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Ulcerative Colitis
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Posted 11/11/2015 9:06 PM (GMT 0)
Although I have been fortunate in that I haven't had major flare ups....just blood on the tissue.
Been onApriso, Uceris, canasa, and prednisone. When blood occurs, the pred is the only thing that works.
Now, my gastro dr. took me off Apriso and Uceris and tapering me off the pred.
He will now put me on the Entyvio infusion schedule. This will start ASAP as soon as all the blood tests and TB test results are in and reviewed.
My question is.........
Have any of you been on this and what should I expect?
I am quite nervous as I've read about the side effects.
Thanks for any info
nanaone
Posted 11/11/2015 9:28 PM (GMT 0)
There is lots and lots of info about Entyvio on this site-use the search bar at the top. There is also a Facebook group called Entyvio Warriors. Some doc's are using it before the other biologics, but I would have them explain to you why they personally think it is better for you than Remicade or the other anti-tnf's so you can weigh the options. Were you on Uceris and Pred at the same time? I would also ask if the last year's data shows if the Entyvio is best administered With another imumodulator. Not sure on that. It is an easy infusion and well tolerated.
Posted 11/12/2015 1:04 AM (GMT 0)
Often immunomodulators (Imuran, 6mp, or aza) are tried before biologics, like entvyio. Has your gastroenterologist talked to you about immunomodulators? They're generic medications and therefore inexpensive, about $200 a month.

Often remicade, humira, or simponi biologics are tried before entvyio. Entvyio is the most expensive of the whole lot of them. All of the biologics have patient assistance programs as they're multiple thousands of dollars per infusion. Remucade costs $3,600 for an infusion ever 8 weeks. I've heard entvyio is more than double that.

Certainly kind of odd to go straight to entvyio without first have trying any of those aforementioned treatments. Especially, for mild symptoms.
Posted 11/12/2015 1:11 AM (GMT 0)
I went to entyvio without trying other biologics or other drugs other than pred and apriso. Entyvio was chosen due to my steroid dependence and the hope that it would allow me to finally discontinue taking prednisone. I've done 3 infusions so far, before my last I had finally gotten down to 5mg of prednisone and then flared, so it isn't working yet but I have high hopes. I haven't really had side effects that I can pin down to entyvio other than fatigue after the infusion. I am starting to get hair loss I didn't have before and my moon face and weight gain have suddenly got much worse but I obviously think this is the steroids fault.
Posted 11/12/2015 2:02 AM (GMT 0)
It did nothing for me at all but I think you can expect a good outcome. The trials showed a high percent of successes. The infusions are very quick and easy. Hoping the best for you :)
Posted 11/12/2015 2:46 PM (GMT 0)
after 10 years of dealing with uc, i was put on entivio. actually having an infusion now. my uc is in complete control. my gi said he would say i am in remission. i would not go that far, but i am close. had no side effects so far. except for the cost, this is a God sent treatment. thankfully, my insurance covers most of the costs.
Posted 11/12/2015 7:35 PM (GMT 0)
I've had my 4th infusion. No change in my condition. As far as the side effects it's a well tolerated drug in that it works directly in the colon. Non-systemic. I did have severe flu like symptoms after my 2nd infusion but that could have been a reaction with another drug. Aside from a migraine after the infusion, I've been fine.

Good luck and I hope you find relief.
Posted 11/12/2015 10:01 PM (GMT 0)
Thanks everyone for getting back to me regarding entyvio.
I am in process of taking ALL the MANY tests and shots before starting.
Needless to say, I am very nervous about starting. I have been VERY, VERY fortunate in that I have never had a full bloom flare up just blood on the tissue and now feel terrific. No blood on the tissue as of late. But, I was told that's because the prednisone is working....20mg and going on 10mg Saturday.
I spoke with the dr. and have been tempted not to start entyvio....but, he still feels I should.
One response stated that she had weight gain and full face as a side effect....I certainly would not need that!! Most everyone seems to get severe headaches...gads, yuk!!!
Been on Apriso and wonder if it did help.
Yes, I am nervous and afraid of side effects.....I'm feeling really good now and haven't seen any blood
on the tissue!!!!!
Thanks
Nanaone
Posted 11/13/2015 11:31 AM (GMT 0)
I have been on Entyvio for 11 months now failed all other Meds and Remacade
It has been a life saver for me .
I did gain weight but I needed it had lost 30 LB s
Now weigh 115 which is perfect for me
So don't be afraid of Entyvio turn
Posted 11/13/2015 5:12 PM (GMT 0)
All the blood work, etc. are now finished and the next step is to start.
YES, I am very nervous........
Certainly not looking forward to any side effects...don't want to gain any weight...or any of the other side effects.
Having read all your comments I have sort of an idea as to what to expect....not looking forward to it!
Anyone out there who has not had any problems....weight gain, etc?
Thanks everyone.
Nanaone
Posted 11/13/2015 5:37 PM (GMT 0)
Biologic medications, like entvyio, are the furthest possible thing from prednisone (which gives everyone side effects). Rather, with biologics side effects are extremely rare but serious (often less than one percent of patients experience them). I'm not as familiar with entvyio as I am with the other biologic, otherwise I'd cite exact odds.

Generally, when you arrive expect them to prepare the entvyio medication in an IV bag. The nurse will set the IV, a tiny needle prick. The infusion lasts for half an hour and has no noticeable sensation. Afterwards, the nurse removes the IV, applies a bandaid, and away you go.
Posted 11/13/2015 6:15 PM (GMT 0)
I have not had any side effects from the prednisone.
I've gone from 30mg-20mg-10mg-5mg and then off. I AM VERY worried about the side effects from entyvio. Can't afford weight gain...or any of the other ones.
I HOPE the decision of starting me on this is a wise one, since I have been SO VERY fortunate in that I have NOT had any full blown flare ups...
The doctor just wants me off the pred and any of the other meds. I like this dr. and have faith in his judgement. I have discussed my concerns and he feels this will be okay.
NOT looking forward to starting on entyvio.
The pred works VERY well and I have no blood on the tissue now. I'm able to have a glass of wine each evening and able to have regular coffee...not decaf...again. YEA!!! I've been able to eat all the foods I like and told just to stay away from the very spicy foods.
Thanks everyone for your comments.
Nanaone
Posted 11/14/2015 2:02 AM (GMT 0)
Third Entyvio infusion completed. No problems with it.

And I've had bad side effects from almost everything else...
Posted 11/14/2015 7:58 PM (GMT 0)
So very happy to know you've had no problems!!
I am now down to 10mg of prednisone....off of everything else
(Apriso, Ucersis).
I feel terrific and am so concerned about starting Entyvio. But, dr. wants me off the steroids altogether.
Since I have confidence in him, I guess I'll go on with it.
Thanks
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