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Post Info TOPIC: More info! yes!
Cinnamon Girl


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More info! yes!
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Some people experience quite severe symptoms from Hep C whereas other people have none at all, it varies a lot from person and person and doesn`t always correlate to the degree of liver damage. 

I understand how you must be feeling and I sympathise, I had those same symptoms for many years before I finally did my treatment.  It`s very frustrating dealing with the mental and physical exhaustion day after day, but the good news is that many people find they have renewed energy and mental clarity once they`ve cleared the virus. 

Just take it step at a time, gather your information, and I`m sure you`ll get your treatment, you just have to go through the process before you reach that point.  

Keep asking questions, we`re glad to be able to help if we can. smile

 

 

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Gracie


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Here is the link for viral load. It really doesn't have much to do with liver damage and can fluctuate quite a bit. Although lower loads are part of the criteria for shorter treatment duration. Yours is definitely low so you should only have to do 8 weeks.

I didn't have very many symptoms and I turned out to be F4 which shocked me. That said, I had low platelets (84) and an elevated AFP which are both signs of worsening disease and you have none of that so I'm sure you are fine.

Its an odd place to be and I know what you mean. You want treatment to get rid of the disease, but you don't want to be F3 or F4 which is what most insurance companies require. I don't think the Vik Pak is as hard to get though so even with a lower score, you may be able to get on that program.

I'm sorry you have so many side effects. These new treatments are just the beginning of the end of hep c, and you will reach SVR very soon, even if its not with harvoni as newer, less expensive ones are going to be reaching the market and competition will bring the price down.

http://www.hepatitiscentral.com/hcv/hepatitis/loadchart/



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
freesoul


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Yes, fibroscan seems like the next logical step.

I have a couple questions though...

1. how does one read a viral load? from the info above (on my first post) what would be mine?

2. do fibroscan results correlate to being symptomatic at all? do liver panels? wtf does??? I am terrified of being denied treatment. I am tired of being exhausted and itchy and achy...not to mention all dizzy and confused. I know that probably some of you have it a lot worse- I'm sure of that. I'm just trying to make sense of the fact that my tests so far are, well, not so bad. How can that be? I feel like crap.



__________________

38 yr old, Fib stage 1, last VL 5.3 mil - Cured by Abbvie clinical trial

Genotype 1a, Dx 2010 but probably had for 20 yrs+ 
Cinnamon Girl


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Hi Freesoul,

Lots of good information and advice from Gracie there and I agree that you`ll need to find out your liver status before you`ll be able to apply for treatment.  A fibroscan is a non-invasive test which many people prefer nowadays rather than having a liver biopsy. 

Just thought I`d mention that Abbvie`s drug combo which is known as `Viekira Pak` in the US, is marketed under the name of `Holkira Pak` in Canada, just to clear up any confusion! 

http://www.prnewswire.com/news-releases/abbvie-receives-health-canada-approval-of-holkira-pak-for-the-treatment-of-chronic-genotype-1-hepatitis-c-286652061.html

I`m glad you have some more information now and thanks for filling in your Signature line, that`s very helpful to us when replying to you.  Your ALT is fine, just a bit on the high side of normal, and yes you do have a low viral load. 

Wishing  you all the best of luck, I`m glad you found us!  smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Gracie


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Posts: 618
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Now when I go to my doctors to see my blood work etc., I ask her if I can take a photo with my phone of my tests for my own records and she says sure. I am also 1a.

Your viral load is on the low side. Viral load is no indication of liver damage though. And if you were prescribed harvoni, with a viral load under 6,000,000 (6.778 log), plus the fact that your previously untreated, you would only have to do 8 weeks. Harvoni is the easiest treatment at one pill a day with minimal side effects.

You need a fibroscan to see what stage you are at. These drugs are very expensive and insurance and / or medicare has restrictions on what they will cover. It's based on your fibroscan score. The lower the score the less likely they will approve paying for it.

There is also the Vic Pak which has amazing results too, and I believe that one is easier to get.

First thing to do is get that fibroscan! I did a quick search and all of these places do fibroscan.

Vancouver General Hospital
LAIR (Liver & Intestinal Research) Centre (Vancouver)
Pacific Gastro Services (Vancouver)
Percuro Clinic (Victoria) 
Prince George hospital

 



-- Edited by Gracie on Saturday 1st of August 2015 12:11:27 PM

__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
freesoul


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I went to my dr's office today and demanded to see my test results and to keep a copy. They made me see one of the walk-in clinic doctors, since he wasn't there. Not sure why all the fuss. I said I wanted to know my genotype- she didn't know what I meant... Finally I said I just wanted to see a copy of the test results! It is pretty clear there.

I need better doctors blankstare

 

Anyways, super new at this, but:

My genotype is 1a. I think this means my options will involve Sovaldi...maybe a Hokira Pak or Harvoni?

The HCV RNA is viral load, as per google, and mine is 149265 iu/ml       5.17 log10/ml and this is low, I think? better chances of cure?

My ALT is 39. A little high.

 

The others...Bilirubin 3, alkaline phosp 43, gamma gt 20- no idea how they matter, but they weren't flagged so I assume it's normal.

Hopefully I got this thing? Not sure about fibrosis or anything yet, that's still to come

 

I am trying to see what treatment does the best against 1a in a first round, what else I should know, what other testing I might need...I am scouring the forum and learning as fast as possible. I don't trust my medical providers much...but we are short of available doctors around here, and beggars can't be choosy n all!

 



__________________

38 yr old, Fib stage 1, last VL 5.3 mil - Cured by Abbvie clinical trial

Genotype 1a, Dx 2010 but probably had for 20 yrs+ 
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