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Author Topic: SVR 39 AND DISCHARGED!!  (Read 10963 times)

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Offline FutureThinker

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  • Posts: 711
  • Onward and upward!
SVR 39 AND DISCHARGED!!
« on: February 22, 2017, 01:06:54 pm »
Well, it has been a long, winding, steep road on this HCV journey since 2011, but I have been discharged from my hepatologist w/ SVR 39!!  It still seems like a miracle, one for which I remain so very, very grateful. She wants my GP to do one more VL test in a year, I guess for knowledge/research reasons, due to the new status of these DAAs. She doesn't have a reason for my continued mild fatigue.

So for the fatigue, will be starting weekly Vitamin B12 injections, along with already starting several vitamin supplements found to be deficient on my GP's special blood work. I do not know if I was deficient in these prior to treatment, as I had no baseline testing for them, except for the Vitamin D.  It's been in the low of normal for a couple years now, so Vitamin K2 has been added to see if that will boost it. I absolutely do feel much better, brain working so much better and energy level is better --  just would like a bit more stamina if that's possible. Looks like it's going to take some time, and hopefully these new vitamins will do the trick.

So to those who are on this journey, or trying to start this journey:  Don't give up, hand in there, and fight to get treatment if you have to (like I did), as IT IS WELL WORTH IT to get out from under that black HCV cloud! My prayers and best wishes to all I've met on this forum, so grateful for all the support and advice over the past 2 years. I will continue to follow this forum and let you know how I progress w/ the energy issue.
LIFE IS GOOD! And remember:  the future is very bright -- FT
Logged
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 lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: SVR 39 AND DISCHARGED!!
« Reply #1 on: February 22, 2017, 01:45:10 pm »
Fantastic!!!!!!!!!! Do I hear the faint call of a budding Hep Story? (Hint, hint everyone) https://www.hepmag.com/category/hep-stories
Logged
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: SVR 39 AND DISCHARGED!!
« Reply #2 on: February 22, 2017, 03:35:57 pm »
GREAT!!!
Here in Canada the medical community is also doing long term records of those who clear the virus with DAA treatment. My doctor is doing a two and three year VL test. I guess the reason for this is to clarify how many are re-infected by either a spouse or subsequent exposure.

I don't think that they are worried about HCV being a creaper that hides somewhere in the body other than the liver. Most likely they are seeing what the overall exposure rates are because the truth is that we have no idea how many people are actually currently infected and what the low risk exposure stats are for this disease.

I just wish that they would do more long term anti-body assay testing for us long term and develop some idea about what the long term exposure to HCV antibodies does to us.
Logged
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

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  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: SVR 39 AND DISCHARGED!!
« Reply #3 on: February 22, 2017, 04:50:20 pm »
Hey FT congrats on being released from your liver doctor free from hep c and free from extra doctor visits that is awesome!

Wishing you a bright future!

Hi Mugwump

As I understand antibodies they are made by our own bodies so if you ever had or were vaccinated against measles for example you will have measles antibodies for life as we will have hep c antibodies for life.

Is there a concern that having antibodies to any virus could be a problem?

Due to inoculations or having had some of the childhood illnesses I have antibodies to measles, mumps, rubella, hep a, hep b, small pox, and probably a whole lot of other things as I was in the Army and had several rounds of air gun injections in basic training.

If having hep c antibodies is a problem wouldn't it follow that these other antibodies are also a concern? Personally I have never heard anything about this. Developing antibodies in our bodies is the point of being vaccinated against illnesses to prevent us from falling ill from them. Our hep c antibodies are ineffective against the virus unfortunately or they would have been able to develop a vaccine by now.

I don't see how hep c antibodies are any different that the other dozen antibodies I already carry. Maybe the reason they are not studying long term exposure to our hep c antibodies is because they don't think there is anything to study?
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: SVR 39 AND DISCHARGED!!
« Reply #4 on: February 22, 2017, 06:21:28 pm »
Quote from: Lynn K on February 22, 2017, 04:50:20 pm
Hey FT congrats on being released from your liver doctor free from hep c and free from extra doctor visits that is awesome!

Wishing you a bright future!

Hi Mugwump

As I understand antibodies they are made by our own bodies so if you ever had or were vaccinated against measles for example you will have measles antibodies for life as we will have hep c antibodies for life.

Is there a concern that having antibodies to any virus could be a problem?

Due to inoculations or having had some of the childhood illnesses I have antibodies to measles, mumps, rubella, hep a, hep b, small pox, and probably a whole lot of other things as I was in the Army and had several rounds of air gun injections in basic training.

If having hep c antibodies is a problem wouldn't it follow that these other antibodies are also a concern? Personally I have never heard anything about this. Developing antibodies in our bodies is the point of being vaccinated against illnesses to prevent us from falling ill from them. Our hep c antibodies are ineffective against the virus unfortunately or they would have been able to develop a vaccine by now.

I don't see how hep c antibodies are any different that the other dozen antibodies I already carry. Maybe the reason they are not studying long term exposure to our hep c antibodies is because they don't think there is anything to study?
Lynn, HCV antibodies seem to serve a different purpose and are chemically different they do not lock on to the disease and destroy the encapsulation the way other antibodies do. Just perhaps they are a key part of mechanisms of the disease that we do not yet understand. For some reason they are created by out immune systems at much higher levels than ones that impart immunity to other virus that we can be inoculated against effectively. What I am saying is that just perhaps they are a mechanism to help HCV to infect liver cells and not antibodies at all in the true sense.

My supposition is that HCV like HIV has evolved to attack human immunity but in the case of HCV it does not destroy it it alters it for a purpose. Also it is known that high levels of HCV antibodies cause flu like symptoms in some who are HCV positive long before there are any signs of liver damage whatsoever. This disease is different and there is much to learn about how it works to trick and evade the human immune system. Just perhaps there might be ways to cure this disease without resorting to drugs that cost far too much for most of the human race to afford!

I think this is what some of the scientists in other countries are working on and I would not be surprised if all of a sudden, soon something really simple and cheap comes along that knocks DAA's out of the loop. There might just be a very simple reason why a great many clear the virus naturally that we have yet to discover. Perhaps something like a simple and cheap to produce proto protein that can then be given to boost ones natural interferon production that effectively kills off HCV?

Also there must be a very good reason why only some of us still feel like hell both before and post treatment. And especially why some of us experience EHM like the 50% of infected individuals that develop measurable antithyroid reactions as reported in the much more thorough European studies into the long term effects of HCV infection.
Logged
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

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  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: SVR 39 AND DISCHARGED!!
« Reply #5 on: February 22, 2017, 06:28:38 pm »
Ok thanks I guess I will read more about this. I believe the for hiv it actually directly attacks and invades the cells of the immune system this is where hiv replicates making it much harder for our bodies to cure. But I am not super up to speed on hiv.

Anyway have a good one
« Last Edit: February 22, 2017, 06:46:23 pm by Lynn K »
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: SVR 39 AND DISCHARGED!!
« Reply #6 on: February 22, 2017, 06:44:14 pm »
Thanks!!  Yes, I agree there is still a LOT to learn about this retched virus..... we are the pioneers.  There still is a lot of research needed, so I hope Mugwump is right, that there may some day be something simple to all this. And most importantly, that someday, soon,  treatment is available to all who need it, world-wide.  FT
Logged
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 KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: SVR 39 AND DISCHARGED!!
« Reply #7 on: February 22, 2017, 11:45:47 pm »
Congrats FT! Well done. :)

kim
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Pete

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  • Posts: 110
Re: SVR 39 AND DISCHARGED!!
« Reply #8 on: February 23, 2017, 12:46:18 am »
Yes Congrats FT!  Bet it's nice seeing the dragon in the rear view mirror, knowing better days are ahead.  Like in Jurassic Park, where the T-Rex is chasing the jeep but eventually gets left in the dust.
 
I too have noticed my get up and go has sort have got up and went somewhere else since starting these meds.  So yes, please do keep us in the loop with regards to your energy progress. 

Best,
Pete
Logged

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: SVR 39 AND DISCHARGED!!
« Reply #9 on: February 23, 2017, 05:03:16 am »
How fantastic for you FT! Great news :)
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline jakas

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  • Posts: 265
Re: SVR 39 AND DISCHARGED!!
« Reply #10 on: March 02, 2017, 03:08:08 pm »
 :) :) FT You rock ! Great news !
Logged
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: SVR 39 AND DISCHARGED!!
« Reply #11 on: March 02, 2017, 08:47:06 pm »
Jakas, LOL and thanks! Start the B12 injections Monday, so am hopeful this and the other vitamins/supplements I'm taking that were found to be deficient will be the ticket (I guess this is the "Harvoni Detour" train). Will stay in touch and all take care -- FT
Logged
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 brie41

  • Member
  • Posts: 191
Re: SVR 39 AND DISCHARGED!!
« Reply #12 on: March 05, 2017, 02:34:02 pm »
Hi FT,

  I am so happy to hear the great news!  I just knew you would be svr, but it sure does feel good to know for sure!   I hope the B12 helps with the fatigue.  I am feeling great and I can't believe it has been almost a year since starting my journey.  My best to all of you and I hope everyone is doing well!  Take care.  Brie
Logged
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!
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