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Update: Still in remission 1 year after starting Xeljanz!

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Ulcerative Colitis
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/5/2022 11:23 AM (GMT -8)
I just did my routine labwork my GI orders every 4 months. CBC, CRP, CMP, and lipids are all normal. My white blood cell count was so low, I worried something was wrong at first. Ha. I got used to seeing it much higher for so many years. Still waiting for calprotectin result, but I feel well and expect it to reflect that.

I still take oral mesalamine as well. Too scared to try getting off of it even though my GI said I could. Don't need enemas anymore though, which is nice after 14 years of those! Very grateful for Xeljanz. Hoping it continues to work for a long time (knocking on wood as I type this post...).
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2580
Posted 7/5/2022 11:53 AM (GMT -8)
woohoo! that's great news
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Kevin_H
Regular Member
Joined : Feb 2022
Posts : 24
Posted 7/5/2022 12:28 PM (GMT -8)
Big congrats on that....ive follewed your posts Sara over the last year....

1) u had worries at various times that the UC was returning....were these all blips or minor setbacks along the way?....
2) also can u say if u have experienced any side effects on the drug?
3) Has the drug cleared up any extra-intestional symptoms like joints, eyes or skin problems you were having
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/5/2022 2:15 PM (GMT -8)
Mom: Thanks!

Kevin: Thanks! They were very short-lived blips that amounted to nothing and were usually after I had missed a couple doses of my medicine. I always went back to normal within a day or a few days. I was probably being overly paranoid. No side effects. I never had extra-intestinal symptoms so I can't comment on that one.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 7/5/2022 7:12 PM (GMT -8)
Thank goodness! I remember when you thought you were at the end of the line. So great that you're doing so well for so long.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2469
Posted 7/6/2022 4:21 AM (GMT -8)
This is great news, Sara!! May this last a long long time!!

I was very hesitant to stop using oral mesalamine too. Doc told me I could just stop, but I think I have PTSD from the last horrible flare so I went very slow and only dropped 1 pill every month or so. After I got down to 2 pills/day for a month I just stopped. I was using the 800 mg mesalamine so was on 6 pills/day and it took me a long time to stop them. It's been 3-4 months since I completely stopped and all is well.
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Rusty Barr
Regular Member
Joined : Feb 2016
Posts : 392
Posted 7/6/2022 5:18 AM (GMT -8)
Fantastic! I’m celebrating with you!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/6/2022 5:27 AM (GMT -8)
Thanks all!

CC: Yeah, I'll probably try reducing it again soon. I tried once and symptoms seemed to be returning a little, but I had a lot of other things going on at the same time, and it may have been nothing. I miss a lot of doses of it in recent months and am still fine.
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GrittyHope
Regular Member
Joined : Mar 2022
Posts : 86
Posted 7/6/2022 6:22 AM (GMT -8)
Adding my cheers to the crowd here. Such great news!
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 7/6/2022 9:12 AM (GMT -8)
Awesome you're feeling well and doing well re testing. Re wbc count being so low...still in normal range?

q
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/6/2022 9:27 AM (GMT -8)
Thanks, Gritty and quincy! Yes, they're normal. I had just become so accustomed to the WBC being higher for so many years that when I first looked at it, I had to do a double-take, ha.
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 7/6/2022 9:29 AM (GMT -8)
Yay all in normal range!
If you are going off the mesalamine, do it slowly.

Thanks for the update 🙂
q
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2570
Posted 7/6/2022 12:33 PM (GMT -8)
Oh that is great Sara! Now I can't remember, did you run into trouble when you tried quitting smoking? Are you still smoking? (This is not a "quit smoking!" post, I have been intrigued by the relationship between UC and smoking).
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U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1158
Posted 7/6/2022 6:03 PM (GMT -8)
Most excellent news Sara! The “R” club is pretty sweet!
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countess18
Regular Member
Joined : May 2016
Posts : 461
Posted 7/6/2022 6:35 PM (GMT -8)
Happy for you Sara! I wish us all long remissions!!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/7/2022 5:07 AM (GMT -8)
Thank you all!

Serenity: No, I actually usually flare when I start smoking (I am an oddball with this). I first got UC as a smoker. Symptoms improved when I quit in 2007 for 9 years. Then I started again in 2018 and went into a neverending flare and became steroid-dependant (until the Xeljanz). Quit again for nearly 2 years but was still stuck on steroids until Xeljanz. Then I foolishly started again last November. Had some mild symptoms return when I started but thankfully it never turned into much. I actually just finally quit again 16 days ago (had been trying ever since November but failed a bunch of times)! You have a good memory!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/7/2022 5:18 AM (GMT -8)
q: Thanks, will do. If I could take 6 pills of mesalamine daily instead of 12, I would be happy with that! I have to bring Pumpkin to the vet today and am an anxious wreck. She gets extremely agressive at the vet and we had a really bad experience with the last one. We're trying out someone new today. It's 45 minutes away though (one of the bad things about living out in the woods and 30 minutes from a medium-sized city), and she acts like she's dying even driving 5 minutes to a vet. She somehow hurt her leg a few weeks ago and it's making a clicking noise when she walks and she has developed a slight limp, but other than that, she acts normal--still jumps up on everything, plays a lot, tries to hunt stuff in our yard, eats and sleeps normally, doesn't act in pain if I touch her leg, etc. They are probably going to have to sedate her and take x-rays which we've never had before (well, I have, but she hasn't, lol). Pretty freaked out because she's going to be absolutely terrified.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2570
Posted 7/7/2022 6:19 AM (GMT -8)
Oh okay. Ha, I guess my memory is not that good since I got it mixed up. That is interesting that for you smoking makes things worse rather than better.

Hope Pumpkin is okay!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/7/2022 10:00 AM (GMT -8)
Yeah, it's weird. Well, you still remembered my smoking sagas, lol.

Thank you!
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1757
Posted 7/7/2022 10:17 AM (GMT -8)
Hi Sara glad to hear you're still doing well!

Xeljanz gave me my life back... as well as 3 more years (at least) of having a colon.

Am wondering do you have to do the mesalazine in the form of 12 pills? I take mezavant where each pill is 1.2g, so that's 4 pills once a day. They are huge but I've got used to swallowing them.

I'm supposed to wean off them but, I don't want to risk flaring.

Sorry about Pumpkin. If she's sedated she won't suffer. My dog is such a drama queen that we have to sedate her just to trim her nails (we combine it with other treatments like having a dental because otherwise it would be extreme to sedate her just for her nails 🤣).
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 7/8/2022 12:37 PM (GMT -8)
Hi Sara...how did Pumpkin do at the vet, and is there any insight as to her injury?
Can't blame her for not wanting to go to the vet 😳

q
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 7/8/2022 1:24 PM (GMT -8)
Late to the party but congrats on 1 year remission Sara! So happy that after all your struggles you found a med that works for you!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/8/2022 1:57 PM (GMT -8)
I wrote a long reply this morning to poopydoop and it doesn't look like it posted--ugh!

Thanks, poopydoop, quincy, and Flowers!

My calpro came back around 65, which is higher than that last few times. Does anyone think I should be worried? This test has not always been accurate for me, but usually it shows as low when I'm quite ill, so this is the opposite. But 65 still isn't very high, right? My GI hasn't said anything yet.

For anyone who doesn't care about my cat, you can skip this part, lol. Pumpkin was terrified, but she did alright. She was very agressive, like usual, so the vet sedated her with gas. First time we've done that and I was really nervous. The vet said she did well with the sedation and went right to sleep (or whatever, not sure if it's more like twilight sedation we get or probably even lighter than that). They were actually able to do a physical exam on her, which was nice! She has a partially torn cruciate knee ligament (similar to an ACL in humans), which was what I feared after doing online research. sad The vet said if she doesn't have surgery on it, it will eventually get worse to the point she won't be able to use that leg! She told me it wasn't urgent and to do some reading on the surgery. The thing that will majorly suck is after surgery, I would have to keep her very inactive for 6-8 weeks! No jumping or running or it would just tear again and we'd be at square one. My cat is very active and wild, so I feel like this would be extremely stressful for both of us, but if the alternative is she will no longer be able to use one of her legs, I don't see any other option. I may get a second opinion. I liked this vet a lot, but this is a huge decision, and I want to make sure this is really necessary. She's almost 11, but she's still really active.

She also said she has arthritis in both ankles. I requested bloodwork since she was already sedated, which they said all came back normal, and the vet said her heart and lungs sounded good! They were able to get all her vaccines done while sedated too, which was a huge relief because she was overdue for those. And I'm thankful she hopefully doesn't remember most of it since she was sedated.
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 7/9/2022 12:31 PM (GMT -8)
Yikes, not good news about the ligament tear. Seems surgery would be the only option for Pumpkin. Maybe checking out recovery suggestions, and her having a big crate would be of help to keep her contained while you arent at home?
Let us know yiur decision and what you've found out.

Hugs,
q
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 7/10/2022 9:03 PM (GMT -8)
Thanks, q. Yes, the vet said I'd need to put her in a large crate when I'm not home. Luckily, I work from home and don't go a lot of places these days so I'd be able to be with her almost all the time. But still, it sounds like it would be terribly stressful for both of us. Really sucks.
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