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WEEK 6 OF ENTYVIO

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Ulcerative Colitis
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Posted 10/23/2014 4:00 AM (GMT 0)
Hello everyone. Just a update on week 6. Still seeing slow progress. 90% less bleeding, pain resolved. Can actually make it to work without a side trip to the bathroom or accident.  Accidents are not gone but greatly reduced. No liquid stools.  Not as many bathroom trips.  Still some mucos.... nasty stuff.  All week, able to sit through morning meeting without a exit to the bathroom.  Less cramping... now every3-4 day instead of all day. Entyvio is

Not as fast a remi but then did not get this overnight.  Feet are not swollen any longer since off simponi.

Still taking prednisone 15mg till dec.  Next GI visit in Dec.

Gas is still present .... some days not so bad and then others a pain.  Overall  better than before.

Hope everyone is doing well.  Entyvio users keep updating  us... it does help. Have learned so much from everyone.

Feel better... since reduced pooping but  Still old, fat and sassy.

 

Posted 10/23/2014 4:19 AM (GMT 0)
also week 6 (maybe 7) and very similar story. No prednisone (& no job to go to) but as you said, overall better than before. This is the first thing that has shown any sign of working for me but I can't tell if it is the Entyvio or the Imodium every few days (+ canasa & foam). Also scheduled for a scoping at 14 wks (Dec) and doing an info gathering session with a surgeon tomorrow. Hoping I'll never need his services.

Still... pretty happy. Thanks for letting me know that what I'm seeing is the same as someone else's experience.
Posted 10/23/2014 8:02 PM (GMT 0)
Week 18 here and just had my fourth infusion. Still on 5mg prednisone and looking to taper down to 4mg next week. My frequency hasn't changed (8-10 bm/day) and I can tell the rectum is still flaring because every time I go to the bathroom it stings when passing through. My goal is to get off a prednisone over the next month and a half and if things remain the same I'll deal with it. However, if things get worse being off of prednisone then I'll most likely opt for surgery come spring of next year. I've been yo-yoing on and off prednisone for over a year now and frankly I'm just tired of the side effects.
Posted 10/23/2014 11:15 PM (GMT 0)
Have you talked to your doctor about upping the frequency of your dosing to every four weeks? I'v read a few different things that say this can make a difference.
Posted 10/24/2014 1:30 AM (GMT 0)
Week 12 today. 4th infusion scheduled for the first week in November. Good days and bad days. The last two days have been bad days. Still holding out hope!
Posted 10/24/2014 6:38 PM (GMT 0)
Nearing week 10. Also have good days and bad days...been a bit of a roller coaster (it didn't help that I had a nasty cold 2 weeks ago, and I tend to flare-up after I get over such things - before that I seemed to have a very slow (VERY. SLOW.) improvement). Though I wasn't having any good days as good as they are now before I started, so I'm hopeful.
Posted 10/29/2014 2:53 AM (GMT 0)
I will be getting my 3rd entyvio infusio Nov 21. So far, it's been an extremely slow progression. I did notice improvement after my second infusion. Now that the duration is longer I can tell my symptoms are not wanting to calm down.
I have 4 to 5 BMs a day and wake up 1 to 2 times per night, no blood. Experiencing severe muscle pain in arms a legs, extreme fatigue (but could be the 12 hour shifts I work). Also, eye pain and vision loss.

25f dx in 2003 at the age of 14. No surgeries....yet

Failed remicade(reaction after 4th infusion) and humira stopped working after 4 years.
Reaction to VSL3
Lost a lot of hair from Imuran and 6mp
Lialda and asacol just don't work

Currently on entyvio, lomotil, and donnatal.
I also take metoprolol for my increased heart rate which is secondary to my UC.
Lexapro and klonipin (work wonders for stress).
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