My DMD Finally Gets a Name

[immisceo]

I've been part of a drug trial for over four years. During this time, the snappiest version of the name of the drug we could use was DAC-HYP a.k.a. daclizumab high yield process. But about a fortnight ago, EU marketing approval (a required step on the way to coming to the market) was granted to...

Zinbryta

I'm more of a technical gal, so I'll probably always call it daclizumab, but perhaps in future there will be less head-scratching if I use the name more people are used to see more often. Once we figure out how it's supposed to be pronounced.

http://www.finances.com/company-news/79142-european-medicines-agency-validates-marketing-authorisation-application-for-zinbrytatm-daclizumab-high-yield-process-for-treatment-of-ms.htm

[karryon55]

Thanks for that info immi! I did some research after I read your post earlier and as far as I have read the Daclizumab is only available to transplant patients and I saw nothing about its availability in RA in Australia. I thought by going through the RA route I may get it more easily than the MS route but neither is available here yet.

Daclizumab has been recognised as a DMD that "may" be of help to other autoimmune conditions. I just wish I could remember the name of a DMD that became available recently and someone was talking about it on this forum. That DMD (whatever it is called) is used in both RA and MS. I need one to fit both because I have suffered Neutropenia before which is exacerbated by using two DMD.

My Rheumatologist seems to be happy for me to continue with my Rituximab in the future but my Respiritory Physician does not agree and thinks this is playing with fire. I know I can't solely blame the Rituximab for what happened as I was having breathing problems before I went into hospital for it.

I will read the link you have given me and maybe I will understand more after reading that.

Thanks again!

Karry.

[immisceo]

I'm so sorry to hear about your complications, Karry! That must be both frustrating and concerning.

DAC HYP  is a monthly in-home subcutaneous injection, but at present my study is on extension and not currently recruiting (you had to have completed the Phase III to be invited to the extension). It likely won't come to market for another couple of years.

That's not to say there may not be other avenues (I think the National Institutes of Health was studying it in Maryland for a while), but here are the details of my study.

https://clinicaltrials.gov/ct2/show/NCT01051349

Daclizumab is probably best known for its use in kidney transplant recipients (as "Zenapax"), but this is a specific formulation (the "High Yield Process" part) that's not been in use before and is only available through Biogen.

It may be that someone will prescribe a different formulation 'off-label', but data on its effects would be a lot more scarce I would imagine.

[karryon55]

Your timing is impeccable immi. I have just spent time in ICU partly from my Rituximab infusion but had some Respiritory arrests and have not been able to finish this course so that's $7k down the loo which they won't fund again for 6 months.

I believe that Daclizumab has been used in Rheumatoid Arthritis as well so this may be my saving grace. I'm not sure I should even consider continuing Rituximab as I have had really rare side effects since day one. I have to think long and hard right now about my options. I actually love my Rituximab but it doesn't love me so that kind of partnership is never good. :D

Is it given via infusion or injection? I am going to research its availability for RA where I am because I believe it should already be available under RA versus MS.

Great news to hear and thank you for sharing.

Karry.

[immisceo]

Oh, technical/chemical names I totally get.
http://en.wikipedia.org/wiki/Nomenclature_of_monoclonal_antibodies
Nice and unambiguous!

It's the actual branded/marketed names that are pretty crazy. It has to do with being unique to anything that's ever existed before so they can protect it, market it, have it always mean their drug when googled. And I guess there are only so many phonemes in the language! But it's funny when you can peg a drug's release date to drug naming "trends".

"Most pharma industry professionals agree that the dual challenges of regulatory approval and legal trademark registration in the pharma space plays a preeminent role in every aspect of the pharmaceutical trademark development process. "
http://www.prnewswire.com/news-releases/2013-pharmaceutical-drug-naming-trends-205778081.html

[essdipity]

Yes, drug names are a mystery. I 'get' some of it--things that end in 'ab,' or contain 'acet.' Others are baffling.

I'm on Tecfidera, a weird and ugly name if I ever heard one, though possibly there's an insider reason for it. In trials it was just known as BG-12 (being the 12th iteration of something or other in Biogen Idec's arsenal). Although it, or just Tec, is readily pronounceable, I thought BG-12 was a lot easier.

Oh well, they didn't ask me :-)

ess

[immisceo]

Who knows what goes into that mystical pharmaceutical naming process. Though, I read a fiction book ages ago where one of the characters did that as part of his job. Pretty sure that character went insane eventually.

Hysterically, because it's difficult to remember, a lot of initial articles were just copy-pasting the name, meaning they kept stating the name as "Zinbrytatm". On first glance this looks even more impossible to pronounce until you realise they cut the trademark classification "TM" off the end of whatever they originally copied and didn't do much due diligence in the copy editing department!

[supermum_ms]

That great news but lol you'd think for the benefit of MSers they'd come up with easier names hmmmmm Zina sounds good cause it makes me think of warrior princesses and that about sums it up lol keep up the good fight babe!

Cheers........JJ  

[immisceo]

Thanks Barb! Gratitude for folks who were on drug trials back when there were zero options for those with MS definitely played a factor in my decision to participate.

[bbassel]

If we never had the kind people like you to participate in drug trials, there would be no drugs available.

Thank you aand I hope this drug keeps working for you and help many other people ; )

Barb

[immisceo]

Thanks! Bear in mind, it's still a few steps away from being officially available, but this is still definite progress. The wheels of research and approval work on a very particular calendar!

Theoretically it could still have a name change between now and then, but for now this looks like what they're going with. I've certainly had good luck with it, and for me that monthly at home injection has been ideal. Until one is named Cure, I like to think "the more the merrier" as far as treatment options go!

[4happygnomes]

Blessings to you for partaking in a drug trial!  That's a doozy to pronounce,  I hope it ends up with a nickname like "the Cure" or the "magic pill" =-)

Karen