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Has anyone has heard of Noscapine as a potential treatment for HSP or has had any succes

Nancy8597Nancy8597 Member Posts: 4 Listener
edited January 2020 in Disabled people
Just curious if anyone has heard of Noscapine as a potential treatment for HSP or has had any success using it?  The HSP foundation in Australia is preparing to do clinical trials on it but some people have started taking it on their own.  See this article

Replies

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Nancy8597

    Welcome it’s great to meet you today 😃

    I’m part of a team of Community Champion’s here at
    Scope.

    I am very very sorry but I haven’t come across “HSP”

    But I have got or did have a “Brain AVM”
    that has given me the exact symptoms as you.

    Sorry but was are unable to offer you any advice on “Medications”

    I do hope that one of our members can contact you shortly??

    Please please let me know if there’s any more problems😃😃

    @steve51
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    Hi @Nancy8597 - Welcome to the community, & thank you for the article. I don't have HSP, but was interested in reading more. I 'tried' to read the pharmacological report at the end of the article, but this was about the history of Noscapine, & the disorders it might help; mainly different cancers, but with no mention of HSP unfortunately.
    I found other references to medical papers by Alan Mackay-Sim, which do address HSP. Now I might be saying to bookmark these pages, which you may probably also know, but mentioning just in case. It seems like the research is most hopeful, & more may be known in the next few months. See this page about the ongoing research: https://hspersunite.org.au/hsp-clinical-trial-program-update-december-2019/
    & here for future updates: https://hspersunite.org.au/
    Understandably they have been looking at the 'commonest' type of this rare disorder, namely those affected by SPG4, so it might not at this stage help others where different genes are involved.
    Anyway, IMHO I'd wait to see hopefully potentially good results in the next few months, before trying Noscapine, as they're trying to work out the dosage of this that might help people. Other people's anecdotal feelings of what they feel might work for them isn't 'science.'





  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    edited January 2020
    I`ve passed this info about NOSCAPINE on to my friend who has HSP.
    HSP was wrongly given to me as a diagnosis in 2011 and then discounted after genetic testing failed to prove I had it.

    I`ve had recent tests in a neuroscience centre and been told there is definitely no sign of HSP.
    Thankyou for putting this on Nancy.

  • Nancy8597Nancy8597 Member Posts: 4 Listener
    Pollyanna, did you ever find out what it was that you have if it isn't HSP?

    chiarieds- thank you so much for the links you shared as well!
  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    I`ve passed this info about NOSCAPINE on to my friend who has HSP.
    HSP was wrongly given to me as a diagnosis in 2011 and then discounted after genetic testing failed to prove I had it.

    I`ve had recent tests in a neuroscience centre and been told there is definitely no sign of HSP.
    Thankyou for putting this on Nancy.


    Hi Nancy, yeh, it is Spinal MS!!!! One good MRI at The Walton Centre, in Liverpool showed I have significant demylination on my cervical spine. So after being in the MS camp, the HSP camp I am now back with the former!


    Take care chick xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @Nancy8597 and a very warm welcome to the community! Thank you for sharing this with us. :)
    Scope

  • Nancy8597Nancy8597 Member Posts: 4 Listener
    Hi Everyone,

    Sorry the correct link for the article about Noscapine for HSP can be found here  , more information about Noscapine can be found on https://noscapine.com/
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