For a year I have had pain in the upper right side of my mouth and face from the trigeminal nerve. It was never severe and it is improving but it is nasty. Feels like toothache sometimes, jaw ache other times, cheek ache other times. It kicked off after a load of dental work. My best guess is that it is connected to my right shoulder muscles which are pinching a nerve somewhere on the way up to my face. I also get random stabbing pains now and again anywhere in my body. I am hoping that when I get rid of the hepc virus this nasty nerve stuff will disappear along with a knee pain which developed this year on the site of an old knee injury. Also my chronic fatigue.

I’d like to think that all my aches and pains will disappear once I am SVR but there’s no way to know until I get there. Meanwhile each new malady is queuing up and needing action which I am putting off. I really need to get this virus out of my body and get to work on any other damage that is left.

dointime

Hi everyone,

New member to the board, hoping I can learn more about the possibilities of treatment as they arise. Have been HCV positive since 1988 with Gen 1a and treatment naive, largely due to a significant history of depression & other mental illness aspects, which my Dr sees as pretty much contraindicating 12 months of the pegintf/rib combo.

I’m also fortunate enough to have a F0 fibrosis score (2.9 fibroscan) and a VL only in the couple of hundred 1000s – not the most urgent candidate for treatment anyway, I know.

However I do suffer from the sudden crushing exhaustion, dizziness, buzzing sensations, brain fog and general out of body detached feelings others have described here. Plus I have a significant chronic neurological pain condition of 14 years standing which flares up to the point that functioning can be difficult somtimes…and I think that there may be symptoms I’ve attributed to that which might really be due to Hep C (joint and muscle pain particularly)

My doc (specialist at a major Sydney hospital) put me off the whole idea of accessing overseas meds at an appointment today, saying that the Govt will very likely allow the new DDA’s in from early next year – I have absolutely nil confidence that this will happen. In the meantime, I know that while not badly affected it is the back of my mind that the longer you have this disease (coming up on 30 years) the possibility that things could go south at any time. I am also mindful of the Govt/TGA finding some way of legally thwarting operations like the Buyer’s Club so none of us will have any recourse at all…I can’t see any of the treatments being passed by Federal Cabinet with a collective $3bn price tag.

Apologies for the length of my post; having only found out the OS supply of meds recently its something in the back of my mind regularly now.

Alsdad, thank you very much for your reply. In fact that is precisely what I remarked to her – that even if the meds were approved surely due to cost it would be triaged and, as you logically point out, I’d have to be way back in the list. She then said, ‘Oh no, it would be available to everyone’ – which kinda negated my mention of the $3 billion cost which isn’t going to happen lol

So yes…might be time to at least think about treatment. I have only come across this site very recently,. so its all a bit of a learning curve!

Thank you again for your response, I can see there will be a lot to take in

Thank you so much for your reply also Joy.

Funny you should say that, heh…the doc has been saying just that since the end of 2013….first of all that new meds are coming, probably the beginning of 2014…then wait for the TGA approval…then wait for the PBS recommendation…now wait it will be passed by Cabinet and likely be the beginning of *next* year…for all patients, what’s more

When all possible logic suggests otherwise Lol

I am going to have to think seriously about it yes, I agree with you. Lots to think about, and consider.

Thank you everybody for such warm welcomes to the forum on my first outing…its really appreciated

A whole year lost!
How about decades.
Hepc steals lives, and not just by killing people.
dt

That’s a great way to put it Nadia. Would certainly persuade me. Even one more day lost is one day too many.
dt