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I got more or less the same story from the NHS as you, except that I am in Scotland where they will treat you when you get to F3 - it's still advanced liver disease and who knows how many other related maladies I might develop by then which will be irreversible even if I subsequently get to SVR. And in the meantime I have to live with chronic fatigue and restricted quality of life. So NO, waiting really does not bear thinking about. We do what we have to do,
Got my (now 15 day) viral load test back by email this morning. Opening these files is like being a teenager again going on my first date : Stomach churning, hands trembling slightly, I opened the file: Virus not detected . No mistake with the test this time too.
First couple of days on the meds had been uneventful, followed by about 8 or 9 days feeling like I had a mild dose of the flu, with lots of headaches (odd considering how much Naproxen and Paracetamol I take). All that cleared up about half-way through the second week, And I started to feel more clear-of-mind than I had done in years. A couple of work colleagues commented that I looked different in some way. I think my eyes looked brighter, and my face didn't look fatigued all the time.
Myalgia and arthralgia haven't cleared up. Maybe that will come later, or maybe they're unrelated to the HCV.
What's the consensus on when I should get my next viral load test done? I'm paying for them myself and they aint cheap.
That's fantastic news Alsdad. Congratulations. I would have thought not much point testing again until the end of treatment if there are no signs to the contrary.
Just out of interest, have doctors given you any indication as to testing you under the NHS when treatment ends. Does having used drugs from OS preclude you from testing on an ongoing basis (under NHS that is?) The refusal to monitor in the UK strikes me as particularly reprehensible almost to the point of being unethical. I mean if they're that concerned about Chinese drugs then surely doing no harm would mean monitoring people who chose to go down that route against medical advice.
I was a dance teacher and extremely physically fit before HVC and other factors intervened. My joint and muscle aches have improved but there is still a way to go. My theory is that I've simply been so physically inactive and unfit for so long it's going to take a while to get it back. And I'm 10 years older now. Gotta allow for that.
But I would add to the other improvements I noted in another thread that that god awful bloated feeling has gone.
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
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Congratulations Alsdad, so happy for you, it must feel good. 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.
Thanks Chester & Emilio.
My GP wrote to my NHS Hepatology Consultant explaining my course of action and requesting a prescription for my generics (declined), and for the Hepatology Clinic to monitor my bloods (declined).
So my GP offered to to all the blood tests going forward apart from the viral load tests, which are tested at said Hepatology Clinic. They also asked to be kept in the loop with my private treatment and tests (I'd given the private clinic permission to contact my GP anyway), so I dropped off copies of the letters from the clinic and the extensive set of baseline blood tests I'd had done at the clinic a few weeks ago.
I'm due an annual appointment at my NHS Hepatology Clinic next April. If I achieve SVR, I'm tempted to go along and play dumb for a while (assuming that my GP hasn't bothered to keep them in the loop) and let them scratch their heads, before informing the Consultant that some fake third world generics have cured me no thanks to him and for him to go and try the anatomically impossible.
That's funny. I have fantasies about doing the same thing. If we are not the only ones then there could soon be a rash of people arriving at their NHS clinics appearing to be 'mysteriously' cured. Spontaneous viral clearance could start to pop up everywhere. I wonder what they would make of it. Would serve the b@stards right, the ones who refused to help us.
I should add that my NHS specialist is actually a really good doc who cares. He did agree to monitor me on the NHS if I got the Indian generics, but writing me a prescription was a step too far.
Maybe if all of us going down the generics route in the UK play dumb on our return to NHS clinics, the rash of unexplained miracle cures will become newsworthy. Then we could spring the lowdown on them, and make the NHS clinics publicly look like the bunch of Big Pharma-addicted ****s and medical dinosaurs that a lot of them are
Well it's true. A lot of them are. I'd like to think that some of them are not.
I get the impression that at my NHS clinic there's a few different things going on. Firstly, they are not very well informed about the world of HCV generics. Seeing as things are changing every day I can understand that. Secondly, they've been at this for a long time, decades, and they know what can go wrong, so their caution is understandable too. Lastly, the individuals running the clinic are hogtied by directives from above. They might have some leeway at their discretion but they can't disobey direct rulings.
I think you have to look at the top , the BMC (British Medical Council) to find the people putting out the directives. If I were Big Pharma that's where I would go to 'influence' matters. Then there's the NHS heads, as thick as thieves with their health ministers, each pretending to be horrified and wholly ignorant of what the other is doing. Good cop, bad cop.
And there are consultants like yours who choose not to exercise the discretion that they have. It's a bad show.
My NHS Consultant not only chose not to exercise his discretion, I'm pretty sure he chose to lie to me about available treatments for me (see the attached letter further up the thread).
On a purely anecdotal and hearsay note (and it shall remain that way), I used to work with a guy who told me his son worked in NHS admin, and had obtained his job with a fake CV. My former colleague was gloating about his son having recently been promoted into a fairly senior management position with the greeting "Welcome to the club" by his boss. It was quite the gravy train according to my former colleague. Which all concurred with the stuff my dad used to tell me about his business dealings with NHS middle and senior management: He loved all the business he got (and boy did they know how to throw money around), but hated most of the people.
Anyway, ranting over. Contrary to how it appears, I'm actually quite elated today for some reason, and I've only just started to 'come down' and feel tired.
I'm not on my backside financially, so I'm not looking to cut any corners on this. But I have to work for a living, so I don't want to waste hundreds of pounds on unnecessary tests.
Would it be advisable to get another test done during or at the completion of treatment?
There is genuinely no pressing need to do any more testing until your SVR moment, but if you wanted to do another one it would be at the end of your treatment course.
This advice, posted at fixhepc.com/forum/experts-corner/105-exp...load-monitoring.html was written by an expert in the field:
Re on-treatment virological monitoring, patients do feel reassured when they see how quickly and profoundly the viral load declines. But, the data indicates that basically 100% of patients taking sofosbuvir-based regimens will suppress virus to incredibly low levels and generally very quickly. Eventually, we may only do one HCV viral load testing after commencing treatment, either 12 or 24 weeks post-treatment. For now, and particularly for patients on generics, it is very reasonable to do week 4, end-of-treatment (week 12 or 24 depending on duration), and then 12 or 24 weeks post-treatment.
Just picked up my 15 day NHS blood test results from my GP.
ALP down a bit, still at the higher end of what's considered normal range.
ALT right down from middle of normal range to lower end.
GGT still high, but down from starting 357 and 5 days previous to latest 194 to 154. Hopefully this trend will continue.
Results (with personal info redacted) attached.
It takes time for your liver to recover and also time for the numbers to return to normal.
If I was you I would be grinning from ear to ear!
The odds are 20:1 in your favour about getting to SVR.
Have you noticed a difference in how you, as in your body feels?
I have one patient, a bricklayer, who said "I used to have to take a nanna nap after lunch, but now I'm back on the tools all day. The boys are all wondering what's come over me!"
Ha ha! Nanna nap. I like that one.
Still got the myalgia and arthralgia that I had for a couple of years before I started this treatment, but they can be side effects of Sof+Dac anyway. So maybe they improve post-treatment.
The big difference is 'up top'. I feel much more clear of mind, and don't get mentally fatigued. Also, I'd been getting increasingly irritable, particularly with my young son who is as as bright as a button and a live wire with it. I'd come to hate myself for being 'short' with him, but just couldn't control it. That seems to have faded now, with a relaxed mentality coming with the clarity of mind.