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****long post--sorry****Hi everyone! I am post surgery of 5 years. Its a long story but I had a sub-total colectomy and will not be able to have my final 2 surgeries to reverse the ileostomy until later this year or early next year. Surgeon wont do it until I lose at least 50lbs (I was 180 when he said no the first time--gotta be 150-170---I ballooned up even higher once I started "living life" and hit 220) and I felt fine the last several years and actually 100% better than before surgery so I just started living and enjoying life which was something I had not been able to do. Didnt give my UC much thought until my labs started being off again. Ive been on steroid enemas for over a year and they are no longer working. My inflammation markers have elevated again and my provider recommended Entyvio until I lose weight to have surgery( down 12 lbs in 6 weeks) So I thought I would ask here how response has been for people using it?I was allergic to Remicade, nothing else worked thats why surgery was my only option. I have no symptoms hardly except my inflammation markers being elevated in my labs. Of course I have an ileostomy so I dont know what symptoms I would have really. Did Entyvio work for you? What side effects did you notice? Also, how is it financially? Remicade and surgery nearly broke me so Im not looking forward to another huge bill. Just looking for advice and thank for taking the time to read this 😁

Reply posted for mckinndn.

So, I have been on Entyvio for 2 years... 

Heres my take on the top 3 options and I will rate them 1,2,3...

1. Remicade... Gods gift is what I called it. I loved it. For 2 years but, my white blood cells supossedly fought it off :(

2. Entyvio w/ mp6... I stopped the mp6 because, It made me sick...Im already sick why stay sick but, the Entyvio had less side effects than the Humira... I did get drug induced lupis with remicade and humira (DO NOT WISH THAT ON ANYONE... YOU FEEL LIKE DYING BECAUSE EVERY JOINT HURTS SO BAD AND WITH CHRONES GETTING TO THE TOILET IN TIME IS IMPOSSIBLE)

3. Humira... I hated taking that shot in the theigh... Whats worse than that? Doing it in the stomach. Also, Drug Induced Lupis with this sucked. I had more accidents than when i was taking nothing. 33 year old man using the bathroom on himself is embarrasing.

Good Luck. If your new and want answers your in the right place. Btw someone mentioned about scientific reviews.... never ever go by them. Go by a concensus of the group who have or are on that certian drug. Thats how I said okay to Remicade. I loved remicade made me go into remission for 2 years!

 Reply posted for mckinndn.

If you're worried about side effects, it's natural to pay more attention to anecdotal testimonies rather than scientific observation, but keep in mind that the latter is almost always closer to the truth. Here's the bottom line. Serious side effects associated with any of these biologic medications (Remicate and Entyvio) are very rare. Rare enough that many of them could be considered red herrings. For example, more serious side effects have been reported by patients on a placebo than on Remicade:

http://programs.rmei.com/biosimilars2016/Presentation/index.html

See page 10. I know the presentation is about a different subject altogether, but I couldn't find the data it's referencing directly about side effects. But, you'll find that the data on serious side effects for Entyvio could also be considered close enough to the noise floor compared to a placebo to be statistically insignificant.

That all said, if you're looking for anecdotal testimony, I've had UC for 12 years. I responded well to Remicade 4 years ago with no noticable side effects, until its effectiveness wore off after a year. I used Simponi for 2.5 years, and it seemed to be effective for at least 1.5 years, also with no noticeable side effects. I just recently started Entyvio 3 weeks ago, and I've had very rapid improvement in my symptoms, which had deteriorated badly one month ago. 3 weeks later I have no symptoms. And, again, no noticeable side effects.

 Reply posted for akr008.

Hello! I was on Entivyo last year for my UC which I've had for 7 years. I took about 5 injections and on the 6th I became unconscious, and broke out in hives. My doctor told me I was the second ever reported to have these kind of severe symptoms, and that he was shocked it happened. However I've heard nothing but great things about entivyo from others. I've heard of several people going into remission with it. I was also given a payment option to be in a program for those with insurance so that my copay was less expensive. It was very affordable for me! Too bad it didn't work.

 Reply posted for mckinndn.

I have been on entyvio for over 2 years now and it has worked great. Much shorter infusion time than Remicade, no pre-meds, and fewer side effects. Honestly, I haven't noticed much that I can contribute directly to the entyvio.

Financially.... it's expensive. There is no way around it. All of the biologics are pricey. I just got a bill the other day for my infusion a few weeks ago and it was just over $30k. Granted that's pre-insurance kicking in and Entyvio Connect picking up a large part of the tab. By the time all of that is taken care of I end up paying about $100/treatment until I max my out of pocket for the year. It's tough, but at least it's keeping me healthy and able to work. 

good luck.

 Reply posted for mckinndn.

Just had my first dose of Entyvio on Monday.  I'm ok so far & crossing my fingers as Remicade gave me medically induced Lupus.  No worry there right.  They assured me different biologic & so I'm going for it as there's no other medications for me at this point in time.  The next step is the balloon procedure & then Ileocolic Resection so trying desperately to change diet more & praying the Entyvio works.  

Part of my problem on side effects is I'm a Tetroplegic from war injuries.  Had Cervical Spine Fusion C5-C7 & discectomy.  So I have pain all the time from spine & TI.  They talked about surgery last month after my Colonoscopy & Endoscopy. The usual suspects & since they couldn't go further because of inflammation they pushed for surgery. 

Sorry TBI too so I babble,  I will let you know the best I can about any odd side effects from Entyvio.  Keep fighting the battle, we know our enemy so we need to get informed on the best way to fight.  I research everything & create my own spread sheets on what meds I've taken & why I stopped taking them & when.  Doctors don't always have that info. so I produce my sheets & it makes things go faster on our visits.  It also helps me mentally.  Tracking my blood work to let them know how out of wack my C-reactive Protein is & so on since they are busy & I can contact them before they even figure out things are worse.  They deal with hundreds/thousands of patients at the VA so I have to be proactive & it keeps me from spiraling, maybe it will help you to be well armed with spread sheets.  To show them look I've had this procedure then...this med then...so they don't think I am a whiner or haven't gone certain routes with my illness.

Take care.

 Reply posted for mckinndn.

I don't know why it will not save my spaces to help break up my long post and make it easier to read!? Sorry