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Hep C Discussion Forum -> New Members Area -> New member, but not to HCV
Post Info TOPIC: New member, but not to HCV
Willy


Newbie

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New member, but not to HCV
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Thank you for the welcome.

I started on a board when I was DX'ed in 2003. I've been on a number of them.
I recall at one point someone challenged that the IFN/RBV treatment couldn't cure G-1, and frankly none of us knew any G-1's that had been cured.
Times have certainly changed.
Some of the new therapies are coming in 97%+ cure rates, and in all genotypes.

I'm glad I waited, but it was a risk, and I paid a price. What I can't say is how it would have turned out had I tried other routes.

I have minor damage. I may be pre-diabetes, I developed some HCV associated co-morbidities from waiting. I was cascading downhill in spite of doing every thing I could to slow advancement.

I was on a Riba arm in the trial, so I did Sov/Ledi/RBV, and I did it at a time that suggested that 8 weeks for naives was sufficient w/o riba

I developed peripheral neuropathy in the trial and tinnitus. These are both pretty much permanent, or have been since. I think both are unusual and I believe that the riba played a big part. They were not unique to me however. We all respond differently to the drugs, and we all have our own unique genetics and conditions. I ceased treatment based on my own decision, and I am very glad about that. I pretty much knew I was cured, and that only risk remained.

So ..... I cannot say; what was the damage from HCV, the damage from the co-morbidities, the damage from the treatment? I don't think there is a way that one can sort it out.

I know that I had a certain trajectory. I was going down hill fast.
The trial came at a perfect time and I was very fortunate to be cured when I was. Had I waited for approval I would have certainly gotten sicker and possibly hit cirrhosis, instead of close to it.


The recovery has taken some time. The damage happened slowly before the treatment and the recovery has also taken some time. As a testament to the new drugs I ran a 5K race just weeks after my treatment ended and turned in a decent time; better than most healthy people far younger than I.
Contrast that with an old friend who was in interferon and riba who needed a chair in the shower.

I'm not complaining

I still continue to improve. It takes time to replace cells, for some systems to rebuild, but in my experience they do.

Hep C taught me to take care of myself to some extent.
My new side effects have also been instructive. We sometimes need a little nudge to do better.

I have radically cut back on sugar and dairy. I feel as though both have helped me. I can't prove it, but for me I had hit a sort of plateau, and cutting back on these seemed to help. It takes some time but I think one notices small differences. Small changes can yield larger effects over years.

Anyway.....
I stopped the slide.....
I am in many ways in far better health than I was.
I am doing and able to do many things that I had lost/given up/ had no energy for/ or had lost my ability to do, not only physically, but mentally.

So I am playing catch up on life.
And it's great.

And I wish it all for the rest of you.

I still follow new treatments. I was a real critic of interferon, but to give it some credit, it was able to save some percentage of my past associates.
We are living in a far better era today.

cheers,
~w



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wmlj1960


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Hi Willy and welcome from me as well. That's excellent news about your achieving SVR, and your buddy too! I was Diagnosed in 1994 and also skipped the interferon for hope of something better. Failed 24 weeks Sov / Ribavirin in 2014 but tried again last year with Sov / Led (24 weeks in my case) which was the solution for me too, and with virtually no significant side effects. Ain't life great without that dragon beating on us day in - day out. Do drop in again when you get time. It's helpful for the ones who haven't had success yet to hear success stories like ours. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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Hey Willy,

Nice to meet you! Thanks for stopping by and sharing that great news with us. Keep in touch and let us know how your improvements progress. Good luck...



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Pablito


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Welcome too Willy.  It would be really good for us to hear of your improvement in more detail, if you have the time to put some meat on the bone.

I've just finished treatment and am awaiting my EOT bloods.  I too am F3 (just) so am really hoping that I get some regeneration when I achieve SVR.

Pablo

 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
robertsamx


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Hi Willy.  Glad you stopped by. welcome to the forum! The sof/led trial you were on was a good one and I'm glade to see it worked for you,You being f-3 makes it more difficult to hit SVR--So congratulations are in order.  Tell us more about your treatment experience if you can.   RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Linuxter


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Hi Willy,

Welcome to the forum, glad you are here!

So glad to hear that you have reached SVR and continue to improve, what wonderful news.

It's so nice to hear stories of success, it helps others, pre-treatment, during and post-treatment.

I'm about a month away from getting my EOT+12 labs and hope to be joining you in SVR soon.

Thank you for sharing this with us, please feel free to join in as often as you like, if you've been lurking here long then you already know what a helpful and caring group of members we have here. smile

 

Thanx,

Dave



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Willy


Newbie

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Hi- new member.

I was DX'ed in 2003, waited around for the end of interferon treatments.

Got myself into a telaprevir trial but dropped out when my damage was slight- never dosed.

 

In 2013 my damage had increased quite a bit and I was fortunate to get into a Gilead phase 3 trial (ION 1) for naives. I was cured.

My blood scored had indicated cirrhosis, but a biopsy revealed that I was a near stage 3, and was rapidly going down hill. I feel I has able to be cured at a good time and may see some regeneration.

 

I had some sides, but it has now been 3 years post TX and I'm still getting better. That surprises me a little, but it seems to me the case in my example.

 

I still follow HCV quite a bit.

I was on the internet quite a bit in a number of forums, and I'm still on a few.

One of my long time friends just SVR'ed a few days ago.

 

It's a great time to have HCV!  : )

 

I may be a bit of a lurker, but if and when I can add my 2 cents I will.



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