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Thread: Avacopan

  1. #11
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    Default Re: Avacopan

    I suppose it could depend on severity of disease, some might still need RTX, but maybe people who haven't needed RTX (like me) could still get by without it. Pure speculation. I posted the article on a Facebook vasculitis group and people went nuts with joy, but there's a lot we still don't know. I also read it as @vdub and @Pete read it. But someone on FB said they thought it wouldn't make RTX unnecessary. People in England have apparently heard a lot more about it, and the trials that were conducted, than we have. A couple of them were discussing between themselves about whether they should buy stock in the company. I'll be waiting to hear what Dr. Villa Forte has to say, @Pete.





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    Anne, dx'ed April 2011

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  3. #12
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    Default Re: Avacopan

    Hey Y’all,
    I am like a dog with a bone regarding avacopan.
    Found an interesting article by looking at Chemo-centryx Motley Fool. My husband found their 3rd Q conference call, too. That was very long and a lot about their financials. What I did find of interest in the second article were the two doctors who joined in, Dr. John Nash, Mass General and Dr. David Jane, Cambridge. It seems I heard the name Dr. Jane on this site from one of our members. Who?
    Looks like the drug will be released at the end of 2020, start of 2021.
    Chemo-centryx the US company for this drug is in Mountain View, CA. My husband got a kick out of it when I told him I may call them tomorrow and tell them there are those of us waiting for them to get this show on the road.
    The first article refers to us as patients with an orphan disease. My guess is we are only the beginning. No one would put this much money (see conference call) into something for orphans.
    Your thoughts?
    Masha
    Last edited by Masha; 01-22-2020 at 03:29 PM.

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  5. #13
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    Default Re: Avacopan

    There are several UK folks on here who see Dr Jayne at Addenbrookes in Cambridge. Geoff, Freakyschizogirl among them.

    Iím very interested in this drug. Hoping itís a lower cost alternative to rtx, mtx, and ctx. Curious about side effects too.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  7. #14
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    Default Re: Avacopan

    Hi, Masha,
    Yes, Dr. David Jayne was mentioned in the article posted by @Pete at the beginning of this thread. But he has been mentioned many times on this forum over the years, at least since 2011 when I joined. That's because several of our members in England have gone to him, and still do, for their GPA treatment. Unfortunately for us, some of these no longer, or rarely, post here, though I know they post in some of the Facebook GPA groups. Anyway, he is known worldwide as a GPA expert.

    Sorry, I don't have much to speculate on whether there are others, not "orphans", who would be benefitting from avacopan, though I imagine there would. I think probably all the drugs we use are used in treating other diseases, some autoimmune, some maybe not. But I think knowing that Dr. Jayne is involved would indicate that the trials on this drug were done with us largely in mind.

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    Anne, dx'ed April 2011

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  9. #15
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    Default Re: Avacopan

    Hi, Pete,
    I posted the article on one of the GPA Facebook groups and got a big reaction, with lots of interest and speculation (as I posted above). Some of them seemed to have some knowledge of it, from observing round-table discussions, seeing news items in the UK, etc. They seemed to be of the mind that it wouldn't take the place of Rituxin, but would just eliminate the need for prednisone. Well, I don't take Rituxin, so I wonder where that leaves me. The article implied to me that avacopan could stand alone. But it mainly compares it to prednisone, not mentioning Rituxin or any of our other immunosuppressants. However, then it quotes Thomas J. Schall, president and chief executive officer of ChemoCentryx as saying it's been demonstrated to be "superior to the traditional approach of broad immune suppression therapy; a therapy which the present findings may make obsolete." Broad immune suppression therapy, for us, would include RTX, CTX, MTX, etc., as well as prednisone, wouldn't it? So, I think the article is a little deficient in that regard, by only naming prednisone and none of our other meds. And Dr. Jayne wasn't quoted as mentioning any drug but prednisone, either. I guess we will have to wait and see.

    Oh, and @Masha, the article said the FDA had granted it orphan drug designation for vasculitis and a couple of other diseases I hadn't heard of. For whatever that's worth.

    Anne

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    Anne, dx'ed April 2011

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  11. #16
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    Default Re: Avacopan

    From Wikipedia (because I didnít know)


    An orphan drug is a pharmaceutical agent developed to treat medical conditions which, because they are so rare, would not be profitable to produce without government assistance. The conditions are referred to as orphan diseases.



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