That's fantastic news Alsdad. Congratulations. I would have thought not much point testing again until the end of treatment if there are no signs to the contrary.

Just out of interest, have doctors given you any indication as to testing you under the NHS when treatment ends. Does having used drugs from OS preclude you from testing on an ongoing basis (under NHS that is?) The refusal to monitor in the UK strikes me as particularly reprehensible almost to the point of being unethical. I mean if they're that concerned about Chinese drugs then surely doing no harm would mean monitoring people who chose to go down that route against medical advice.

I was a dance teacher and extremely physically fit before HVC and other factors intervened. My joint and muscle aches have improved but there is still a way to go. My theory is that I've simply been so physically inactive and unfit for so long it's going to take a while to get it back. And I'm 10 years older now. Gotta allow for that.

But I would add to the other improvements I noted in another thread that that god awful bloated feeling has gone.

The situation with Medicare and HepC testing are here

fixhepc.com/forum/experts-corner/105-exp...ing.html?start=6#217

Essentially a Specialist needs to authorise an initial test of viral load but during treatment a GP can order VL tests.

Hepatitis C Virus (HCV) PCR: Qualitative (assessment of antiviral therapy of HCV)
Medicare criteria (4 per year):

Patient is undertaking antiviral therapy for hepatitis C.

Telehealth

Medicare funded Specialist Telehealth is a good example of rationing.

In 2011 when it was set up about 2/3 of all Australians were eligible to see a Specialist online.

On 1st Jan 2013 that number was reduced to 1/3 of all Australians.

By way of example we had a psychiatrist in Brisbane seeing patients on the Sunshine and Gold Coasts saving them ~4 hours travel. All her patients became ineligible overnight when they extended the ineligible zone from central Brisbane to to extend from Noosa in the North down over the border into NSW stopping just short of Byron Bay.

gp2u.com.au/links.html

There are about 24 million specialist consults a year. There are 140 million GP consults. Of those 160 million consults only 1/3 of the 24 million = 8 million are eligible for Medicare funded Telehealth. That's about 5%.

This has never been any funding for GP or Allied Health Telehealth and in my view the Government has done a pretty good job of killing Telehealth off. Even Medibank has given up selling their Anywhere Healthcare business to Telstra for an undisclosed sum following a $15 million loss (disclosed in their IPO).

Why it should matter if a patient uses feet, wheels, wings or video to get to their doctor is beyond me.

Thanks Chester & Emilio.

My GP wrote to my NHS Hepatology Consultant explaining my course of action and requesting a prescription for my generics (declined), and for the Hepatology Clinic to monitor my bloods (declined).

So my GP offered to to all the blood tests going forward apart from the viral load tests, which are tested at said Hepatology Clinic. They also asked to be kept in the loop with my private treatment and tests (I'd given the private clinic permission to contact my GP anyway), so I dropped off copies of the letters from the clinic and the extensive set of baseline blood tests I'd had done at the clinic a few weeks ago.

I'm due an annual appointment at my NHS Hepatology Clinic next April. If I achieve SVR, I'm tempted to go along and play dumb for a while (assuming that my GP hasn't bothered to keep them in the loop) and let them scratch their heads, before informing the Consultant that some fake third world generics have cured me no thanks to him and for him to go and try the anatomically impossible.

I couldn't agree more! During and after my last stint on ifn I felt like I'd been run over by a Mack truck and it took a long time to get out of that hole. I am excited too by people telling how they feel rejuvenated so quickly after starting treatment. Bring it on!
dt

My NHS Consultant not only chose not to exercise his discretion, I'm pretty sure he chose to lie to me about available treatments for me (see the attached letter further up the thread).

On a purely anecdotal and hearsay note (and it shall remain that way), I used to work with a guy who told me his son worked in NHS admin, and had obtained his job with a fake CV. My former colleague was gloating about his son having recently been promoted into a fairly senior management position with the greeting "Welcome to the club" by his boss. It was quite the gravy train according to my former colleague. Which all concurred with the stuff my dad used to tell me about his business dealings with NHS middle and senior management: He loved all the business he got (and boy did they know how to throw money around), but hated most of the people.

Anyway, ranting over. Contrary to how it appears, I'm actually quite elated today for some reason, and I've only just started to 'come down' and feel tired.

I am stage 4 a-b Geno 1A il28b TC 18.4kPa Female . I was going to order the sofosbuvir from India through Greg and - & the Daclatasvir from Mesochem. I am comfortable with the Sofosbuvir but still remain cautious of the Mesochem (simply because I don't know anything about them & haven't spoken with them)) - I would prefer it was tested. I have been hoping for compassionate access here in Oz (on the basis that I can get Sofosbuvir access) but I it seems that just as Mesochem have restricted provision to manufacturers and researchers - Oz may not allow generic Gilead products used with patients in their facilities or provide them with scripts.
So I am finding myself back purchasing generic Sofosbuvir from India but with no second DAA arm of treatment. Nor do I know how to get a script for the Sofosbuvir. My only hope if it were available might be Viekira Pak - about which I am apprehensive because of the advanced state of my condition. I am told that at my stage it may be more risky. Obviously I would prefer a gentler drug like Sofosbuvir and Daclatasvir.
I have been cirrhotic since anywhere between 2007-2009 and am tx naïve because I decompensated (ascites) after emerging from a non-related coma and am since not able to use peg-interferon. I also have varices.
Sleepless - I need to decide a way through. Firstly I need a script ...I would love to actually speak with Dr Freeman ...does he really exist ? I need a script for Sofosbuvir and Daclatasvir but haven't yet decided in what form I anticipate purchasing it - Im not sure how even a script can be written. I don't think active ingredients will suffice for a script - I believe I need a brand name as well, of course, as the dosing. I want to decide in the next few days and get the products on their way - or my only back up position, if available, might be trying a compassionate appeal for some non Sofosbuvir tx - like Viekira Pak.. I have edited this post , cut it down a lot because it was too long & unnecesarily wordy, I didn't explain things well & I was a bit embarrassed by it. But the main points are there. Any Advice - is welcome. Archer

Thanks Doc,

I'm not on my backside financially, so I'm not looking to cut any corners on this. But I have to work for a living, so I don't want to waste hundreds of pounds on unnecessary tests.

Would it be advisable to get another test done during or at the completion of treatment?

There is genuinely no pressing need to do any more testing until your SVR moment, but if you wanted to do another one it would be at the end of your treatment course.

This advice, posted at fixhepc.com/forum/experts-corner/105-exp...load-monitoring.html was written by an expert in the field:

Re on-treatment virological monitoring, patients do feel reassured when they see how quickly and profoundly the viral load declines. But, the data indicates that basically 100% of patients taking sofosbuvir-based regimens will suppress virus to incredibly low levels and generally very quickly. Eventually, we may only do one HCV viral load testing after commencing treatment, either 12 or 24 weeks post-treatment. For now, and particularly for patients on generics, it is very reasonable to do week 4, end-of-treatment (week 12 or 24 depending on duration), and then 12 or 24 weeks post-treatment.

I'm a 55 yo male. USA
Type 1a
Hep C RNA PCN QN-Mayo 1860000 International_Units/mL

Albumin Level 4.1 g/dL
Alk Phos 68 International_Units/L
ALT 106 International_Units/L *HI*
AST 77 International_Units/L *HI*
Bili Total 0.7 mg/dL
____________________________
Comparison/Contrast .... USA/Thailand

USA
First diagnosed March 2013, likely had it 25+ years, maybe as long as 45+.
Had no insurance at the time, paid for an ultrasound to make sure there was no emergency and was "warehoused."
First clinic is in Washington State ....

Head back to work in North Dakota oil field .....
Finally decided to find a GP to refer me to a specialist on the third week of June this year .... got an appointment for third week of July.
Drove two hours to the appointment and discovered that the Dr. was gone that week and they hadn't been able to reach me by phone to cancel ... said they had tried four weeks earlier (Obviously didn't try very hard, and they sent an appointment confirmation letter in the mail 13 days before the scheduled appointment.)
Got a new appointment for August 19.

Irritated by the North Dakota Hospital, I called the specialist in Washington to see about an appointment there, talked to specialist's assistant, explained what I wanted to do with generics and needed a prescription. She said she'd talk to the specialist and get back to me.

She called back about 1/2 hour later and told me XXXXX said "No comment."
Me: "Well it doesn't sound like she's against the idea."
Specialist's assistant: "What do you mean?"
Me: "At least she didn't run from the room screaming in horror."
Specialist's assistant laughs.

August 19. Saw the Dr. in North Dakota, told him my idea, told him about Greg Jeffery's blog and Indian sofosbuvir, and asked if he'd write the prescription for generics. "No Sir." He said he would not write the prescription or oversee the treatment .... I could come back after I completed self-treatment and he'd do blood tests.

He ordered blood tests and said I'd get results in two weeks. Found my results online and deciphered as best I could. Type 1a, 1.86 million, no indication of cirrhosis.

Scheduled trip to Thailand for six weeks.

Went back to see Dr. on September 14. He had a pharmacist sit in on the visit but never explained why. He confirmed my understanding of the blood tests. I told him my exact plan and his attitude seemed to have softened. I asked him what tests I should have done in Thailand .... his answers were indirect. I asked about ultrasound and fibroscan .... he said a fibroscan would be a good idea. I asked about a biopsy .... he said a biopsy was the gold standard. I noticed he never actually told me to do anything specific, just gave general responses.

As I was getting ready to leave I asked him when I could come back. "Don't worry about it. You come back and see me whenever you need to ... I'll do your tests."

______________________________________________

Thailand

Flight from Seattle to Bangkok .... $804
Scheduled 6 weeks, discovered later that visas on arrival are only granted for 30 days .... bought a trip for 5 days to Singapore to break up the time and keep my stay under 30 days.

Arrived in Bangkok about 10:30am, September 18. Through immigration, baggage claim and customs by 11:15. Walk out of customs and see a kiosk for Vejthani hospital, one of three hospitals I had narrowed down to in my research .... I came with no appointment.

I walk over and tell the rep what I'm looking for and he gets on the phone. He needs a contact number so I head off to buy a sim card. On the way I change money, then get my sim and they activate my phone for me.

I walk back to the Vejthani kiosk and they get an appointment for 10am .... on a Saturday ... will pick me up at my hotel at 9:00am. It's still not noon yet.

I know I can't check into my hotel until 2:00pm, so I burn about an hour at the airport.

I take the train to Central and the SkyTrain to the nearest station and a taxi on to my hotel ... total 124 baht (about $3.75)

The phone rings a couple times while I'm on the train, but it's crowded and noisy and don't try to answer there. I find my hotel, and the hotel receptionist tells me that I have an appointment at the hospital and that the van will meet me at the lobby at 9:00am.

Tired .... sleep from about 4:00pm to about 4:30 am. Burn time online until 9:00.

Get to the hospital, talk to the doctor, get an ultra sound and a fibrascan .... back to talk to the doctor .... results print-out at 11:35am. Pay a grand total of 7300 baht ... ($216.62 at the airport's bad exchange rate) wait 20 minutes for my ride back to the hotel. Doctor emails me scans of his report and a prescription with all his technical details at about 4:30pm.

So I'm in Thailand for about 30 hours and I've got everything I need.

Next, getting the drugs from Australia. I'll let you know how it goes.

More details: (Including typos, etc.)
______________________

X-RAY REPORT


Ultrasound upper abdomen:
History of HCV

Normal liver size with normal parenchymal echo. Few cysts both lobes ,measuring up to 1.3 cm.
Small bright echoic spot at lateral segment of left lobe ,possible calcification.
The gallbladder is absence.
The CBD and intrahepatic ducts are not dilated.
The pancreas appears normal.
Normal both kidneys.
Enlarged spleen is seen ,measuring 1.4.8 cm . No space taking lesion.
Normal size abdominal aorta.

IMP: Few hepatic cysts, both lobes with possible small calcification at eft lobe.
Mild splenomegaly.
Post cholecystectomy.
Not remarkable otherwise.

___________________________________________________________

FibroScan

Observation Item Value Comment

Median stiffness (kPA) 6.2
IQR/Median (%) 16
Number of measurements 11

Comment

____________________________________________________

With Hep C treatment a key determinant of treatment outcome is liver fibrosis. Less is definitely more.

Measurement of the amount of fibrosis is called staging. There are five stages:

• F0: no scarring (no fibrosis);
• F1: minimal scarring;
• F2: scarring has occurred and extends outside the liver area (significant fibrosis);
• F3: fibrosis spreading and forming bridges with other fibrotic liver areas (severe fibrosis);
• F4: cirrhosis or advanced scarring.

In the studies patients are divided into 2 groups - have cirrhosis, don't have cirrhosis. This is actually not realistic because you start with no fibrosis, get more and more fibrosis along the way and end up with cirrhosis.

Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis.

Progression to Cirrhosis in Hepatitis C Patients: An Age-dependent Process

If you have cirrhosis or even perhaps are simply very close to having it consideration needs to be given to extending treatment from 12->24 weeks and adding Ribavirin.

Unless a liver biopsy is performed we can't measure fibrosis directly. Instead we look to the elasticity of the liver and report the results in terms of pressures (kPA). You can see how a kPa value correlates to F



You will find more details on this at hepatitiscnewdrugresearch.com/fibroscan-...he-scoring-card.html

The Hepa Score is described here: www.jcdr.net/articles/PDF/1136/1444_2..pdf

A hepascore value ≥ 0.50 indicates significant liver fibrosis , whereas if the result is < 0.50 significant fibrosis is absent.

If the value is ≥ 0.84 , cirrhosis of the liver is likely present and if the value is < 0.84 cirrhosis is absent

As an interesting aside to this - I read an article abstract recently where contrary to "response driven" management of treatment in the past - the author was raising the question whether - future treatment might become guided by assessing "resistance".

Your doctor will need to know

• Genotype
• Fibrosis by scan or biopsy
• Prior Treatment
• Current Medications

Each of these impacts on the best choice of medications and duration. Daclatasvir interacts with some common medications.

Routine tests pre-treatment

• Full Blood Count
• Liver Function
• Creatinine Electrolytes Urea
• Viral Load

These tests only need to be done if there is nothing available in the last few months, but if you have them then it saves ordering them.

During treatment a 4 week Viral Load and LFTs is probably all that's absolutely required for treatment without Ribavirin. Ribavirin requires more frequent blood tests.

An end of treatment VL is nice but does not have a lot of value.

Then do SVR4/12/24 depending on how patient you are. If you have SVR12 you have a 99.7% chance of being SVR24 which represents a very high probability of cure.

Hi Archer,

Here's something on that:
www.clinicaloptions.com/Hepatitis/Treatm...%20Thoughts/CT1.aspx

dt

If you've had a PCR done you it has a lot of information that would help determine what treatment you need.

Has your consultant arranged for a Fiber scan? If not arrange it asap.

Secondly, find out 100% your Geno Type, If you've seen a consultant, they have done a PCR, ask about the results
of the blood work. Once you have the above its easy to determine what treatment works for you.