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Entyvio Now Available

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Ulcerative Colitis
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Posted 6/25/2014 11:57 PM (GMT 0)
Does Imodium actually help? It might slow things down but my problem if urgency hits there's pretty much nothing I can do to stop it. Maybe I'll take some before leaving tomorrow and see what happens...
Posted 6/26/2014 1:17 AM (GMT 0)
I have to use Imodium a lot b/c of urgency. It definitely helps and my GI gave me the a-ok.

Anxious to hear how Entyvio goes for you. I'm still waiting on insurance.
Posted 6/26/2014 1:18 AM (GMT 0)
I think if you are having diarrhea then there is nothing wrong with taking Imodium but I wouldn't take it unless you are having diarrhea.
Posted 6/26/2014 1:29 AM (GMT 0)
Lomotil works best
Posted 6/26/2014 3:41 AM (GMT 0)
I'm a new member here (long time lurker) who just filled out the necessary paperwork to start my infusion therapy. Looks like next week will be my first round.
Posted 6/26/2014 5:07 AM (GMT 0)
Tomorrow (Thurs) is the 1st infusion for " us" too. A bit of a hassle, as I have been working on it since trial times. Took 3 docs in DC (don't even ask, big hospitals have a hard time being nimble with new drug codes). Supply is there, doc's SHOULD know it if they remotely care about their profession(for your Faithmac, really your GI should be shamed). This is the best drug they have evre had for UC. I know, I know...it won't work for us all. Getting it isn't the problem, insurance approvals can be expedited through Takeda's help line, nurse's don't have to be retrained on infusion therapy, no TB test needed. 30 minutes infusion and relatively simple. There is talk about bridge therapy, as it has the same loading dose schedule as Remi. and doesn't kick in for all right away.
Wish my daughter luck- she failed Remi one year ago, and has had a tough go. I wish us all well and will post our progress. Others, please do the same.
Posted 6/26/2014 11:52 AM (GMT 0)
Katmom, not too swift down here. I guess I'm used it now. Mostly retired people here in Florida . I think I'm the only one on Simponi . If I push it I would eventually get it. It's a shame they Are not up on the newest meds. Tired of changing GI's . This one is my 4th in seven years. Right now I'm trying a functional med doctor. I have a lot of medical issues to work on. UC has calmed down a bit. Thyroid and hormonal issues my seem to be tied into my UC problems I think. We shall see. If not I'll get on his ass to work on the Entyvio.
Posted 6/26/2014 7:36 PM (GMT 0)
Done with first dose....they make you wait 30 mins after you come in so the medicine can dilute....then 30 mins for the infusion. Nothing crazy happened...just hope it works!

Didn't have to take anything beforehand like with remi.
Posted 6/26/2014 8:44 PM (GMT 0)
great. I hope you get better quickly.
Posted 6/26/2014 9:38 PM (GMT 0)
Awesome, how exciting this is! Keep us updated on how you are doing :-)
Posted 6/27/2014 5:17 AM (GMT 0)
Left a message with my GI stating that I've researched and found the med is available to be prescribed and that I am ready to go. They respond with "the supply isn't there yet, no insurance will cover it yet and you would have to pay out of pocket. We would love to give it but its just not available yet".

What is my recourse in this case, since we know of at least two people on this board that have received it and others are in the process of getting it approved through their insurance? Should I be looking for a different GI that would be more proactive? Do I contact Takeda for help somehow?

So frustrating knowing I could be starting this drug NOW and at least giving it a chance to work instead the doc says take pred and just wait until their get their act together.
Posted 6/27/2014 1:15 PM (GMT 0)
neekap - Yes, you must call Takeda - 1-855-ENTYVIO
http://www.entyvio.com/hub/
Let them deal with your doctor and set him straight. Honestly, though, your GI sounds terrible.
Posted 6/27/2014 2:21 PM (GMT 0)
Unless your gi has their own infusion center, then it is the hospital pharmacy that has to be able to get it. I find it plausible that some hospitals do and some don't have it yet. Drug distribution is NOT transparent in US. I have a friend who works in a hospital pharmacy, and he says they buy through several distribution networks. The manufacturer may be doing some direct shipping, but mostly they will be releasing into various distribution networks. This can result in more/less availability sooner in some parts of country.

Calling Takeda could help Calling you insurance could help. Keep trying.
Posted 6/27/2014 3:21 PM (GMT 0)
Katmom, would you please explain what you mean by or have heard about "bridge therapy".  My GI's office just got in service training on entyvio yesterday.  My Docs nurse is surprised to know I even heard about entyvio - told her I had been following it for years.  My doc is the "do as I say and don't ask questions" type, so I am not surprised about the nurses reaction.  I would like to learn whatever I can about transitioning from remicade to entyvio before I next see the doc. 

Wishing the best for your daughter.  I have been following your posts for several years now.

Posted 6/27/2014 6:03 PM (GMT 0)
My GI mentioned needing to continue with a bridge therapy as well, something you would do while waiting for the Entyvio to start working. This may be steroids or other medications, since it may take a few weeks or months for the Entyvio to really kick in.
Posted 6/27/2014 7:57 PM (GMT 0)
Katmom how did the infusion go? How do you feel?
Posted 6/27/2014 8:01 PM (GMT 0)
It's supposed to take up to 10 weeks for entyvio to work....so they may want you to do steroids while you're on it at the beginning....that's what I'm doing now and my doc said now that I had my first infusion I can go ahead and start tapering (they don't help me much anyway, just enough to keep me from feeling like I'm dying).

For me the infusion went fine...I'm not feeling any different today than yesterday. Now is just a waiting game....my next infusion is on July 10th.
Posted 6/28/2014 9:50 PM (GMT 0)
Hi:
UCHater-my D is exhausted, day 2...you? We are on the same schedule.
Beezy, I think your Q to me was answered on my thread that said " one down", etc. Looks like a little more time to see symptom improvement before stopping the old meds and relying solely on the new drug.
HappyDay, thanks for asking. So far, no real changes other than having to leave work Fri from fatigue. She also stopped the Uceris 2 days ago, and so perhaps that reduction in steroid is playing out, only on 10 mgs of pred. and Canasa suppositories now. Can be up to 10 wks....
I'll update on the other thread-this puppy is getting long!
Posted 6/28/2014 9:59 PM (GMT 0)
Hey katmom, not much more fatigue for me....I don't get much sleep at night lately because I have to constantly wake up and run to he bathroom so I'm just normally tired now anyway.

No changes in symptoms yet either but that's what's expected I suppose. I want to see instant results but from everything I've read and been told that just won't be the case. Just keeping my hopes up that this will be my miracle drug.
Posted 6/28/2014 11:57 PM (GMT 0)
I'm so excited to read this thread! I've never heard of this drug before. I'm supposed to talk to my doctor on Monday or Tuesday (when she can fit a call in) because I'm not reaching therapeutic benefit with Azathioprine (same problem with 6mp). I'm expecting the biologics to be the next step. I wonder if I can skip the Humera/Remicade route and give this a try. The risks seem less significant.
Posted 6/29/2014 2:49 AM (GMT 0)
Pretty sure that at least right one you need to have failed remicade or humira to be approved for entyvio....speak to your doctor and maybe your insurance company though and see what they say.
Posted 6/29/2014 2:25 PM (GMT 0)
Thanks for the info, UCHater. It wouldn't surprise me if that's the case.
Posted 6/29/2014 5:15 PM (GMT 0)
That might not be true in every single case but, unfortunately, that is probably the case most of the time. The really bad part is this decision is due to cost alone and has nothing to do with the drugs in question. With all of the information currently known Entyvio has far less side effects and is much less dangerous than either Remicade or Humira. The insurance companies just want you to try the cheaper options first, even if they have more side effects. This is one reason why some insurances won't cover Remicade until you have tried Humira first, soley due to cost alone. It has nothing to do with one works better than the other. In fact, Remicade has a higher success rate than Humira does.
Posted 6/29/2014 5:31 PM (GMT 0)

garylouisville said...
With all of the information currently known Entyvio has far less side effects and is much less dangerous than either Remicade or Humira.

Out of curiosity, what about it makes it less of a health risk than Remi or Humira?
Posted 6/29/2014 5:56 PM (GMT 0)
Entyvio is targets the colon specifically (but also has some effects on the chest - so there is still higher risk if catching colds and things like that), while remicade and humira are fully systemic (target inflammation in the whole body). So entyvio is supposed to be much safer.

One of the reasons they'll make you try remi first is not so much cost....but I believe the requirement is put in place because of its relationship to tysarbi, which carries a pml risk. Entyvio didn't have any reports of pml but the concern was raised and they're being extra cautious at the beginning.

Of course...I could be wrong. But I do remember reading something like that.
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