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TOPIC: non responder

non responder 2 years 11 months ago #18455

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Im finishing month 3 of 4 months of zepatier and ribavirin.I cant clear though.Does it make sense to go to month 4 if my viral load went up last bloodwork.I am geno 1a stage 4.A lifetime (mid 80s) non responder.finally cleared on sovaldi-olysio only to relapse right after finishing.cleared again on 24 weeks of harvoni only to relapse as soon as I finished.my doc from the U of Penn said that I hqve built up a resistance due too all the treatments I have done.I was told to go to this site to talk to Dr James Freeman about my situation.Is there a way to contact him from here.Im not very computer savvy.
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non responder 2 years 11 months ago #18456

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Hello,

I am sorry to hear about your situation. Dr. Freeman will be around here. I think the best way for you is to book a consultation with Dr. Freeman at GP2U gp2u.com.au (or email This email address is being protected from spambots. You need JavaScript enabled to view it. to make arrangement)
Best wishes,
HP
Nishkama Karma
Cùng nhau loại bỏ Viêm gan C trên khắp thế giới!
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non responder 2 years 11 months ago #18458

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I know how you feel but think its a cop out for your doctor to blame past treatment for failure, medication that will target the RAV's is whats needed I believe.

I would add though that it seems like your virus is appearing very hard to treat in that you have hit it pretty hard already.
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
Last Edit: 2 years 11 months ago by Paul-Jarman-facebook.
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non responder 2 years 11 months ago #18463

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Hey GP,
Welcome, glad you made it by here. I don't know if the Doc has any ideas for you but he'll probably stop in within a few days. Read around, I think I read about one or two others who are non-responders somewhere on this forum. good luck!!
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
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non responder 2 years 11 months ago #18464

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Wow, that's gotta be rough. But you're at the right place.

So, someone at the University of Pennsylvania steered you to our little forum ... awesome. Our Dr. James is really making a name for himself.
I'll also advise you to schedule a "skype style" appointment with him. You can do that at GP2U.com. I'd suggest having your paperwork at hand to send to him.

In the mean time, take some time and read around the forum to get a feel for it. It's not as hard as it seems at first and there is a lot of good information here and lots of good people to help. Usually people will click the "Recent Topics" tab to see what's being discussed recently, or use the "Index" tab to look for specific subjects, but there is also a "Search" on the top of the page if you need it.

And as for other options, there are more new meds in the pipeline, so be certain you're going to kill this dragon as long as you don't give up.

For example, Velpatasvir is not yet approved for sale anywhere on the planet .... but .... I am aware of someone (who has not yet approved me identifying him/her) who has already received delivery of Velpatasvir. The price, including shipping, was US$1050.00 US$1060.00 for 12 weeks treatment (9 grams). And it's from a source which has repeatedly proven itself trustworthy.

So, after you have your meeting with Dr. James, if he thinks your next choice should be that drug then I can guarantee you he can also tell you exactly how to acquire it.

Welcome to our forum.
Last Edit: 2 years 11 months ago by klhilde.
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non responder 2 years 11 months ago #18465

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Hi GP,

Welcome. I can see you've had a rough ride but you've come to the right place. This site has so much good, up to date information and support. As others have mentioned you can skype Dr Freeman through GP2U which is what I did to access and commence treatment. He does keep an eye on this site as well.

As Klhilde explained there are new or alternative medications so hang in there.

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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non responder 2 years 10 months ago #18523

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GP7852 wrote:
Im finishing month 3 of 4 months of zepatier and ribavirin.I cant clear though.Does it make sense to go to month 4 if my viral load went up last bloodwork.I am geno 1a stage 4.A lifetime (mid 80s) non responder.finally cleared on sovaldi-olysio only to relapse right after finishing.cleared again on 24 weeks of harvoni only to relapse as soon as I finished.my doc from the U of Penn said that I hqve built up a resistance due too all the treatments I have done.I was told to go to this site to talk to Dr James Freeman about my situation.Is there a way to contact him from here.Im not very computer savvy.

Might have to wait for awhile for new meds. The abt530 looks very promising
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non responder 2 years 10 months ago #18680

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Thank you Kihilde
I have been emailing with Dr Freeman and he seems to be more knowledgable than either of the 2 doctors I see,1 of them from U of Penn who has a massive hep c program along with a big liver transplant department,which Im trying to avoid.Dr Freeman had me purchase sofosbivir as a 3rd addition to the remaining zepatier and ribavirin that I am currently taking.4 months worth shipped out today from the Kingswood compounding pharmacy in Austrailia.Hope it gets to me before my meds run out,you folks are the complete other side of the planet from me.(I am right outside new York City).I will be talking soon I hope with Dr Freeman about what he wants me to continue with the sofosbivir after my zepatier and ribo run out.This is gonna be very expensive for me but my life is on the line so I cant worry about it.I am not clearing on the 2 meds I am currently taking and if I don't keep trying I will just go back to the "Death cramps" in my legs that are so painful,plus the itching from the high bilirubin that makes me nuts and of course the nose bleeds that always happen at the worst possible moment.I have had enough of this disease and I am going to get rid of it or die trying.
Glen
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non responder 2 years 10 months ago #18695

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I like your attitude Glen,
You've beaten the "beast" in your heart, now, push on to beating it in the flesh. As many have said, you're in the right place and everyone here is behind you. :+1: You can be certain Dr. Freeman will go the distance with you. He would've taken into consideration the factors involved in your meds getting to you in a timely fashion, so just follow his directions.
In the meantime, why not cheer yourself with a little chuckle ... :lol: BTW. The story, all names, characters, and incidents portrayed in this production are fictitious. No identification with actual persons, places, buildings, and products is intended or should be inferred.. (especially not the 2 doctors or the facilities they practice in, that you mention in your last post) ;)

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!
Last Edit: 2 years 10 months ago by Matt-Kenney-google.
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non responder 2 years 10 months ago #18709

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Matt Thank you for the encouragement and the laugh.Its nice to know there is a site like this for people in (my our) condition to come to.I have been taking every hep c medication under the sun since the mid 80s starting with plain old interferon (3 million to 5 million to 10 million) and tortured with every other poison they came out with and nothing has gotten rid of this disease.The frustrating part is once im off the meds and my numbers go up I cant qualify for trials because my platelets get too low and the bilirubin gets too high.Thats why this time I have to sink or swim with Dr Freeman.I don't really know if its good that Im going directly from one regimen into another.Whether my body can handle it or not remains to be seen but I must try or Im gonna die anyway.
Good Luck Glen
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non responder 2 years 10 months ago #18800

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Hi Glen, So sorry to read of your difficult battle, but pleased to hear Dr F is on the case.
I wish you every success with your new journey.
LG
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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