Starting Entyvio

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.!!

Good luck! :)

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!

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..

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.

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.

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.

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!

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.

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

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.

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.