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Ulcerative Colitis
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Posted 1/24/2024 1:13 AM (GMT 0)
Doctor is starting the process to get me approved for Rinvoq for my Ulcerative Colitis. I have tried mesalamine (worked for 2 years) and Humira (worked for 4 years) I am getting a shingles shot and my lipids tested before starting so I know about immune issues and high cholesterol associated with it. What else can you tell me. I am happy not to have to give myself a shot anymore but nervous about side effects though I know Humira has side effects too. It’s just Rinvoq is so new. My doctor works for Northwestern in Chicago and he said that this is what they are starting to use a lot at the IBD clinic there because it is showing great results. Thanks so much
Posted 1/24/2024 10:46 AM (GMT 0)
I am on xeljanz which is similar to rinvoq (they are both JAK-inhibitors but rinvoq is more targeted than xeljanz). Just had my 5 year anniversary, no side effects, normal cholesterol (i think it might have gone up a bit in the beginning but then returned to normal).
Posted 1/24/2024 3:03 PM (GMT 0)
Good luck TG! I have been on it since April 3. Took a few months to notice anything but am in remission. Its not the same remission as a TNF inhibitor unfortunately but at least I am not in the hospital. My lipids have all gone up since starting. The biggest jump was after a month on it. I think it went up to 440 (or around there). It is back down to 370ish now that I am on 15 mg but still higher than it was in March 2023 (220). My GI said he has a group of patients who are super responders in the high cholesterol category. One lady got to over 1000. Just make sure you are monitored. The manufacturer said intervening is only necessary when the triglycerides are really high, too. Mine are now between 40-50 so he said the high TC doesn’t mean anything.
Posted 1/27/2024 10:42 PM (GMT 0)
Bacon!! I've been on Rinvoq for one year and a month now. The ONLY side effect I've had is higher cholesterol and the only NOTICEABLE side effect has been a little acne. I'm old now and never had acne as a youth; but I'd rather deal with a few bumps than in constant panic if I was out of eyesight of a bathroom. LOL I was on Remicade for 20 years and did great until I developed antibodies. Tried Entyvio and Humira without success. Rinvoq began working, for me, after the very first week!! I've had NO UC symptoms since. I just had lab work a month ago and my calprotectin level was a bit high. Doctor advised me to continue with Rinvoq and he would 'watch' things. I wish you the very best of luck and hope you get immediate remission. This past year has been the best time of my UC life. My insurance balked at first and thank God that my doctor had a good staff who persevered. My co-pay is $1,000 every 90 days with two 'good' insurances. THAT is the downside of the newer drugs. Best to you in all !!!!
Posted 1/28/2024 10:33 PM (GMT 0)
Thanks for the info everyone. I have always had amazing cholesterol so I am a bit worried about that. My biggest symptom has always been urgency. I can drive to work (45 minutes away) and had to stop once or twice to go to the bathroom. I rarely have blood. I have wondered if I should try something different before moving to Rinvoq since I have only been on Humira. I have had my doctor for 20 years. 1st for GERD. He told me this is what he would suggest for him wife or kids. I just worry because it’s so new. My calprotectin is currently 1400 so he really want me to move to something quickly.

Bacon girl - not the same remission? So now good? So sorry.

Geezernow - that is crazy expensive. I may ask for something else if it’s that expensive. I have already gotten an email from Rinvoq saying with the savings card my cost should be $5 but we will see. I am glad you are having good luck with it.
Posted 1/28/2024 11:20 PM (GMT 0)
It's not that new.... it was approved for RA in 2019, and it is related to xeljanz for which there is > 10 years of data. And the biologics are not without risks either.

I'm not sure how old you are but my doctor told me if you're young and fit then a little elevated cholesterol isn't a problem. Like I said, mine is normal...
Posted 1/29/2024 3:42 AM (GMT 0)
Poopydoop - I am 47. My only health issue is UC. Good to know there is that much data out there.
Posted 1/29/2024 3:44 AM (GMT 0)
Been on Rinvoq for over a year. 30mg. Still going well!

Also on rosuvastatin for high cholesterol - which was high before starting Rinvoq. Last lipid panel was a month ago and normal.

Hope it works for you!!
Posted 1/29/2024 4:06 PM (GMT 0)
Well, it’s just not good digestive wise. I felt a lot better on Simponi. My joint pain is better on Rinvoq though. I still can’t have a varied diet and now have horrendous SIBO and food allergies we are trying to treat. Also my yeast infection is back again so it seems like I will live with chronic yeast infections now which sucks. Never had that on the other drugs. I feel like I live at the doctor and hate that. But I am doing my best with the hand I have been dealt. My calprotectin is low and my labs are okay so I will stay on Rinvoq until it stops working since the inflammation is controlled.
Posted 2/10/2024 10:47 PM (GMT 0)
So I took my 1st dose last night and felt totally fine. But I am about 2 hours from my next dose and got chills and a fever. I took a COVID test and it’s negative. Anyone have a fever starting Rinvoq. I spoke to the doctor on call and he said it’s probably an immune response. Just weird it waited over 20 hours before it happened. Though I am also tapering pred and took that last night (never had an issue with pred). He said it’s fine if it’s not a high fever.
Posted 2/11/2024 10:33 PM (GMT 0)
Well went into quick care today and I have influenza A. So temperature yesterday was most likely that. I feel crappy today.
Posted 2/12/2024 12:43 AM (GMT 0)
Aww no! What a bad combo! Are you able to still take the loading dose with the flu? I haven’t gotten very sick yet on Rinvoq. I hope you feel better soon! Idk if this helps, but I started supplementing NAC for my immune system issues (mainly MCAS) and I think it has helped me not get sick.
Posted 2/12/2024 2:29 AM (GMT 0)
Bacon Girl - I only took that one dose. I spoke to the GI on call yesterday when I had a fever of 102 and he said skip until Monday and talk to my GI. We didn’t know I had the flu then. I am still tapering prednisone. So the combination of all those probably did it. I never got really sick on Humira. I am a high school teacher and tons of kids were out this week.
Posted 2/20/2024 1:17 AM (GMT 0)
Well I started the Rinvoq 2 nights ago. I have been constipated before starting it. Tonight I when to the bathroom a couple times passing hard small still and I saw what looked like the pill in it. I checked (gross) and it looked like at least 1/2 of the pill was there. When I was 1st diagnosed with U/C I tried lialda and the same thing happened I would poop partial pills. So Lialda didn’t work and we trialed Apriso and I would see little balls in my stool. GI then put me on Humira and kept me on Apriso. That combo worked for 4 years. When the Humira worked well I usually didn’t see the Apriso in my stool. So now I am worried that my body isn’t breaking down the Rinvoq and it will not work. I have a message into my GI.

Anyone have anything similar?
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