed:

JCVirus came back as positive, let's hope that as this drug becomes more prevalent in treatment nothing comes out regarding vedo being like its sister natalizumab with the drug passing blood-brain barrier. No PML please smilewinkgrin

Appointment with Gastro tomorrow morning, BMS seem to be getting better but I won't really know for sure until I pull the steroid. I imagine he's going to try to kill Uceris, I've been on it for much longer than 8 weeks on and off over the course of the past few months, I'll probably counter with negotiating taking it every other day as I've been doing so for the past week with no serious issue, maybe every third day. Also worth noting, I am taking VSL3 DS, usually two packets a day, sometimes one.

So 6 weeks seems to be the sweet spot with this? Please correct me if I'm wrong, I'm the first patient on entyvio in my GI's office and I'm very seriously concerned that he's expecting response sometime in the loading phase, per entyvio's own webpage after 6 weeks 47% achieved response on the drug vs 26% taking placebo. With Imuran the sweet spot seemed to be 6-8 weeks before beginning to notice difference, can I expect the same in terms of length with vedo or longer? Will continue to update! Cheers!
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
Imuran
Lialda
Uceris
Entyvio
Posted 8/4/2015 2:47 PM (GMT -7)
Follow-up appointment:

Had blood-work a few months ago (on everything else but entyvio), and again the other day. Big change in CRP, GI was pleased, for whatever reason levels are down, can that be attributed to my infusions? Perhaps. Surprisingly GI is okay with keeping on the steroid as a bridge until my third infusion which is fine with me, however I talked with him about maybe taking the uceris every other day or every 3rd day if feeling well. He's fine with that idea as well. Also cutting my lialda to one pill a day, feeling really good about entyvio, bms do look a bit more formed than usual but again it's still really early and I've only had two treatments, the change in CRP cannot be ignored however. Will check back in again after infusion 3 or if I decide to pull steroid before infusion 3. Cheers!
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
Imuran
Lialda
Uceris
Entyvio
Posted 8/4/2015 5:30 PM (GMT -7)
Glad you're feeling better, dropping c-reactive protein levels is a good sign that you're healing and that there's less uc inflammation. I'd be careful about dropping both pialda and steroids at once. Take them down one-at-a-time, and very, very slowly. I'm not convinced entvyio is working that quickly. It's supposed to be very slow acting (like take 12 weeks....).
Moderator ulcerative colitis
M, 37, uc (proctosigmoiditis) in remission
Rx: Remicade 5mg per kg/8 weeks and daily 75mg 6MP
Diet: Diet mods and supplements haven't done a thing for me
UC causes complicated relationships with colons :::: we have trust issues ::::
Posted 8/19/2015 7:13 AM (GMT -7)
Update:

It's incredible how quickly this disease changes. I never ended up dropping lialda dosage but continued doing the uceris every other day. Roughly four days ago everything changed almost overnight. Incredible urgency, loose movements, a little bit of blood, 3-6 BMS, feeling a rough flare coming on. Bumped up the uceris every other day to every day, still not doing much in terms of keeping this flare in check. I have a leftover prednisone prescription laying around and took 10mg yesterday and will probably do the same again today. I called my GI's office to get in to see him and the nurse said "maybe the entyvio isn't working and it's time to move on to another treatment?" I see my GI on Friday, I'm terribly concerned that he's going to want to pull entyvio not giving this medication a fair chance, when do people turn the corner on this medication? I need to go into this appointment with ammo, I was thinking I could ask him for a very very short pred (low dose) burst/taper just to last me through the month (while remaining on uceris) as I receive my third infusion before the end of the month. I'm not really sure what to do. Does anyone have any recommendations? As I'm the first one in my GI's office on this medication he seems very open to suggestions. Thank you for your time.
Pancolitis DX:
Fall 2007

Imuran & Asacol has kept me in remission up until they pulled Asacol off the market a year or so ago. Have been clawing tooth and nail to get back into remission.

Currently on:
Imuran
Lialda
Uceris
Entyvio

Post Edited (TheITIS) : 8/19/2015 10:40:17 AM (GMT-6)

Posted 8/19/2015 8:54 AM (GMT -7)
I am really sorry. same thing happened to me and finally I decided I had enough steroids and went for surgery. In your case, it sounds like you have some medical options. I guess, try to stay calm, get in to see your GI and see how it goes.

Definitely try Remicade.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!
Posted 8/19/2015 8:56 AM (GMT -7)
I think you need to stay on the entyvio for a bit longer if you want to see results.
I don't recall if you are on any rectal meds or imuran or 6mp it's possible you can start some of those to help you out while giving entyvio a shot.
If you cannot do so than maybe switch to remicade as it tends to work quicker than entyvio
I found great success with remicade I have had 4 infusions and I'm finally nearing remission ( still get cramping and nausea and gas pains but blood and mucous are mostly gone)
Good luck
20 year old female
Diagnosed with severe uc on 4/27/15
Remicade 10 mg/kg
Imuran 50 mg
Multivitamin, biotin, calcium, and vitamin d
Posted 8/19/2015 8:59 AM (GMT -7)
Thanks for keeping us all updated! Entyvio is looming for me as well and the info you are providing is very helpful.

I'm so sorry that it seems you have hit a bump in the road. I have heard from many that Entyvio can take a very long time to work so hopefully it will pay off for you.
Diagnosed with ulcerative proctitis in 2010-canasa
Many flares along the way
Hospitalized with major flare and diagnosed with UC in June 2014- taken off of canasa, put on pred (off now!), 4 lialda/day
Flared again (minor) in Feb 2015. Tried Cortifoam (no luck). Was put on Canasa (no luck), Anusol (nope)
Current meds: 4 lialda a day, 1 budesonide suppository nightly
Posted 8/19/2015 9:08 AM (GMT -7)
So sorry you are going through this. I am supposed to go on Entyvio next too so this post has been very helpful for me also.

I agree that you need to stay on the entyvio longer though. It's finding something that will buy you time that is the tricky part. I also had great results with Uceris with very little side effects. Not sure why it can't be viewed as a long term bridge solution? My GI took me off of it after 8 weeks too and it has been hell ever since.
Diagnosed with UC in 2013. Had 3 month remission period on Asacol before it stopped working. Prednisone has consistently caused flare to worsen.

Medications: Asacol HD 800mg, Pred, Uceris, Canasa, Remicade
Aloe Vera Enemas
Gluten Free low carb diet
Turmeric, VitD, Fish Oil, Grape Seed Extract, Adrenal Fatigue, L-Theanine, D-Mannose, Q-Zyme Ultra, Marshmellow Root,VSL #3
Hope. Lots of Hope
Posted 8/19/2015 10:27 AM (GMT -7)
Awe, that sucks!! Hopefully it will kick in sooner rather than later for you...let us know what you GI says when you see him on Friday.

Sending good vibes your way that it kicks in for you TheITIS!!
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.
Posted 8/19/2015 11:01 AM (GMT -7)
The reason uceris cannot be used long-term is because is a steroid. While, they help when you use them you will just regress after stopping. There are many detrimental side effects and long-term effects from using steroids. It would be irresponsible for a doctor to Allow A patient to remain on steroids when there are other options. I hope you can find something that will help you in between. Good luck and feel better.

Keep us updated.
20 year old female
Diagnosed with severe uc on 4/27/15
Remicade 10 mg/kg
Imuran 50 mg
Multivitamin, biotin, calcium, and vitamin d
Posted 8/19/2015 12:16 PM (GMT -7)
People say entyvio can take a very long time to work, but those people should look at study results. I am not saying the studies are the only fact out there but they do have some truth to them. People in the studies who saw results saw results within a fairly short period. I think it was 10 or 16 weeks... It's always good to give it the best possible chance of working but there is also a time where you need to accept reality and figure out your next steps.

Luckily for him, it seems like he hasn't tried any anti-TNF and those are a slam dunk for 70% of UC patients. I would definitely be excited to have that as an option!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

Post Edited (notsosicklygirl) : 8/19/2015 6:19:30 PM (GMT-6)

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