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Author Topic: Feeback from hep C treatment expereinces appreciated  (Read 8905 times)

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Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Feeback from hep C treatment expereinces appreciated
« on: March 31, 2016, 04:33:55 pm »
I am curious - I saw this small study and I am wondering if anyone has had treatment stopped early using this model, and if so, what were the results? https://www.hepmag.com/article/mathematical-model-predicts-can-stop-hepatitis-c-treatment-early
The data are conflicting...(sigh)
Thanks!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline HazelAustralia

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  • Posts: 178
Re: Feeback from hep C treatment expereinces appreciated
« Reply #1 on: April 01, 2016, 03:34:24 am »
Interesting...
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Feeback from hep C treatment expereinces appreciated
« Reply #2 on: April 01, 2016, 01:33:03 pm »
Love it. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline NYCHEPCMAN

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  • Posts: 63
Re: Feeback from hep C treatment expereinces appreciated
« Reply #3 on: April 01, 2016, 02:35:34 pm »
My doctor talked about this - saying that this one size fits all approach will change down the road once medicine has a better grasp on Hep C treatment...we are the pioneers!!  I'm taking all 84 days of my V-pack gladly - other than bad seasonal allergies - at day 59 I am happy and grateful to say no sx at all from treatment. If it wasn't for my week 4 blood tests showing undetected I'd swear these are fake pills.

 
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline FutureThinker

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  • Onward and upward!
Re: Feeback from hep C treatment expereinces appreciated
« Reply #4 on: April 03, 2016, 02:10:16 pm »
Thanks Lucinda.  I also have not heard about this particular study, but my doctor chose to put me on a 12 wk Harvoni course even with a 3 million VL, as my VL had fluctuated all over the place over the past 5 years, from this low of 3 mil up to 15.5 mil. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Feeback from hep C treatment expereinces appreciated
« Reply #5 on: April 04, 2016, 10:35:52 pm »
Thanks Lucinda.  I also have not heard about this particular study, but my doctor chose to put me on a 12 wk Harvoni course even with a 3 million VL, as my VL had fluctuated all over the place over the past 5 years, from this low of 3 mil up to 15.5 mil. FT
It is starting to become clear that initial viral load is not a good measure of what is actually going on in the liver. Until there is data on how long it takes for HCV to kill liver cells we do not know what the actual levels of infected liver cells is in the liver.


There are theories that HCV has mechanisms to widely vary the timing of how fast it replicates in the liver cell. This is the only supposition that makes any sense because the immune system cannot not attack virus particles inside the living liver cell it only works to kill encapsulated virus particles after the liver cell bursts and sends the virus into the blood stream. I think of it this way that the genome of the virus works with a clock like cycle that is a booby trap for the immune system because as it clicks over to a new form it then becomes harder for your immune system to adjust to the change. 


So essentially you can have a very high level of infected liver cells waiting to burst for a very long time. But when you go for a VL test the results can vary all the way down to below one million at any time during the course of the infection. 

The only thing that is certain is the fact: if you have a very high level of mature virus in the blood then your immune system is currently not keeping the levels in the blood down and the liver is being re-infected at a faster rate.
Also there will be more active virus particles in your secretions so you are at greater risk of spreading the infection if you have high levels in the blood. This is what always scared me the most during my years with this disease, that my viral load would be so high that I might infect someone by means other than direct blood to blood contact. Not knowing my current viral load and only relying upon my enzymes scared the crap out of me and more than anything else the knowledge that even the smallest amount of my blood and secretions could be dangers to someone with an exposed wound.


Being deathly afraid of simply putting a band-aide on your child with bare hands is not a feeling that is good for the soul.   


My regular specialist had a hard time convincing the insurance company that my 3 million viral load meant nothing because it was obvious that the level of infection was reaching a critical level and causing cirrhosis. In fact he could not prescribe the Harvoni and make the clinical call that I have cirrhosis, another GI had to confirm the diagnosis of cirrhosis before I was approved for 24 weeks Tx.


When I spoke directly to Gilead in Montreal and confirmed that indeed I had been treated with interferon and riba in 2004 the information then helped to get compassionate help with the drug.


So Gilead is not all that evil, but it is becoming clear that they would make more money if they did not try to extort a thousand bucks per pill because the truth is that this disease is much more wide spread than people think and easy access to treatment will need to become as much of an issue as were the efforts to eradicate polio!


Any other course of action is socially irresponsible. Worse still the current efforts to deal with this disease smack of elitist money grubbing bullcrap, more than sensible public policy. All bets are off if there is a swing to the right in the states this time around, you can bet that those who need help the most will again be marginalized the way HCV sufferers have always been.


So for me, getting treatment was a no brainer, the years of self doubt, fear and indeed sheer terror that a slow downward spiral to becoming incapacitated by HCV had to stop, one way or another!
« Last Edit: April 04, 2016, 10:38:49 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Feeback from hep C treatment expereinces appreciated
« Reply #6 on: April 06, 2016, 11:40:29 am »
Beautifully stated Eric. Aren't we lucky to that we are now free of hep C.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Feeback from hep C treatment expereinces appreciated
« Reply #7 on: April 08, 2016, 02:14:50 am »
I am curious - I saw this small study and I am wondering if anyone has had treatment stopped early using this model, and if so, what were the results? https://www.hepmag.com/article/mathematical-model-predicts-can-stop-hepatitis-c-treatment-early
The data are conflicting...(sigh)
Thanks!
What this study relies upon is weekly VL testing. The costs or VL testing will need to go down in most places to make this work, like I have said Gilead is not the only company that is raking in huge sums of cash here. In my case perhaps less than 24 weeks tx would have worked if I had tests at 8 and 12 weeks perhaps I might have safely cleared with as little as 16 weeks tx.


It seems that somewhere between 12 weeks and 24 should be the standard treatment with those who do not immediately go to LLOC within 4 weeks being extended past 12 weeks regardless of the degree of cirrhosis or past treatment history.
And those who can be treated with 8 weeks should be extended if LLOC is not reached within 2-4 weeks without exception.


So perhaps the standard should be 4 week VL tests during treatment for everyone and those who do not reach LLOC at week four should have bi-weekly VL tests during treatment.


Naturally as RAV testing becomes affordable and more widely done prior to treatment most of the individuals who will fail with current therapy can find out before committing to an expensive treatment that will not work.


More than the cost of the drugs needs to be considered and the process patent based gouging that is going on in VL and genetic testing for HCV has to stop before better assessment of how long each individual needs to take these drugs can effectively be determined. It might be a good study to see how much we are spending on testing here especially if the costs of the pills does not come down from the stratosphere.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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