HealingWell
Search Close Search
☰

My entyvio experience.

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
1 2 34 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/15/2014 9:10 PM (GMT 0)
I have still not started my Entyvio. I need their co pay assistance, and they are having a hard time finding a pharmacy that will bill me properly :( I just want to hurry up and start this and then hurry up and find out if it works!!!!!
Posted 9/28/2014 9:48 PM (GMT 0)
How is everyone doing? I am at 5 mg on Prednisone and have had some blood come back. I am going 3 or 4 times in the morning then I am usually done until the next day. So no remission but I'm not as bad as before I started the pred and entyvio. I've had 3 doses and my next is in mid October
Posted 9/28/2014 9:54 PM (GMT 0)
I still haven't started. Apparently the co pay assistance only works with certain insurance companies. It doesn't work with mine. It would cost me over 6 grand per infusion, which is not something I would ever be able to afford :( I have an appointment with my GI this week to establish what my next step is going to be and I am trying to look into other insurance options. Being sick is far too expensive and I just can't keep up!
Posted 9/30/2014 12:48 AM (GMT 0)
I got one shot down, 2nd one this week. Eh, I don't feel much improvement, but I'll keep on hoping.

Dumb question- the positive effect of the entyvio should be strongest right after an infusion, right? Like, after each passing day after an infusion, you shouldn't expect to see improvements when there were no improvements the first days after each infusion.
Posted 9/30/2014 7:44 PM (GMT 0)
Dusty - evidence is showing that Entyvio takes a long time to work. Most recent study showed no real benefit over placebo at 6 week mark, but definite benefit at 10 week mark. I listened to a podcast interviewing the study lead from Mt. Sinai. He believes that Entyvio gets more effective over time. So, no, the positive effect may not be strongest right after the infusion. Patience is key with this drug. He also noted that people who had failed anti-TNF treatments took longer to respond on Entyvio but eventually did respond.
Posted 9/30/2014 10:47 PM (GMT 0)
Has anyone here tried the anti-Map therapy?
Posted 10/2/2014 1:24 AM (GMT 0)
bania- thanks for answering my question. I'm staying hopeful. If nothing changes by the end of the year, then I'm going into despair mode.
Posted 10/3/2014 3:10 AM (GMT 0)
I'm at 12 weeks and still no improvement. In fact, last few weeks have taken a turn for the worse. I am in the failed all anti-TNF treatments category so maybe it will eventually kick in. Doctor said to give it 6 months.
Posted 10/3/2014 7:59 PM (GMT 0)
I have to agree with the slow onset of entyvio. I am on week 9. Not a lot of improvement yet.
Posted 10/4/2014 1:05 AM (GMT 0)
Over from UC….I'm at week 9. Not a ton of change yet either. Saw my GI today for a regular office visit and he said to give it more time.
Posted 10/22/2014 4:45 PM (GMT 0)
shibby22 what medication did your doctor put you on in stead of Entyvio?
Posted 10/28/2014 9:57 PM (GMT 0)
This is a good trail of info. Could you provide an update and how things are.
Posted 10/28/2014 10:11 PM (GMT 0)
16 weeks still no changes for me :-(
Posted 10/28/2014 10:29 PM (GMT 0)
That sucks. considering my Dr. selling point was this drug helped the most severe cases of CD.
Posted 11/6/2014 4:20 PM (GMT 0)
I posted in another thread, but wanted to give some hope to those that are considering or getting ready to take Entyvio. I'm getting some response after 6 weeks. Nothing too crazy, but def. similar to what I experienced with Remicade. Hang in there the rest of you...
Posted 11/6/2014 6:39 PM (GMT 0)
Works for me
Had 3rd infusion last Friday.
Pred taper to 20 and below successful for first time. Never could get below 30 until this week
Improvement has been slow but steady since first infusion but now after 3really noticeable
BM better, urgency gone, Even the fistula is improving!
Zero side effects
Good luck to everyone
Posted 11/9/2014 8:36 PM (GMT 0)
Great that it is working for you Old Cronie. One thing I have noticed for me is that a couple days after the infusion I do a bit better, but so far that ends within a week or so and I go back downhill. I just had my fourth infusion (week 14) and I'm hoping to stay up the hill this time.
Posted 11/19/2014 3:55 AM (GMT 0)
jcarrol01

I posted in another thread, but wanted to give some hope to those that are considering or getting ready to take Entyvio. I'm getting some response after 6 weeks. Nothing too crazy, but def. similar to what I experienced with Remicade. Hang in there the rest of you...

Hi,
you mentioned similar to Remicade....what happened when taking Remicad ? Why did you switch to Entyvio? thanks...currently on Remicade...have had 50% improvement....just 4-5 times a day blood and mucus....bowel movement minimal...occasional setback...diarrhea for 2-3 days (twice a month)...I am happy at this stage for about 22 days a month I am functional despite diapers and constant gas(mucus)...I dread leaving Remicad for the unknown.....Dr has prescribed Entyvio for Dec 4th and has left me with this thought....why have discomfort to any degree when you could attai remission with new medication therapy of Entyvio.....would appreciate anyone's views on this predicament of mione....thank you
Posted 11/20/2014 11:02 AM (GMT 0)
My daughter just had her first infusion of this....going for second on Monday... She now is advised to stop all other meds except some vitamin pills

Humira was able to control 80% but her lower colon had stubborn colitis and would not budge....she however didn't have any flare up since she was on humirA....but I guess the doc wanted her in complete remission...keeping fingers crossed vedolizumab works...praying for the miracle to happen....

Except for extreme fatigue after 4 hrs of infusion which kept her on bed all of the next 36 hrs....she is noticing a small reduction in pain when she activates her bowel...

Still keep worrying also of her iron levels dropping and needing iron infusion regularly

Hopefully this new drug which is now on phase 3 trials offer more option b4 the doc chooses to use the knife
Posted 11/20/2014 8:31 PM (GMT 0)
Hopefully the Entyvio works for your daughter! If the doctor suggests the knife and you and your daughter are not comfortable/disagree with it, do not hesitate to get a second opinion. Surgery is a big deal and some doctors go to it before they should. Case in point- ME. I had a gastro that thought I had ulcerative colitis and suggested a colectomy. Turns out I have Crohn's colitis and it may not have "cured" me anyway. Doctors do not always have the right answer.
Posted 11/21/2014 5:42 PM (GMT 0)
I did finally start the Entyvio, I had my second infusion yesterday. My only question is, has anyone on this experienced an increase in anxiety at all? Over the past two weeks I have noticed I am quite a bit anxious. Nothing else has changed for me, so I'm not sure if it's the Entyvio or maybe I've developed another deficiency. I've had no other noticeable side effects.
Posted 11/21/2014 6:14 PM (GMT 0)
I have not noticed any anxiety to date.
Posted 11/21/2014 7:30 PM (GMT 0)
I have already 2 infusions of Entyviio. I have not experienced any increase in my anxiety levels either. If anything, I think I have less anxiety as I know I am on a path to what potentially could be my recovery & remission.
Posted 11/21/2014 10:07 PM (GMT 0)
Hi Everyone - My first time on this blog and suffering with Crohn's for over 20 years. Remicade worked for me for 6 years but I have to get off because with a lack of immune system, I have developed a couple of nasty infections that have been serious.

Now my doctor wants to go to Entyvio and I can't understand if I will be facing the same issues. I have read all the side effects and it does not seem to be safe. I see that some people have some anxiety but has anyone experienced any other side effects?
Posted 11/21/2014 10:45 PM (GMT 0)
Thanks {{crohns}} for your advise..will definitely take another opinion...

Achi1968..... Unlike some people on this thread, my daughter had her first infusion last week and will have one next week....she experienced extreme fatigue for the first 2 days but since been normal...can tell u more after her second one next week.

I am made to believe that vedolizumab is not an immune suppressant drug...so hopefully it should help you
✚ New Topic ✚ Reply
12345