Hi LG,

Before there were better alternatives, my plan was to go to Goa in India where Cipla have huge and highly rated manufacturing facilities. I figured I could have a holiday and find an honest pharmaceutical distributor at the same time. There is also an Apollo International Hospital there supplied by Cipla among others. I liked that plan and I have to admit to a little bit of disappointment that I never had to carry it out, but I’ll still take Fedex any time.

As for sweetening up this consultant of yours? Huh. Maybe you’d be better off figuring the cost of 12 weeks in Goa at the Apollo. Over a UK winter, not a bad option at all if you can make the costs work.

dt

LG

I think that the ‘need to treat’ should not be a consideration at all, never mind all this about liver fibrosis, etc. There are so many extrahepatic symptoms that the ‘need to treat’ has no real meaning except as judged by the person who has the symptoms. You have a disease that is curable and you want it cured. That is all there is to it.

Next thing – I’ve been to PALS. For anybody who does not have the energy to do the full monty with PALS or other authorities, their MP, etc., forget about that route. Obtaining the generics is far and away easier. It does however still leave you with the question of getting your treatment monitored by the NHS. NHS consultants do have the latitude to agree to this is they want to – you just have to find one that wants to. Your big advantage is that you are in London where there is a high concentration of terrific hospitals. You need to start knocking on doors. Maybe your GP would help you once you have the drugs in your hands. Harder to turn somebody away who is going to take those drugs with or without their help. Do your best to sidestep the whole issue of liver fibrosis and concentrate on your quality of life, or lack of. Your GP might know of a friendly specialist somewhere. There must be one for heavens sake.

Good luck,
dt

Hi LondonGirl,

Assuming you have had no further fibroscans since the previous two and that the consultant states NO fibrosis in the letter to your GP then he is either a fool or a liar as those prior readings would indicate at least F1-F2.

In your discussion with your GP tomorrow, I would suggest using the difference between what the (quantifiable) tests state and what he alleges to prove that the consultant very obviously doesn’t have your best interests and health at heart. Keep that part of the discussion calm and rational but it would be fine after the GP takes that in to add, as calmly as possible but with feeling, how upset that makes you feel. Then ask for your GPs assistance to find another consultant or specialist as suggested by dointime.

G

Hi all, just want to say – I am so excited for these Cipla meds coming! I have my monitoring sorted – I am on the starting blocks ready to go!!! The thought of living without these symptoms soon has just occurred to me!

I have severely dry eyes that I have to put drops in every hour. I’ve looked it up and guess what, a hcv symptom, attacks a gland or something. The thought of living normally without all the things this virus does to go around annoying your body…wow.

LG, just saying hi, I know I don’t post often here and I don’t think I’ve said it but I’m sorry you have such a crappy consultant. I think if they actually care it goes a long way, even if they do feel their hands are tied. You know my situation with my hospital and I’d just like to say I feel very lucky to have a consultant and nurse who genuinely care about their patients.
Good luck with your g.p today, and then you will be on the starting blocks like me!

I don’t think I ever introduced myself on the new bit, will have to do that shortly,
Thanks, Deb

Awesome news, LG! Really happy for you, must be a great relief after such a long, bloody stressful slog through your confounded NHS system.

Now for the meds indeed