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Entyvio, any thoughts?

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Crohn's Disease
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Posted 1/15/2016 3:39 AM (GMT 0)
Looking at getting this as a next step. Any thoughts /experiences. Doc mentioned risk of PML. Need to research this more.
Thanks for any comments.

T

Better Living Through Chemistry
Posted 1/15/2016 3:38 PM (GMT 0)
There is no real risk of PML. That warning is on there because Entyvio has a similar mechanism of action (anti-integrin) as Tysabri, which does have the risk of PML. Entyvio targets the alpha 4 beta 7 integrin, found in the intestines. Tysabri targets the more general alpha 4 (all betas, including beta 2 which passes into the brain). That's why Tysabri can treat other conditions such as MS, and Entyvio can only treat Crohn's and UC. There have been zero cases of PML reported with Entyvio so far. You do not need to worry about this.

I have been on Entyvio for a year and a half and have been doing quite well on it. I have had no side effects, am in remission, and it even closed my two fistulas that I had been dealing with for 7 years. It often can take a long time (months) to start working for people, and it took a year for my fistulas to close. Let me know if there's anything else you want to know.
Posted 1/15/2016 4:35 PM (GMT 0)
I've been thinking about using Entyvio too but isn't it more effective for UC than CD? I have Pouchitis or maybe CD so between it being less effective for CD and it taking so long to start working I asked my GI to try to get my insurance to Approve Stelara but it has been an uphill battle with the insurance company.

Bania your success with Entyvio makes me optimistic if I do have to take it.
Posted 1/15/2016 5:36 PM (GMT 0)
The Entyvio phase III clinical trials showed more success in UC than in Crohn's. That's a rather limited data set of several hundred patients. Some of the top GI's were theorizing after the trials that the slow onset of action of Entyvio may have skewed the results for Crohn's. (i.e. One of the endpoints was measuring for a response at week 6, which may have been too early.) My GI wasn't too keen on Entyvio when I first started it, but now he is liking it more and more due to my success and the success of other patients of his.

So Keith, the question is, what will take longer? Winning the battle with your insurance company for Stelara or waiting for Entyvio to start working (3-4 months)?
Posted 1/15/2016 7:02 PM (GMT 0)

bania said...

So Keith, the question is, what will take longer? Winning the battle with your insurance company for Stelara or waiting for Entyvio to start working (3-4 months)?

I don't want to thread-jack this too much but I've already invested about a month of fighting the insurance company about Stelara and have at least 1 more appeal to go, so for the time-being I'm going to stick it out. My next dose of Cimzia is due next week so I'm going to use it one more time; I did see a little bit of an improvement from my last Cimzia dose. More info in my thread about the Cimzia. www.healingwell.com/community/default.aspx?f=17&m=3568415
Posted 1/15/2016 7:14 PM (GMT 0)
Kieth,
Cimzia did't do much for me.
bania,
Stellara for CD?

Thanks for the replies.
T
Posted 1/15/2016 7:25 PM (GMT 0)

Question Everything said...
Kieth,
Cimzia did't do much for me.
bania,
Stellara for CD?

Thanks for the replies.
T

QE,

J&J filed the application with the FDA for Approval for treatment in CD on Nov 30th. Since Stelara is an already approved drug for other conditions it should not take as long to get approved for CD. Once it is approved then most insurance companies will cover it. The approval process will take many months but not years.

Right now I am fighting with my insurance company because it is not FDA approved for either CD/UC; some insurance companies will cover it but others won't, mine is fighting me on it but me failing Cimzia helps my cause.

www.reuters.com/article/us-johnson-johnson-crohn-s-idUSKCN0SD1DS20151019
Posted 1/15/2016 7:44 PM (GMT 0)
Keith - keep us posted on your Stelara battles. I'm curious to see how it goes. There is little doubt it will get approved and will be covered by insurance later this year, yet the insurance companies are still fighting it now. One reason for that is probably the dosage issue. The Crohn's dose will be much higher (somewhere between 130mg and 6mg/kg, which translates to 400mg for a 150lb person) than the psoriasis dose (45 or 90mg), so the cost right now (before J&J has set pricing for Crohn's) could be huge. It also may end up being an IV instead of injection. What dose is your doctor trying to get for you?
Posted 1/15/2016 8:09 PM (GMT 0)

bania said...
Keith - keep us posted on your Stelara battles. I'm curious to see how it goes. There is little doubt it will get approved and will be covered by insurance later this year, yet the insurance companies are still fighting it now. One reason for that is probably the dosage issue. The Crohn's dose will be much higher (somewhere between 130mg and 6mg/kg, which translates to 400mg for a 150lb person) than the psoriasis dose (45 or 90mg), so the cost right now (before J&J has set pricing for Crohn's) could be huge. It also may end up being an IV instead of injection. What dose is your doctor trying to get for you?

I really don't know what dosage or if it is an injectable or infusion script. We discussed it over the phone and he told me that he'd start the script and to expect that it would take a while to get approved. He said that insurance company would reject it the first two times (which happened) and then he'd have to schedule a phone call with them to discuss it in an oral appeal, I think we are at that point right now.

The insurance company is still calling it an experimental procedure and rejecting it because it is not FDA approved.

I think the Stelara dose is 4 times a year after the loading doses.
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