Anyone Taking Xeljanz???

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Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 10/9/2017 12:31 PM (GMT -7)   
I was just approved for Xeljanz. Nothing else is working not even prednisone. Has anyone else been on Xeljanz and had success? Or, not?
38 Year Old Female - Diagnosed with UC at age 12. Was in remission on Entyvio. Currently, in moderate flare while on meds.
Current meds:
Uceris - Becoming intolerate
Uceris Foam
Entyvio x 4 weeks
Daily - probiotic VSL#3

I've tried so many alternative treatment, diets and haven't had any success. I'm looking for suggestions. Help!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 10/9/2017 1:44 PM (GMT -7)   
Some have tried it, it's currently off-label for UC treatment so not wide spread in usage yet.

One success story that comes to mind is by user suzy-q.

www.healingwell.com/community/default.aspx?f=38&m=3600816
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You can't spell sUCks without UC.

Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 10/9/2017 2:35 PM (GMT -7)   
Thank you so very much for that link. Sounds promising. I'm really hoping that it will pull me out of this flare. I started Imuran again as that helped in the past but that takes so long to work. I hope I can switch to this new med and see some quicker results.
38 Year Old Female - Diagnosed with UC at age 12. Was in remission on Entyvio. Currently, in moderate flare while on meds.
Current meds:
Uceris - Becoming intolerate
Uceris Foam
Entyvio x 4 weeks
Daily - probiotic VSL#3

I've tried so many alternative treatment, diets and haven't had any success. I'm looking for suggestions. Help!

StewieCat
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 10/10/2017 7:32 AM (GMT -7)   
I started Xeljanz over labor day weekend this year. I had tried Remicade and Entyvio, both with and without immunomodulators (6mp/AZA/MTX) and nothing worked except steroids. Since I started Xeljanz my symptoms are much better. I'm going more than a normal person (3-6x/day) but it's better than the 25-40x/day I was going before this.

I've also been getting blood work done and my CRP is around 1, a marked improvement from the 20-45 I was at before.

The only thing to be aware of is cholesterol. Xeljanz can raise your cholesterol a good amount. Mine went from 145 to 200 from July to October, so make sure you're keeping an eye on it.

Overall though I'm very happy I'm on Xeljanz as it seems to be working.

Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 10/10/2017 7:52 AM (GMT -7)   
Thanks so much for your response. My meds will arrive this Thursday. I'm def hopeful after seeing your response as Entyvio and Remicade did nothing for me. I've been in a terrible flare for 6 months so I'm def in need of some relief. And, if I can feel a tiny bit better for the holiday season that would be great!

So, it's sounds like about a month until you starting seeing improvements in your symptoms? Is that accurate?

Again, I appreciate the insight.
38 Year Old Female - Diagnosed with UC at age 12. Was in remission on Entyvio. Currently, in moderate flare while on meds.
Current meds:
Uceris - Becoming intolerate
Uceris Foam
Entyvio x 4 weeks
Daily - probiotic VSL#3

I've tried so many alternative treatment, diets and haven't had any success. I'm looking for suggestions. Help!

StewieCat
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 10/10/2017 1:56 PM (GMT -7)   
I started noticing improvement after a couple of weeks on Xeljanz. I'm on a double-dose: 2x 5mg twice per day, which seems to be the dosing guidelines for UC.

I'm also tapering off of steroids, down to 20mg and hope to be off completely by the end of November.
37y/o male
UC - dx 2011
Active flare since March 2013
Entyivo

Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 10/10/2017 2:08 PM (GMT -7)   
Good to hear! I hope this med will bring you of the dreaded steroid. Best of luck to you!
39 Year Old Female - Diagnosed with UC at age 12. Was in remission on Entyvio and Imuran Combo. D/C'd Imuran and flared after 6 months. Currently, in moderate/Severe flare and have failed Entyvio/remicade/Steroid refractive/tacrolimus/lialda/uceris.
Current meds:
Cortifoam x 2 per day
Xeljanz - Just starting
Daily - probiotic VSL#3

Maria B
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 12/1/2017 9:30 AM (GMT -7)   
Hi Loopchic and StewieCat,

do you have any updates on your results with Xeljanz? My husband just got approval for it, after a history of failed biologics similar to yours.
Not sure maybe you posted results in another thread?
Thank you!

Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 12/1/2017 9:37 AM (GMT -7)   
Hi - After the first two - 3 weeks, I seen about 50 - 75% improvement in symptoms. Then, I seems to revert back. I was told that at 8 weeks you should see the optimal effect of the drug. At week 4, they increased my dosage to 15mg twice per day. Again, I'm at about a 50 - 75% improvement after the increased dose for 2 weeks. They are still hopeful I will continue to progress. However, I feel like it's getting me half the way there but it's still not kicking the flare completely out, which is frustrating because they are saying this is last resort before surgery.

I've been trying to follow the GAPs diet as best as I can this week, but it's very hard. I'm also taking alot of new supplements to see if they will also help. Additionally, I'm going to try making my own CBD oil this weekend. I'm in a lot of FB groups and so many people are getting into remission in non-conventional ways. At this point, I petrified of surgery and am trying all I can.

Even though I go to one of the top research hospitals in the country, I've also made a second opinion appointment at Mayo Clinic in January. I have to do everything I can to know I tried all I can to prevent surgery before it becomes a reality.

Loopchic1978
Regular Member


Date Joined Oct 2013
Total Posts : 27
   Posted 12/1/2017 9:45 AM (GMT -7)   
StewieCat - I'm interested in an update on how the Xeljanz is working for you. How long have you been on it?
39 Year Old Female - Diagnosed with UC at age 12. Was in remission on Entyvio and Imuran Combo. D/C'd Imuran and flared after 6 months. Currently, in moderate/Severe flare and have failed Entyvio/remicade/Steroid refractive/tacrolimus/lialda/uceris.
Current meds:
Cortifoam x 2 per day
Xeljanz - Just starting
Daily - probiotic VSL#3

Maria B
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 12/1/2017 10:05 AM (GMT -7)   
Thank you for the update Loopchic. Keeping my fingers crossed for you.

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 193
   Posted 12/1/2017 11:23 AM (GMT -7)   
My husband is on Xeljanz over 18 months now. He is still in full remission and no apparent side effects.

He started feeling better almost right away. Bleeding stopped after about a month and by 3 months he felt confident it was working. Had a colonoscopy 7 months after starting Xeljanz that showed total remission.

Hope it works for you!

Takes 20 mg -- 10 mg in morning and 10 mg in evening.
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Still tapering off prednisone .5 mg every 4 weeks. Developed osteoporosis due to steroids

Maria B
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 12/1/2017 11:36 AM (GMT -7)   
Thank you suzy-q. We had actually seen your story here and have been very hopeful because of that. I know it does not work for everyone but a success story is always very nice to hear.
I cannot imagine the relief it must have been for both of you to find something that worked.
Hoping we can share some success too!
Thank you!
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