TOPIC:

Hi all, good luck to all of you! I am new to this forum and newly diagnosed about 2.5 months ago, so still in the learning faze and catching on fast. I am in the US and am still waiting on results from some initial tests: liver u/s and cryoglobulin levels Otherwise have normal labs AST =24 ALT=18 and VL= 214,070. Guess all that mostly healthy diet I have been on for years helping. Would really like to hear from anyone else from the US on how to get these generic meds here since that is what I plan on doing once I get the official denial from my insurance. I have no idea how long I have had this crap in me since I have been an RN for over 34 years and have delt with way too much blood over the years. Thanks and here's to everyone having a happy UD new year!

Hi CC2B, welcome to the forum

You've got some great numbers there so you'd be an excellent candidate for treatment, congrats on staying so healthy for so long. Check out this discussion on US importation for a bit more info: fixhepc.com/forum/buyers-club-nodes/305-...ot.html?limitstart=0

Thanks Zhuk, I will check it out

Hello G2's

I have had a break from posting for a couple of weeks and in the meantime this section has been put up. I am G2 also but don't know if A or B, F3 and Fibroscan 17 non-cirhotic. Though 2 weeks ago at 4 week bloods viral load 0 so I don't have Hep C after 40 years. I am gradually improving. Sleep is getting better, not waking up every hour and dreams are less vivid. I have more energy although I tend to over do it too and usually have to rest the next day. No brain fog, I am as clear as crystal!! I love that sharpness and clarity. Nausea hardly at all and an increased appetite. This has happened gradually the first few weeks I didn't feel great. I feel a lot more positive as I am not so overwhelmed all the time. I am not dragging my arse around wondering how I am going to get through the day.

That's good to hear Joan, glad you're getting better & stronger.
x

Fibroscan 17 non-cirhotic

If that's 17 kPa you are F4 and cirrhotic for the purposes of treatment duration....

Viral load zero is always good to see!

Thank you for your post Dr James.


I am not sure if its 17kPA I just know it was 17.

In April this year I had a fibroscan within a year it went from 8.6 to 17. The technician did it twice on the spot and I could see the alarm on her face. It was done at RPA Sydney.

It raised alarm bells as it wasn't following a typical HepC trajectory and my specialist did every test available. When I had a liver biopsy it was F3/F4 borderline. Alt's etc were very high . The final conclusion was my liver was inflamed and I should go on treatment immediately. That meant Interferon. I chose the FixHepC path.

In October I checked with the hospital before ordering my meds through FixHepC and was told I am F3 non cirrhotic & to order a script for Sof 400gm and Dac 60gms x 12 weeks.

Before tx my Alts were going down and I was starting to feel slightly better. 6 weeks into treatment my alt's are normal and as mentioned 0 viral load. The hospital is monitoring me during my tx and after. I will most likely get another fibroscan in April 2016.

Thank You Dr James

Hi Joan When you say Viral load 0...did that actually show "0" on your test or did it just read "undetected"...I admit I am confused on that point...although my test at four week was HCV undetected so assume that means no Hep C in my system anymore.

So glad you are doing so well. My sleep is still not so good, waking early all the time but generally I feel so much better.

Hi Lynne,

Dr James posted about this in the below link. In summary "Undetected" means a zero reading in your blood. As to whether that means no virus in your system at all, I think klhilde's post on the same page covers it well.

Great to hear you are feeling much better. It seems many of us wake early on Tx (I only got 4.5hrs last night), just try to catch up when you can.

fixhepc.com/forum/experts-corner/177-blo...c.html?start=12#6189

Hi Lynne

I haven't got on paper my results regarding the viral load. My nurse rang me with the results of my week four bloods and I think she said virus undetected which I assumed was 0 viral load. When I saw her she confirmed it was 0 viral load.

Last week I read a post from Dr. James regarding how to read the viral load and Gaj has shared the link. I also read in a post (could be the same one) that HCV can come up in blood tests for a fews years to come but the viral load will say undetected which means clear.

I am no too concerned about it. I will discuss it with my nurse when I see her. I am going by how I feel and overall I feel better.
My sleep is still effected. Although I don't wake up every hour I still wake up early but I have to roll with it until I finish meds.

Some days I can take on the world and then the next day am low in energy. There is no consistency with my energy levels. Although I have clarity and none or very occasional brain fog which I lived with all the time. Also the nausea has subsided. Its not as consistent and I have a better appetite. I think I may have put on a bit of weight which I could well do with.

The sleep disturbance is difficult. As Gaj mentioned try to rest when you can. When I can I have dosed in the day especially the last couple of days and when I am too tired I go to bed early.

I had high expectations that once I felt better it would be consistent and its not like that for me. One step forward two steps back. I have had the virus for 40 years and I have to get the healing process into perspective. I expect it all now!!

Another thing is that I have been on a strict diet and over Christmas I had a variety of foods that can affect my health and it has. I am more fatigued at the moment and a little foggy. I

I hope you've had a good break over Christmas and a chance to rest. All the best for a HVC free and healthy New Year!!

Joan wrote: I also read in a post (could be the same one) that HCV can come up in blood tests for a fews years to come but the viral load will say undetected which means clear.

Hi Joan,

Yes, two different tests.

1. There is an 'antibody' test that just tells you that your body is saying "yes, I have met this virus and fought with it". It doesn't tell you whether or not you currently have the virus only that you have had it at some stage. It is a relatively cheap quick test and was probably one of the tests your doctor used (along with others such as probably hep a & b) when he first suspected that you may have some sort of liver problem.

2. Then there is the PCR test which shows via detected/undetected whether you have active virus in your body. Your doctor would have run this test once he got a confirmed antibody test to see whether you still had the virus before recommending treatment. And it is the test used to check for SVR at various points and into the future if you ever want confirmation that the virus hasn't returned. (The V/L test is basically the same test but goes into more detail to tell you how much virus rather than just virus/no virus)

Test 1 is of little use to you as you already know you have had the virus in the past and it will show positive for many years, possibly even your whole life.

Test 2 in its basic detected/undetected form is what you need from now on as you just need to keep getting undetected or zero results to confirm the virus hasn't returned.

And while I'm mostly feeling better than I did pretreatment it is a bumpy ride some days....but there's light at the end of the tunnel now!

Hi Gaj

thanks for clarifying that. I did have the viral load test pretreatment as I know what the results were.

Hello all you Australian GT2s - have you seen Dr James last blog concerning the new treatment protocols?

If you are GT1 or GT3 then the PBS looks like it is going to come through for you (and that is 90% of all patients), however if you're GT2 then your only option is Sofosbuvir +Ribavirin and if you're GT4 GT5 or GT6 then you're still looking at Interferon and Ribavirin + Sofosbuvir. -

fixhepc.com/blog/item/34-pbs-listing-some-tears-in-heaven.html

Not sure how they came to this conclusion as it seems some GT2s on this forum are clearing without Riba.

Hi Joy

thanks for your post. When I approached my nurse regarding what I would need for my script (Sof & Dac) she suggested Sof & Riba and that they could supply me with Ribavirin at minimum cost, however I had done my research and decided to purchase Daclastivir as it has less side effects than Ribavirin. I would rather pay than put my body and mind through the possible sides effects of Ribavirin.

She along with my specialist did try to access both Sof and Dac on compassionate grounds, however the drug companies declined.

I am GT2 F3 and V/L 0 or UND at 4 weeks. Today I am now 8 weeks into treatment and specialist decided to skip 8 week bloods. I will have them at 12 weeks. So I am one of those GT2 who at this stage has cleared the virus on Sof & Dac.

I have no answers as to why GT2's are to have Riba as my specialist agreed that Dac would be fine.

All the best for the New Year

Hi Joy,

I suspect Joan picked it for GT2 with the Ribavirin being cheaper than Daclatasvir and still giving "acceptable" clearance rates and "minimal" sides.
Of course this depends on who's wallet is defining "acceptable" and "minimal", doesn't it?

For the GT4-6, I'm not really certain as Peg costs are usually fairly high but maybe they have a stockpile of Peg left over and figure that upsetting small numbers of a minority group of patients are better that antagonising the three main GTs in Australia?

Hopefully the finalised recommendations will include Riba and Peg free subsets in which case it would probably be advisable to make sure your doctor determines you as unsuitable for these old meds if in one of those GTs.