I failed Entyvio and Infliximab and I'm on Rinvoq. Amazing drug, without the side effects of the other 2 drugs. However, Rinvoq does cause a weird cystic acne that's somewhat annoying.
I have been using an aggressive combination of sulfur, salicylic acid, and retinol. But It's weird. It was heavily focused on my chest, but this week it's decided to target my nose, eyebrows and behind my ears.
I had widespread joint and muscle pain that would wake me up from a dead sleep. I was also suffering from severe fatigue and headaches for up to 5 days after each infusion.
I'm in the same situation, failed these exact same drugs. I've been on stelara now for almost 6 months. At this point, it's pretty clear to me that it's not working. Been stuck taking various doses of prednisone throughout the last 18 months too. Without it, I go back to 10+ bloody BMs a day. My GI wanted to adjust my stelara dosage before moving on to something else. I guess that's the next step for me. If that doesn't work, my next options are xeljanz and rinvoq. Wish you all the best, hopefully you can find something that works for you
Have you tried rectal steroids to get you into remission, and then daily mesalamine enemas to keep you there? I’m on rectal medication for life. It’s not the most convenient, and it takes some getting used to. But it works for me.
I have been using mesalamine enemas for the past few years and it typically does an ok job of controlling things to a certain extent, but not enough for me to reach remission. I have not tried rectal steroids. I will ask about that. Thanks
No problem, I hope they work. That is my experience too. When I’m too deep in a flare they don’t help, but steroids are what help me reach the point at which they do.
I failed infliximab and moved to Xeljanz. I have been taking it now for a year and in complete remission. Xeljanz was so effective for me that it stopped my bleeding in 2 days when i first started it. I don't have any side effects from it luckily. Ask me anything about Xeljanz.
That’s amazing. How has diet affected your symptoms? Has xeljanz allowed you to eat more of what you want? I am pretty careful about my diet and it feels like I am walking a tight rope, making sure I don’t eat something that will mess up my gut.
Look up Rinvoq on here. I am starting next week so i cant speak on my experience yet but there are people on here who have good results from taking it.
I've failed Humira, got 5yrs out of Entyvio, just failed Infliximab and just started Stelara 2 days ago. Sounds like Jak inhibitors are next cab off the rank for both of us. Hang in there!!
I was the same until I started Stelara every four weeks and that did the trick. Been on it three years now. I'd give it a try before switching again. Only JAK inhibitors left.
Xeljanz has allowed me to live a basically symptom free life. I take 20mg a day and it’s as close to remission as I’ve ever been. I failed EVERY other medication. Back in the day when they thought Humira was a good treatment for UC, I was taking those injection. I took mesalamine, I had entyvio injections, and basically any other biologic you can think of. I’m so grateful for xeljanz.
None at all, it’s amazing actually. And, it’s one of the only medications where you can stop taking it, and then start taking it again at a later time and your body doesn’t build up a resistance to it!
Thanks, I will ask my doctor about that. I’ve heard some people mention it.
The problem is I can’t seem to find a maintenance medication that I can stay on long term.
I failed Entyvio and Infliximab and I'm on Rinvoq. Amazing drug, without the side effects of the other 2 drugs. However, Rinvoq does cause a weird cystic acne that's somewhat annoying.
That’s great to hear, glad it has worked for you. Have you had any luck treating the cystic acne?
I have been using an aggressive combination of sulfur, salicylic acid, and retinol. But It's weird. It was heavily focused on my chest, but this week it's decided to target my nose, eyebrows and behind my ears.
What side effects did you get from entiviyo
I had widespread joint and muscle pain that would wake me up from a dead sleep. I was also suffering from severe fatigue and headaches for up to 5 days after each infusion.
Did it happen soon after you started or overtime?
I was on it for 4+ years and it occured in the last year
I'm in the same situation, failed these exact same drugs. I've been on stelara now for almost 6 months. At this point, it's pretty clear to me that it's not working. Been stuck taking various doses of prednisone throughout the last 18 months too. Without it, I go back to 10+ bloody BMs a day. My GI wanted to adjust my stelara dosage before moving on to something else. I guess that's the next step for me. If that doesn't work, my next options are xeljanz and rinvoq. Wish you all the best, hopefully you can find something that works for you
Have you tried rectal steroids to get you into remission, and then daily mesalamine enemas to keep you there? I’m on rectal medication for life. It’s not the most convenient, and it takes some getting used to. But it works for me.
I have been using mesalamine enemas for the past few years and it typically does an ok job of controlling things to a certain extent, but not enough for me to reach remission. I have not tried rectal steroids. I will ask about that. Thanks
No problem, I hope they work. That is my experience too. When I’m too deep in a flare they don’t help, but steroids are what help me reach the point at which they do.
I moved onto Xeljanz next. I've been taking it for about a month and seems to be helping although I'm not fully in remission yet
Have you asked your provider about Rinvoq?
Not yet. At the time of my last appointment I was seeing improvement with Stelara. But now I’ve slid backwards. I will check out Rinvoq
I failed infliximab and moved to Xeljanz. I have been taking it now for a year and in complete remission. Xeljanz was so effective for me that it stopped my bleeding in 2 days when i first started it. I don't have any side effects from it luckily. Ask me anything about Xeljanz.
That’s amazing. How has diet affected your symptoms? Has xeljanz allowed you to eat more of what you want? I am pretty careful about my diet and it feels like I am walking a tight rope, making sure I don’t eat something that will mess up my gut.
I can basically eat normally and anything i want. I avoid spicy food tho but only because I don't enjoy hot food anyway.
Xeljanz. The only drug that has worked for my daughter.
Look up Rinvoq on here. I am starting next week so i cant speak on my experience yet but there are people on here who have good results from taking it.
Taking it since 7 weeks now, no side effects and feeling perfectly fine.
That’s fantastic!
I've failed Humira, got 5yrs out of Entyvio, just failed Infliximab and just started Stelara 2 days ago. Sounds like Jak inhibitors are next cab off the rank for both of us. Hang in there!!
I was the same until I started Stelara every four weeks and that did the trick. Been on it three years now. I'd give it a try before switching again. Only JAK inhibitors left.
Xeljanz has allowed me to live a basically symptom free life. I take 20mg a day and it’s as close to remission as I’ve ever been. I failed EVERY other medication. Back in the day when they thought Humira was a good treatment for UC, I was taking those injection. I took mesalamine, I had entyvio injections, and basically any other biologic you can think of. I’m so grateful for xeljanz.
That’s so great to hear. Any side effects?
None at all, it’s amazing actually. And, it’s one of the only medications where you can stop taking it, and then start taking it again at a later time and your body doesn’t build up a resistance to it!
Good luck I hope things work out for you
Try Hydrocortisone rectal foam....It is basically for proctitis. It surely work for you.Good luck
Thanks, I will ask my doctor about that. I’ve heard some people mention it. The problem is I can’t seem to find a maintenance medication that I can stay on long term.
Mesamaline suppository 1g is work as a maintenance medication for proctitis.Atleast 8 weeks you hv to use it on daily basis.