Hi there 40,

That really is unfair! It isn’t a complete surprise because 8 weeks of Harvoni is hardly regarded as the gold standard treatment.

Well done for finding this forum because all the information you need can be accessed this way. You could spend some time reading through the material or, if you’re ready, just make an appointment for an online consultation with a specialist GP – GP2U is what you will need. If you have or can get hold of $1500 to $1600 (£1113 – £1187), that will take care of a 3 month course of treatment. You may decide, in consultation with the doctor, that it would be better to treat for a longer period and in that case the cost would be roughly proportionate.

It’s worth pointing out that the NHS will eventually sort you out. They are quicker these days but a lot depends on your health district – this is where the infamous postcode lottery comes into it. The decision you come to will involve your available time, your patience, your wallet , your symptoms and history and your views about healthcare. There will be other considerations depending on your particular circumstances.

It may be helpful to know more about your history and hepc status so why not add those details to your profile. What genotype of the virus has taken up residence in your liver, for example?

With all best wishes,

RSF

Hi 40-odd,
Great to have you on here! Your doctor’s interpretation of your tests as “some mild scarring” sounds like fibrosis, so you might need longer than 12weeks treatment. You now need more information. See if you can get hold of it from your healthcare team. Ask them to give you a copy of your liver function tests. Also for the fibrosis score or liver biopsy test results.

By knowing your own numbers you’ll become expert by experience in your own healthcare. This ensures your next steps can be the right ones.

Reflecting on your experience of your NHS healthcare so far reminds me how much of patientrovider relationships are defined by healthcare-rationing. In the US by contrast people can buy whatever healthcare they want so long as they have enough money and insurance. It is an interesting contrast.

hi 40-odd
That’s bad luck I know how you feel I’m also NHS 8 week harvoni relapse I wasted a year working out what I was gonna do next and finally started retreatment early this year via fixHepc and Dr James.
I’ve got my EOT 12 week blood test coming up next week so I’ve got my fingers crossed
As Mnem says you need your test results, they cannot refuse you,
The nurses in at my hospital were most helpful and have been all the way through
Next thing is you need to get them to agree to test and monitor you throughout treatment
it might be the consultant has to make that decision but it’s the nurses who present your case so I can’t stress enough how important it is to get the nurses on side, make yourself known to them. Make sure they know that you’re going to self fund your treatment with generics whether they support you or not it’s hard to see how they can refuse to monitor you
my nurses agreed that they would email me all subsequent blood test results
my bloods are taken on a Wednesday morning and I have the full results by Friday evening I think it’s very poor that they made you wait so long on something that so important. I would definitely be chasing up those outstanding results as there’s always an outside chance that it was a duff test or the results were mixed up especially if they’ve been hanging around the 2 months
Good luck I hope to hear soon that you’ve started.

The stuff I like to see is listed here:

https://fixhepc.com/what-your-doctor-needs.html

It would be good to get your genotype AFTER the relapse if this was done. Also if they did any resistance testing that would be good.

We kind of know you are low fibrosis from the initial treatment choice.

Hi 40 – odd,

I am G1a and also relapsed after my first round of treatment so I know how you feel. My virus was particularly hard to kill but with perseverance and help from Dr Freeman and FixHepC I am now cured.

My treatment and retreatment were managed through Dr Freeman and GP2U so I didn’t have to deal with the NHS. I do know that for me the NHS 8 week harvoni treatment would never have worked and there must be many more like me.

I can see you are collecting your latest results so that the right treatment can be prescribed as there isn’t a one size fits all for retreatment.

My way of dealing with the relapse was to sort out retreatment as soon as I could and I’m hoping you can get back on to treatment very soon. I look forward to reading your updates.