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Has anyone restarted Rinvoq?

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Ulcerative Colitis
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A.Carter
New Member
Joined : Dec 2022
Posts : 10
Posted 12/20/2022 6:03 AM (GMT -8)
First time post-long time reader. I hope I post this correctly.

Question: has anyone stopped Rinvoq and then restarted at a future date? I want to get off the medication to become pregnant. I don’t have many medications left to try and might need to get back on Rinvoq and pray it still works the same as it is now (putting me in remission). Thank you.


For more details:
I’m on Rinvoq 30mg for maintenance of my mild/severe pan colitis. I have been through a lot of meds and don’t have many options left (Stelara is pretty much my last option and my doc doesn’t want me to get my hopes up about Stelara since I’ve been on stronger stuff and failed).

I’m considering pregnancy but I would need to be off Rinvoq as it is not considered safe.
My doctor suggested that if I wanted to we could switch me to Stelara as I can get pregnant on that medicine. If Stelara fails I can hopefully go back to Rinvoq without a problem and it still would work.

Has anyone had experience with restarting Rinvoq with success/no success?

My journey has been wild like many of you on here. I thank you all for sharing your stories and helping me in the past (and I’m sure the future) through tough times so I didn’t feel alone or helpless.

Post Edited (A.Carter) : 12/20/2022 6:09:12 AM (GMT-8)

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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19333
Posted 12/20/2022 7:38 AM (GMT -8)
We only have a few members on Rinvog currently, it's so new no one has stopped it & resumed it at a later date.

So sorry that you are finding yourself in this situation. Good luck with whatever you decide. Welcome to the forum.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 266
Posted 12/20/2022 10:37 PM (GMT -8)
Should be no reason it wouldn’t work again.
I am on it currently.
Didn’t know there was an issue with pregnancy and JAK inhibitors.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 266
Posted 12/20/2022 10:39 PM (GMT -8)
Sorry I just read about the concerns.
You should be fine to retake it.
If you want to go on Stelera be aware it takes longer to be effective then Rinvoq.
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A.Carter
New Member
Joined : Dec 2022
Posts : 10
Posted 12/21/2022 7:28 AM (GMT -8)
Thank you for the replies.
Hugo18- I have seen through the posts that you are one of the few currently taking Rinvoq. So I appreciate your posts and starting topics on the subject. I have been on Rinvoq for almost 7 months now.
I can’t speak for all JAK inhibitors not being safe for pregnancy. But Rinvoq is definitely a no no.
I’m lucky to have access to doctors who specialize with pregnancy and IBD. But Rinvoq is so new that even they don’t have all the answers.

Post Edited (A.Carter) : 12/21/2022 7:33:41 AM (GMT-8)

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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1799
Posted 12/21/2022 8:01 AM (GMT -8)
For those who are wondering (not the OP) this is the deal on rinvoQ and pregnancy:

//In animal studies, this drug administered at exposures equal to or greater than approximately 1.6 and 15 times the maximum recommended human dose (MRHD), respectively, resulted in dose-related increases in skeletal malformations, an increased incidence of cardiovascular malformations, increased post implantation loss, and decreased fetal body weights. There are no controlled data in human pregnancy. It is not known whether this drug can cause fetal harm or adversely affect reproductive capacity in humans.//

On that basis I would personally also not use it (or any of the jak inhibitors) during pregnancy, and I'm on xeljanz.

Perhaps a bigger question for the OP is what will you do if you start to flare during pregnancy?
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geezernow
Regular Member
Joined : Nov 2017
Posts : 312
Posted 12/21/2022 5:56 PM (GMT -8)
I was on the starter dose of Rinvoq for one month. Due to insurance issues at the time, I had to switch to Zeposia. Finished the starter dose of Zeposia and had to stop Zeposia due to heart doctor's instructions. SO, I was finally approved by my insurance for Rinvoq. I've been back on it for a week now and all is fine. IF you stop Rinvoq, when you restart it is my understanding that you begin with the starter dose all over again. Best of luck to you.
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A.Carter
New Member
Joined : Dec 2022
Posts : 10
Posted 12/21/2022 8:57 PM (GMT -8)
Great information.

Poopydoop-that is a great question…what would I do if I flared during pregnancy ?
The best case is if I could get into deep remission (not exactly sure what qualifies as deep remission) on Stelara and get through the pregnancy. But if I DID flare, there would be no other safe medication to turn to- Ah that would be scary! Thanks for your perspective.

And geezernow…what a nightmare juggling insurance and doctors orders, that must have been frustrating. Thanks for sharing your experience…that actually answers my question. How long was your break from Rinvoq?
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geezernow
Regular Member
Joined : Nov 2017
Posts : 312
Posted 12/22/2022 5:40 PM (GMT -8)
about a month. Only side effect has been a few 'zits'. LOL Acne is one of the most common side effects of Rinvoq. Best of luck to you in all.
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tonito
Regular Member
Joined : Jul 2011
Posts : 58
Posted 12/23/2022 10:22 PM (GMT -8)
Carter, see my different posts on it.

I started to flare after being on Humira monotherapy for five years. I started to develop antibodies and a Fecal Calprotectin test was 6580! My GI wanted to add Immuran to the Humira because he thought it could wipe out the antibodies I had developed. I refused because that medicine (Immuran) is not particularly safe and gave me brutal nausea in the past.

So we went for Rinvoq at my request. After three days my poop was almost back to normal. After three months my Calprotectin had lowered from 6580 to 180, and then a colonoscopy four months later showed that I was in remission (Mayo Score =0). I think this is the best UC medicine out there. There are some side-effects. For me, the first 8 weeks at 45 mg. made me feel weak and gave me acne. But that resolved when I went down to the maintenance 30 mg. daily.

So far it's been eight months and I live a normal life. I would encourage you to try it, always remembering that it is not 100% effective for everyone. But it's worth a shot! Best wishes.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 312
Posted 12/24/2022 3:14 AM (GMT -8)
tonito.. That's GREAT news. I thought It was 'all in my mind' that things went back to normal after beginning Rinvoq. For me, it was about two days; since all the information they provide says it will take a couple of weeks to work. It is SO good, being out of a flare. Best of luck and thank you for the info.
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A.Carter
New Member
Joined : Dec 2022
Posts : 10
Posted 12/24/2022 11:11 AM (GMT -8)
Tonito- I did read your posts. Thank you. Very promising. The acne side effect is annoying.
Rinvoq is absolutely a miracle drug for me. Worked so fast! I spent from December 2021-June 2022 in a massive flare. Massive. I’m learning as I go I should have gone to the hospital sooner.
I was so malnourished and lived on the couch/toilet. 40mg Prednisone and ulceris rectal steroid foam was not helping. They tried Entyvio but it wasn’t working fast enough.
Went to hospital in June for over two weeks. Colon showed patchy colitis like perhaps the Entyvio healed partially?
I was constantly evaluated and consulted for surgery. Colon was pretty much shot and paralyzed. I was able to get Rinvoq approved and into the hospital and started taking it in the hospital. Within 2 days of taking it, my labs improved and urgency decreases. (I was also on IV steroids which probably helped). Amount of bowel movements (which were solely blood at this point) decreased. It was wild. Took maybe a couple weeks after starting to have a normal, formed, no blood stool.
For Rinvoq to bring me back from such an intense flare/near colon failure in a snap was amazing. I’m living normal.
After saying all that, regarding my original question about pregnancy. …We had always wanted another child, but it may not be wise to risk stopping Rinvoq. I will definitely take my time considering. I think I needed this forum to vent and ask questions to others who can understand what it’s like having UC.
I’m not sure why I went on a rant there. For anyone who reads this…about the Entyvio, and it maybe being the reason parts of my colon showed healing. I never developed antibodies but it just wasn’t working fast enough. However my doctor doesn’t consider it being an option again. I would argue it could be? What are your thoughts?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19333
Posted 12/24/2022 3:54 PM (GMT -8)
I wish I had a great answer for you. I did look in the archives to see if anyone had resumed Entyvio but found nothing. It sounds like when you were in terrible shape back then.

Myself, I would be too afraid of my hormones going wacko & causing a flare & not have a medication that could help me. It would be nothing but a guess if Entyvio would help or not. All you can do is discuss it with your dr again.

Sorry that you find yourself in this situation.
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 131
Posted 12/29/2022 8:19 PM (GMT -8)
Thanks for starting this thread. I was just suggested Rinvoq by my GI as my next stop after we exhaust one more dose of inflectra. I have read the numbers on rinvoq and yes it is not for everyone. 40-60%, so it’s almost 50/50 chance it will work for someone. But it is amazing what it has done for you guys. I will have to give that a try next.
I had same experience with Entyvio, too slow and seemed like no results. So i stopped it, that was 2 years ago.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 1/9/2023 12:58 PM (GMT -8)

geezernow said...
tonito.. That's GREAT news. I thought It was 'all in my mind' that things went back to normal after beginning Rinvoq. For me, it was about two days; since all the information they provide says it will take a couple of weeks to work. It is SO good, being out of a flare. Best of luck and thank you for the info.

I'm really glad to hear you were able to get back on it!
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geezernow
Regular Member
Joined : Nov 2017
Posts : 312
Posted 1/11/2023 4:32 AM (GMT -8)
Thank you Sara...began again Dec. 17th and doing GREAT. I wish the best for you
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 1/11/2023 4:11 PM (GMT -8)

geezernow said...
Thank you Sara...began again Dec. 17th and doing GREAT. I wish the best for you


Awesome! Thanks, I'm still in remission on xeljanz. Just got bloodwork done Monday and all was still normal.
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