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Shifting meds from Mesalamine to Humira: Need help please!

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Ulcerative Colitis
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Posted 7/17/2021 5:22 PM (GMT 0)
First loading dose today - 160mg. After all the waffling and worry, I think I'm ready to start this new chapter. I'll be working with a very nice nurse "ambassador" via the Humira complete care program. Wish me luck!

Cautiously optimistic
Posted 7/17/2021 11:55 PM (GMT 0)
Wishing you well. Let us know how it all goes.
Posted 7/18/2021 1:25 AM (GMT 0)
🤞

Keep us updated!!!
Posted 7/18/2021 9:40 PM (GMT 0)
I hope it works well for you!
Posted 7/19/2021 5:12 PM (GMT 0)
Thank you all for the well wishes and support! I know it will take some time before determining if Humira is right for me, so just trying to stay patient. Started a low-dose (20mg) pred taper as well so that will help to buffer symptoms temporarily during the transition. Updates forthcoming... take care everyone!
Posted 7/19/2021 5:57 PM (GMT 0)
Sorry I don’t have better news, but I had no luck whatsoever with mesalamine and Humira. I have severe panColitis, and am now coming off my 3rd course of prednisone and hoping 10mg/kg BW of Inflectra will keep this in remission. Best of luck!
Posted 7/19/2021 7:52 PM (GMT 0)

Doingmybest2021 said...
Sorry I don’t have better news, but I had no luck whatsoever with mesalamine and Humira. I have severe panColitis, and am now coming off my 3rd course of prednisone and hoping 10mg/kg BW of Inflectra will keep this in remission. Best of luck!

I'm sorry you've struggled to find relief. It really is a "roll of the dice" in finding the right combo of meds/lifestyle choices etc. Wishing you a path towards greater wellness, whatever it may be...
Posted 10/30/2021 12:34 AM (GMT 0)
Hi folks... wanted to share a little update. I'm now just past the three-month mark with Humira and sadly, there seems to be no improvement. Symptoms have remained stubbornly persistent. Since starting Humira, I've done one prednisone taper at 20mg, one month budesonide 9mg slow-release (zero help), and am now a week into my second prednisone taper - this time at 40mg. I've been having increased blood and left-sided pain this week in particular and am feeling rather deflated sad

My current GI and I devised a plan to up my Humira from every other week to once per week. We both felt it's worth exhausting the options before exploring another biologic/med. Still awaiting on insurance to approve the prior authorization to weekly dosing - fingers crossed I get the green light... and double fingers crossed it actually helps! Ugh I'm feeling exhausted. Would appreciate any support or personal insight...or jokes, or...
Posted 10/30/2021 2:42 AM (GMT 0)
Sorry to read that you are still suffering. I hope your insurance approve the weekly injections, there are some folks that have success with weekly injections. Hang in there & keep us posted.
Posted 10/30/2021 3:12 AM (GMT 0)

straydog said...
Sorry to read that you are still suffering. I hope your insurance approve the weekly injections, there are some folks that have success with weekly injections. Hang in there & keep us posted.

I appreciate your encouragement, straydog! It can feel so lonely on the UC island sometimes.
Posted 10/30/2021 4:33 AM (GMT 0)
I was very lucky to find relief and remission with my first biologic. I’ve read so many stories here of others that have struggled and had to switch meds multiple times. It must be exhausting and it’s so time consuming to have to go through the months of trying and waiting to see results or lack of.

I do recall reading of several others here who found relief after they moved to weekly injections. I hope the same for you. Have you seen any improvements at all!
Posted 10/30/2021 5:52 AM (GMT 0)

FlowersGal said...
I was very lucky to find relief and remission with my first biologic. I’ve read so many stories here of others that have struggled and had to switch meds multiple times. It must be exhausting and it’s so time consuming to have to go through the months of trying and waiting to see results or lack of.

I do recall reading of several others here who found relief after they moved to weekly injections. I hope the same for you. Have you seen any improvements at all!

That’s great your first go at biologics put you into remission! I hope you continue to live symptom free. It’s honestly hard for me to recall what that felt like… and it’s only been six years with this dreadful affliction! The ups and downs and uncertainty has definitely taken a toll on me. But I’m determined to regain a better quality of life.

Yes I took have read accounts of people having success with weekly, so figured it’s worth a try before jumping ship. Hopefully it helps!

I appreciate you sharing your thoughts smile
Posted 11/9/2021 10:43 AM (GMT 0)
Hi, No, your not on a train per say , you can hop off, like I did. I tried them all and they all gave me side effects. See what works for you and listen to your body, some people sail through and they are so helpful, I hope this works for you!
Posted 11/11/2021 5:24 PM (GMT 0)

therearemiracles said...
Hi, No, your not on a train per say , you can hop off, like I did. I tried them all and they all gave me side effects. See what works for you and listen to your body, some people sail through and they are so helpful, I hope this works for you!

Yes I appreciate this reminder. I know deep down I have agency but often find myself losing sight of this and become boxed into a one-way-ticked mindset. The practices of listening to our bodies is a skill we should all be proud to have honed. Silver linings!
Posted 11/26/2021 5:44 AM (GMT 0)

FlowersGal said...
I feel your pain! I fought so hard against biologics for the same reasons you stated. Gave all the supplements and diets the “good ole college try” but after a year of waffling on and off prednisone my GI stated he was afraid I was going to lose my colon and my best option in his opinion was entyvio. I really trusted him and turned out he was right. I’ve been happily in remission for 4 years.

It’s so nice to not worry about going out and about — no cramping or toilet runs. It’s like life before UC. I was lucky that I’d just gone on Medicare when I was diagnosed and didn’t have to try whatever medication insurance wanted me to. So I have no advice on humira. I will say ( and I’ve seen it said here a lot from people who gained remission from biologics) that it turns out my worries were misfounded .

An advantage to humira is you can self inject at home. I have to go for infusions at the hospital every 8 weeks but they are only 30 minutes and it hasn’t interfered with my life at all.

New drugs are coming out all the time so the worry about using up all your drug options doesn’t really apply anymore.

Keep us posted and good luck!

flower girl my Gi told me I had to try imuran first because of Medicare?
Posted 11/26/2021 4:32 PM (GMT 0)
Nope. Medicare doesn’t have requirements like that nor do they require pre-authorization — which I found really scary as I was scared I’d have the infusion and then they’d decide not to pay for it. But that was a needless fear and I’ve had no issues with Medicare or my supplement balking at the cost. Btw, infusion medication is covered by Medicare under the medical side (A or B, I always forget which is which) — not the part D prescription side.

Although I know nothing about the Medicare Advantage programs — they could be different.
Posted 11/26/2021 10:47 PM (GMT 0)

FlowersGal said...
Nope. Medicare doesn’t have requirements like that nor do they require pre-authorization — which I found really scary as I was scared I’d have the infusion and then they’d decide not to pay for it. But that was a needless fear and I’ve had no issues with Medicare or my supplement balking at the cost. Btw, infusion medication is covered by Medicare under the medical side (A or B, I always forget which is which) — not the part D prescription side.

Although I know nothing about the Medicare Advantage programs — they could be different.


Why is my gastroenterologist saying that I have to try Imuran first. It’s frustrating that he’s starting to contradict what he says. They all do it though. How long does entyvio take to work? My Dr is Geoffrey Tu at the Center for digestive disease in Sydney. Who is your Dr?

Post Edited (Theanxiousaries) : 11/26/2021 3:55:10 PM (GMT-7)

Posted 11/27/2021 12:23 AM (GMT 0)

Theanxiousaries said...

Why is my gastroenterologist saying that I have to try Imuran first. It’s frustrating that he’s starting to contradict what he says. They all do it though. How long does entyvio take to work? My Dr is Geoffrey Tu at the Center for digestive disease in Sydney. Who is your Dr?


Flowers is talking about medicare in the US not medicare Australia
Posted 11/27/2021 4:57 AM (GMT 0)

poopydoop said...

Theanxiousaries said...

Why is my gastroenterologist saying that I have to try Imuran first. It’s frustrating that he’s starting to contradict what he says. They all do it though. How long does entyvio take to work? My Dr is Geoffrey Tu at the Center for digestive disease in Sydney. Who is your Dr?


Flowers is talking about medicare in the US not medicare Australia


Ohhh I thought we only had Medicare in Australia. Sorry
Posted 11/27/2021 5:19 AM (GMT 0)
Sorry too! I thought Medicare was only in U.S!
Posted 11/28/2021 10:25 PM (GMT 0)

FlowersGal said...
Sorry too! I thought Medicare was only in U.S!

I wish there were other option before imuran or entyvio but they haven’t given me any
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