2018-06-11 – Gutted!

I’m more than disappointed, I’m gutted!  I rang my doctor’s surgery this morning and made arrangements for my doctor to phone me after morning surgery to discuss the letter from my neurologist asking him to prescribe exenatide for me.   I received a call from him just after lunchtime, and he started to sound little bit evasive about prescribing the drug, and said that he would have to speak to someone in the prescription service about it, because it wasn’t licensed for Parkinson’s Disease.   Okay, but that’s not news to either of us – I already explained that it was only bring trialled for PD, and it was he that suggested (without even being asked by me) that if my neurologist were to write to him suggesting that it could be worth a try, then he would be happy to prescribe it to me “off label” (i.e. for a condition other than that for which it has been approved).  So why the change of heart?

He called me back a couple of hours later to say that he had now spoken to someone in the prescription service, and that he couldn’t prescribe it for me because there was insufficient evidence of benefit for my condition.  He did, however, say that he would write to my neurologist to ask her to write me a prescription for exenatide which could them be filled here in Norfolk.  I won’t be holding my breath.  I need to have a think about how I respond to this news, but suffice to say I’m extremely p*ssed off!

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