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Entyvio Week 10

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Ulcerative Colitis
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Posted 10/14/2014 8:16 PM (GMT 0)
Just a quick update on Entyvio on Week #10. 

Just spent the last 4 days in the Adirondack Mountains with very limited access to restrooms.  Had about 3-4 bms per day..mostly two in the morning and 1-2 at night which is very good for me. I was able to "hold it" for a few hours while driving home yesterday too. 

Energy levels are really coming back.  Went hiking up a mountain while carrying my 40 lb, 4 year old for most of the way. Felt really strong while hiking and did not have any fatigue afterwards.

Back to work today, had a bunch of BM's in the morning. I'm starting to think that a big remaining hurdle will be dealing with anxiety.  Looking into meditation (not medication) to help with that.  Not a big fan of taking another drug.

This drug has worked the best compared to Remi, Humira & Simponi.  I am down to 2.5 mg of Prednisone every 3 days.  I will drop to 1.25 every 3 days for a couple of weeks and then hopefullty off forever.

  

 

Posted 10/14/2014 8:28 PM (GMT 0)
Those sound like promising results. Hope it continues to improve for you!
Posted 10/14/2014 8:34 PM (GMT 0)
Great news. I definitely think tackling anxiety will help as well.
Posted 10/14/2014 8:38 PM (GMT 0)
How great, Indy. Hope things keep looking bright for you!
Posted 10/14/2014 9:26 PM (GMT 0)
Awesome
Posted 10/14/2014 9:36 PM (GMT 0)
I am at week 8, and things are really looking up. I can tell there are some very positive changes happening, so I'm hoping that continues. It really didn't seem like anything at all is happening in the first 6+ weeks.
Posted 10/14/2014 10:11 PM (GMT 0)
Wow. Has it been that long already? Like to hear these results.
Posted 10/14/2014 11:44 PM (GMT 0)
Great news! I just hit week 10 too. Not waking up at night (big plus!). Still taking 1 imodium per day. But down from 4-6 imodium just to get out of house (another plus). I have good days and bad days. I have been getting out more. I went to the local fair w/ my family on Saturday and an outdoor birthday party Sunday. I've upped my workouts too. Trying to stay positive!

So glad you are feeling well!
Posted 10/14/2014 11:55 PM (GMT 0)
This is sounding great that everyone is slowly starting to see improvement. I hope it continues.
Posted 10/15/2014 12:41 AM (GMT 0)
A good friend has been in remission due to this drug. I really feel it is a great option. So happy that it is steadily working to bring you to the remission you deserve.
Best.
Posted 10/15/2014 1:11 AM (GMT 0)
Yay!

I'm hoping my next infusion gets me back on track. I thought I was doing better, but now that I'm cutting back on prednisone, I'm not so sure. I've only had two infusions. My third is coming up on the 23rd. I know it's early. I'm doing okay and I'm not returning to the problems that inspired the need for prednisone. That's a plus, right?
Posted 10/15/2014 3:30 AM (GMT 0)
I am between infusion #2 and #3 next one is 1st wk of Nov.  I really enjoy seeing everyone's progress. Mine  is slow but doing better. Can at least make it to bathroom most of the time rather than having 3 or 4 accidents per day. Diet really makes a difference. I wish I had better self control with my eating. My GI asked me to stay on 15mg pred. until at least Dec. I am so happy for everyone who is seeing progress with this new medication.  I hope and pray that it will work for everyone with horrible stuff (UC).
Posted 10/15/2014 12:33 PM (GMT 0)
Thanks everyone! Hopefully the progress remains slow and steady to remission. I'm targeting November 1st as the day of my last Prednisone dosage. You can't believe how incredibly excited I am to move on from that drug.

Pink-Not waking up at night is huge. It gives your body the needed rest to continue healing. Good luck on continued progress.

Spartan-anything that helps decrease the need for prednisone can be helpful. Good luck!

Monkey-Good luck to you! Have you tried adding rectal meds? They can help somewhat with urgency.
Posted 10/15/2014 4:22 PM (GMT 0)
That's great news!

I'm at Week 8, and I'd say that I think it's starting to do something for me. I think. I was noticing an improvement in energy (and both my coworkers and the nurses were saying I was looking better), but my third infusion knocked that out of me...oops. But it's coming back (I caught a really nasty cold last week, so that certainly didn't help). My days are starting to get a bit better (frequency and consistency), and the fact that I'm not flaring-up after this cold is huge for me (I always flare worse after catching a bug). Cautiously optimistic...it's been hard to tell since my Uceris use has been up and down lately...

It is so encouraging reading that people are starting to see results!
Posted 10/18/2014 7:21 PM (GMT 0)
Very encouraging news! Hooray!
Hoping you all keep us posted. I check almost every day for your news about Entyvio.
Posted 10/18/2014 11:53 PM (GMT 0)
This is great to hear! I go for dose number two this Friday--10/24/14. I am seeing, even after the first dose, some promising signs--definitely going less, much less urgency. I've been back on Pred (40mg) since early Sept, and have been able to taper down to 30mg with no ill effects. After 6 doses of remicade (3 double dose), I've had more progress with one dose of Entyvio, than I had throughout remicade. And I've read all the comments about the need to be patient with Entyvio--and I am---but boy, it's nice to see any positive signs!
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