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Xeljanz here I come

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Ulcerative Colitis
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Posted 9/16/2019 8:11 PM (GMT 0)
I had a flex sig today. From the anal verge to 10cm I had ulceration consistent with Mayo 3 disease. Way worse then my January flex sig where it was only 5cm Mayo 1. Hey, I knew with my symptoms the proctitis had worsened.

Anyways, he gave me some Xeljanz and I am now going to try to see how it works. My next remicade infusion isn’t scheduled for a few weeks.

I hope for the best!!!
Posted 9/16/2019 8:51 PM (GMT 0)
Have you checked your levels of and antibodies for Remicade? How long have you been on it?
Posted 9/16/2019 9:10 PM (GMT 0)
2.5 years. It actually was doing well for me. I wouldn’t say that I was entirely in remission but darn close. Started having more urgency and blood over the last few months. Rectal meds just aren’t doing the job. Going to test the remi levels. The GI isnervous that I go cold turkey off remi and suddenly the pancolitis returns, hence I will be on two biologics temporarily.
Posted 9/22/2019 2:35 PM (GMT 0)
I wonder if it could just be a coincidence but 5 days into my Xeljanz experiment and my symptoms of constant blood and mucous has dissipated. Just a trace of blood. Seems like it would too quick for it to be the xeljanz?
Posted 9/22/2019 3:07 PM (GMT 0)
I think I heard Xeljanz can work quickly?

Anyway just wanted to wish you well. Remission-land is so nice! Hope I get to stay here for a long time. And you too!
Posted 9/23/2019 2:07 AM (GMT 0)
If you are lucky, the Xeljanz really can kick in pretty quickly, although it may take a few months for all symptoms to go (assuming it works for you). My husband says he knew within days of starting with it. Haven't heard of anybody being on two immuno-suppressants at once for UC, and when my husband went on Xeljanz he was told to immediately stop with the 6-MP. If the Xeljanz appears to be working then maybe you forego the remicade. You should discuss with the doc.
Posted 9/23/2019 12:28 PM (GMT 0)
When I first started with Xeljanz I had great results after 2 days and its been great ever since


Hugo18 said...
I wonder if it could just be a coincidence but 5 days into my Xeljanz experiment and my symptoms of constant blood and mucous has dissipated. Just a trace of blood. Seems like it would too quick for it to be the xeljanz?

Posted 9/23/2019 1:56 PM (GMT 0)
My GI was just concerned that if the Xeljanz didn’t work I would be entirely unprotected if I had no remi in the system.

I think the plan is if the Xeljanz works to stop utilizing the remi. The combination of a couple biologics at once is becoming slightly more common even though it a great deal of immunosuppressants.
Posted 10/4/2019 3:18 PM (GMT 0)
5 weeks on Xeljanz and I have my life back! No more adult diapers. No more accidents. --- I'm lifting weights again. I'm getting out of the house again with no worries. ------- I just hope I didn't jinx myself with this positive post. --- I forgot to edit my signature. (just on xeljanx and vitamins now).

Post Edited (EveryStone) : 10/4/2019 9:25:21 AM (GMT-6)

Posted 10/4/2019 7:28 PM (GMT 0)
That's great it's working for both of you! Hugo -- Are you still doing well?
Posted 10/5/2019 12:36 PM (GMT 0)

Sara14 said...
That's great it's working for both of you! Hugo -- Are you still doing well?

I have had to give up my Xeljanz for about a week because of an upcoming operation, so far so good but its only been a few days yet.
Posted 10/5/2019 1:39 PM (GMT 0)
Must say that after three weeks I have not felt better for over 3 years. It actually frightens me. On remi I felt good but I knew the disease was there on Xeljanz I feel like before I had the disease. If anything I wouldn’t mind going to the bathroom more. No blood, no urgency, no tenesmus.
Hope I am not jinxing myself!
Posted 10/6/2019 2:41 PM (GMT 0)
@Hugo18--- I can relate to your story. I failed remicade, humira and entyvio.(12 years).--- But now it's like I've never been sick. I sure hope this successful treatment continues. --- For now I'll be GRATEFUL one day at a time!
Posted 10/8/2019 7:51 AM (GMT 0)
Hey Everystone,
Wondering how long you have been on the Xeljanz? Did I work very quickly for you as well? Did you reduce to the 5?
Thanks.
Lorne
Posted 10/8/2019 2:38 PM (GMT 0)
I started feeling better and seeing some improvement after 3 weeks. I'm almost 2 months taking Xeljanz, and am probably 95% better. It really is an amazing drug.
Posted 10/8/2019 2:47 PM (GMT 0)
Wow. That’s amazing! Happy for both of you!
Posted 10/8/2019 2:48 PM (GMT 0)
Also ... can I ask about the cost? Curious!
Posted 10/8/2019 3:00 PM (GMT 0)
I get it all covered through my insurance - it's the only time it's ever happened. I don't even know why it's covered in full, but I'll take it for once!!
Posted 10/8/2019 3:59 PM (GMT 0)
How is this word pronounced?
Posted 10/8/2019 4:43 PM (GMT 0)
How to pronounce Xeljanz? Here's a video with it:
https://www.youtube.com/watch?v=ivua9pzqfy0
Posted 10/8/2019 6:17 PM (GMT 0)
Okay thanks. Similar to how I was pronouncing it in my mind, as it happens. Well, I had the "x" part slightly wrong. ;)
Posted 10/9/2019 5:05 PM (GMT 0)
@Hugo --- I had a fast response to xeljanz, My symptoms improved quickly. I started on 8/29 and I'm still on the 10mg twice a day. --- Now I just need for my blood work to come back normal. -FlowersGal wanted info on cost. I have a zero co-pay.
Posted 10/9/2019 5:15 PM (GMT 0)
Wouldn't it have been simpler/easier to just name it Zeljanz?! :-D
Posted 6/18/2021 12:41 AM (GMT 0)
How is Xeljanz still working for all of you? I also have a zero dollar copay with their copay assistance program.

Did anyone have a sore throat or fatigue when starting on it? I just started a few days ago but I've woken up with a mild sore throat each day since and today I've been super exhausted for no reason.
Posted 6/20/2021 8:33 PM (GMT 0)
Sara14, I have had a mild sore throat when I wake up since starting on Xeljanz, but haven't noticed being more fatigued.
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