Fingers and toes crossed for you AD, that you SVR 24. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
The feeling like I've lost my security blanket has started to subside but that didn't stop me from asking for a test round the 6 - 8 week mark when I saw the liver nurse today. (Hb was completely normal for people on riba- actually up on what my 2 week count was.)
I said to her that I don't think I'll accept it's really gone (assuming it is) until about the 12 month mark.
Huon Valley, Tasmania
Hep C+ since 1980s
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
great Alsdad! congratulations, Not long before we'll have lots & lots of SVR12 threads on this lucky site.
all the best for your HCV-free life!
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Congratulations on crossing the finish line Alsdad. What a journey.
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24.
A thousand thankyous to Dr James and the amazing FixHepC team.
It must be an awesome feeling to know that you've come to the end of a long, long road....and now you have health & living free of this scourge to look forward to. Wish you the best for a sustained SVR
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
LondonGirl wrote: Alsdad, funnily enough I was just having a good old rant re the NHS and its incredible bureaucracy. It is getting quite frankly ridiculous and putting lives at risks in a variety of departments.
Anyway, will discuss HepC because that's why we're here
I can understand that Drs not warming to the idea of patients self-treating and possibly buying from dubious sources,
However, if someone like Dr freeman, a Dr. has organised testing of generic medicines at a reputable lab and the medicines have been deemed legitimate, then there really is no excuse. The total lack of willingness to look into it and the pure stubborn narrow-mindedness re improving the situation by is just plain immoral. Surely, if they communicated with Dr Freeman and with the option of electonic mail (*rolls eyes*) we have these days (uh hello??) a standard letter could be drawn up by Dr F / The testing lab stating the medicines had been tested and they are coming from a reputable manufacturer (or words to that effect anyway) - the very least they could do would be to monitor patients even if they are tied up with the legalities of patents and they can't prescribe. After all, it is saving money for the NHS patients paying for their own medicines for heavens sake!
With the will and some creative thinking, they could even set up testing here in the UK (uh hello again?) - No. Why? Because big business rules here in the UK, particularly England and shareholders are in high places - I will leave it at that, . They have got the NHS in a vice and they can't get out.
I also find it totally immoral that they have recently been offering not only Interferon to patients but Boc and Telap. (Yes, indeed). It's been a while now that they have stopped Boc & Telap in North America. What are they doing, using up old stock? of medicines that can harm patients and cause long-lasting negative health problems that not only reduce the patients quality of life, but also end up costing the NHS more, when there are now better options available? Arggg! Not one dot of a holistic approach - as apparently joint pain, nerve pain, eye problems IBS etc etc are ''not considered connected to the virus' or the medicines they have been using, even though there are plenty of medical papers written by top hepatologists , gastros and hematologist s saying the complete opposite and are available for patients to read online! We have to learn about this virus ourselves, because no-one else seems to want to acknowledge any of the symptoms we all have in common and most of us suffer that we all discuss on these forums.
Scotland no longer offers Interferon treatments for GT1s - A start at least. Apart from the fact the new treatments are better and more tolerable, Harvoni for Treatment Naive GT1s for 8 weeks is also cheaper than the triple ! - Absolute madness.
Another thing that concerns me, is Drs don't seem to do much in the way of basic observations eg Pulse, BP, Listen to heart, lungs, look in eyes, reflexes etc any more - Why is that? I have been 'looked at' once since being diagnosed 18 months ago and that was by an excellent leading professor of Hepatology who has since retired and who I booked a private appointment with. I nearly cried after that consultation because a medical professional had actually bothered to check me out nearly a year after diagnosis. He noted a slight tachycardia and slightly raised blood pressure noted in a letter to my GP which was sent to a stranger in Wales because the admin in NHS hospitals is a mess. On mentioning to my GP that I'd like him to check my heart out before treating, he told me to 'go on holiday and relax'. No wonder we are anxious when we go to appointments, we are scared to ask for advise or help re anything! We must remember that many GPs are now shareholders and partners in the surgeries, so financing of tests is a personal concern to them these days. There are many recent articles about how HepC can cause a higher risk of heart disease for example. How many of you have had a Dr listen to your heart lately ?
It seems to me that Drs just aren't 'Doctoring' here in England of late. I know there are some excellent Drs and specialists out there, but somehow they are being restricted and I've read some articles which raise this very concern, A recent one was from a cancer specialist who said he felt restricted in trying things that may work when a patient was deemed 'untreatable', and felt like he 'couldn't be a Doctor' - but that's another story.
I have talked to so many other Hepatitis C patients who have become almost phobic about seeing their consultant or GP - Surely this cannot be right? Why has it become like this?
End rant - feel a bit better for it , I think
Big congratulations on your 8 weeks undetected Alsdad and here's to your consultant for trying to raise the issue.
Totally Agree with you - rant well done!
Good Luck in wading through the quagmire!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16
13 Feb'16 VL UND
It's been great to be able to follow your story with its happy ending. It really helps those of us still on the path. Good luck to you and your liver!!
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