HealingWell
Search Close Search
☰

Entyvio Tomorrow

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/14/2015 11:11 PM (GMT 0)
Starting Entyvio tomorrow, hoping to get some advice before hand, and maybe what to expect. Crossing my fingers, remi and humira Failed...........
Posted 4/15/2015 12:14 PM (GMT 0)
It's an easy and quick infusion, with no premeds. You will be fine afterwards to drive or work. Lots of info on the UC site, and there is a Facebook group, I think called Entyvio warriors that might give you additional info.
Posted 4/15/2015 5:07 PM (GMT 0)
Thanks for the reply, going @ 3pm est. X'ing fingers that this all works out..
Posted 4/15/2015 5:50 PM (GMT 0)
It has been very uneventful for me, no side effects. I hear that it takes 14 weeks before you see any changes.
Posted 4/15/2015 6:24 PM (GMT 0)
Good luck, let us know how it goes!! I am afraid I am on the road to Entyvio also!
Posted 4/15/2015 7:42 PM (GMT 0)
Can't wait to find out your experience with this med...I'm currently in remission on Humira but as we all know it's no guarantee so it's great to hear about new meds on the line that others are trying.

Hope you have great success with it!!
Posted 4/15/2015 9:51 PM (GMT 0)
Just got home. Worked myself up for nothing. Infusion was uneventful. about 50 minutes to an hour is what it took. Entyvio was 30 minutes to infuse, then they gave me 25-30 min of saline and I was on my merry way. Felt like a headache was coming on but nothing. Home now, tired but Im usually tired so I cant tell the difference. The only weird thing is, is that I feel like I have a headache but I don't have a headache. weird to explain, like a headache is coming on or something like that. Any hoot besides that incy wincy minor issue with the headache thingy all good so far. Still crossing fingers that this works. Time will tell.
Posted 4/15/2015 10:11 PM (GMT 0)
I got horrid headaches from Humira, someone at the UC forum mentioned taking antihistamines for it, I take one the night of my shot and it works for me. I know exactly what you're referring to about the headache, it feels like a dull and in the background trying to come on and for me they would to a horrible degree...the antihistamine works like a charm for me...just wanted to share in case it's the same type of thing you're experiencing.

Feel better, hope it works for you and keep us posted!!
Posted 4/15/2015 10:44 PM (GMT 0)
I popped a Claritan this morning before I went for the infusion. Maybe that why its there (dull).
Posted 4/16/2015 9:59 PM (GMT 0)
Day 2 feeling pretty good. Only went 3x's as opposed to double digits. Still blood and mucus. Eyes felt strained all day.
Posted 4/22/2015 5:36 AM (GMT 0)
Finished up my 6th infusion of Entyvio about two weeks ago. Only side effects I've observed is a bit of weakness that always wears off by the next morning. My gastro & surgeon don't seem too optimistic about it's potential, but everyone who works closly with the drug swears by it. After the medicine is prepared for infusion, it's as simple as sitting in a chair watching TV while the medicine infuses over 30 astonishingly quick minutes. Just make sure the good folks at the infusion center take the needle out of your vein before they send you on your way. Got all the way home until I noticed, too. True story.
_________________________________________________________________________

Diagnosed CD '04, small bowel re sectioning in which infected 8" of small bowel removed in '05. 6 months remission (appx). All oral meds exhausted..pentasa, entocort, 6mp, asacol, cipro/flagyl for abscess, remi, humira, b12, testosterone injections, hcg, iron supp, calcium, vit. d & e, diet change, quit smoking cigarettes, alcohol, gluten, GMO, over 30 fistulotomy/rectal abscess surgeries.

Post Edited (PreMed122407) : 4/22/2015 12:30:01 AM (GMT-6)

Posted 4/28/2015 10:07 PM (GMT 0)
2nd Infusion of Entyvio. Nothing to report as far as the infusion. Don't have that non headache feeling which is a plus. but before I went I had unbelievable pain in my stomach area. Constant burping, nausea, and bloating. Kept forcing myself to burp which I think made it feel better. Also felt burning like heart burn but something was different about it. Just finished dinner and now im starting too feel that bloating disgusting feeling.
Posted 4/28/2015 10:27 PM (GMT 0)
Hmmm, you're keeping great track of your experience with it (much apprecitated!) I sure hope you do well with it and the side effects wear off as your system adjusts to it...hope it works that way. Keep updating, I think it's great to share your experiences especially while they are fresh. Glad the antihistamine sounds like it's helping with the headaches, and I know exactly what you're describing with what feels kinda like a background headache, I felt the same thing when I first started with the antihistamine (I only take one the night I do my shot and I take the antihistamine just before bed as they tend to cause some drowsiness) so I know exactly what you're referring to...it's a weird sensation for sure but now that I've take the antihistamine about 5 times now I notice that feeling is more vague and I can handle that over the horrid headaches I was getting...I've never really been one to get many headaches and when I occasionally did they were pretty mild in comparison to those humira headaches.

Hoping you find great success with Entyvio!!
Posted 7/27/2015 5:18 PM (GMT 0)
Just had my 5th infusion. Feeling pretty decent as far as my gut and bowel movements. This last one I went for it was done in an hour, and when they do it fast it wipes me out for some odd reason. Anyway I saw my doctor a few days ago and I told him that I'm losing feeling in my hands and feet, and he seemed very concerned. I'm also diabetic and I have been eating like a pig since I feel bad. I don't know if it diabetic related or infusion related. Also wanted to mention that my bones hurt as well. My finger bones to my should to my thigh to my ankle bones they all hurt. I mentioned this to my Dr and want me to see a RA Dr. I have been pushing that to the side..... Tired of seeing so many doctors..... Anyway just wanted to update and see if I can get some feedback on this..
Posted 7/27/2015 7:53 PM (GMT 0)
Sorry you're dealing with these issues! Hopefully it turns out to be nothing and the more infusions you get the better all will get but I agree with your doc about seeing a specialist for the pain in your bones...better to be safe than sorry...bone issues can also be an extra intestinal manifestation of having CD so another reason why you should see the RA doc...might be a good idea to get your diabetes checked out as well and see what if anything might be going on there (maybe med adjustments needed?)

I still get tired on occasion after doing my Humira shot, but no longer get the headaches as I make sure to take my antihistamine just before bed the days I do my shot.

Best of luck that Entyvio gets you into a full remission and you're able to stay on it with no issues!!
✚ New Topic ✚ Reply