emo Understanding SVR - Why don't we call it cure?

More
6 years 4 months ago #13691

So do you recommend being tested at 24 weeks as well and 4 & 12?


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
The following user(s) said Thank You: LondonGirl, Ariel, IRMA88, isaing4, magpie

Please Log in or Create an account to join the conversation.

More
6 years 4 months ago #13695

Yes, it's probably not a bad idea but unless you were one of those asymptomatic people with normal liver functions if you did relapse you would expect to feel sick and this to be obvious on your liver function tests.

After SVR24 maybe check it in a year to satisfy paranoia and declare yourself cured beyond all reasonable doubt.


YMMV

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20749

I just saw this pessimistic take on SVR and "cure". I think he is being overly pessimistic, but still, he has been in the field for 30 years and is worth listening to: hepatitiscnewdrugs.blogspot.com/2016/04/...uate-to-cure-in.html

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20751

If there is no levels of he virus in the body 6 months after your treatment, many Doctors are calling that a "cure". You can't pass the virus on to anybody and there is no damage being done if there is no virus in the blood test results. I undertand about him talking of no "long term studies" but I'll be happy when my liver values are in normal range and not in the 400 hundreds like the last 20 years.


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20752

Well, I agree for the most part. But he claims that even in the case of those who have undetectable virus, some shed viral particles occasionally and in one experiment, these have caused infection in others (chimpanzees).

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20753

I'm not a doctor, but this guy is full of shit. I read many years ago that if you were exposed to the Hep C virus, via sexual contact or IV drug use, the standard for declaring someone "uninfected" is 24 weeks. Seems to me that logic would indicate if a Viral load test cannot detect the virus at 24 weeks, you are 99.9% cured.

If Dr. Freeman says this, then I believe that 1000% more than some unknown doctor. Dr. Freeman is being quoted world wide in the press. Dr. Freeman is out here risking everything to help Hep C patients.

Even Gilead is saying if you are SVR 12 that is a cure. So between Gilead and Dr. Freeman, I believe SVR 24 is a cure.

Forget this loser, he's just looking for exposure. Maybe one in 5000 people is still infected after SVR 24. I'll take those odds. :cheer: :+1:


Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 5 years 11 months ago by Greedfighter.
The following user(s) said Thank You: Ariel, Gaj, Hazel, MtGoat

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20754

Tommy I hope you move forward with treatment. I sent you a pm.


Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 5 years 11 months ago by Greedfighter.
The following user(s) said Thank You: Tommy

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20758

Hmmm, I'm not a doctor either but I notice that one of his complaints is that 1-2% of those who were F3-4 and achieved SVR in his study developed complications such as HCC and decompensation of their cirrhosis. I know that the rates for comparable patients who either don't SVR or don't treat at all are quite a lot higher. I do agree with him that long term retrospective studies will usefully add to our knowledge and I'm sure that these will happen over the 20 or more years that he throws around.

..........however, he hasn't walked a mile in my shoes so I will just state that I won't be waiting that long as I have already felt the difference to my quality of life that treatment has brought about (despite an initial relapse) so I'm looking forward to maintaining those improvements by successfully achieving SVR whether it meets his definition of a "cure" or no. :P


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 5 years 11 months ago by Gaj.
The following user(s) said Thank You: pat1, mgalbrai, Ariel, Hazel, MtGoat, Matt-Kenney-google, fretboard

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20759

Greedfighter wrote:

I'm not a doctor, but this guy is full of shit.

Gotta agree with you, he's full of shit! SVR is all we have so it's a cure for us, once I reach it anyways. :lol:


Attachments:

G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
The following user(s) said Thank You: mgalbrai, Gaj, Greedfighter

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20762

I agree with Dr. Freeman's assessments and say, "well said" to the recent posts. Could not agree more with the eternal optimist, Gaj. :+1:

Matt


GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
The following user(s) said Thank You: pat1, Ariel, Gaj, MtGoat

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20764

That's not optimism Matt, rather confidence. :)


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
The following user(s) said Thank You: pat1, Ariel, MtGoat, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20771

Dr Freeman,

Just wondering – getting a viral load test at 24 weeks is expensive for most people (or for the taxpayer if one's quota has not run out) and takes a long time.

Would just doing the LFTs be a cheap and quick proxy to test SVR at 24 weeks and beyond?

If one assumes that a relapse will be associated with rising ALT/AST/GGT, would this be an economical runaround just to check that everything is still on track? Then one could do a PCR if the LFTs were high (assuming they had been abnormal during the original infection).

What do you think?


G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)
The following user(s) said Thank You: pat1

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20803

Hi A.L.

With the proviso that your ALT was elevated out of range pre treatment (a handful of patients with a significant VL have normal looking LFTs at baseline) then ALT elevation is a reliable marker for relapse. Elevations of LFTs for no obvious reason are the usual reason doctors look for HCV.

So, at SVR24, if your ALT is normal, and you're not feeling any of the "usual suspect pre-treatment symptoms" then HCV RNA PCR is largely academic - we are not going to find anything. My reason for ordering it would be to remove patient doubt/anxiety, rather than because it's strictly needed and I'm not already sure what the result is.


YMMV
The following user(s) said Thank You: pat1, Ariel, Gaj, re_roll, MtGoat, Greedfighter, Fara, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20815

Good morning
Re this question, from my perspective:
I'm doing SVR 24 for two reasons
1. To provide data for FHC
2. To provide peace of mind to Ariels head.
Recently I did LFTs they were fantastic so relieved totally agree that it's a great indicator of how things are going.
Today at around 21 weeks post EOT I am getting my scan results in hard copy and another LFT bloods done.
As James said above re peace of mind, I am doing this for me and my headspace really as I am absolutely certain I have been cured but I am an old relapser and need to be extra reassured. Simple.
Seems sensible to me.
I like to provide data too, as I am sure we all do, I think it helps attract people to FHC the more data the better I guess
This week I have achieved more than in four years since the old tx and I am so grateful to FHC
Ariel


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The following user(s) said Thank You: DrJames, coral, pat1, Gaj, Hieupham, MtGoat, Greedfighter, Fara, Matt-Kenney-google, Sven

Please Log in or Create an account to join the conversation.

More
5 years 11 months ago #20819

You rock beaches :+1:
Nicely said. Thanks,

Matt


GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
The following user(s) said Thank You: Ariel, Gaj

Please Log in or Create an account to join the conversation.

Time to create page: 0.058 seconds

Copyright © 2015-2020 FixHepC

Back to Top