Hi DoinTime, LG, & friends,

No offence taken...

A really great thing about the FixHepC web site is that it allows people to share knowledge and experience about Hep-C itself, but also about what is happening in the world, and ... lets say "other" ... considerations that should be taken into account when trying to find what should be a basic treatment at a fair price which is accessible to all.

One thing I have learnt from this web site is that there are still may parts of the world that Gilead has failed to get its dirty hands on and that, thanks to people like Greg Jefferys and James Freeman, more and more people who are excluded or trapped by their own health care systems are successfully finding a way to treat themselves. Knowledge is most certainly power!

But let's not forget that for most "westerners", $1000 for a treatment might finally seem like a fair price, but this is still hopelessly out of reach for many people around the world... So, to really bring prices and barriers down, the more manufacturers the better!!

Alsdad wrote: It's all looking good Nadia.

I suppose it's good that those of us on treatment have a few minor side effects to whinge about. We'd be suffering from 'happy' overdose otherwise

I do feel happy and overdosed. Bearing in mind only 1 month ago I was relying on ADs to help me sleep and to face the everyday routine

It's all looking good Nadia.

I suppose it's good that those of us on treatment have a few minor side effects to whinge about. We'd be suffering from 'happy' overdose otherwise

Hi Alsdad,
Well done for getting fibroscan done on NHS.
4.9 is a very good result!
My joints are playing up a lot on treatment specially my back and neck and I get a tention headache from the tight muscles in that area.

So, I'm now just over 8 weeks into my treatment. It's been mostly a doddle so far (he said, looking for some wood to touch). Had one very mild headache in the last week. Joint and muscle pain are still there but markedly improved from pre-treatment: I can now walk downstairs normally in the morning to get my cuppa and meds, as oposed to 'crabbing' downstairs sideways. I'm so optimistic about this, I've told my son and his best mate that I will probably be able to start taking them swimming again soon, which I'd had to stop earlier this year.

Just got back from having a fibroscan at my local hospital. I'd phoned them a few weeks ago to see if they did private consultations, and the clinic leader said that they'd be happy to do it on the NHS if my GP referred me. GP wanted a request from my hepatologist, which was easy enough to get. Handed it in to GP's last Monday, chased it up this Monday, and I was in the clinic this morning. A big thankyou to my GP Practice and the fibroscan clinic leader at my local hospital (who went over and above the call of duty in tracking down the referral letter to the CT scan unit, where it had been sent by mistake. A letter to the hospital commending her will be going out later). Fibroscan result was 4.9, so finishing my treatment on 12 weeks looks good to go.

Had some blood drawn for a vl test yesterday at Pall Mall Clinic, more as a personal reassurance than anything else. Assuming that it's still UND, I won't bother now until 12 weeks eot.

I feel like i'm getting toward the end of a fairly long road now, and I'm feeling quite relaxed about everything.

em have you watched this you tube video.from the September Vienna conference

The question you pose is actually asked here.The reply the lady gives is that this data was still being analysed.The specialist I saw before I began treatment had just returned from this conference,and was in the audience for both this video and the Graham Foster one.
Next time I see him I will try and discuss it with him.Its an important question.

I'm a genotype 1a with compensated cirrhosis and I have been a non responder on 4 previous 48week interferon (various types) and ribavirin trials. I'll be commencing 24 weeks treatment in the near future when my meds arrive. I will be doing 12 weeks of Sofisbuvir, Ledapasvir and Ribavirin, then 12 weeks of Sofisbuvir and Ledapasvir.

Hi Rowan
My drugs should arrive shortly too. Best of luck with your treatment. I'll let our community know how I go.
Thanks again Dr Freeman and Greg Jefferys.

Ann Bee

I am a Geno 1A.

I see from yr sig that treatment is going well. good luck.

Cheers, Rowan

Hello Ann Bee that is fantastic news!! I am happy for you!! You must be ecstatic..

I have had the virus for 40 years and got diagnosed approx 26 years ago..I stopped alcohol around that time as I became quite sick with chronic fatigue (now I think may have been hep c). Since then I have lived a drug alcohol cigarette free life style and eaten healthy food and done yoga/chi gong off and on over the years. My health has never returned although my healthy life style and alternative treatments over the years probably contributed to the hep c virus staying at F2 for years and not progressing. Last year I became very sick and the hep C progressed to F3. I am not certain why this happened but I became very stressed for a few years due to studying and working. And I am older. If anything I put it down to stress. Years ago my GP said to me don't drink alcohol not even one drop as it will aggravate your liver.
Thats not why I stopped alcohol but I do remember her words.

Good luck Joan - You will be on the mend soon I'm sure.
All the best for minimal sides and a complete recovery.
LG

ps I am only 42 kgs - not on treatment yet.

Hello Rowan
Welcome I too am awaiting to start treatment I look forward to sharing stories.

Thank you all for your replies. I figured the roll-coaster was part of it all..the pre treatment anxiety…it is reassuring to know that I am not the only one. I do have a sense of humour and am able to have a laugh at myself. Once the anxiety passes. Humour can really help me get through anything. And I am noticing that the uncertainty doesn't last very long.
I am encouraged by all your experiences and am heartened by your openness to share and help each other.
Yesterday I met with my specialist and nurse at the liver clinic. My specialist confirmed that he & nurse will be monitoring me through the treatment and I feel totally supported by them. I had my first base line bloods done and I feel reassured and confident and ready to take on the next few months. I should be on treatment this time next week. Sooo…just waiting.

I don't know about anyone else but if after taking 12 weeks of the new meds I get say an 8wk SVR and then relapse, I'd kick myself for having not opted for the 24 week Tx, I think you have to remember as well that those 'recommended' treatments are as much in the interests of the bean counters as the patients, personally I think the cost of these generics are a small price to pay if your going to improve your chances of clearing the virus with the extra 12 weeks, I think if price wasn't an issue then those treatment regimes would probably be beefed up a bit more.

Hi Em, Yes, it's true many of us from England have been 'shuffling the forums for too long' - This is mostly because we aren't getting anywhere regarding prescriptions and monitoring and therefore treatment and are trying to be pro-active in these departments. Also getting fed up with this 'non-living' state of affairs. Taking myself off for a walk in a real park (not to be confused with the on treatment one)
Love to all.