Author Topic: Dupilumab  (Read 725 times)

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Offline JennCab

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Dupilumab
« on: March 30, 2017, 11:29:30 AM »
Hey Guys
Now that Dupilumab has been approved in the US, I'm going to ask my Derm to prescribe it.
I noticed that there hasn't been any additional conversations on it in the Forum lately.
Does anyone have any updates on their experiences on it.
thanks
 

Offline AYID

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Re: Dupilumab
« Reply #1 on: March 30, 2017, 11:44:23 AM »
I've been following along with the dupilumab drug trials and have spoken with Dr. Rap about it. At least one of the trials was completely rigged. They encourage the participants to use steroids whenever they flare, though the trial is supposed to show the efficiency of dupilumab at preventing flares!

I've also read participants say that it doesn't really work or that it wears off down the road, so I am not enthusiastic about it. l highly doubt that it can offer much.

Offline JennCab

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Re: Dupilumab
« Reply #2 on: March 30, 2017, 12:28:48 PM »
I know there have been a few clinical trials that have included use of Steroids however I've heard nothing but good things from most of those that have used it that were not in the steroid trials.

I do know a lot of people complained about eye infections. That seemed to be a big complaint. I'm just wondering, since much time has now passed, if it's a) still effective b) other side affects and c) if there was significant rebounding for those who have chose not to continue.

Offline Andrew B.

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Re: Dupilumab
« Reply #3 on: March 30, 2017, 07:24:15 PM »
I think it depends on expectations

If people think dupilumab will help 99% of people see 99% improvement then there may be widespread disappointment.

If people think dupilumab will help 40% of people see 50% improvement then it may be considered a success.

Used TCS for 15 years before starting TSW in early 2013.


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Offline 997

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Re: Dupilumab
« Reply #4 on: March 31, 2017, 08:00:28 PM »
Hello,
I've been on the drug for two years now and haven't touched steroids in that time. I haven't had eczema anywhere on my body in those two years except my face. It has been in a constant flare the majority of the time. Before going on Dupilumab my whole body was effected. So for me the drug has been great.

Offline RockHeart

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Re: Dupilumab
« Reply #5 on: April 01, 2017, 05:21:46 PM »
I'm glad to hear that its been working for you 997. Would you happen to have before and after photos showing your improvement. Or does anyone have photos of patients on dupilumab.

Offline 997

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Re: Dupilumab
« Reply #6 on: April 01, 2017, 08:16:12 PM »
I should have taken photos! I never thought about it. I had to be off steroids a few weeks before I started the trial and my skin was horrible. I could hardly walk, couldn't sleep, I was in pretty bad shape. Within two weeks my skin cleared up quite a bit. My face was the only place that wouldn't. 

Offline Camille

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Re: Dupilumab
« Reply #7 on: April 03, 2017, 02:33:50 PM »
In our situation, we tried Eucrisa and it was a failure.  i'm concerned that TSW and eczema are so different. At least that is what I tell the Doctors that treat my daughter.  Like to hear from more TSW affected people on their success with  Dupilumab.

Offline 997

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Re: Dupilumab
« Reply #8 on: April 03, 2017, 11:53:21 PM »
I talked a little about myself on the protopic section. Just to recap I had eczema really bad my whole life and always used steroids. Just like everyone else the steroids increased in potency. I was extremely careless when I used them. I used the cream for my feet and wrists on my face not thinking about the consequences that would happen later down the road.
My derm asked if I wanted to try this new drug but in order to do this I had to stay off steroids for a couple weeks. So I did what he asked not knowing about TSW yet. My skin was a mess! I could barley walk, bend my arms, oozing everywhere. I started the 16 week trial and within two weeks 60% of my skin healed. I still had tsw but it was minor compared to others on the site. Even though I was on the drug I still had troubles sleeping, My vision was messed up, and worst of all my face was a constant flare. By the end of the 16 weeks I had no eczema on my body except for my face. So from my point of view Dupilumab had helped me tremendously. I'd hate to see what I'd be like without it. Hopefully that helps you a bit.

Offline BrothaJeff

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Re: Dupilumab
« Reply #9 on: May 09, 2017, 07:51:40 PM »
I've been on the Dupilumab trial for a year now. I have two years left to go. I didn't have bad eczema when I started because I have already been in 3 years of withdrawal from steroids. I had pimples and red bumps on my arms and my hands were pretty red and dry still. A Little red behind the knees. Face was clear and everywhere else was clear. I went on the open label  trial because I was on the trial before but I was getting the placebo for a year.

When i got the real drug I cleared completely up. My skin was very soft and smooth and water would just bounce off of it. This lasted for about 6 or 7 months and then I noticed I would get a little bit of red patches on my face near the corners of my eyes. Then i started getting a little red patches on my inner elbows. Then also the back of my neck. The patches are not itchy just little red and feel a little hot. Maybe a more red after a shower then they calm down. I am guessing the drug is not as effective as it was. I did an experiment. I stopped the drug for one week and took it the next and it worked much better again. I think because we are using it for so long the effect wears off. Also it started losing it's effect going into the fall weather and winter. We'll see how it is this summer. It's not that bad I much rather have these little patches than those pimples and itchy blisters on my arms. My hands are nice and clear so I'm not embarrassed anymore going to the grocery store and paying at the checkout. I did notice my face gets dry in the T-zone area around the nose and eyes. I heard other people on the drug get dry there too. I'm curious how I will be if I stop the drug. If I'll have normal eczema or if I'll experience more withdrawal again.

Also when stopping the drug for a week I notice the red patches started to go away. I'm wondering if I should keep doing the drug for another 2 years or stop the trial? What would you guys do?

Jeff
Stopped topical steroids April 2013

Offline Oli

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Re: Dupilumab
« Reply #10 on: May 09, 2017, 10:29:26 PM »
That is a million dollar question!!!
This drug is so new, nobody has a long term experience with it.
I myself am 5 years free of TS but I am left with very bad eczema almost all over my body.
I am trying few things now but if it is not going to work I may reach for this drug. It is very expensive though, $36k a year. I am not sure if my insurance will pay for any of it.

Offline cezthrw

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Re: Dupilumab
« Reply #11 on: May 19, 2017, 12:32:58 AM »
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I've been following along with the dupilumab drug trials and have spoken with Dr. Rap about it. At least one of the trials was completely rigged. They encourage the participants to use steroids whenever they flare, though the trial is supposed to show the efficiency of dupilumab at preventing flares!

I've also read participants say that it doesn't really work or that it wears off down the road, so I am not enthusiastic about it. l highly doubt that it can offer much.

Just to offer actual study details here: That's not how the study really works. They gather data through asking how your itch is on a weekly phone call and the doctor tracks what kind of drugs you are using each time you visit the clinic in person. They have data on patient wellness and what drugs they are currently on (dupilumab and nothing vs. dupilumab and steroids for example). It's very easy to track how a patient feels on any given week and understand general shifts in improvement/worsening of their eczema and what they are actually at the time.

Now from my experience: Dupilumab makes me 30-60% better. I still have several large patches and a red face. I also still itch a lot. No amount of steroids is going to change the fact that this drug doesn't clear me. I can see it, my doctor can see it, everyone can see it. If dupilumab works for you, it'll be dramatic. If it doesn't work for you, like it didn't for me, the study will reflect that in the doctors assessment of my condition and my personal assessment.

Offline AYID

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Re: Dupilumab
« Reply #12 on: May 19, 2017, 10:03:27 AM »
cezthrw: while they study may work the way that you described it, the results aren't published that way. They are all lumped together -- the successfully cleared people on steroids, with those not cleared -- and presented as cumulative facts.