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Dupixent/Dupilumab for Eczema?
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19-08-2017 7:54am#1
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I've been following Dupilumab now called Dupixent for the last number of years in America and have been watching it go through the various clinical trials over there with some very exciting results.(Have a look on YouTube!)
It then went to clinical trial in Europe and the rest of the world but unfortunately not in ireland as far as I know because of our laws although its quite possible it will eventually be manufactured here!
I've heard that dupixent is very expensive in the states and if your not covered by your medical insurer your snookered over there. Its supposed to be cheaper for Europeans but something like 31,000 euro a year!!!! Im hoping it will get here soon and the HSE approve it for medical card holders despite its cost. I don't have AD myself but my partner has and it's sooo debilitating and depressing for her and to see what she has to go through day in day out just makes me feel so helpless and sad for her
If i could I'd magic it here now as it looks like a real life changer!
Fingers crossed!
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Widdershins wrote: »Can I ask what AD is? Is it a form of Eczema?
I got excited there thinking there is a new cure
Is there any other treatment for eczema out there? I tried antihistamines and the usual steroid creams. Every moisturiser under the sun. I have one that works well for me except for one area that drives me mad because it feels lke my skin s boiling and the mosturiser doesn't touch it.
Hi well AD is Atopic Dermatitis also referred to as Eczema. Are u attending a dermatologists?
My other half has been since a child and at the moment is taking exactly what you've mentioned your taking yourself. There are other medications one of which she has decided not to take anymore called imuran etc which are immunosuppressants tablets.. she took these for 5 years heavily monitored by a consultant but decided to stop as she felt they were making her quiet unwell. Its personal choice i guess but she wouldn't take any similar medication lightly anymore! Dupixident is different..it works basically like a trigger switching off the ezcema gene.
Hang in there 0 -
Hi well AD is Atopic Dermatitis also referred to as Eczema. Are u attending a dermatologists?
My other half has been since a child and at the moment is taking exactly what you've mentioned your taking yourself. There are other medications one of which she has decided not to take anymore called imuran etc which are immunosuppressants tablets.. she took these for 5 years heavily monitored by a consultant but decided to stop as she felt they were making her quiet unwell. Its personal choice i guess but she wouldn't take any similar medication lightly anymore! Dupixident is different..it works basically like a trigger switching off the ezcema gene.
Hang in there
Of course, how silly of me, I should have known that
S used to just thinking of 'eczema'
Not attending dermatologist, would have done as a child but they never seemed to do much so I never bothered since.0 -
Widdershins wrote: »Of course, how silly of me, I should have known that S used to just thinking of 'eczema'
Not attending dermatologist, would have done as a child but they never seemed to do much so I never bothered since.
Yep,
You guys prob know more it than they do anyway lol... they dont do much she agrees but is just going to all appointments to keep herself in there asking questions about better new breakthrough treatments coming down the line..and from the results and reports of dupixent..it could well be a life changer for a lot of moderate to extreme ezcema sufferers!
She uses betnovate for bad flare ups and hopes it calms it... dunno if you use that.. you prob do already
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Yep,
You guys prob know more it than they do anyway lol... they dont do much she agrees but is just going to all appointments to keep herself in there asking questions about better new breakthrough treatments coming down the line..and from the results and reports of dupixent..it could well be a life changer for a lot of moderate to extreme ezcema sufferers!
She uses betnovate for bad flare ups and hopes it calms it... dunno if you use that.. you prob do already
Betnovate is about the best of them in my experience. I've grown out of mine apart from one area and I'm wary of thinning my skin or developing white blotches from the steroid creams so it's catch 22
I'd have had wet wraps as a child and they were awful and made it much worse, that's partly why I've little faith in dermatologists for eczema. I was very surprised to read there might actually be something new coming down the line!0 -
Widdershins wrote: »Betnovate is about the best of them in my experience. I've grown out of mine apart from one area and I'm wary of thinning my skin or developing white blotches from the steroid creams so it's catch 22
I'd have had wet wraps as a child and they were awful and made it much worse, that's partly why I've little faith in dermatologists for eczema. I was very surprised to read there might actually be something new coming down the line!
She feels the same and says 100% caught in a catch 22. Its been those wraps, tar baths, light treatment (which damaged her sight) and the list goes on and on! All horrible things to have to do! We both hope you get some relief soon and if not stay strong don't let it beat yah!
You should check out dupixent on YouTube and Google and inform yourself incase you get the chance in the near future to have it prescribed to you.0 -
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Any idea if it will eventually be made available here, and if so, how long(roughly)? My GP's very unsympathetic when it comes to this, she only gave me 2 or 3 prescriptions for a small tube of betnovate .025, basically told me to buck up and deal with it and wouldn't prescribe any more, thankfully my mother knows someoneIt then went to clinical trial in Europe and the rest of the world but unfortunately not in Ireland as far as I know because of our laws although its quite possible it will eventually be manufactured here!. I've seen ads in the regional paper for private dermatology clinics would they be more likely to prescribe the stuff if it's ever made available? 0 -
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Widdershins wrote: »Can I ask what AD is? Is it a form of Eczema?
I got excited there thinking there is a new cure
Is there any other treatment for eczema out there? I tried antihistamines and the usual steroid creams. Every moisturiser under the sun. I have one that works well for me except for one area that drives me mad because it feels lke my skin s boiling and the mosturiser doesn't touch it.
AD is short for Atopic Dermatitis, which basically just means your skin is irritated to the point of the skin breaking out.
It is a more technical term fo eczema.
I’ve had it almost all over for 5 years, absolute nightmare!
I have thrown out all “cosmetic”moisturizers and use Halden’s emulsifying base twice a day.
It’s greasy, but it does the job!
You need to let that soak in before using any cortisone cream.
Then I’ll use Lipikar Baume AP +, when my skin is starting to get better.
It’s good for when you’re in a hurry.
I’m waiting for Dupilimab as well, as phototherapy wasn’t really helping.
Good luck with the moisturizing!
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Hope the bump is ok here.
Dupixent/Dupilumab is being trialled on an extremely limited basis in Ireland at the moment.
My consultant offered me the trial and I jumped at it.
I've had chronic eczema/AD since I was 6 months old, I'm almost 42. It had been getting consistently harder to manage in my 30s, so consultant tried Phototherapy which didn't go well. I've been on immunosuppressants orally for quite a long time now, and they certainly helped, but this drug is a different story. Having been on it for a little over three months, it has made a vast positive difference to my condition to the point that managing it is no longer a massive chore and I'm no longer conscious of my appearance; e.g. I'm happy to wear shorts and a t shirt in public (maybe the public are less happy
).
I'm somewhat fearful that the HSE will baulk at the cost of this, assuming it is licenced for general use after a year, and won't make it available on DPS. Will be interesting to see how that goes.
To those of you who aren't seeing a consultant at the moment, if you're struggling to manage your eczema, I would strongly recommend doing so. I was in the same boat, what I would describe as a happy little rut of topical steroids, until my GP pushed me back into the system and it was completely worth it.
If your GP isn't sympathetic they're being a prick and you might need to see a different GP.0 -
Wise Old Elf wrote: »Hope the bump is ok here.
Dupixent/Dupilumab is being trialled on an extremely limited basis in Ireland at the moment.
My consultant offered me the trial and I jumped at it.
I've had chronic eczema/AD since I was 6 months old, I'm almost 42. It had been getting consistently harder to manage in my 30s, so consultant tried Phototherapy which didn't go well. I've been on immunosuppressants orally for quite a long time now, and they certainly helped, but this drug is a different story. Having been on it for a little over three months, it has made a vast positive difference to my condition to the point that managing it is no longer a massive chore and I'm no longer conscious of my appearance; e.g. I'm happy to wear shorts and a t shirt in public (maybe the public are less happy ).
I'm somewhat fearful that the HSE will baulk at the cost of this, assuming it is licenced for general use after a year, and won't make it available on DPS. Will be interesting to see how that goes.
To those of you who aren't seeing a consultant at the moment, if you're struggling to manage your eczema, I would strongly recommend doing so. I was in the same boat, what I would describe as a happy little rut of topical steroids, until my GP pushed me back into the system and it was completely worth it.
If your GP isn't sympathetic they're being a prick and you might need to see a different GP.
Wow..Omg so it's here on trial already! My other half will be really interested to hear this...I'm delighted to hear it's changed your life so far!!
My other half is on a list for the trial here but her consultant hasn't mentioned anything so far! 😡
Can i ask if you are Dublin based?0 -
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Wise Old Elf wrote: »No hassle, but I don't have many answers for you I'm afraid.
I reckon most hospitals were in or around the same time, but I've no idea on when it can be licensed for general use.
I'm back with the hospital next month, I'll see what I can find out
That's great.. any info you can get will be greatly appreciated.
And keep us posted on your dupixent skin progress etc. and how you're finding it and the injections.
Best of luck
Cheers 0 -
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Wise Old Elf wrote: »The self injection is surprisingly fine. Thigh or stomach are the options. I'm a skinny bastard, but I stuck with the thigh, there's still enough fat to inject. Only once a fortnight as well so I've it set on my phone to remind me first thing in the morning.
Hey there,
How are you getting on with dupixent? Any info or update would be appreciated.
Ta 0 -
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Wise Old Elf wrote: »Don't have much to add from a licensing point of view or anything Jase, was at the consultant a couple of weeks ago and all is going well.
I came off the oral immune suppressants (Methotrexate) just after Xmas and there don't seem to be any ill effects.
I get an occasional "flare" but really that's an insult to anyone suffering with this as the glare now is a one day rash that with a teeny bit of steroid goes away again.
I made a comment to the consultant that he picked up on; "I am like a normal person" with this drug, I can shower in the nor ing without having to psychologically steel myself for the discomfort, I can sleep, I don't have to brush lots of dead skin off my bed, and all the other stuff you get used to when you suffer from eczema.
It might be also worth having a look at the eczema sub on Reddit as there's lots more people with experience of Dupixent there (mostly in USA); one caveat from there is that it doesn't work for everyone, but my experience has been totally positive.
Hey, it's great to hear your still doing well on it.. I'd say your life has changed for the better which is great! Yeah I've read about it on other boards and watched it on YouTube... the good and the bad reports but I guess hearing it from an Irish person just makes it more real and gives my other half hope knowing its being used here. Still not available for the wider public yet which sucks but still tryin ta push the consultant at every visit. We'll just have to sit tight till it lands.
Ta very much for the update.. wish yah well 0 -
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