Author Topic: Dupilumab Update  (Read 474 times)

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Offline melaniem

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Dupilumab Update
« on: June 12, 2017, 08:57:15 PM »
Hey everyone,

It’s been awhile since I’ve been on here. Just wanted to give everyone an update on how I was doing considering that Dupilumab is now in the market. Dupilumab, or now officially Dupixent as the call it, has been amazing for me with virtually no side effects for me personally, as I’m sure you already know from my posts throughout the years. I’ve been on it for 3-4 years now. I’m not perfect but I would say I’m 80% good in the Winter and about 95% good in the Spring/Summer. My occasional problem areas are pretty much localized to my face but it’s very minor. I’ve read a lot of concerns on the price but I’m on transition label so I’ve been continuing to get the drug for free until insurance kicks. I know insurance companies have started to cover it already as long as you go through the extra process of pre-authorization. The co-pay card pretty much covers anything you would have to pay.

Another option is that I know that my doctor’s office is currently recruiting patients for more dupilumab trials. This one is testing medicine delivery with a regular syringe vs an automatic injector, and in this case everyone in the trial gets drug for free. It runs about 9 months from ages 12 – 65. You can DM if you need any information.

Looks like Dupixent could be another tool in the tool kit to help relieve TSW as it did for me. Not all modern medicine is bad. Everyone is different but for me it gave me my life back.

Hope everyone is well. Cheers.
TSW started mid-October 2013.
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Offline AYID

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Re: Dupilumab Update
« Reply #1 on: June 12, 2017, 09:38:59 PM »
And what happens when you STOP using the med? That is what I would like to know.

I am happy you are doing well, but is it an artificial wellness, like with the steroids?

Offline melaniem

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Re: Dupilumab Update
« Reply #2 on: June 13, 2017, 12:31:49 PM »
I had a 6 week break of no medicine in between trials before transitioning into open-label and I never had the dreaded withdrawal of what I what go through like a "steroid rebound". Changes were marginal, and about 4 weeks in, my skin started to get a bit more sensitive, and itch came back slowly, but absolutely nothing like stopping steroids.
TSW started mid-October 2013.
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Offline Georgie.C

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Re: Dupilumab Update
« Reply #3 on: June 13, 2017, 02:02:04 PM »
Hello,
Thanks for the update! Glad you are feeling better.

Is dupilumab something that needs to be taken ongoing then? I.e for the rest of our lives. Or something that we can take just to get over this?

All the best.

Offline Andrew B.

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Re: Dupilumab Update
« Reply #4 on: June 13, 2017, 03:47:09 PM »
Given that you've been off steroids for almost three years and your YouTube videos rank in the TSW top 10, do you think you will be making an update video soon?
Used TCS for 15 years before starting TSW in early 2013.


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Offline AYID

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Re: Dupilumab Update
« Reply #5 on: June 13, 2017, 04:28:29 PM »
I was going to refrain from commenting, because I don't want to rain on anyone's parade, but I think there are points that we need to address:

1. Six weeks off even steroids is often not enough time for dramatic flaring in most patients. In Dr. Rap's studies, he has noted what he calls the "honeymoon period" that many patients experience. The creeping, dramatic flares don't usually occur until 3-4 months, though some get earlier.
I assume that this may have been what you experienced, having only baby flares. The only way to know what would really happen is to stop the medication for 6 months or so.

2. Dupilumab is such a new drug, who knows what the side effects will be?

3. Did it stop the healing? Put it on hold? who knows...

Personally, I believe it is detrimental that patients are being put on to new drugs to "treat" a condition caused by an old drug that is simply healed by stopping the old drug....

I am happy you are doing well, and I sincerely hope that there are no damaging effects of these drugs.

Offline JulioC

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Re: Dupilumab Update
« Reply #6 on: June 15, 2017, 12:07:41 AM »
Started a month ago dupixent and was approved through Medicaid free of charge. I'm seeing a difference. How long does it take to see full effect ?

Offline coalrush

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Re: Dupilumab Update
« Reply #7 on: June 29, 2017, 10:38:59 AM »
@melanie I'm looking forward to hearing how your journey with Dupixent goes. I recently started the drug too and would love to share notes with you and others.

@ Julio, if you look at the National Eczema's site which explains how Dupixent works, it says that half of the patients in their clinical trials saw results in 16 weeks (4 months). You can see that link here:
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I'm checking into this thread too because I also just started Dupixent. I had my loading dose a week ago and i'm due in the next few days for my second dose. I'm not seeing a difference yet except that it took nearly a week for the redness (RSS i imagine) to calm down from a recent flare.

@AYID I had the same concerns as you when I was deciding whether or not to move forward with Dupixent. Ultimately, I decided that my eczema has hindered my life so much that at age 34, I'd like to have my life back without being in pain whenever I have a flare or staph infection. I've also been reading posts/reviews and it seems positive so far. I'm also excited for the science behind how the drug works despite how scary it is to be injecting yourself with something that changes your immune system.

@Georgie This is supposed to be a drug that you take for the rest of your life. I'm also hoping that eventually this is something I can taper off of. I took cyclosporine for almost a year. When I stopped taking it, there was a month of flare ups but then it tapered off. I'd like to think that the body will try to normalize itself after a drug's half-life in the body.

Steroid-free since March 29, 2015. Chronic eczema

Offline AYID

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Re: Dupilumab Update
« Reply #8 on: June 29, 2017, 11:18:36 AM »
Sharing what Dr. Rapaport has to say about the drug:

I am writing in response to an article that appeared in the December 15, 2016 edition of the New England Journal of Medicine, entitled “Two Phase 3 Trials of Dupilumab versus Placebo in Atopic Dermatitis.” It is with great concern for the conduct of sound scientific studies, combined with heavy dread for the outcome of patients that will be treated with this drug that prompts me to submit this article for hopeful publication.

As a board certified dermatologist, medical professor, and former head of the Contact and Photo Dermatitis Clinic at UCLA, I have worked with thousands of patients suffering from skin conditions ranging the gamut from psoriasis to seborrheic dermatitis. Through the course of my work with patients, it became obvious that many of the patients diagnosed with atopic dermatitis, were — and still are — misdiagnosed.

Classical atopic dermatitis as described in Rook’s Textbook of Dermatology (1968) presents as the following:
Itching is the cardinal symptom, the lesions consist of discrete papules (prurigo), half the cases clear up by the age of 18 months, the childhood phase typically involves the flexures of the elbow and knee, lichenification is common, the adult phase manifests itself as essentially similar to that in later childhood with lichenifications in the flexures, erythroderma is very uncommon.

 

While we do see this classical presentation at times, we also see another form of rash touted as atopic dermatitis, despite radically different clinical presentation, symptoms and result of biopsy. In this second set of patients, spongiosis is found upon biopsy, erythema and sensation of burning is present, as well as frequent edema, skin oozing, pain, and often papules. In addition, there is significantly increased and overwhelming itch, far beyond what is experienced in true atopics. Flares of redness and periods of heavy skin-flaking are cyclical and the patient may even experience breaks of clear skin. Elevated nitric oxide levels are present, as well. Suppression of symptoms is possible through use of glucocorticosteroids, though the patient continues to progressively worsen with time.

And therein lies our problem.

Since the inception of glucocorticosteroids (GC) became available as a remedy to treat atopic dermatitis, physicians have been prescribing these medications in varying applications, potencies and frequencies. Due to the GC fervor that rapidly spread through the medical world, however, respectable physicians somehow became blind to the scientifically proven side effects of the long term use of these most powerful medications — additional to the drug and skin atrophy.

As for the patients themselves, they are frequently unaware of potential side effects and have no qualms regarding frequent applications of GC therapy. Due to the vasoconstriction method of GCs, patients experience symptomatic relief during use, but frequently find that they must resort to increasing amounts and ever-stronger potencies of GCs in order to experience skin clearing. In short, patients that may have originally presented with true atopic dermatitis develop a steroid addiction, skin atrophy, and the host of symptoms listed above.

Pinpointing the variance between the two diagnoses of true atopic dermatitis and steroid addiction (Red Skin Syndrome) is absolutely vital before treating the patient at hand.

Herein lies the first concern with the Dupilumab trial:

 

Concern #1

The phase 3 trials of Dupilumab included hundreds of patients labeled as having moderate-to-severe atopic dermatitis, of  which they write:

 

For patients with moderate-to-severe atopic dermatitis, topical steroids have limited efficiency.

 

Many, if not most, of these patients would doubtlessly have presented with spongiosis on biopsy and clinical presentations concurrent with the diagnoses of Red Skin Syndrome (RSS). For these patients, topical steroids having “limited efficiency” is due to the factor of steroid addiction.

Distinguishing the RSS patient from the true atopic is vital in order to fulfill the Hippocratic Oath that states physicians will do no harm. RSS patients are not in need of immunosuppresant or antimitotic medications targeted at taming their skin problem, though they may require supportive medications for symptom management such as burning, itching and insomnia. RSS patients need only one treatment protocol to regain the health of their skin: complete cessation of glucocorticosteroids.

 

Concern #2

The Dupilumab trial was performed in a method that invalidates any positive findings the researchers may have obtained. As listed in the article:

 

Topical or systemic rescue treatment of unacceptable symptoms of atopic dermatitis could be used at the investigators’ discretion.

 

And:

 

Rescue treatment for atopic dermatitis could be provided to patients if medically necessary (i.e. to control unacceptable symptoms of dermatitis).

 

The Dupilumab trials were initiated to discover the extent to which the medication is available to provide relief for patients suffering from (what is often misdiagnosed as) atopic dermatitis. By allowing these patients to resort to using additional forms of (topical) therapy and yet continue as a participant in the study, any possible skin clearing and therapeutic benefit achieved could no longer be attributed to the Dupilumab.

Furthermore, there was only a 35-day “screening and washout” period, in which it can be inferred that study participants abstained from topical and systemic treatments for their skin condition.

Based upon the well-founded assumption that many, if not most, of the Dupilumab trial participants were RSS patients, it is clear that they were not given adequate time to fully experience a drug “wash out.”

In my experience of working with nearly 4,000 RSS patients that have achieved complete healing, I have witnessed time and again that RSS patients frequently have a “honeymoon period” after cessation of GCs that can last between three and four months. After this initial phase, the symptoms of RSS (as mentioned above) significantly worsen for several months until eventually marked improvement occurs months — and sometimes years — later, until the point of healing.

A study that was performed unknowingly on RSS patients that involved only 35-days initial abstention from GCs, and a short 16-week study in which intermittent GCs were used for symptomatic relief cannot provide the complete picture of what this drug can or cannot provide for suffering patients.

 

 

In conclusion, I would like to draw attention to the history of medical advancement.

Medical advances throughout the ages have always been made by physicians that have demanded that archaic methods of healing and manners of dealing with the injured be dutifully examined and discontinued if the evidence points towards patients’ harm.

Just as Dr. Ignaz Semmelweis discovered the link between harmful bacteria and increased patient mortality after physician-assisted childbirth as compared to the lower rates of puerperal-related deaths in midwife assisted childbirth, so too do we, as a medical community of analytically-minded physicians, need to reevaluate skin conditions routinely called “atopic dermatitis” and their care.

For too many years the numbers of patients with “incurable eczema” have grown; for too many years glucocorticosteroids have been given without any form of regulation. For too many years, patients have been experiencing skin atrophy and the onset of Red Skin Syndrome. And now too, these patients are frequently misdiagnosed as individuals with atopic dermatitis.

It is time to reevaluate the way the medical world is indiscriminately prescribing GCs. And it is time for us to recognize that it may be our own medically-induced mistake that is causing patient suffering.

RSS patients are not in need of additional immunosuppressant and mitotic medications or further glucocorticoid steroids; they are need of steroid cessation. They need correct diagnoses and correct guidance. They do not need trials of new drugs to treat their iatrogenic illness — and certainly not when those trials contain so many causes for concern.

Offline Andrew B.

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Re: Dupilumab Update
« Reply #9 on: June 29, 2017, 04:00:50 PM »
mel b put up a new video on youtube to answer questions

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


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Offline BrothaJeff

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Re: Dupilumab Update
« Reply #10 on: June 29, 2017, 09:02:22 PM »
Hey Mel. I also got red hot spots around the face while using Dupilumab. I stopped for 4 weeks and they calmed down. I think I've been using Dupilumab for so long that it started to lose it's effect. But after I stopped and started again it worked again and cleared me up.

AYID- I went through a brutal withdrawal from head to toe all red and itchy. I was still having a few weird symptoms when I decided to start Dupilumab and it cleared me completely for a good 6 months. Then its effects started to wear off a little bit and in the winter I got some red little patches on the face that would come and go. When I stopped the drug I only dealt with mild regular eczema that I've had before on the inner elbows and some around the back of the neck. I didn`t go back into withdrawal like when I was on steroids. When I stopped steroids the next day I was in full blown withdrawal covered in red skin.
Stopped topical steroids April 2013

Offline AYID

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Re: Dupilumab Update
« Reply #11 on: June 29, 2017, 10:06:24 PM »
So here's my thought: TSW is so unpredictable, how can we attribute clearing to the drug? And likewise, the effects wearing off? Perhaps the clearing was part of your natural TSW healing, and now you are flaring up again because the drug is really worthless... Who knows?