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TOPIC: My first post,with questions.

My first post,with questions. 1 year 8 months ago #28549

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Hello People,I hope you're all doing as well as possible.
I am tellietubbie and I have Genotype 1a.
I'm very confident that I acquired this virus in 1983, so 37 years ago.
I won't bore you all with the details,I'm sure there are no strangers to the delights of Hep C here.
I really would appreciate some answers please, I find my questions can't be easily answered.
I'll explain. I live in the U.K. and I would like to order medications from this site but don't want any involvement from the NHS in any way. (Just a personal thing).
I see from other areas on this website that certain information is needed pre treatment, I know my genotype, my last Fibroscan was 16 months ago and I know the result, and finally previous treatment types and dates are also known to me.
My question is this: is this information sufficient for me to start treatment using medication from this site?
In addition, as I can't get a prescription from my doctor, how do I get one, again without any involvement or reference to, both my GP and the NHS?
I currently have the whole body itching which is to put it mildly, dragging me towards insanity so I'm of the opinion that now is the right time to be doing treatment,I'm just praying that I can do it from here.
My apologies for being so mysterious, I do have very good reasons for it.
Hopefully someone will answer these questions and I thank you in advance,and wish you a very good day.
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My first post,with questions. 1 year 8 months ago #28550

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Hi Tellietubbie and welcome to the forum :)

Sorry to hear about your previous failed treatment efforts, 37 years is a really long time to live with disease. The good news is that getting cured is now easily possible with the new generation of medication, for an affordable cost using licensed generics, so there is no reason for anyone to keep living with this terrible disease.

Body itching is one of the most common symptoms of Hep C, and with successful treatment it will disappear quickly (your overall health will greatly improve as a matter of fact).

If you want to do everything away from the NHS, that is very possible. You can see FixHepC's founder, Dr James Freeman, online via video conference on GP2U using your phone or PC and get a prescription. He's a really excellent doctor with vast experience treating Hep C. You have most of the test results needed to book an appointment, but I believe you're missing 2 very simple and cheap blood tests, CBC (Complete blood count) and CMP (Comprehensive metabolic panel), Dr James will correct me if I'm wrong here. You will need to upload your test results to your GP2U account before the appointment.

If you need any help using the GP2U service, you can email Jan and she will be happy to help, her email is: This email address is being protected from spambots. You need JavaScript enabled to view it. All the best Tellietubbie.
Last Edit: 1 year 8 months ago by Mar.
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My first post,with questions. 1 year 7 months ago #28555

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Hello Mar. Thanks for answering my questions, unfortunately they generate new ones. What is the purpose of the 2 sets of tests you specify? Are they essential? I ask because I live in the wilds and even attending a major city is problematic for me so if I can do without them I would.
I've never had this itching before, it appeared out of the blue for no apparent reason, what I mean by that is that nothing (particularly diet) had changed to account for its appearance.
I did 48 weeks with the big clunky hypodermics, Interferon alpha I think, that was bad enough.
Then I was put on "opposition treatment" which used a different type of Interferon, that was the nightmare I never thought possible, I lasted 11 weeks and was taken off due to the side effects.
So I'm not a fan of treating this disease, crazy I know but thats how its panned out.
I'm praying that the itching disappears as mysteriously as it appeared, only time will tell.Everything is crossed.
Thanks again, have a good day.
Last Edit: 1 year 7 months ago by tellietubbie.
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My first post,with questions. 1 year 7 months ago #28556

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Hi Tellietubbie, I believe that these 2 tests are the minimum required to get a prescription.

⦁ CBC (Complete Blood Count) - To make sure patient is not too anemic and platelets are good.
⦁ CMP (Comprehensive Metabolic Panel) - To know patient's liver and kidney functions.

But I'm not a doctor, so if they are not absolutely required, I expect that Dr James will inform us here.
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My first post,with questions. 1 year 7 months ago #28557

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Hello Mar. Thanks for that information, it all helps.
Now its a case of hoping your Dr James will chime in, I'll practice twiddling things.
Have a good day.
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My first post,with questions. 1 year 7 months ago #28561

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Hello tellietubbie,


Itching probably relates to an increased level of bilirubin and suggests your Fibroscan might be F4 (>12.5kPa). That potentially has some impact on the choice of treatment, best duration of treatment and if we should consider Ribavirin.

In a perfect world we have full blood count, liver and kidney function results.

In patients with cirrhosis, we like to have an AFP as cirrhosis carries a 3% per year risk of liver cancer and this generally shows up with an elevated AFP. Treated early we can fix it. Leave it too late and it sadly becomes get your affairs in order time.

The best way to proceed would be for you to book an online appointment with me so we can go over it all together. gp2u.com.au/


Now, for the really important question: Is your favourite Tinky Winky, Laa-Laa, Dipsy or Po?


YMMV
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My first post,with questions. 1 year 6 months ago #28656

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Hello Dr James. I decided that before I spoke to you I would arrange for the various tests to be conducted first so that I would have all of the information needed. You may know that here in the U.K we have a two tier health service, the NHS and a number of private health providers. Because I am adamant that I will not have any involvement from the NHS in pursuit of treatment via this site I approached a number of private healthcare providers looking to happily pay for all of the tests required. I have found,to my dismay that this is not possible as every organisation I approached insisted that in order for me to give them money for their services I have to produce a letter from either my G.P or my current specialist. I know without asking that my specialist will not supply such a letter ( he refuses to see or talk to me following an exchange between the two of us), and my G.P. has formally refused to do so as I am, in his own words, actively upsetting the applecart. So no letter means no tests in the U.K.
I am of course aware that it would be impossible/impractical to embark on any course of treatment in these circumstances so I have no option but to abandon the idea.
I will take this opportunity to thank you for your involvement in my case and wish you well.
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My first post,with questions. 1 year 5 months ago #28662

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Rather than abandoning the idea, perhaps you should have a consultation with Dr. James with the most recent information you have.

I don't know this for sure, but Dr. James might have some insights with regard to testing.

No one should have right to deny you testing or treatment for a life threatening infection. Hep C kills. It kills us slowly, taking our lives and wellness from us bit by bit, day by day until we find ourselves at the precipice unable to live in denial, and unwilling to live with further physical, emotional, and mental decline.

I've been there, and I don't think I'm out of bounds in surmising that is exactly where you are today.

Unless you are resigned to dying from this disease, I wouldn't turn my back on treatment so quickly.

Don't give up!
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 1 year 5 months ago by fitz.
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My first post,with questions. 1 year 5 months ago #28665

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Hello Fitz.
Thankyou for your encouragement.
I think I am resigned to the inevitable for a wide variety of reasons which I don't want to burden you or anyone else with at this time.
It is my intention to make this my last post here so please don't waste your time and effort by replying.
Best Regards Peter
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My first post,with questions. 1 year 5 months ago #28669

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Tellietubbie:

Fitz’s words, I know, are 100% correct and life does exist on the other side of this disease. You must find a moment of clarity and decide to be the conquerer. Also a side effect of HCV will/can bring moments of despair, so when you feel that way know what it is and remember it can be cured. If you are apprehensive to treat just know a lot of us felt the same way but through encouragement from this site you’ll and we’ll get through it together.
Finally, I 100% agree with Fitz that when you start you’ll continue to win until you achieve the ultimate end game prize, you’ll be cured.

Treat now and never look back, by the end of summer you’ll be HCV free.
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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My first post,with questions. 1 year 5 months ago #28671

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Hello Sven. Thank you for the encouragement,I really appreciate it.

I've been talking to Dr James whose persistance has resulted in a 180 degree turn on my part.

It now looks likely that I will shortly be becoming intimately involved with Epclusa.

I am concerned with the availability of it given the current worldwide situation.

I had a look around on here and found the details of costs for the combination but don't currently know where (China or India) it's actually coming from.

Our postman has disappeared without trace and we've had no post here for over a week and the local office don't answer the phone , ever!

But, freshly spurred on I'm at least finally getting somewhere, persistance is my new mantra!

Thanks again, take care.
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My first post,with questions. 1 year 5 months ago #28673

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Hello Peter, Fitz and Sven gave excellent advice, and I'm glad that you came around after talking to Dr James, a very wise decision. Hopefully you'll be very happy you took it when you get rid of that terrible virus in a few months.

Regarding logistics, generic Epclusa that FixHepC supplies is made by the US company Mylan, and it's produced in India, it's the only country in the world where licensed versions of generic Epclusa are produced. Well that's not entirely true, there is an authorized generic available in the US now, but it costs an arm and a leg. Finally, FixHepC ships using DHL Express, not regular post, so there are no issues with delivery during the current circumstances.
Last Edit: 1 year 5 months ago by Mar.
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My first post,with questions. 1 year 5 months ago #28674

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Hello Mar. It's somewhat ironic that I've had more help from good people who I've never met than from my entire 'healthcare' team provided courtesy of the NHS, but there you go.
I wish I had a doctor of Dr James's calibre, his involvement in my case has been worth its weight in gold, I can't stress this highly enough.
Thank you for the details concerning origin and delivery of meds. In these unusual circumstances it appears little is guaranteed, although I would stress that that is only my perception of the U.K only.
So it's 'onward and upwards' for me thanks to all of you, I'll most probably be back with more questions as I embark on my most important journey.
Thank you again, I wish you well.
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