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Xeljanz 14 weeks BUT don’t be too hard on me......I started smoking again!!

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Ulcerative Colitis
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Posted 8/24/2019 10:23 PM (GMT 0)
Hello I was hoping for some advice. I started Xeljanz 14 weeks ago after losing response to infliximab. I was taken off Azathioprine in preparation to start Xeljanz. Two weeks after stopping Azathioprine my bleeding got progressively worse. I went from a little bleeding to full on filling the bowl. Can’t trust a fart sort of flare up! However stools became more formed. Over the course of the 12/13 weeks I managed to wean down to 20mg pred but as things were getting worse I went back up to 40mg unfortunately it didn’t help at all. Strange as usually it sorts me out fast!

Last week I had a flexi sig to rule out other causes of bleeding but unfortunately it showed active moderate/severe UC. I was hoping for hemmies. My logic was at least that can be fixed!! Crazy I know!

So I’m my frustration I decided to throw everything at it.... including smoking. (Hangs head in shame) I have read up a lot on studies regarding smoking and UC so this was not a light decision.

I started Budenofalk foam enemas again. The foam has worked partially in the past but never completely stopped the bleeding.

This week since starting smoking after quitting for two years the bleeding has completely vanished. And I mean completely gone! Now I am wondering has the smoking really helped calm this horrible flare? Or has the Xeljanz finally kicked in?!?!

In the mean time I have had news that funding has been approved for my next treatment plan vedolizimab (Entyvio) so now I have no clue what to do!

Do I stick with Xeljanz and rectal meds?

This time last week I was begging to change treatment to get relief. Now I’m scared to mess with anything as I am finally feeling better.

Or is it the smoking I’m so confused! I know that logic would say stop smoking then you will know but I’m scared to end up back where I was a few weeks ago!

Thank you I’m advance for getting to the end of this post!
Posted 8/25/2019 3:09 AM (GMT 0)
I wish I had a magic answer for you (sadly I don't) ... but I'm wondering about the emotional effects of smoking. I have never smoked so I don't know personally, but as I understand it, smoking can sometimes help a person maintain a calmer state of mind. Do you feel calmer since starting smoking? Due to the mind-body connection, maybe being calmer helped the Xeljanz take effect a little faster. If so, maybe there's another way to achieve that calm without the cigs?
Posted 8/25/2019 6:16 PM (GMT 0)
Thank you for your reply onedayatatime99 I’m not going to lie I have enjoyed escaping my busy household for a few minutes of peace and quiet. Maybe there is something in that.
Posted 8/26/2019 6:53 PM (GMT 0)
Hi VickyUC, I'm in the same boat. I was never a heavy smoker (3-5/day), I quit cold turkey 10 years ago and developed UC 2 months later. I now hate smoking but if I'm in a flare and the usual drugs aren't doing their thing, I do find relief from 2-3 cigs a day. I've also tried vaping, not the same effect. It shocks me every time I go back to the cigs how effective they are. I have a lot of guilt associated with it, but I just try to treat it as medicine: stick to my prescribed regiment of 2-3 a day and ween off as soon as I'm back on an even keel. I ask myself, what's worse in the long run, this regiment or another round of prednisone? That's up for debate, but at least I can avoid the mood swings and moon face.
Posted 8/26/2019 8:37 PM (GMT 0)
Some have success with the nicotine patch.
Posted 8/27/2019 7:24 PM (GMT 0)

MariaMaria said...
Hi VickyUC, I'm in the same boat. I was never a heavy smoker (3-5/day), I quit cold turkey 10 years ago and developed UC 2 months later. I now hate smoking but if I'm in a flare and the usual drugs aren't doing their thing, I do find relief from 2-3 cigs a day. I've also tried vaping, not the same effect. It shocks me every time I go back to the cigs how effective they are. I have a lot of guilt associated with it, but I just try to treat it as medicine: stick to my prescribed regiment of 2-3 a day and ween off as soon as I'm back on an even keel. I ask myself, what's worse in the long run, this regiment or another round of prednisone? That's up for debate, but at least I can avoid the mood swings and moon face.

Oh I am still dealing with the moon face! Been on pred for almost a year. Finally off it now and I think it must have something to do with the smoking..... problem I have is that I quickly crept up to 6-7 a day!!

Any way I’m going back to my vape this week to see if things deteriorate I have to put it too the test one way or another. Wish me luck.

It’s madness that this actually seems to work for some of us.
Posted 8/28/2019 1:30 PM (GMT 0)
I would say stay on the Xeljanz and foam. Don't fix what's not broken.
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