Rinvoq no more…

Hi Joanna, after reading these posts, my heart breaks for you. Incomparasin my UC is minor. And the way your father treated you is tragic.

I started Rinvoq yesterday, after trying Entyvio for a year. It did not work well enough. But I had no side effects.
Last FCP was over 900 still. My recent scope showed active chronic colitis with colonic mucosa with cryptitis and abscess formation and increase in lamina propria-based inflammation in the rectum and left colon.
I was so hesitant to try Rinvoq. I didn't feel I was that bad. However having 1 pill a day seems so much easier.

Maybe this isn't connected, but I also have dry eyes and take cyclosporine eyebrows twice per day. Yesterday I took the first Rinvoq in the morning. In the afternoon I was looking out the window and my eye vision started shifting horizontally for about 10 seconds. Could Rinvoq cause that?

I hope things improve for you BG. Sending hugs 🫂 from Sassy

Joanna, thanks for the info. I am still on Mezavant and day 3 of Rinvoq. The eye twitch only happened once.
I was in colitis denial for over 15 years after original diagnosis. Because I never had diarrhea until 1 year ago. Now I can relate to those who suffer with that and pain. Luckily I have a very supportive husband and family. My mother has suffered with over 10 years of microscopic colitis. Food goes in and out within 1/2 hour after eating.
She thinks my colitis is worse than hers, but I beg to differ.

I'm wishing you the best and you have a huge family here on HW who care and support you.

Sassy

Sassy, please keep us posted on how you’re doing on Rinvoq. I’m intrigued by a pill but wary of the potential side effects should it be recommended for me. I don’t know if there’s kind of a standard step after Entyvio or if it just depends on the doctor. Plus there are a number of new medications now approved for UC that weren’t when I started Entyvio. Did you start Entyvio at every 8 weeks and then go to 4? I’m just wondering if that might be an option for me before moving onto something else because it has worked pretty well for me to this point. My former doctor did not think so because my levels were good when checked but beave was of the opinion that it could still work due to the fact that levels are based on an average and people react differently.

Thanks Sassy! Keep me updated on rinvoq. I assume you will to do some bloodwork on it as well. I had strict orders every 3 months but had to do one month after I started it, too. I have always had diarrhea with my flares so that is just my norm. I always prefer to be constipated if I had to choose.

Natty, thank you. I definitely let her words get to me more than I should have. I just took it really personally and I have been with her son for a while so I thought it was rather cruel for her to speak to me that way. I have just decided to only make small talk with her in the future and only if initiated. I honestly have nothing but pity for her if that is how she views the sick people in the world. Not worth my time to try to change her mind. She is old and that is how she has always been.

Hey TT! So I have done mostly paleo/meat based mostly since 2012/2013? I hate these labels though but I mainly eat meat, eggs, dairy, fruit, small amounts of veggies and a few fun things like peanut butter and dark chocolate. I do have cake on my birthday and holidays. My vice are oysters. I have eaten them daily for over ten years! I crave them all the time. I also eat salmon like 4-5 days a week. I definitely eat fish mostly as my meat source but am not gonna change my name to fishgirl.

It's been 12 days on Rinvoq, and still no side effects. It's like I'm in remission, except I am eating way too much carbs and have gained 5 lbs in the last month. That doesn't feel good as my clothes don't fit right, but I'm afraid if I start eliminating certain food to try and loose the weight, that could start me flaring.

As for Entyvio, after loading doses I did every 8 weeks until that wasn't enough and I went to once a month for about 3 months. I believe the Entocort retention enemas helped the most, as I seemed to get better after a two week twice daily dose.

Sassy

I’m so glad to hear that overall the infusion went well! My BP always runs high for my infusions. I have white coat syndrome for one thing. I always recheck a little while after the nurse leaves and text her my now normal BP, lol! Please do keep us posted on how it works for you. Since several of these drugs have been approved for UC only more recently, I am always interested to hear how they are working for others. As well as hopeful it will do the trick for those needing relief, of course!

It’s crazy the cost of these meds. Entyvio runs about $10,000 every 8 weeks. 😳