Well we are running out of things to try now that Caitlyn had an allergic reaction to the cimzia.
Has anyone's kids tried stelara or entyvio?
Has anyone's kids tried stelara or entyvio?
Kathy,Yes, my son started entyvio August 8th. The thread on here has all adults and I don't care for it. My son has no bad side effects from the infusions. Its the easiest so far. Its a 30 min infusion. He loves it over all the shots he was getting. As for if it is helping... Jury is out on that. My sons rectum was in such bad shape that they aren't sure anything but surgery will help. The mouth ulcers and his eyes cleared up while on this... His small bowel is still doing good. We head to Mayo in January and they are doing a colonoscopy and we'll know more.
Hello to all.tagging vtfamily I believe her son has been on stelera for quite some time now
There is a thread on here somewhere, tagging coltyns family, I think that's the only med they use and he's in complete remission now, he's fairly young too. As for how it effects developing bodies, as long as steps are taken to mitigate the psychoactive effects I'd see it being a lot safer than any crohns pharmaceutical as it's natural. Best wishes to you all whatever paths you take, hope your kiddies find remission very soon!Problem with MMJ in any form is it's still illegal in most states and not sure how it would effect growing developing bodies.
Since there aren't any kids on Vedo here.... I'm stuck looking at the adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel and something about the dosing. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here. I hope I'll be posting soon that Vedo finally kicked in. At least we still have Stelara in the wings... but you all know how hard it is to keep starting over with a new med.YES to Stelara! My daughter has been on it close to two years and is doing amazing! She failed all other biologics, and was able to have her ileostomy reversed because Stelara cleared up the inflammation in her colon when no other meds would. My insurance covered it also. I would absolutely recommend giving it a try!
That is totally how it is for us. Infusion done in the infusion ctr at the hospital... goes under our medical side of insurance. Only the injections that were delivered to our home were handled under our pharmacy side.So I was on the phone again with the insurance and her case manager came up with a plan. Since this is an infusion given in a hospital setting she is going to see if they can get it covered through medical benefits instead of pharmacy or combined with pharmacy. Hopefully they will figure something out. Keeping my fingers triple crossed!!!!
They have a program called Entyvio Connect Co Pay Assistance. But you have to be 18 yrs or older. I have exhausted trying to get them to add my son. Cimzia did the same thing but then changed their criteria. The case worker at Entyvio said that since this drug just got FDA approval for adults in June of 2014... they are being very strict so far with the 18yr old guidelines. Let me know if you hear anything different. The phone number for their program is toll free 855-368-9846 and open 8am to 8pm eastern time m-fDitto on the medical coverage here too. All DS's Remicade infusions are covered that way, plus Remistart.
Is there any manufacturer program with Entyvio?
Any infusion center can do it. IV... then give drug at rate on instructions! And any pharmacy should know how to mix it and get it ready. That has got to be so frustrating. So are you saying you have pre authorization done... just waiting on where to do it?Brian'smom,
The GI office is a huge part of the issue. Now they are saying they are not sure where we can give her the Infusion they have to set it up. I am like you have patients on remix add right? Yes. So wherever remixade is done we can go to do it.
Well it has to be set up it is a New drug etc etc. ugh!
If she's failed the other ones, Remicade, Humira, Cimzia (which she has) the age shouldn't matter.Hi All,
So My daughter's doctor called last night. She apologized and said they have been trying to get the entyvio set up but the hospital has been giving them issues because she is under 18 and it is not approved for under 18.
Anyway the office is trying to work it out but it is very complicated.
Hang tough! There has to be a good reason that so many GI docs are excited about Vedo. They just have to help the parents advocate with insurance to make it happen. Unfortunately, subscribers have very little power with the insurance companies alone.Brain's mom,
This whole thing hias been beyond complicated. It is ridiculous. I have given up at this point.