Crohn's Disease Forum » Treatment » Seeking advice on next med to try (discontinuing Humira)

12-12-2016, 09:53 PM   #1
Mark in Seattle
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Seeking advice on next med to try (discontinuing Humira)

Hi all,

I have taken Humira for a few years. Looks like it's time for me to consider other options.

I can choose from 2 drugs which have been approved in the U.S. Or I can take part in one of 3 trials.

The 2 approved drugs are:

1) Stelara
2) Entyvio

The 3 trials are:

1) Celgene's: Mongersen, phase 3 double-blind placebo-controlled.

2) Medimmune 's: Medi2070, phase b double-blind placebo-controlled.

3) ​F. Hoffmann-La Roche Ltd's: Etrolizumab (il 23 is targeted), phase 3 double-blind placebo-controlled.

I am considering the trials only because I have the impression that Stelara and Entyvio are slow to take effect and are inconvenient due to requiring infusions.

I really don't know much about any of these 5 drugs. I do believe however, that Celgene's Mongersen is the most convenient since it is the only pill. I am told that this Mongersen trial will be the most highly sought-after of these 3 trials.

The downsides to the trials include:

1) 2-3 month waiting period to wash out the Humira before I will be permitted to start the trial. I actually don't know whether I would be required to wash out Humira before starting Stelara or Entyvio.

2) Might get placebo.

I have never done an infusion, nor have I ever tried a drug trial.

Any and all advice concerning which of these drugs holds promise or acts quickly, or any other aspects to consider, would be much appreciated.

12-12-2016, 10:04 PM   #2
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ronroush7's Avatar
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Location: vienna, Virginia

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I wish you the best whatever you decide.
12-12-2016, 10:08 PM   #3
my little penguin
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Stelera is an infusion for the first dose then injections at home after that
Entiviyo is just infusion
Here is a thread explaining the various drugs

Link in it explains success rate etc so far for most of the drugs you listed

Normally when you switch from one biologics to another you don't have a 2-3 month wash out period
Since entiviyo and Stelera are already approved for Crohns I don't think you would need a wash out period at all
Not sure on trials my kiddo is only 13
DS - -Crohn's -Stelara -mtx
12-12-2016, 10:12 PM   #4
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Maya142's Avatar
My daughters have switched biologics many times and have never had to do the wash-out period - that is just for trials.

Like MLP said, Stelara is an injection after one infusion. You are correct that both Entyvio and Stelara can take a while to work. But if you get the placebo in a trial, you're going to be waiting a while anyway.

Good luck with your decision.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-12-2016, 10:12 PM   #5
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ronroush7's Avatar
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It seems like the it wasn't long before I was able to switch from Stelara to Humira.
01-30-2017, 03:48 PM   #6
Join Date: Jul 2012
Location: Auckland, New Zealand
I am on the Roche Etrolizumab open label Cottonwood study, which I moved onto after a randomized trial. I have been on the trial for circa 12 months and went from a severe flare and close to surgery to now being in full remission.

I live in New Zealand, which has a different and fully state funded medical system, so very different to the US. The advantage is it's free for everyone, the disadvantage is it doesn't cover some of the more expensive treatments for UC. The public health system here would have funded Infliximab/Remicade for me so it's an option I considered.

But before trying this I considered trials and ended up on Etrolizumab, which fortunately worked well for me. My reasoning for trying this first was:

- Trials have many entry criteria, if I had already been on Infliximab I wouldn't have been eligible for this trial, so I viewed it as giving me another option
- My gastro thought if I failed on Etrolizumab I could then still try Infliximab, so I had little to lose in trying

That said trials have lot of hoops to jump through to start, for example:

- The timing of the trials needs to align to when you need a treatment
- For my trial I needed to be in a medium flare to achieve entry, so you need to be sick to even be considered. This is validated via colonoscopy
- As you mentioned the risk of placebo is there, ask what % this is. For me the initial trial was comparing Humira against Etrolizumab, so risk of placebo was only 20% so pretty good I thought
- I was in a sever flare by the time I started the drug, fortunately I think I was on Etrolizumab from day 1
- It took me 3 months to get into full remission, required an iron infusion and a course of steroids, so I was very sick for a fair while
- Also ask how long you would be kept on the trial drug if it's successful, for me it's 7 years, so pretty good I thought
- Etrolizumab is an injection into your tummy, which you can do yourself at home every 4 weeks, with a 12 weekly visit to the trial doctor. It's very easy and you do it yourself after a while. No real side effects, except very minor head aches for a day or two post injection

As I understand UC there are many sub-variants of the disease that they don't yet fully understand. Each drug works in different ways and it's like a lock and key. If a particular drug is right for you, as Etrolizumab was for me, the key fits the lock and it works well. If it's the wrong key it won't work, my gastro said it's fairly binary for good or bad result.

I was also at the stage that I'd lost any fear of surgery, as I thought it was better than fighting UC for ever. I spoke to a surgeon and circa 90% of people who've had it say their quality of life is better post surgery, although it is a major thing to go through. It can be done via keyhole surgery nowadays. YouTube also has good clips for patients who've undergone surgery, they were great to watch as most people seemed much happier and back in control of their lives, google a few. So in the future if I need to go that route I'm open to it as an option.

Hope this helps, let me know if you want more info.

Crohn's Disease Forum » Treatment » Seeking advice on next med to try (discontinuing Humira)
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