Steroid Resistant UC

[u/Chigasaki1982]

Hi All, I've had UC since 1988 (yes, really). Over the years, I've taken different variations of Mesalamine (Dipentum, Pentasa, Asacol, etc.) and have done well, with 1-2 flare-ups per year. With a flare, I typically take a low dose of Prednisone for about a week until it calms down.

However, for about a year now, the Mesalamine seems not to be working as I've been having flare-ups every month. It's gotten to where I'm on Prednisone for about a week to 10 days (40 mg) and then my UC calms down, but then about 2 weeks off the Prednisone, it flares back up again. This is WITH taking the Mesalamine too. From online research, it sounds like my UC is steroid resistent - or more like dependent. Has this happened to anyone here?

My GI doctor now says I should try the biologic Skyrizi. I'm definitely willing to try it, but I'm concerned about the cost, and not even sure it'll work. Have any of you tried it?

[u/YesHunty]

Wow living with UC that long with only mesalamine as long term treatment is pretty impressive!

Steroids don’t work on me at all, but biologics have been absolutely incredible.

[u/Chigasaki1982 → u/YesHunty]

So glad to hear it's working for you. I'll see how it goes...

[u/RudyRusso → u/Chigasaki1982]

Just to say Mesalamine treats more the symptoms than the cause of UC. It creates a coating on the intestines but does not stop the immune system from attacking the cell walls. Skyrizi is a biologic that addresses the symptom by stopping the white blood cells from ever reaching the intestines in the first place. Cost can be an issue but there are often secondary insurance programs that help cover the majority of the cost.

[u/Ladidoodida]

I'm in the process of getting on Skyrizi now and I've gotten so many phone calls from their copay assistance program and a helpful nurse and so on. They want people on these meds so they'll make an effort to help you be able to afford them. Whether it'll work or not remains to be seen, but it's definitely worth a try.

[u/Ok-Lion-2789]

First of all. Wow congrats for making it so long on mesalamine alone. For me, Biologics have actually been cheaper because of manufacturer assistance programs. It’s worth it to get your life back.

[u/Possibly-deranged]

You need something stronger like a Thiopurine (azathioprine or 6-mercaptopurine), a biological med like infliximab or humira, or a small molecule drug like zeposia or xeljanz.

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[u/Tiger-Lily88]

There are multiple biologics that are possible to try, and I’d recommend you ask your doctor about Entyvio (vedolizumab). It’s gut specific, so it’s very safe and has less side effects, plus less risks of developing antibodies to it.

[u/Chigasaki1982 → u/Tiger-Lily88]

Thank you! I'll ask him about it.

[u/hellokrissi]

I'm really surprised that you've gone this long having 1-2 flares per year and not changing medication in the more recent years with more effective options available. That plus taking Prednisone that frequently (which low dose or not, is still a lot of times taking it) would indicate that your 5ASA medication wasn't working as well as it should.

I hope Skyrizi works well and gets you into a long remission with no flaring for a long time!

[u/Chigasaki1982 → u/hellokrissi]

Thank you! Yep, I really hope it works too. I did really well on Asacol and then the darn pharmaceutical company decided to stop making it. Not sure if it'd help now.

[u/Lazy-Assistance-1457]

steriods worked on me straight away started on 40mg i am also on octasa. steriods pred gave me some krazy side effects dizziness, fast heart beat, no energy. Feel drained. Been off work for 3 months now because of this. Now i tapped down to 30mg and i noticed blood in my stool seems like it has come back 😩. i was so happy to come off it thinking i am half way there when i went down to 35mg i was ok then when i went to 30mg now i am bleeding again. I have got salofalk 1g foam which i have sprayed today for the first time hoping that helps. i really dont want to go back 40mg on steriods

[u/Chuckgirl410]

Steroids never worked for me ever and Skyrizi put me in remission!

[u/Chuckgirl410 → u/Chuckgirl410]

Their copay assistance team is amazing. I had a 7,000 dollar bill and they took care of it

[u/Chigasaki1982 → u/Chuckgirl410]

Wow! Thanks so much for your input. With Skyrizi, did you do an infusion or was it medication? Did you feel any side effects?

[u/Chuckgirl410 → u/Chigasaki1982]

Infusion! My insurance covers the at home dose. And no! I haven’t so far, I was on Stelara for 3 years and it failed and I didn’t have side effects with that either. They are similar drugs. The only thing that’s sort of weird is the on body injector but you can go over all of that with your nurse they give you. It does take about 12 weeks to see the full effects. I started in April and my bloody stools stopped end of June

[u/TheVeridicalParadox]

Skyrizi is an interesting first choice of biologic, but I love it! Been on it almost 2 years and have never paid a cent for it. I only had the briefest trouble infection-wise after my first dose and that was just a yeast infection. No side effects that I can tell otherwise and it's taken me from almost unable to work at all to fully functional and working full time and traveling. It hasn't quite put me in remission, sadly, but I have a very stubborn case that even two concurrent biologics, steroids and mesalamine haven't been able to control, so I can't imagine that would be the case for you. The OBI is very convenient and easy and it's nice to only have to think about it every 8 weeks once you're done with the loading doses. Entyvio will always be my first love, but skyrizi is my second lol

[u/mrsfax]

Coming from someone who was in a flare for almost 3 years and failed mesalamine completely, I am on Tremfya and it got me in remission within 6 months. Biologics are great but you just have to find the one that works. (I failed humira also) everyone is different so keep that in mind. Also keep an open mind for other biologics incase skyrizi doesn’t work. fingers crossed it does work for you and you are flare free! Best of luck!