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TOPIC: Contingency Plan

Contingency Plan 2 years 8 months ago #24201

  • Janet UK
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With less than 2weeks to go on generic Sof/Dac, I'm already thinking about how I'll cope in the event of post-treatment relapse and was reassuring myself with the thought that I'll simply try again with Epclusa. However, I was told by my NHS hepatologist last week that it might not be a good idea to re-treat, because of the risk that there will be medication resistant virus present.

Does anyone know if this is the case? She wasn't sure about it and said she'd need to find out. Having been damaged more than once by the UK NHS, I prefer to find out these things for myself!
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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Contingency Plan 2 years 8 months ago #24202

  • Mnem
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Hi Janet, Other people on this site retreat all the time, so I would assume your specialist is wrong in this topic. You were UND at 4 weeks, so just keep on hoping for the best. It is too early to work through next options. #flower #flower
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
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Contingency Plan 2 years 8 months ago #24203

  • DrJames
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Retreatment is certainly possible.

It's best to get it right the first time. I notice you are GT3 which is harder to both treat, and retreat as there are less options.

How long are you treating for?

I treat all my GT3s for a minimum of 16 weeks Sof/Dac as 12 weeks is really a bit short. We will be presenting that data at EASL next week.
YMMV
Last Edit: 2 years 8 months ago by DrJames.
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Contingency Plan 2 years 8 months ago #24204

  • Janet UK
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I was intending to extend to 16 weeks but arthritis is so bad that I can't walk more than about 20 metres. I have inflammatory autoimmune arthritis (Sjogrens Syndrome) as well as advanced osteoarthritis in hips and knees. I strongly suspect that the hep C treatment has brought on a flare of the autoimmune arthritis because it's increased dramatically since about week 3. I'm being assessed for hip replacement this week.

For those reasons, I made a decision to take my chance with 12 weeks treatment and have another go with Epclusa if I relapse. That way, i would get the surgery over with before retreating.

I sincerely hope I won't relapse, the autoimmune arthritis will settle and the hip replacement will make new woman of me.

I suspect the consultant was eating sour grapes when she said retreating might not be an option. She was quite surprised that I'd been treated and cleared without her input.
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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Contingency Plan 2 years 8 months ago #24211

  • DrJames
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Hi Janet,

I would not be surprised if the flare up of your arthritis is actually gout. I've seen a few case of that.

By the numbers you are chancing it with GT3 and F2/3 and 12 weeks. I would have suggested at least 16 if we'd been chatting about it before starting.

The two things in your favour are the undetected at day 26 (undetected here doubles your chances of SVR) and being a woman (also doubles your chances of SVR). You viral load on the other hand is the highest I've ever seen in a GT3 which increases the statistical chances of resistant clones.

It would be feasible to get a 4 week extension treatment of Sof/Vel to you before you run out of medication.
YMMV
Last Edit: 2 years 8 months ago by DrJames.
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Contingency Plan 2 years 8 months ago #24223

  • Janet UK
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Thanks James. I'm fairly sure the arthritis is not gout because there's no visible inflammation and it doesn't seem to fit the description of gout.

When you say it's feasible to get Sof/vel to me in time, are you suggesting I should change over to Sof/vel for the final 4 weeks? I'm on Sof/dac currently.
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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Contingency Plan 2 years 8 months ago #24225

  • Janet UK
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Well I decided to take the plunge and order a further 4 weeks sof/Dac. It will be dispatched from India tomorrow.

James, do you have any-up-to-date stats on success rates for previously treated G3s with F2-3?

I like to think that other people will benefit from reading my posts when they're gathering information​ to base their decisions on. I'm so very grateful for all the information I've gathered from reading forums like this. I've come across some really caring, helpful people.
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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Contingency Plan 2 years 8 months ago #24228

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Edited: double post
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
Last Edit: 2 years 8 months ago by Sven.
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Contingency Plan 2 years 8 months ago #24229

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Janet UK wrote:
With less than 2weeks to go on generic Sof/Dac, I'm already thinking about how I'll cope in the event of post-treatment relapse and was reassuring myself with the thought that I'll simply try again with Epclusa. However, I was told by my NHS hepatologist last week that it might not be a good idea to re-treat, because of the risk that there will be medication resistant virus present.

Does anyone know if this is the case? She wasn't sure about it and said she'd need to find out. Having been damaged more than once by the UK NHS, I prefer to find out these things for myself!

Uh um....no I wasn't clearing my throat I was thinking how I thought the same thing and I was so wrong. BL, you were UND at 26 days don't let the blues last too long. I was UND after 4 weeks, most that are UND at that time have great results, so rock this and like I said don't keep down too long. Because before you know it you'll be be HCV free by summers start.
BTW.....You've got this.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
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Contingency Plan 2 years 8 months ago #24238

  • Greedfighter
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Hi Janet UK,

Listen to the advice from James Freeman. He is the leading expert in the world on generic Hepatitis C treatment.
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
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Contingency Plan 2 years 7 months ago #24243

  • Janet UK
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Greedfighter wrote:
Hi Janet UK,

Listen to the advice from James Freeman. He is the leading expert in the world on generic Hepatitis C treatment.

Yep, I'm really grateful for James' advice. My supply of a further 4 weeks treatment is on its way to me.

Thanks all!
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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Contingency Plan 2 years 7 months ago #24261

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Hi Janet,

I've just caught up with your posts and I'm really pleased that you've been able to extend your treatment to 16 weeks. We're so lucky to have Dr F's advice.

I can see you have a few other complications to deal with. Hopefully getting rid of this virus and finishing treatment will give you the opportunity to concentrate on those. Wishing you well for these final few weeks.

Coral
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Contingency Plan 2 years 7 months ago #24263

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Thanks Coral. I agree that we're very lucky to have Dr F's advice. Words can't describe how much I appreciate the support and advice I've been given by him. We're also very lucky to have the support of the wider online generic treatment community. I actually feel as though I'm in better hands than if I'd been treated and monitored by my NHS consultant and nurse specialists.

I sincerely hope that by posting my experiences and questions publicly, others will gain too. Best wishes to all.

Jan
Infected 1981 by contaminated blood products
Geno 3
Interferon/Ribavirin 2009 relapsed after EOT
Generic Sof/Dac started 28 Jan 2017
Baseline VL 24.7 million
UNDETECTED after 26 days.
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