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Thread: New drug study in the Netherlands: Supresses inflammation without impairing immunity

  1. #11
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    My scientist/doc at the University of Washington told me about ten years ago that things were headed in this direction.
    I hadn't seen any progress until now. I only see him about once a year now but when I do I'll ask him about this.

  2. #12
    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by me2 View Post
    My scientist/doc at the University of Washington told me about ten years ago that things were headed in this direction.
    I hadn't seen any progress until now. I only see him about once a year now but when I do I'll ask him about this.

    Definitely in the right direction, from another thread: " Don't stop researching " posted by member BookNut -

    Member pwc51 posted the following on 4-20-2015:

    "I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times! "



    I would love to see the material from that Symposium!


    Last edited by Bing505z; 04-28-2015 at 02:08 PM.

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    I wrote an email to the UK Vasculitis people about this great symposium they had to see if there were videos available from it like there are from symposiums here in the US. I got a very nice and prompt response. Here is what it was in part:
    Hello Kirk


    Yes, I believe the Patient Symposium was a great success. The whole event was video's under the auspicious of the Vasculitis Foundation in the US. Therefore, I am sure that once the editing has been done it will be available through the VF on some media, or will be available from Vasculitis UK - although the exact mechanisms have yet to be agreed.


    So watch this space. I will copy this to John Mills and I'm sure that when it is available it will be advertised widely on the various vasculitis social media group sites.


    I also believe that there will be a special Symposium V-UK Newsletter later in the year and, if so, this will be available to read on the V-UK website.

    (Me2 again- so, it looks like we will be able watch this some time in the not too distant future. I know it takes a little while after symposiums for the VF to get a video ready. As soon as any of us hear about it being available lets start a thread on it. I have been to a few of these symposiums and they are extremely well done and full of valuable cutting edge information for us weggies.

    Thanks Bing505z for pushing some interest in this)

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    Quote Originally Posted by me2 View Post
    I wrote an email to the UK Vasculitis people about this great symposium they had to see if there were videos available from it like there are from symposiums here in the US. I got a very nice and prompt response. Here is what it was in part:
    Hello Kirk


    Yes, I believe the Patient Symposium was a great success. The whole event was video's under the auspicious of the Vasculitis Foundation in the US. Therefore, I am sure that once the editing has been done it will be available through the VF on some media, or will be available from Vasculitis UK - although the exact mechanisms have yet to be agreed.


    So watch this space. I will copy this to John Mills and I'm sure that when it is available it will be advertised widely on the various vasculitis social media group sites.


    I also believe that there will be a special Symposium V-UK Newsletter later in the year and, if so, this will be available to read on the V-UK website.

    (Me2 again- so, it looks like we will be able watch this some time in the not too distant future. I know it takes a little while after symposiums for the VF to get a video ready. As soon as any of us hear about it being available lets start a thread on it. I have been to a few of these symposiums and they are extremely well done and full of valuable cutting edge information for us weggies.

    Thanks Bing505z for pushing some interest in this)
    So please let the rest of us know when anyone notices these videos are posted. Thanks everyone.
    Karen; dx'ed April 2014

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    Science! I am very excited about the idea of medications in the future. It would be very nice to have a one thing helps all. This just screams payday for someone. My bets are still on the genetic nano technology guys but this is good evidence that chemistry could really be the answer
    Experience is the only way to survive. <3 Rini Orange

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    Quote Originally Posted by vdub View Post
    HA! I was reading down through the messages and I saw Deb's first message, so I went back up to re-read and see what I missed... :-) I should have kept reading to her 2nd message....
    LOL,,,Sorry vdub to make you reread that again,that will teach you to listen to everything I say !!!!!!!!!!!!!!
    Life isn't about how you survive the storm, but how to dance in the rain !

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    If anyone wants to read more about Dalazatide, I found this great overview:

    Marine Drugs | Free Full-Text | Development of Highly Selective Kv1.3-Blocking Peptides Based on the Sea Anemone Peptide ShK | HTML

    Some tidbits I found interesting:

    -The phylum Cnidaria includes some of the most venomous animals on our planet. Within this phylum, the Anthozoa class are found in both fresh water (hydroids) and salt water (sea anemones, jellyfish and corals) environments [1,2]. Most of these animals possess unique stinging cells known as cnidoblasts, which function like hypodermic needles, delivering a potent venom cocktail that helps to both immobilize prey and deter predation. As chromatographic separation methods have improved over the past several decades, the venom components from many of these species have been isolated and studied. The venom of the Caribbean sun anemone, Stichodactyla helianthus, contains, among other components, large cytolytic proteins and numerous ion channel blocking peptides

    -medical reports of people with autoimmune diseases documented amelioration of their symptoms following scorpion envenomation, prompting interest in understanding the cause of this effect


    Rituximab is made from Chinese hamster ovaries...now on to Dalazatide from Caribbean Sun Anenomes! It's amazing that there are researchers out there looking into such specific things. And of course, I'm grateful for the animals that are being studied!

    What's interesting to me is that it seems this works more on the T cells, wheras Rituxan works on the B cells. My nephrologist mentioned that there are multiple pathways in the immune system through which Wegener's works, not just the B cells, which is why sometimes people can flare even when their B cells are depleted after a course of RTX. I wonder if T cells are another pathway that is being studied?

    I always have more questions about this diesease and am interested in continuing to follow the research. @me2, please let us know when the videos from the UK symposium are posted!

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    From today: http://www.kinetabio.com/press_relea...dalazatide.pdf

    I see my Rheumy tomorrow. I will ask him about this. It doesn't sound like it is being studied specifically for WG but in my experience it could be applied relatively soon. I remember when Rituxan was just experimental.

    While I am in Seattle I will stop by Kineta and see if there is anything good in their dumpster. That's my level of science

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    Awesome, Kirk. They did mention ANCA Vasculitis although it wasn't in the specific studies discussed. Will be interested to see what your doc has to say.
    Anne, dx'ed April 2011

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    My neighbor with MS sent me the local TV story link--
    Targeted therapy has the potential for fewer side-effects

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