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Rinvoq after loading phase.

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Ulcerative Colitis
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Posted 11/12/2023 11:25 PM (GMT 0)
Any of you here on Rinvoq? If so, did you notice a change when lowering doses?

I was doing awesome on the 45mg. It was elevated my liver enzymes so we lowered the dose when I had 8 doses left of the loading phase. So about a week short.

Now I feel worse again. Anyone experience this? It’s really discouraging as I’ve basically failed all the other medications. Thanks!
Posted 11/15/2023 1:48 PM (GMT 0)
Hi Isaac

Sorry to hear of your issues. I was on Rinvoq for around 6 years. I was mostly on 30mg, when I got loweredto 15mg last year, I had itchy skin for a few days. But, now I am completely off it, the itching skin and hives is nothing short of horrific. Been 3 weeks now and its not going away.

Hopefully, your symptoms will settle. Just takes time to adjust.
Posted 11/15/2023 7:24 PM (GMT 0)
I've been on Rinvoq for a year now. I immediately went into remission on the loading dose and noticed no difference upon going on 30mg routine. After a year, the only side effect I've had is a little acne. YESTERDAY I had a calprotectin test done and the week before, I had routine blood work done. Blood work was all normal. Haven't received the calprotectin results yet. I am hoping for 'normal' result of that one. It has been an amazing journey so far, with Rinvoq. I have had NO signs of ulcerative colitis since beginning it. Before...was afraid to leave my house. Heck, I was afraid to get more than 10 feet from the 'potti'!! Just happy as heck for this past year and hope it continues. My NEW GI doctor, former one retired his practice, sent in a new prescription for Rinvoq. I am HOPING the new prescription will go through without problems. Insurance now days can be a bit difficult to say the least; but we can't function without them. Good luck isaach....I do hope you will feel better soon and get into remission right away. We are all different, but there will be SOMETHING that will work for you. Just never give up!!!
Posted 11/15/2023 7:40 PM (GMT 0)

geezernow said...
I've been on Rinvoq for a year now. I immediately went into remission on the loading dose and noticed no difference upon going on 30mg routine. After a year, the only side effect I've had is a little acne. YESTERDAY I had a calprotectin test done and the week before, I had routine blood work done. Blood work was all normal. Haven't received the calprotectin results yet. I am hoping for 'normal' result of that one. It has been an amazing journey so far, with Rinvoq. I have had NO signs of ulcerative colitis since beginning it. Before...was afraid to leave my house. Heck, I was afraid to get more than 10 feet from the 'potti'!! Just happy as heck for this past year and hope it continues. My NEW GI doctor, former one retired his practice, sent in a new prescription for Rinvoq. I am HOPING the new prescription will go through without problems. Insurance now days can be a bit difficult to say the least; but we can't function without them. Good luck isaach....I do hope you will feel better soon and get into remission right away. We are all different, but there will be SOMETHING that will work for you. Just never give up!!!

Really happy for you. I had the same remission with Rinvoq. But just a warning to be on the look out for any warts.
Posted 11/15/2023 7:48 PM (GMT 0)
Barns...LOL funny you would mention that. My ONLY side effect from Rinvoq has been acne. I've had skin cancers removed prior to taking Rinvoq. Have you had a problem with 'warts'?
Posted 11/15/2023 7:57 PM (GMT 0)
Yes, huge issues with warts. And I had them internally, which then became pre-cancerous growths. Had multiple surgeries. Ultimately, led to me having to stop taking Rinvoq. Real shame as it kept me in an amazing remission.

Guess it was just too good to be true.
Posted 11/20/2023 2:46 PM (GMT 0)
Warts? What are the warts you have to look for?
Posted 11/20/2023 8:49 PM (GMT 0)

isaachadzovic said...
Warts? What are the warts you have to look for?

I had warts on my fingers, and one on my left foot. And some on my face, which were hard to distinguish from the usual Rinvoq related acne.

But the most dangerous warts were the genital warts. I had them on my anus and internally in my rectum, extending up until the sigmoid colon. They were HPV warts. Rinvoq reactivates the HPV virus (which virtually everyone has at some point in their lives, but most people clear it without ever knowing they had it).

These became pre-cancerous as my immune system was unable to clear them thanks to Rinvoq suppressing the part of the immune system that usually deals with HPV.

So, please look out for any of this while you are on Rinvoq.
Posted 11/21/2023 5:13 PM (GMT 0)
It's not just rinvoq, my sister has issues with pre cancerous cells in her cervix due to reactivated HPV that she cannot clear because of being on TNF inhibitors.

Plantar warts on the other hand are annoying but not particularly dangerous as far as I'm aware. They are (usually) a different strain of HPV than the ones that cause genital warts so one does not cause the other. I've had plantar warts come and go for years, long before I was even diagnosed with UC.

There is a vaccine for HPV but not for herpes (the other wart-causing virus).
Posted 11/22/2023 8:28 AM (GMT 0)
Yes, I did read about other immune suppressing meds also reactivating HPV. I am on Stelara now and my GI told me that this med causes less issues with HPV compared to Rinvoq. But its only been 4 weeks, so will have to wait and see. I have my 6th surgery to remove the pre-cancerous cells in December/January. I will also find out if the HPV has regressed at all since coming off Rinvoq.

Total nightmare.
Posted 11/22/2023 11:05 AM (GMT 0)
Hey Isaac

What symptoms do you have? Are you on prednisone, too? Rinvoq was very slow to work for me compared to Simponi and Remicade so you may just need more time. It definitely took me the 8 weeks to notice anything but dropping to 30 mg was fine. I am now on 15 mg mostly (I take one 30 mg a week). I had to taper because I had full out yeast overgrowth everywhere. Totally gross and itchy. Be wary of any yeast issues since my GI said that is common with this. I had to take every yeast med/supplement. It is better now on the lowest dose. I still cant eat most foods though. My doctor has added flagyl, creon and mag oxide since my SIBO is very severe. I also just got tested for allergies and developed 10 food allergies since my flare this year that I never had before. Still have to go back for more testing. This disease never rests!
Posted 11/23/2023 10:17 AM (GMT 0)
Aaah barnsbury 6 surgeries! What a nightmare indeed. I hope you get a break soon and I hope stelara works for you 🤞
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