HealingWell
Search Close Search
☰

Anyone Taking Xeljanz???

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2017 7:31 PM (GMT 0)
I was just approved for Xeljanz. Nothing else is working not even prednisone. Has anyone else been on Xeljanz and had success? Or, not?
Posted 10/9/2017 8:44 PM (GMT 0)
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
Posted 10/9/2017 9:35 PM (GMT 0)
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.
Posted 10/10/2017 2:32 PM (GMT 0)
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.
Posted 10/10/2017 2:52 PM (GMT 0)
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.
Posted 10/10/2017 8:56 PM (GMT 0)
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.
Posted 10/10/2017 9:08 PM (GMT 0)
Good to hear! I hope this med will bring you of the dreaded steroid. Best of luck to you!
Posted 12/1/2017 4:30 PM (GMT 0)
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!
Posted 12/1/2017 4:37 PM (GMT 0)
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.
Posted 12/1/2017 4:45 PM (GMT 0)
StewieCat - I'm interested in an update on how the Xeljanz is working for you. How long have you been on it?
Posted 12/1/2017 5:05 PM (GMT 0)
Thank you for the update Loopchic. Keeping my fingers crossed for you.
Posted 12/1/2017 6:23 PM (GMT 0)
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.
Posted 12/1/2017 6:36 PM (GMT 0)
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!
Posted 10/15/2018 7:02 PM (GMT 0)
I just got approved for this. humira worked for a while and put me in remission but it came back. Remicade didn't work, stelara didn't work, simponi seems to be working a bit but it's bit bringing it home. Seems like the people who failed other biologics are getting results from this.
Posted 10/16/2018 5:17 AM (GMT 0)
I started Xeljanz about 7 weeks ago and it's worked better than any other medication. I no longer have the urgency I had. I previously had difficulty with longer than 30 second wait times before pooping regardless if I wanted to or not. I'm pooping less than 5x a day which is a massive improvement on the 6x on a good day. Normally, between 2-4 times now with a few days of diarrhea pushing it to 6. I've had blood in my stool a grand total of 3x since I started taking it which is less than the number of times I'd bleed in a day before. I had a lot of pain from gas when I first started taking it but that has lessened a lot and overall I'm very happy and thank God it's working.
Posted 10/16/2018 6:48 AM (GMT 0)
Did you try the other meds (humira, entyvio, remicade, stelara) and they didn't work for you either? Just trying to see the likelihood this will work for me when none of the others did.
Posted 10/16/2018 11:16 PM (GMT 0)
I have taken (2 1/2 years but taken off due to the severe weight gain and possible future complications and only brought stools from 20+ a day to around 10 or so a day and not a lot for urgency) Prednisone, Imuran (allergic reaction), Pentasa (did nothing but gave me a headache), Humira (did nothing for me), Entyvio ( worked somewhat to decrease stools but anywhere near enough and still bleed very often), and a Mesalamine suppository (caused serious pain when putting it in to the point that I was worried it was causing fissures but worked pretty well overall when I was able to force myself to take it).
Posted 10/16/2018 11:28 PM (GMT 0)
My diagnosis is severe Ulcerative Pancolitis. In order, I started with Prednisone and continued to take that while taking first Pentasa, then Imuran, and moving onto Humira. Finally, I used the suppository and Entyvio at the same time and then moved onto Xeljanz. Now I just have to wait for my colon to heal up a bit and my Doctor will start removing polyps cause he said they're precancerous. I was also told that this medication was my last option before surgery to remove my colon which would also take care of the polyps. I hope this information helps you out and that Xeljanz works as well for you as it has for me.
Posted 10/17/2018 4:51 AM (GMT 0)
Ah I'm surprised doctor didn't have you try other biologics. I've been on all the ones available and none have worked enough. Simponi is helping but not enough so now I'm trying xeljanz.
Posted 10/17/2018 11:11 AM (GMT 0)
I think if your resistance to 2 TNF blockers you're likely to be resistant to all of them similar to how they didn't work for you.
Posted 10/17/2018 12:37 PM (GMT 0)
I don't know. Some did do something. It just wasn't enough for me it was like it helped me halfway but not completely.
Posted 10/17/2018 1:35 PM (GMT 0)
I've noticed significant improvement within *days* on Xeljanz. Remicade did nothing for me and my GI said let's skip the Entyvio and go straight to this. I've been on 40 mg Pred for months, and before seeing the doc I dropped to 30 as Pred was destroying any energy I had and my eating was out of control... bleeding came back, frequency, urgency. Then by the 3rd day of Xeljanz all of that gone. Monday I dropped to 20 mg Pred (it'd been 1 week on 30) and still doing well. down from 10-12 BM a day on 40 mg to about 8 a day so far much less urgency. Now eagerly awaiting BCBS insurance approval as the samples I have will run out in about 40 days... I have severe pancolitis...
Posted 10/17/2018 3:53 PM (GMT 0)
Wow that's amazing. I really hope I respond to it like you did. My xeljanz is being delivered today. Wish me luck.
Posted 10/18/2018 5:56 PM (GMT 0)
If I may ask, for those of you that got approval for Xeljanz (I assume you are US based and are talking about approved via insurance), were any of you with Blue Cross/Blue Shield insurance? I'm trying to get a feel for if I'll have to go through appeals, about how long that will take, and what your insurance approval experience was... b/ I mean, Xeljanz is a fraction of the cost of Remicade for insurance companies and it's now FDA approved, ergo, what's the issue here, mr and mrs insurance? smile I'll hang up and listen. Thanks
Posted 10/18/2018 6:54 PM (GMT 0)
Xeljanz is more expensive than most remicade doses. Especially when compared to traditional remicade maintenance dosage like 5mg/kg every 8 weeks. If you are already at 10mg/kg every 6 weeks than that will be comparable in cost to xeljanz at 20mg a day.
✚ New Topic ✚ Reply
12