Started Entyvio

Hey everyone, it's been a LOOOOOONG time since I've posted. Well long story short, my doc and I are moving on from Remicade, my doc and another from the University of Miami feel it's working but only to a point and not working to the full potential of the drug. I keep getting episodes where the diarrhea kicks in and the urgency and the occasional issue with me not able to control my bowels. Just last week I started Entyvio. My doc had to contact my health insurance directly just to get approval as I was initially denied. I got it done last tuesday an my next dose is next week. I'm currently dealing with diarrhea that just wont stop. I was just put back on prednisone to try and slow it down as immodium and lomotil is not making a dent. I'm going about 7 times a day and have had a couple "accidents" over the last week. Other than that I'm not seeing any bleeding or mucus. I'm hoping this works as we're running out of options. I see my GI again on Thursday this week. I had no issue with the first infusion...just some minor body aches, a few chills and a headache but that passed in a couple hours. That's all I got for now, I'll update as my treatment progresses with this new drug.

Good luck...it seems to be a slow working drug so it probably won't work overnight for you but hopefully you will start improving as you go through the loading doses.

Indycat23 said...
Good luck...it seems to be a slow working drug so it probably won't work overnight for you but hopefully you will start improving as you go through the loading doses.

I heard around the 3rd or 4th dose is the magic one. I need to ask my doc if there is a specific test he does to check to see how well the drug is working.

My nurse also told me, if the drug doesn't work after a certain number of infusions, it gets stopped

Katmom said...
Are You with Dr M A at UM? If so, she is quite expert at understanding the inner workings of each biologic. She was the one who retried Remi at double dose for my daughter. She also knew in advance that there would have to be bridge therapy while waiting to Entyvio to work, it is MUCH slower than Remi. We were told that if there was no improvement at week 10, to throw in the towel, and my daughter was just too sick to make it any longer. Do whatever you can to control the flare, add the steroid enemas too. Probably a good time to understand where you are at with updated blood work and scopes to see where the inflammation is. Might help understand the next steps.

That's exactly who I saw at U of M. My doc knows her well and they have worked closely together on my colitis. She is very thourough.

Captain Slow said...
Good luck on the Enytvio. I have completed the 2nd infusion. It seems to be helping but I am not 100%. Several more infusions until I make a decision one way or another.

I was told they will stop it with me after a certain number of infusions...it wasn't that many before they cut it off if it's not effective

notsosicklygirl said...
I hope it works well for you! Did you try humira or simponi?

I haven't tried either of those...I know humira was mentioned in the past but can't remember why we didn't go that route, it may of been an insurance issue. My doc feels that if this doesn't work then it's Surgery again as the final option.

I just had my final loading dose of Envytio. I have seen some improvements. When I started it I was 95lbs and very weak. I could barely walk up my stairs. Since I started, I have been able to gain 15lbs and have my energy back. Unfortunately, my stomach hasn't followed suit yet. I still have urgency and have to take imodium whenever I leave my house. I am just at 6 weeks on Envytio and hoping that my bathroom trips will improve. Really don't want to have make the surgery decision. Just trying to get thru the holidays. Is there anyone put there that has gotten into complete remission with Envytio and if so, did u have to combine any other drugs to get there?

Good luck! I had my 4th dose two weeks ago. I've had a good # of side effects and not much relief (hopefully you will do tons better!). I have a 5th infusion scheduled before the end of the year.

The infusions themselves are super easy. In and out in no time!

Entyvio is a good drug, you just have to be patient, or rephrased ,you have to be healthy enough to achieve remission.( My d was too far gone. If there is is lesson,try to not hit bottom, lol, before trying a newly approved drug!)
If you have any improvement, that is a good sign. I have confidence in you last posters, yeah for you !!

entyvio seems to be working for me. finished my last loading dose... it slow but oh my gosh... so much better. I pray for all of us who need it that it works for all of us. Too many poops to count before now am and pm. No bleeding... no pain.... Yeast skin problems and sinus... but I can deal with that

Hey everyone, just to update...it's been a week since my second dose and I've had very good improvements. I was going about 7 times a day with watery diarrhea and urgency that I couldn't control. Over the last three days I'm now down to one, maybe two trips to the bathroom with no urgency at all. I've started to decrease my prednisone from 30 down to 20. I'm due for my next infusion on the 8th. So far so good!

I pooped normally today o_O

That's all
:)

Great news Blksteeda!!! Hope this continues for you!!!