Crohn's Disease Forum » Treatment » Clinical Trial: Filgotinib anyone?

11-04-2018, 01:50 PM   #1
Join Date: Oct 2013
Location: Indiana

My Support Groups:
∑ Stelara
Clinical Trial: Filgotinib anyone?

Is anyone on Filgotinib, a clinical trial medication? I have been on this trial for a few months and it appears I may have been on placebo as I have gotten worse. I am switching to the real drug in about a week (switching to the extended trial because of worsening of symptoms). Was wondering if anyone has tried this medication and what benefits they have seen. I do love that it is a pill and not an injection. Thanks!

Diagnosed: 2004
Abcess: 2011
TI resection 2013 (60 cm of small bowel)

Current: Filgotinib (clinical trial), Questran, B12 injections, metoprolol, sertraline

Past medications: stelara, methotrexate, pentasa, remicade, humira, cimzia, imuran, prednisone, entocort, 6mp
Adverse reactions: Entyvio, Remicade, Humira, Cimzia, Imuran, 6MP

Diagnoses: Crohn's Disease, Iron deficiency Anemia, B12 Anemia, Osteoporosis, Migraines, Anxiety
11-04-2018, 03:45 PM   #2
Forum Monitor
Maya142's Avatar
My daughter is the one who has Crohn's but I wanted to say that I have heard lots of good things about JAK inhibitors!! They're next in the pipeline for both Crohn's and Arthritis. Tofacitinib or Xeljanz is the one that was just approved for both UC and Psoriatic Arthritis (and has been approved for RA for years).

My daughter (who has both Crohn's and Ankylosing Spondylitis) has failed most biologics, like you. The next drug we try if her current treatment fails would probably be a JAK inhibitor. I have heard good things about them from both her GI and the multiple researchers we see for her arthritis (her AS is pretty severe, but thankfully her Crohn's isn't too bad).

Hang in there - I would guess you're on the placebo. Hopefully you'll be given the real drug soon!!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-04-2018, 08:25 PM   #3
Join Date: Oct 2013
Location: Indiana

My Support Groups:
∑ Stelara
That is good news! I am hopeful that it will help, it figures that I got the placebo! I had an 80% chance of getting the actual drug...but alas it will be soon. I have been traveling to Indianapolis every two weeks for the last number of months and it is three hours away. It is not fun! But, in a month it will switch to every three month. That will be great. I am hoping this works!!
01-13-2019, 01:35 PM   #4
Senior Member
exit4's Avatar
Join Date: Jul 2010
Location: Naples, Florida

My Support Groups:
I have started on the Filgotinib clinical trial 5 weeks ego. My urgency went down a little, but my frequency down dramatically! Down to one or two BM per day! No improvements with fistula so far.
Filgotinib study phase 2

Life is not about waiting for the storm to pass, itís about learning how to dance in the rain.

Crohn's Disease Forum » Treatment » Clinical Trial: Filgotinib anyone?
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