Ordering Nilotinib: I tried to order... - PSP Association

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Ordering Nilotinib

pandyjohn profile image
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I tried to order Nilotinib, sold as Tasigma in many countries. I asked my hospital consultant= if she was prepared to prescribe if and she said no. So I have asked my GP who referred me to her to do the same. So far she has not replied to my email but I suspect I will get the dame response.. Trouble is that NICE have so far refused to act on the evidence provided by the testing of this drug other than its use in cancer treatment.

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pandyjohn
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honjen43 profile image
honjen43

Sorry to hear that, John.

Have you tried asking to be included in any of the other drug trials? Someone posted good results on (I think it was AbbVie) one.

Daddyt posted he was on a trial drug recently and felt there were some improvements.

Hope you have some success with your search.

Big hug

Jen xxx

Richard33 profile image
Richard33

I asked my neurologist too and he said it is too early to ask for a prescription. There are no trials with Nilotinib and PSP ongoing. They have only just started trials with Parkinsons and Nilotinib. So I do not think you will be able to get it prescribed in the UK. So your only choice would be just to order it from India direct . There is a small risk it could get stopped at Customs as it is a controlled drug. I am confident that there would be no legal repercussions if they did stop it - you would be one of many having to order medication from abroad.

Richard

pandyjohn profile image
pandyjohn in reply to Richard33

I thank you for your reply but I read an article in Journal of Parkinson's Disease entitled "Nilotinib - The Hope and the Hype" which changed my mind on the subject.

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