There are probably questions none knows the answers to for certain at this moment, not even the experts, as HCV & it's treatments is very new on the scene. The science of Virology itself is also relatively new as compared to well established Bacteriology.

When I was first diagnosed 12 years ago, I studied & read everything I could about HCV, viruses, both in mainstream medical literature as well as looked & participated in naturopathic & complementary, alternative med. approach etc. for the next few years.
I even came across some great speculations & studies that HCV does not exists at all & was just Pharma manufactured propaganda in order to sell those expensive drugs & expensive tests, that was fun!
It all sounded very plausible to unscientific mind & I felt much better for a while after being convinced that this virus does not exists & it is just a fragment of some old mitochondria.etc.
I stopped reading anything about HCV soon after my first tx failed to cure me, I could not see the point of wasting time acquiring knowledge if all I ever wanted was a cure & not theories.

Now I just want the drugs & fast & be done with & start living again.

OMG!
I can't help myself from wanting to know the details even if they just make the picture more gruesome.

I was kinda theorising that maybe virions don't always snag a hepatocyte the first time around.
The reality will no doubt turn out to be stranger than anything I can imagine.
dt

dointime wrote: I am puzzled about this:-

The DAAs target the virus inside the hepatocyte and stop it replicating. So when all the hepatocytes are saturated with DAAs then replication of the virus should be stopped dead in its tracks. As most of the virus is in the blood, that should be the time it takes for all the blood to circulate through the liver. That would be <24 hours. So why does it actually take weeks to get to UND? What am I missing?

dt

Hi DT,
I think it has to do with detection of HCV in brain & CSF ( cerebral spinal fluid)
Maybe the virions that replicate outside of blood cells, like the brain tissue & CSF take much longer to kill? due to BB barrier ?
As I am not a medical researcher or MD this is just a pure speculation.
I don't have a link to this just picked it out from some of my old notes:

"The detection of HCV RNA in brain tissue, together with evidence to suggest independent viral evolution within the CNS, has suggested that the neurological symptoms reported in patients may result from direct infection of the brain. Recent advances in the tools available to study HCV have allowed researchers to address the question of whether HCV replicates in brain-derived cells. The recent observation that HCV can replicate in brain endothelial cells, and that neuroinflammation is a feature of HCV infection, may provide a mechanism for the neurological symptoms observed in a significant number of infected patients."

It is has higher risk for those taking sofosbuvir + other DAA?

I am puzzled about this:-

The DAAs target the virus inside the hepatocyte and stop it replicating. So when all the hepatocytes are saturated with DAAs then replication of the virus should be stopped dead in its tracks. As most of the virus is in the blood, that should be the time it takes for all the blood to circulate through the liver. That would be <24 hours. So why does it actually take weeks to get to UND? What am I missing?

dt

Hi,
I am in the U.S. and have two docs monitoring my generic treatment-my local, long-time GP-who diagnosed me, and my GI, who has written me 3 scripts for HCV treatments , which she fought like hell to get approved for me, but were denied after exhausting the appeals process. When I told them my plan to import ditectly from Mesochem, the GI said fine, as long as she could monitor the tx. So my GP orders the blood work, checks it out and sends the results to my GI several hundred miles away. We did a pre test and will do a 4 week, 12 week,12 week post and 12 month post tests.
Now, my GI said the tests were for two reasons:
1. To see if the virus is being destroyed effectively
2. See if these really new and really powerful drugs are having some strange impact on something else, like glucose or potatsium levels, for example-all those things they can check that have norms.
That's what they told me the monitoring was all about in MY situation: F-1, Tx naive, good health, vl-1.6 million, 62 yo.
Good luck!
Mike

There is no such thing as a 100% safe medical treatment. Sadly some people suffer side effects (sometimes severe) and even death with any drug treatment. With HCV DAA medications the risks are small but real. To put them into perspective first consider this graph:



Next consider that about 10% of all people with HCV are expected to die as a direct result, so there is absolutely nothing safe about having HCV.

Now let's look at the figures. We know that currently 613,000 people worldwide have take Sofosbuvir and it can cause occasional problems:

www.bidnessetc.com/56898-gilead-sciences...-be-shrugged-off-fo/

So here is the bottom line. A small number of people taking DAA treatment will suffer problems, but undertaking treatment is almost certainly a sensible thing to do given 100% of people with HCV will (or already are) suffering problems, and 10% will die.

The first thing I did tonight after taking my medication was get into an Epson Salt bath - I didn't get pain in my body, only a sore throat. Will be interesting to see how I feel in the morning. I have had joint pain in the past and have normally treated with antii inflamatories, along with a nexium, but don't really want to take anything if I can help it while on treatment. Hopefully my body is adjusting to the treatment.

Hi Sandy,
I wonder if this is worse if you have suffered joint pain pre treatment? Or if it's age related ? Maybe condition of liver too and immune response pre treatment?
Just a thought.

It does seem to make sense to me, that if the virus is causing joint pain, then the meds may cause the same response while attacking the virus as the virus tries to 'fight back'? It would be interesting to see which patients have this joint pain on treatment and which don't.


I have suffered terrible joint pain, mostly around pelvis, lower back and hips, so suspect I may be a candidate for more of this when I treat. I found good quality Epsom salts in a warm bath was the only thing that helped at the time and a Magnesium tab from a quality manufacturer. I'm not sure if these are permitted while on treatment and would love to know re that. Also a sauna helped.

Are your joints red and inflamed or is it just joint pain?
(Edit) btw I took an anti-inflammatory when I had joint pain , it made me so ill, I will never go near one again.

Try Greg Jefferys , he is another Aussie who organises generics mainly from India . greg jefferys has a blog hepatitisctreatment.homestead.com/. I bought through him and have been on treatment for 2 months. kindly

The new DAA medications do not require a lot of monitoring (unless Ribavirin is involved). Once you fall to UND (Undetectable) you will remain undetectable for the duration of treatment so further measurements are a waste of your time and money.

Here are some statistics about the % of people who will be <15 and/or undetectable at various points.

Week	% <15	% Undetectable
0	0	0
2	71	39
4	93	82
6	100	89
8	100	100
10	100	100
12	100	100

So the moral of the story is that once you are UND stop testing.

Thankyou sabrecat, yep lots of drinking and weeing. Will know the results monday week. If positive, my doc mentioned injecting radiation into specific cells, if it is a particular growth. The other type would be a resection. the last fibroscan i had in june 2014 said the liver elasticity was good. i am glad christmas is still a month away cause everything slows down for weeks. I couldn't bare not having treatment immediately. I do have a sneaky suspicion that I have inherited 'the dooley curse'-cancer. I am dealing with it as all if's. knowing that you are doing well after resectioning is very heartening. kindly

Hi LG, there's no nice way to say this. Your consultant sounds like a right C***. How unfortunate that you drew the short straw with him. However, even a more helpful NHS consultant has their hands tied when it comes to supplying the drugs we need, courtesy of Big Pharma's pricing and NHS collusion with it.

Now, you have got me started on UK dentists, which are another UK professional body straight out of the dark ages. I could rant on about them for hours but will try to restrain myself. Their greed is every bit as invidious as Gilead's. They insist you have to be registered with them even if you only want one little filling. My (private) dentist thinks that taking the time to match the colour of my front tooth with a filling is beneath him. He only likes the £500 root canal jobs - which then fail. Even the hygienist was salivating on my first visit hoping that she'd got another old fart with gum disease who'd need expensive periodontal treatment. When she found my gums perfectly healthy her face changed like she'd just sucked a lemon. I'd go someplace better but I've already been all over town and not found better and got myself a reputation for switching dentists (a bad thing, must be my fault). I really feel trapped in a system which is not serving my interests. To their credit, opticians don't do this. I can walk in to any optician and get service. Which makes it even more irritating that with dentists I can't.

My point is that the UK is riddled with closed shops. We are just the cash cows for their convenience and they tie us up in knots with this enforced registration and transfer of records. The only viable action we can take is the one you are proposing. Go overseas to another country for treatment. If the UK population did this in droves then these dentisits would all go out of business, which they so richly deserve to do. Same for generic meds. India, China, Bangladesh & elsewhere will do business on our terms so take our business there.

dt

Does anyone know whether you can take Alpha Lipoic Acid (Antioxidant) on treatment?

Well that's a rubbish state of affairs LG...I am sorry you're having such a hard time finding a doc. All you want is your levels to be monitored right, doesn't sound like that large an ask...though apparently it is.

Another UK member here might be able to suggest someone you can look up...but at least the side effects seem to be pretty minimal with the new treatments so intensive oversight isn't necessary, unlike the old meds. No possibly life-threatening anaemia, no potential heart failure...I doubt that I could have lasted a year on interferon/riba. We are all far better off in that regard.


Hey I guess you get a European trip as well as your teeth done heh. My English half brother went to Hungary to get his teeth fixed, I guess being employed he didn't want to take the public system lottery. I do wish we had at least basic treatment here - most of our end-stage public dentistry here involves extractions as that's how far gone most people are by the time they are allowed to access the system.