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TOPIC: Started treatment!

Started treatment! 2 years 2 months ago #24836

  • jenrn180
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I am in the US and have been denied all of my appeals for treatment despite having a viral load of 25 million. I am F0 but VERY symptomatic. That didn't matter to the insurance company, who basically stated that I had to be in full blown cirrhosis to get DAAs. It's disgusting. Criminal as far as I'm concerned.
When I found out I had this horrible virus (3/21/17) I immediately did a lot of research, obsessed with finding meds. I went down rabbit hole after rabbit hole trying to navigate how to get meds and accidentally stumbled on Greg Jeffrey's site. I emailed him and he gave me some invaluable information. I then enrolled in the Redemption trial and am on day 9 of generic Harvoni treatment. I know it is probably too soon to feel any real results, and maybe I am experiencing a bit of placebo effect now that I'm actually doing something instead of sitting around waiting to die or lose my job because of so many sick calls. But honestly, I'm feeling great. My energy is the best it has been in a year and my constant nausea is almost gone. I get a mild headache if I don't drink enough water and am avoiding caffeine alltogether. That part is hard, but I didn't want ANYTHING to diminish the effect of the meds and felt it would just be easier to avoid caffeine/energy drinks.
If anyone is reading this who is in doubt about the legitimacy of this study or thinking it is too good to be true, please don't be. The alternative given to me by my insurance and doctors was to wait and do nothing until I am irreversibly cirrhotic and in liver failure, at which time I would qualify for meds. This was an unacceptable option to me. I was willing to take the chance with Indian generics and believe they are working. To further quell any concerns related to US customs confiscating the medications, my package was held up in customs for 4 days, inspected, repackaged by US customs, and despite them inspecting it, my meds were safely delivered to me in 15 days from date of purchase. I think that Dr Freeman, Dr Crozier, Greg Jefferys and Dr Debasis are rockstars. Saying thank you isn't even scratching the surface in expressing my gratitude. Thanks for listening.
JenRN
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Started treatment! 2 years 2 months ago #24838

  • Hazel
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Great story, so glad you are underway. I felt different, really different, after only 3-4 days, I assumed it was relief, and placebo effect but time showed no, that is what feeling good feels like. The weight- I think of it as having a backpack on (actually huge hiking pack by the time I had it 30 years) and someone slips another pebble in it every day. It lifted off me- not quite all at once, but nearly. I love hearing other people getting that feeling. Wow, we are lucky.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Started treatment! 2 years 2 months ago #24839

  • Greedfighter
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Hi jenrn180,

Thanks for posting; these meds start working right away. I could actually tell from my first tablet I was going to be cured, I felt amazing from day 1. Generics, whether from India or Bangladesh are exact copies of brand names. Chances are you will be cured. If you are not, you can follow up with Dr. Freeman or Dr. Devsam at www.GP2U.com and they can prescribe other medications. You are in the right place: the only place to be once denied by insurance.
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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Started treatment! 2 years 2 months ago #24846

  • gypsy
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The U.S. has terrible insurance, terrible doctors. You have to be your own advocate. I am in U.S. too and I found the diagnosis myself, and was misdiagnosed by 4-5 doctors before I ordered my own tests and said "look here". Fed up! I saw this site and did the same thing as you. Too good to be true? Yes but it is true!! I am telling everyone. I do not care how many people know I have hep C. I want people to go out and know they have a choice to take generics and not just be out there waiting to get sicker. Glad you got treatment and are doing well on it. I just finished my first month and now for bottle 2. LOL. Sounds like you are going to do great on it. I had the same fears as you about going through customs but after researching all the data and knowing it was legal and coming from a good source, that was reassuring. The best gift!
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Started treatment! 2 years 2 months ago #24852

  • coral
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Hi Jenrn and Welcome,

Well done taking control of your treatment. Everyone is different and some people do start to feel their energy returning early in their treatment. I could also feel when things started to lift. I totally agree with Hazel's analogy that it was like having an enormous weight lifted off of my shoulders. One of the things that I have noticed the most is the clarity around thought and decision making after living in a brain fog. Very energising!

I also developed headaches if I didn't drink enough water but the side effects are usually minimal and it looks as if you are travelling pretty well so far. #flower
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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Started treatment! 2 years 2 months ago #24858

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Thank you Hazel! I feel so lucky to have found this program and it feels good to be in a forum where people understand the struggles associated with hep C. I'm sick of this being called a silent disease. It isn't. It's deadly and ugly and criminal how care is rationed. I hope to report good blood work at 4 weeks into treatment!
JenRN
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Started treatment! 2 years 2 months ago #24859

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Thank you Gypsy! There is so much talk in this country on health coverage etc. but what difference does it make if DAAs are being denied unless you are F3 and in liver failure? I have coverage and it hasn't made the slightest difference. Bottom line in the US, is that hcv patients literally are living with a sword on their necks as a result of pure greed. my Dr told me to "rethink using generics" because my use of them may disqualify me for a transplant if I were to need one in the future. My reply to her was that I won't need a bloody transplant if I had treatment covered. Another thing...it takes 6 weeks to see my gastroenterologist every time I see her. I've sat for 3 months with no movement on my script etc and then it was denial denial denial. I had all my meds ready to go while trying to get it through insurance, which I was certain was going to be denied due to my fibrosis score. This trial, which only costs approx$1200, has provided me with inexpensive and readily available doctor appointments via GP2U AND medication. Gypsy, I am unsure where you live in the US, but how are you getting the word out about this program? Are you meeting any resistance? Thank you!
JenRN
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Started treatment! 2 years 2 months ago #24860

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Hazel I can't agree more. I was in such a dark and hopeless place before finding this program and talking to Greg Jefferys. My life is worth more to me than the $84,000 Harvoni price tag that my insurance company refuses to pay. Feeling controlled by this dynamic is easy to fall prey to. Once I realized I had control and didn't have to wait anymore it was literally like the clouds opened, I felt totally hopeful again. And that hopeless feeling hasn't been back since. I am so grateful.
JenRN
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Started treatment! 2 years 2 months ago #24861

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Thank you Greedfighter. I like the name...it is quite relevant in this fight in the US for hcv treatment. I work exclusively with hep c patients and in transplant. I had NO idea care rationing was going on the way it is and just assumed that treatment was available to everyone. That's scary, because healthcare providers who are intimate in the field of hep C don't realize that despite there being a cure, the majority of insurance companies aren't paying up. Does anyone find it odd that the Harvoni commercial says "join the 200,000 people who have been cured by Harvoni." Only 200,000 people are cured when there are millions of Americans with this disease? I have access to the top hepatologists and transplant surgeons in the country and have been unable to access treatment in the US. I'm told I'm too "healthy" for treatment. AND more concerning still is that I, a healthcare provider, had NO idea generic DAAs were even available until I did more research and enrolled in the Redemption trial. We have lots of educating to do. Unsure yet how I'm going to get the word out and have asked my employer if I can share my own experience with my patients. Regardless of my own outcome, as it is too soon to tell, it's important to get the word out that this option exists for those who are being held hostage by insurance and immoral price gouging by the drug companies. Thx for listening.
JenRN
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Started treatment! 2 years 2 months ago #24862

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Thank you Coral!! I agree about the brain fog. I'm remembering things better and sleeping a great deal less. No insomnia. Thx for the encouraging words!
JenRN
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Started treatment! 2 years 1 month ago #24876

  • Lilyfield
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Jenrn, Welcome -

I also am in the U.S. and was unable to get coverage. I have had the disease since the early 1970s and also was told I was "pretty healthy"! To cut to the chase, I also would like to spread the message. I just received my EOT SVR 12 week results!!! I am in the Redemption 4 trail; Panovir from Incepta. The entire process was a breeze! Doctor Freeman is wonderful/incredible...

I am in Florida and would like to become proactive. I too am disgusted with the health care system in this country. On the Propublica website they have "Dollars for Docs". The disclosures included in Dollars for Docs were required under the Physician Payments Sunshine Act, a part of the 2010 Affordable Care Act. My gastro doc received over $84,000 from Gilead and others over 3 years. Need I say more. He is no longer my specialist.

You are in the best place for treatment with the best!
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