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Starting Entyvio / Vedolizumab - Advice?

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Ulcerative Colitis
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Posted 8/3/2014 8:55 PM (GMT 0)
Hi, I'm soon starting Enyvio / Vedolizumab for Ulcerative Colitis. I'm extremely nervous about it. Does anyone have any advice or experience they can share? Some things I'm wondering specifically are:

- Do you have to have an antihistamine beforehand?
- Is there the same concern regarding antibodies as there is with developing anti-Remicade antibodies?
- Did you take another immune suppressant at the same time? (to prevent antibodies)
- Did you take a steroid at the same time (to further prevent antibodies and / or allergy?)
- Were you monitored for PML and if so how did they do that?
- Did you need routine blood tests?
- Have you experienced any side effects - what about hair loss (currently a big problem for me!)

Thank you!
Posted 8/3/2014 10:13 PM (GMT 0)
Very low chance of getting antibodies since it is a humanized antibody, not chimeric like Remicade.

You dont need to take an immune suppressant/steroid (as far as we know now), but it certainly wont hurt.

PML risk is assessed by measuring the JC virus in your blood. But no one has ever developed PML while on vedo, nor will they ever due to the drug.
Posted 8/3/2014 10:57 PM (GMT 0)
Hi! I've had one dose so I'll do my best to answer:

- Do you have to have an antihistamine beforehand? No
- Is there the same concern regarding antibodies as there is with developing anti-Remicade antibodies? No
- Did you take another immune suppressant at the same time? (to prevent antibodies) I am not
- Did you take a steroid at the same time (to further prevent antibodies and / or allergy?) I tapered off pred in March
- Were you monitored for PML and if so how did they do that? I had a JC test and was negative. I did sign in the consent that PML was a very small risk (no one in the study got it)
- Did you need routine blood tests? The normal (cbc, etc)
- Have you experienced any side effects - what about hair loss (currently a big problem for me!) So far only side effect was dizziness day of infusion. My hair is already falling out like crazy. Hopefully this won't make it worse!
Posted 8/4/2014 2:45 PM (GMT 0)
Welcome to the board, England. No need to be nervous. The infusions are easy and all indications so far are that Entyvio is a safe drug. I have had two infusions of it, and will have my third in three weeks.

There are no pre-medications necessary at the infusion. It's a humanized drug, so unlike Remicade the chance of a reaction is small - no Benadryl, Tylenol, or anything necessary.

I am not taking another immuno-suppressant. I am on 10mg of Prednisone but that's because I am having a tough time tapering it. My doc and I want me off it. Maybe the Entyvio will help with that.

PML really shouldn't be a risk with this. It's not supposed to cross into the central nervous system like Tysabri does. There have been no reported cases with Entyvio. It is an anti-integrin like Tysabri so that's why it unfairly gets the PML risk tied to it. I got the JC Virus blood test anyway last winter when Tysabri was being considered and it was negative.

My doc had me get a CBC (complete blood count) and CMP (complete metabolic panel) before I started Entyvio and will have me repeat it after my third dose just to watch for any changes, particularly to liver and kidney function.

No side effects so far. I felt fatigued the day of the infusions but I'm not sleeping much due to the prednisone and my two young children so my guess is the fatigue had nothing to do with the Entyvio.
Posted 8/4/2014 8:59 PM (GMT 0)
Thank you so much for the great advice!

So - I should ask to be tested for the JS virus before my first dose? Is it something that can be in your body without your knowing it and then the Vedolizumab can "awaken" it?

Baia: I am in the exact same dose. I'm been on steroids for 3 years on and off. This last round has lasted since Christmas 2012 and I'm finally down to 5 mg but can't seem to get down any further. So my doctor and I have the same hope for me.

Pink1: Thank you for sharing your experience too. You mentioned being dizzy. I will have to travel by train and taxi about 3 hours each way to my infusion centre, alone. Is the dizziness so bad for you that it would prohibit that? Or could you manage?

Thank you so much!
Posted 8/4/2014 10:36 PM (GMT 0)
Hey! Let someone else give you more information but as I understand it if you are jc positive you are at a greater risk to develop PML. But this is more of a risk w/ Tsybari than Entyvio.

You should be fine to travel back and forth. Especially since you are not driving. I drove home from the doctor's office (around 40 minutes). I just relaxed the rest of the day. I also wonder if it was in my head (the dizziness) b/c I am so anxious for this to work I didn't sleep the night before!

I have had no other side effects.
Posted 8/4/2014 10:57 PM (GMT 0)
I had two infusions of entyvio do far and no reactions...I drove myself there and back (someone was with me the first time just in case).

I don't feel more or less tired than before...I'm tired in general because I don't get enough sleep (because of UC) but that seems to be improving now, I hope it continues.

No pre meds...and I'm not on 6mp. My doc says he's probably going to want to put me on a low dose of it just in case since there is still a small chance of developing anti bodies...but right now he's undecided.

They haven't tested me for jc....but entyvio isn't supposed to have the pml risk so there shouldn't be a need anyway....but you can get it for some peace of mind...though I guess if you test positive you'll either freak out more or maybe needlessly avoid entyvio all together....so maybe better off not knowing? :)
Posted 8/5/2014 12:08 AM (GMT 0)
You do not need to be tested for JC virus. Insurance might not even pay for it since you're not starting Tysabri.

I was fine driving to and from infusion by myself. I go back to work after it and finish out the day. Infusion only takes an hour and a half for the whole thing.
Posted 8/5/2014 12:24 AM (GMT 0)
I did my second dose today. They always give me a Benadryl and Tylenol before the infusion. So far no issues. As for PML that is not supposed to be an issue with Entyvio. I had the JC test a while back when considering tysabri and I was safe. I have had no special blood test or anything. No hair loss. In fact I had an infusion at 9 this morning and now I am at work on night shift so no tiredness or other issues.

I am on Prednisone but that's just because I was flaring after Humira and Methotrexate stopped working and had to do something. I will start tapering when I am at my 3rd loading dose of Entyvio and hopefully it works so I don't need any more Pred. Now I do have Crohns but I was first diagnosed with UC. Really don't think it matters either way with all this though and all my friends are on this forum anyway.
Posted 8/5/2014 2:35 AM (GMT 0)
You have good advice from previous posters. My caution is that it isn't known to work too quickly, so patience is a virtue. don't taper too quickly. Thet are not able to adjust the dose or frequency yet, so yo are stuck with the Gemini Test protocol.
We may not be able to wait it out, as my daughter is worsening- 3rd loading dose is Thursday. Wish I was the praying type. Her school starts again the 11th and we won't know what to do before she leaves. May need to defer school to heal a bit longer. No one has suggested pre meds-tho there is still a small risk of upper respiratory infections even with this one. Fatique has been present, but my d is also anemic.
Posted 8/5/2014 8:52 AM (GMT 0)
Thank you everyone for the great advice. The Vedolizumab sounds like it will be much better than the Remicade experience who obviously took all day and frequently left me exhausted and dizzy.

Katmom: I'm so sorry about your daughter. I'm 33 and have had to stop my PhD because of the UC itself as well as all the nasty side effects of various meds. I'm also on Tacrolimus - 11 mg a day. I'm fascinated to see your daughter was on the same, as I've struggled to find people using it for UC, in the US or the UK. But it is an unpleasant drug so hoping the Vedolizumab is going to let me live a normal life!
Posted 8/5/2014 6:45 PM (GMT 0)
Hello, I am currently in the process of Entyvio approval from the insurance company. Can you guys tell me how long it took to get your Entyvio approvals? My UC has gone from mild (proctitis, 15 CM rectum) to moderate (1/2 colon) to complete (Pancolitis) over the past 10 years or so. The last drug I have tried is 6-MP, which hasn't been keeping me in remission. The regular GI wanted me to start Remicade but I saw an IBD specialist at the same hospital as my GI and they recommended trying Entyvio first. They said that Entyvio is more likely to succeed in people who haven't tried Remicade yet. If Entyvio doesn't work then Remicade can be the next step. I am just anxious and ready to get going with Entyvio. Currently am on 40MG of Pred and tapering weekly. Thank you for the replies.
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