Author Topic: Any verdict on Dupilumab  (Read 7149 times)

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Offline Joey VanDyke

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Re: Any verdict on Dupilumab
« Reply #15 on: February 24, 2016, 02:32:04 AM »
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I haven't contributed here, however I was compelled to write a post in order to share my experience, and I hope give people who might have a similar story to mine some hope!

I have had moderate to severe atopic dermatitis since I was a baby. As seems to be an all to familiar story, my atopic dermatitis has been accompanied by asthma, allergic rhinosinitius, hayfever and various food allergies! Anyway, my eczema treatment plan consisted of lots of moisturising, and using topical steroids to control flare-ups, getting consistently stronger as time went on.

I came across ITSAN, and the concept of redskin syndrome 1 year ago, and it felt like the bottom literally dropped out of my world! I read post after post, blog after blog, about the process of topical steroid withdrawal, horrified that everything I had worked so hard to achieve may just about to be lost by the debilitating practice of topical steroid withdrawal.

After drowning myself in what seemed like every blog post and medical research paper on the Internet about red skin syndrome, I became concerned at starting a topical steroid withdrawal process, not really knowing if or when there would be an end, and the associated impact this would have had on my career, family and life aspirations.

Not fully understanding the medical evidence behind the concept of red skin syndrome in those who have suffered life long atopic dermatitis, I went on a mission to find out about this new atopic dermatitis drug in phase III clinical trials that I had seen on some of the blogs about people's topical steroid withdrawal journey. That drug was Dupilumab. I am now in month 8 of the clinical trial, and I haven't used topical steroids in that time, and I have almost perfect skin (like the post above mentions, your skin feels like a waterproof jacket!) - sure you get tiny little bits of flaring (i.e. 1 or 2 days every now and again) with season changes etc, but nothing that requires anything other than moisturiser.

It's still early days for this drug, and over time we will begin to understand how are bodies are reacting to the drug. I understand and respect people's concern over modern medicine, and I have no doubt that this drug will be no different to any other, and it will take its toll on our bodies. However, I also respect those who are happy to compromise any future medicinal effect because they want to lead a life and not worry about any discomfort etc.

I'm not here to advise anyone on how to treat atopic dermatitis or the concept of red skin syndrome without steroid intervention, however if I were to give myself advice 1 year ago when I discovered ITSAN, and knowing what I do now, I would have said not to worry, as there are lots of good medical interventions in the pipeline that will enable you to life the life you want, without the worry or discomfort of not treating your skin condition.

I hope someone might relate to my story, and it gives them some hope when choosing the best course of treatment. May I also congratulate those involved in moving forward the medical debate about the long term use of topical steroids. Combined with the medical research being conducted on a host of biologics coming through the pipeline for atopic dermatitis, I have no doubt that this new era of treatment options will allow us to better understand and ask question on the side effects of treating atopic dermatitis with regular topical steroid application.

Good to hear you are doing so well and thanks for the kind words.  :rainbow2: :smiley:
Started TSW 9-2010- fully healed at 62 months. :)

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Offline burningseamstress

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Re: Any verdict on Dupilumab
« Reply #16 on: July 27, 2016, 11:34:53 PM »
Hi! I'm just updating on my improvements through use of Dupilumab. I was in a phase 3 study for a year and saw little improvement ( I began those injections about 5-6 months into TSW) but hung in there for the promise of the real drug in the open label study. I began the actual drug in March of 2016, and my stubborn skin immediately began to clear, indicating that I was on the placebo or low dose during my phase 3 trial. What a difference! I'm almost exactly 2 years today off of topical steroids and thanks to this drug bringing down my stupid inflammation, I have better skin than I ever have had in my entire life. I still have trouble spots primarily on my neck and face, but that's where I had the worst rashes and applied the most steroid creams.
     The first TSW symptom to go was the strange pimply papules all over my body, within a week of the first injection. Then the open sores. Then the dryness, then the shedding and slowly, the discoloration and scarring. The itchiness slowly faded too, which was SUCH a blessed relief. I tried MW For 50 days back in my early TSW days and it was atrocious. Now, I only apply mousturizer to my hands, neck, and parts of my face. There is no need to mousturize the rest. I'm actually oily now, which is something new and strange. My skin can take a beating, get sweaty, get soapy, and get cut and heal like normal people's skin.

I'm hoping that once I am no longer able to take or afford this drug that my body will have healed and naturally reduced the inflammation so I won't need to rely on it long term. I'll keep updating down the road, but it might be a while since I'm not experiencing any side effects.
Lifelong eczema sufferer. Been on every TS out there, protopic, oral prednisone and steroid shots. Two years TSW as of July 26, 2016. On Dupilumab since March 2016 and seeing drastic improvements.

Offline Jesse

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Re: Any verdict on Dupilumab
« Reply #17 on: July 31, 2016, 05:13:31 AM »
Not a day goes by that I don't regret not signing up for these clinical trials. I have suffered TSW for over 3 years with no real improvement. I didn't do the trial because I was scared of turning to another drug after steroids destroyed me. Why didn't I apply? I could be healed by now, living like a happy normal person. Suffering because of missed opportunities is becoming the story of my life. It seems so cruel that the answer is right there and I can't have it because I failed to act sooner. I didn't even know this drug existed until six months ago. My terrible luck never ends. By the time it's available on the market I won't be able to afford it anyway, and even then I'll have lost god knows how many years of my life to this prison sentence within my own body. Sometimes I think of taking my own life, the pain is so terrible. I can't get this drug for my disfigured face that burns like battery acid every night while other people are receiving it for minor cosmetic imperfections on their body because I'm a loser who can't act in the moment. Well * me.

Offline sp3000

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Re: Any verdict on Dupilumab
« Reply #18 on: July 31, 2016, 11:23:44 AM »
Jesse, I also heard about the drug a little late, and the clinical center in my area that was conducting the study had just stopped accepting patients.  Obviously I was devastated, because at that point eczema was affecting every part of my life and I was looking for relief wherever I could find it.  I scoured all the eczema forums, found other drugs that were in development, personally emailed the pharmaceutical companies asking when these trials would start, etc.  I was about to start a trial for a different drug, when I, I think in this very forum, I found a member who was in the Dupilumab trial in an area that I was moving to in a few months.  I personally messaged her, and she said her site was still looking for more participants, and I immediately jumped on the opportunity, got in touch with the site, and two months later (even though I hadn't moved yet, it was a 5 hour drive) I went for a preliminary appointment to make sure I qualified.  Within a few weeks I was accepted, and, after I had moved, started the trial shortly after.  It is the most significant change that has ever occurred in my life, and I feel lucky and blessed everyday that I am part of this trial now, as my skin has completely cleared up (I still have minor itching, but my skin feels smooth and clear). 

Here's what I urge you to do.  While the clinical trial ship for Dupilumab has sailed, there are other eczema drugs in development (by multiple pharmaceutical companies) that have shown promise.  A couple of these are biologics similar to Dupilumab.  If you don't want to miss the next boat, you need to stay on top of this.  Go to clinicaltrials.gov and search for eczema and atopic dermatitis studies (make sure you check the box "open trials" in the search function) in your area, and apply to all that seem relevant.  Do google searches on all the drugs, and cross reference them in major eczema forums (the Inspire national eczema association forum is also a big one) to see what people are saying about the trials they are in.  New trials are open and closed every month, so it takes a little persistence. 

I have now truly experienced life without constant itching, embarrassment, pain, and bleeding after 32 years of suffering.  I used to essentially feeling like someone who is 80 years old and could barely walk properly (you can find my before and after pictures in a previous post).  Now I am exercising and trying to do as much as I can to take advantage of the situation, because even though Regeneron have said that I will be on the open label trial for the next 3 years (which is amazing), nothing is guaranteed.  Don't give up, a great life is possible.  Just start researching for trials right now.  If you need more help or information just message me.