Tuesday I go in for an USS on the bile duct & gall bladder. Wednesday retest for diabetes, Tuesday I finally have my dietician appt.
Once I have checked all of the boxes I am moving forward on my quest for Harvoni. I do not want to take anything else. I have failed treatment on interferon and my genotype (3a) is tough to treat combined with being newly diagnosed with cirrhosis and still compensated I can't wait any longer.
I may need to take a trip across the ditch to Australia. We have a buyers club that can help us get perscribed medications. I need a prescription and a plane ticket.
I am being my own health Advocate. Wish me luck.
Thanks for being here everyone..
Stephanie
Written by
Estiebargle
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I'm not familiar with the availability of Harvoni in NZ or Australia, and others will correct me here, but I suspect if in the UK we flew abroad and got enough of the drug to see us through a course of treatment (do you know how much you need and what dose) our hepatologists would not be in a position to treat us with a drug that they hadn't prescribed themselves. In the UK a GP can't supervise Hep C medication it has to be via a hospital consultant. But I guess it's different elsewhere.
Some fantastic advice from Gary, re posting his comment because I think it is so important to share this info so others may benefit from following this pathway.
The total cost for this is around $1800 nz (this would depend on your treatment plan hep c type etc)
"I got support from the liver transplant team in Auckland to monitor and support me. I guess I'm a test case lol. You need a GP who is supportive and willing to step outside normal rhetoric. Mine did happily after checking with Professor Gane and wrote the script. The company you buy from is Mesochem, the very same company Freeman is using. You must have a genuine script, and you must have a letter or email of confirmation from the compounding pharmacist that the chemicals will be made into capsule for treatment use only. You can contact them directly via their website, or even through Alibaba. The contact person, in my case Rachel is very supportive and helpful and dealing with them was a breeze. Only too happy to help, and as soon as payment is received it all happens quite quickly. I used Optimus in Auckland, again very helpful, to make up my 84x 400mg Sofosbivir, and my 84x60mg Daclatasvir couriered to my home. Auckland also gave me Ribavirin to increase the effectiveness of the treatment. All guns blazing, as they say. I am so grateful to all these people, who have given the absolute best opportunity to rid myself of this dam virus at last."
I understand it's different in NZ, as the link describes. But as far as I know it is the case in the UK that we couldn't do this here. I'd be interested to know if anyone in the UK (I know you are not in the UK Estiebargle but I am) has ever managed to have an NHS doctor supervise treatment using drugs bought this way.
Do you have to be monitored via Skype? In the Uk patients have to have bloods checked and viral load checked regularly during treatment by the medical team who are responsible for prescribing the drugs.
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Getting on with things
Welfare Meeting
Do it yourself 
Getting off Lasix aka Furosemide
