My entyvio experience.

{{CROHN'S}} said...
mikef- please let us know how you fare getting Entyvio infusions on the road. Getting infusions at Walgreen's (or elsewhere) could be really convenient for travelers, or if the infusion came up over a vacation or something.

I spoke to Walgreens and CVS. They both have a nationwide network of infusion centers and they offer "home infusion" where a nurse comes to your home to do it.

From the Walgreens web site: "Walgreens Infusion Services regularly cares for patients who travel, work, coach baseball, play baseball, and do just about anything you can think of. We have state-of-the-art infusion devices that are lightweight and portable and require only a backpack, purse, or even a pocket for transport. Our pharmacies have the capability to support all of your home infusion needs while you travel for work or pleasure within the continental United States."

They recommend about two weeks' notice before infusion so they can transfer the prescription to the next location. However, they warned me that states have varying laws about infusions: e.g. many states don't allow a nurse to perform in infusion unless you've been seen by a physician in that state. That could mean I would need to see a new physician each time I need an infusion in a new state while traveling.

The CVS infusion center list is online at /www.coramhc.com/locations/default.aspx but Walgreens doesn't post their list. The person I spoke to e-mailed me a scanned list of the Walgreens infusion sites. The U.S. is pretty well covered but with some large gaps in the central U.S. and parts of the western U.S.

I haven't started treatment yet... I need to decide between Entvio and Cimzia. The Cimzia would likely be easier to coordinate: I just need to arrange delivery to wherever we are staying that week in our RV (which I've been doing for the past year for Humira deliveries, with only moderate difficulty).

Mike

Bobbie girl. Sorry for your ordeal.
Sometimes it takes tme and trying many things to get crohns nder control. 60 mg pred is a lot
40 was the magic number for me.
Some things to consider as you continue along
DIET! SCD is the most recommended.
You may need an elemental diet to get it under control since you can hardly eat anyway
I use a healthy one called absorb plus sols at listen to your gut
Remicade is definitely worth a try but if you failed Humira other than for antibodies the odds of another anti TNF helping are greatly reduced that ncludes cimzia.
In place of pred you could try entocort also a steroid but less systemic can be expensive but looks like you have good insurance.
Stress is another thing you have to watch and Avoid. I found simplifying my life and downsizing my ambitions helped me discover a more rewarding lifestyle
Good luck

It seems like a lot of us are having good results with this drug. It has been mentioned before, but I will say again that Entyvio may take a long time to work. Maybe six months or more. If you can, hang in there. If the drug starts to work it is so worth it to be finally out of flare hell. Few side effects and a more selective immune suppression to boot. Not bad, Takeda, not bad.

Just curious to know, and sorry if it's been mentioned already. Can you build up anti-bodies to Entyvio just as you would to other biologics?

{{CROHN'S}}, I followed your link but I suck at understanding things. What does it all mean? Should we worry that entyvio will stop working one day?

My doctor prescribed daily imuran (azathioprine) to reduce the possibility of entyvio not working. Anyone also take imuran for this?

Hey {{CROHN'S}}, your username taught me where some key is located on the keyboard.

Yes, I hope one day a company will release a 'regular' drug. That would be awesome. Your link shows a handful of drugs in the pipeline. That's reassuring. Thanks.

Hi -

It seems like it's been a while since the Entyvio takers have posted to this thread. Any updates?

I just failed Methotrexate, and am now facing a decision - Entyvio or Stelara. Judging from this thread, it seems like most people are seeing decent response, even if it takes a while to kick in.

I tend to be more conservative with all Crohn's drugs, so even though Stelara isn't yet approved, I'm leaning towards it given it's been on the market since 2009 for Psoriasis (so more safety data). I get concerned with the PML risk of Entyvio (I get that it's more selective than Tysabri, but it still worries me).

Would love an update from anyone taking Entyvio, and whether you think I should try Stelara first, or Entyvio.

Thanks.

RSH

Thanks for keeping us updated{{CROHNS}}, hope you find something that works for you soon.

{{CROHN'S}} said...
Update-

Well, I did ok for awhile there on Entyvio, but it has since failed. I did get a few pretty good months out of it. I would have rather had a few good years for sure but what can you do? Onto new drugs now, maybe stelara or MTX. Hope all you Entyvio users out there have a longer response than I did!

Sorry to hear Entyvio failed for you. I'm getting ready to start it, not hearing alot of positive things about it Did you try Stelara ? What is MTX ? Thanks in advance