After waiting nearly 17 months with one setback after another and texting a friend saying “I’ll believe it the day the drug is actually inside my body” , well now I can actually say that, because today, Nov 6th 2017, I finally received my first two injections of a new anti IL-4 IL-13 biologic drug Dupilumab, and in doing so, became the first person in the world to receive the drug for the treatment of asthma outside of a clinical trial.

They gave me the 300 mg in my stomach and another 300 mg in my arm at the clinic. After a couple months I’ll give myself the injections at home.

Because my FEV1 is so low and because the drug is still considered experimental for the treatment of severe asthma, they want me to keep a diary to log any adverse reactions or side effects during the first month. It’s now been 24 hours since my first dose and knock on wood, no obvious allergy or side effects from the medication except for some minor fatigue which is normal.

This crazy journey began back in May of 2016 when I approached a representative of the company who makes the drug, Sanofi, about the prospects of obtaining it on a compassionate use basis. 6 months later with the help of Dr Wenzel and the other Pulmonologists who have taken care of me, the company approved the request and sent the required forms to UCSF where I receive my medical care. Because the drug had not yet been approved by the FDA for the treatment of asthma, it took the University’s internal review board a lot longer than usual to approve the request. In mid August of this year UCSF gave the green light for me to start the injections, but just few days later, the University had been notified by Sanofi that they had cancelled their compassionate use program and that I would not be receiving the drug after all. As you might imagine, I was beside myself. Thankfully, a few days later and after a few phone calls, the program was reinstated.

It will probably be several months before I’ll know if the drug is helping, and being somewhat of a realist after having tried almost every medication and treatment available for asthma, Im not expecting a full blown miracle. But, if it can help reduce my exacerbations or the severity of them, even just slightly, I would classify that as a semi miracle.

Regardless of the outcome though, Im eternally grateful to be given early access this potentially life changing drug. A special thank you to my pulmonologists and the research coordinators at the the UCSF Airway Clinical Research Center, as well as Dr’s Gianluca Pirozzi and Sally Wenzel and the folks at SanofiRegeneron for making this happen.

To others out there who are suffering from this disease, this is why it’s so important to advocate for yourself.

Here’s the listing:
The Dupilumab compassionate use study (NCT03020810)intervention Details:

Drug: Dupilumab
The patient will receive a 600 mg subcutaneous dupilumab loading dose on Day 1, and then 300 mg subcutaneous dupilumab every 2 weeks

Detailed Description:

This is a single-patient study.This study is being undertaken to determine whether dupilumab has efficacy in extremely severe asthma, and to allow a very severe asthma patient, who has been tried on nearly every immunosuppressive drug, early access to a potentially effective therapy.

The patient will continue in the study indefinitely. Safety will be evaluated and serious adverse events will be reported.

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3 thoughts on “And so it begins….Dupilumab

  1. Liz Bernard says:

    Yes, yes, yes!
    Here’s to a better quality of life for you!
    I’ve followed your blog since I was diagnosed back in 2012 and you’ve really been through it with your asthma — I’m so hopeful this is your Fountain of Youth, so to speak.

    I am also excited to know if this will be the breakthrough asthmatics worldwide have been looking for.
    Thanks for being our guinea pig.

    Keep being the badass-matic you’ve always been!

    1. Thanks, that’s very kind of you. I was actually off to rocky start, as I was having a worsening of symptoms right after I received the first injections. After talking with my medical team, we think my symptoms were due to my asthma, not the Dupilumab. After bumping my pred up to 50mg , I started breathing a lot better, so we’re gonna proceed with the next dose of Dupilumab which is next Monday. It’s really tricky to weed out medication related side effects from the disease symptoms.

      I know of one other person who is on the drug as part of a clinical trial in Canada and it took her about 3 months to see a difference. Her asthma is much different than mine, but Im hoping to achieve similar results. If this drug can help me, even a little, Im sure it can help others. I just wish it was a little more affordable for people. The current price is set at $2800 per injection/month and of course insurance wont cover it. Thankfully, Im getting the medication free for the time being.

      Thank you for taking the time to write.

      Steve Xx

  2. Michelle says:

    I was wondering how most people on this blog remain employed. I have had 4 exacerbations since January 2018. I haven’t been hospitalized but they all seem to follow the pattern that Stephen described at the beginning of this article. I don’t have major exacerbations but they seem to be underrated by my physicians. They said I should not have an exacerbation lasting longer than 5-7 days. I told them I am lucky if I am strong enough to go back after 14 days. When filling out my FMLA paperwork to save my job, the doctor indicated 2-3 exacerbations per year lasting 5-7 days. Well, if the year continues on the way it began, I guess I will be jobless. I will be 62 in 6 months, planned on working until 66.5 but don’t think it makes sense to try. I worry about my co-workers always having to pick up the slack. It really bothers me a lot. I am considering filing for disability but not sure if that is an option for me or what it takes to be granted. I would be grateful for any comments on my questions. Thanks for being here, it has made me feel better about my recovery time. Be well.

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