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Xeljanz put me into remission!!!!!

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Ulcerative Colitis
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Posted 9/14/2021 6:06 PM (GMT 0)
I just got my calprotectin results back from last week and they confirmed how I feel -- normal!!! My bloodwork was also normal. Many of you know I spent most of the past 2.5 years on steroids (either pred or Uceris) while I went through and tried all the biologics and none of them worked. I was starting to have surgery consults earlier this summer. And then, like a miracle, Xeljanz worked. I don't want to jinx myself and I'm still terrified that it will stop working at any moment, but for this moment, I'm happy and wanted to share with you all. Most of my 14 years with UC, I had at least some symptoms when I wasn't on steroids. It's nice to feel normal.
Posted 9/14/2021 7:06 PM (GMT 0)
🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳

(I totally recognise the fear of not wanting to jinx yourself)
Posted 9/14/2021 9:26 PM (GMT 0)
Fantastic! I love hearing good news from members.
Posted 9/14/2021 9:34 PM (GMT 0)
I am so glad to hear this news, Sara. I've read your struggles and am (cautiously) optimistic to know you're finding lasting relief. Best to you and congratulations - you deserve a break!
Posted 9/14/2021 10:13 PM (GMT 0)
Whoop!
Posted 9/14/2021 10:28 PM (GMT 0)
And you started the Xeljanz on what date.
Also, you’re still taking 10/10?
Posted 9/15/2021 12:55 AM (GMT 0)
I started it on June 15. I'm still on 10 mg but my GI just wrote me and asked if I wanted to try dropping down to 5 2xday. I said I would do that if he recommends it. I'm nervous about it though.

I believe Xeljanz may have also nearly cured my migraines and also my pet allergies. I know that sounds crazy, but I've been severely allergic to cats and dogs since childhood. I have a cat and have to take Allegra and Singulair every day or I get really bad wheezing, sneezing, itchy eyes, etc. I have forgotten to take it twice now, most recently for over 24 hours and I never had any symptoms! I'll have to test it longer but usually, if I was even a couple hours late with my allergy meds, I'd know it. I'll try not taking my meds for longer, but I've been taking these meds daily for the past 10 years of having my cat!
Posted 9/15/2021 1:59 AM (GMT 0)
Wow -- it has maybe cured your pet allergies too??? I hope that really is the case and not some kind of short term thing. Let us know. In the meantime, congrats on your remission, that is awesome!
Posted 9/15/2021 2:05 AM (GMT 0)
Yeah and almost completely gotten rid of my migraines and headaches. I will let you know. I just Googled Xeljanz and allergy treatment and saw some studies about using it for topical allergy stuff and for asthma. I didn't get too far into it. Thanks so much, Serenity Now (you still have the best user name on HW)!
Posted 9/15/2021 2:49 AM (GMT 0)
How long have you been in remission? Rather than dropping down to 5/5, why not discuss going 10/5 for a few weeks, if things go well then go 5/5. You've had a rough time so it's just a thought.
Posted 9/15/2021 3:11 AM (GMT 0)
Great news Sara that Xeljanz is wofking for you!
I'm sure Pumpkin is ecstatic about you're also getting some exfra relief 😊

q
Posted 9/15/2021 3:13 AM (GMT 0)
Wooohooooo! That’s so great! I understand completely the exhilaration and also the fear at the same time! Good news is they both die down with time and you almost start to feel normal again. But every time I say that I still find myself crossing my fingers. 😀
Posted 9/15/2021 3:15 AM (GMT 0)
Thank goodness you're getting some relief. I hope it continues for the long-term. 😁
Posted 9/15/2021 7:04 AM (GMT 0)
The allergy thing is not crazy. I barely get hayfever any more, although that's not specific to xeljanz, it happened since I started on immunomodulators for my UC.
Posted 9/15/2021 10:24 AM (GMT 0)
Congratulations! Such wonderful news!
Posted 9/15/2021 1:44 PM (GMT 0)

Sara14 said...
I started it on June 15. I'm still on 10 mg but my GI just wrote me and asked if I wanted to try dropping down to 5 2xday!

So. That’s 13 weeks.

And you had a stretch In That 13 weeks when you were on prednisone, right?

(Just trying to set a baseline, as I pray to follow your lead)
Posted 9/15/2021 1:49 PM (GMT 0)
Great new!!! Xeljanz is an amazing drug. Works so quickly and can be so effective. My opinion is stick with the 10mg dose twice daily. Life is long. Why rush the lower dosage?
Congrats again!!!
Posted 9/15/2021 4:13 PM (GMT 0)
Thanks all!

quincy: Thanks! Pumpkin's birthday is coming up in about a month! Thanks for remembering. smile

poopydoop: Interesting about the allergies!

Susie: about 4 weeks with no symptoms. 9 weeks off steroids. Still had mild symptoms the first few weeks.

Rusty: Yes, I started a course of prednisone when I first started Xeljanz (probably about 4 weeks). I've been off steroids for a little over 9 weeks now.

Hugo: Thank you! My University of Chicago GI (I think you also doctor there?) is suggesting I try to go down to 5 mg dosage. I trust his expertise. He will monitor calpro and bloodwork after 2 weeks. I don't feel like it's a rush when most people lower the dosage after 8 weeks. I assume I can just go back up if symptoms come back? I am nervous about it though. Does going back up not usually work?
Posted 9/15/2021 5:21 PM (GMT 0)
Congrats! This was a long time coming and I hope it lasts a long long time.

As much as you have suffered to get to this point, I would be leery of dropping too quickly. Someone suggested doing 10/5 for a few weeks to see how it goes before going to 5/5. I have seen several here who tried to drop and had to go back up. I only remember 1 person saying that 5/5 is working for them. There could be more, but one person is all I remember seeing.
Posted 9/15/2021 5:27 PM (GMT 0)
Sara...so is Jurzi's. Will be 8. Time...yeesh.

Hope you can stay off steroids forever!
q
Posted 9/15/2021 5:38 PM (GMT 0)

CCinPA said...
Congrats! This was a long time coming and I hope it lasts a long long time.

As much as you have suffered to get to this point, I would be leery of dropping too quickly. Someone suggested doing 10/5 for a few weeks to see how it goes before going to 5/5. I have seen several here who tried to drop and had to go back up. I only remember 1 person saying that 5/5 is working for them. There could be more, but one person is all I remember seeing.

Thanks, CCinPA! I'm seeing a really good IBD specialist so I trust his guidance. 5/5 has been working for my boyfriend for the past nearly 2 years, so that's one more person, lol. smile

quincy: Aww! Happy early birthday to Jurzi! Yeah, the time goes way too fast. Pumpkin will be 10!
Posted 9/15/2021 6:02 PM (GMT 0)
This is great news! I'm very happy for you!
Posted 9/15/2021 8:29 PM (GMT 0)
I've been on 5/5 for 2 years but I had to add mesalazine enemas to keep things quiet.
Posted 9/16/2021 2:55 AM (GMT 0)
Thanks, Michele!

Thanks, poopydoop. I wouldn't mind using the enemas if I could drop down to 5/5. I've been doing them for most of the past 14 years anyway! No big deal by this point.
Posted 9/16/2021 4:36 PM (GMT 0)
Thanks, poopydoop .. I knew I saw someone on 5/5 dosing!

Sara -- good to know it's working for you BF too!!
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