Got my case file in the post this morning that I'd requested under Freedom of Information Laws.
Most of it is run-of-the-mill back and forth between doctors and sume semi-related investigations by the Rheumatology Dept (who I got my viral load result from during an appiontment in June !?!?!).
I've attached a letter sent from the Hepatology Clinic to my GP Practice which I hadn't seen before. It shows just what we're up against in our attempts to get some kind of co-operation from the NHS.
btw It wasn't me suggesting 20 weeks of Sof/Riba therapy (my first medicine choice before the Mesochem Dac became available), I told my GP 24 weeks, and she got it wrong, but I'll forgive her that because she's doing my basic blood tests now.
The clinic also spelled my name wrong but you can't see that because I've redacted it.
I think the idea of an 'independent testers' facility is excellent, in fact it could be the last piece of the jigsaw puzzle necessary, not just for doctors but for anybody wishing to buy and use the generics with confidence. With 2 generic Harvoni's in Bangladesh and no doubt more coming, the ability to test them is needed yesterday.
Second email.....somebody did it. Sprung it on them!
Step 1 Wait until test results come in
Step 2 Drop bombshell on two doctors
Step 3 Profit!!!
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
I put up a letter on this thread that I had obtained that was from my NHS consultant to my GP. I'd approached my GP about a script for 24 weeks Sof/Riba (which was my plan before the Mesochem Dac became available), and she asked the consultant for this and to monitor my viral load. The consultant was dismissive of generics, and said that viral load was the least of my problems with me wanting to take Riba. The same consultant had previously advised me (in a letter that I've also put up here) that, should a Sof based treatment eventually become available to me, I would have to take it with Interferon. This treatment option also requires (yes, you guessed it) Riba! This clown was just making it up as he went along.
This tells me two things, firstly, they forget what they've told you previously and rarely read your notes prior to consultation; secondly it's pot luck what they tell you on any given day according to their mood and therefore it's important to keep informed and not to accept the first thing they say but ask questions! I have heard many reports in UK of patients saying things like 'but I just read the latest EASL report and ' .......etc etc
And the consultant saying 'oh really?' etc etc
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
Good point made in that first email on Greg's blog - about the Australian Government sourcing generics direct from India.
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.
So, I'm now just over 8 weeks into my treatment. It's been mostly a doddle so far (he said, looking for some wood to touch). Had one very mild headache in the last week. Joint and muscle pain are still there but markedly improved from pre-treatment: I can now walk downstairs normally in the morning to get my cuppa and meds, as oposed to 'crabbing' downstairs sideways. I'm so optimistic about this, I've told my son and his best mate that I will probably be able to start taking them swimming again soon, which I'd had to stop earlier this year.
Just got back from having a fibroscan at my local hospital. I'd phoned them a few weeks ago to see if they did private consultations, and the clinic leader said that they'd be happy to do it on the NHS if my GP referred me. GP wanted a request from my hepatologist, which was easy enough to get. Handed it in to GP's last Monday, chased it up this Monday, and I was in the clinic this morning. A big thankyou to my GP Practice and the fibroscan clinic leader at my local hospital (who went over and above the call of duty in tracking down the referral letter to the CT scan unit, where it had been sent by mistake. A letter to the hospital commending her will be going out later). Fibroscan result was 4.9, so finishing my treatment on 12 weeks looks good to go.
Had some blood drawn for a vl test yesterday at Pall Mall Clinic, more as a personal reassurance than anything else. Assuming that it's still UND, I won't bother now until 12 weeks eot.
I feel like i'm getting toward the end of a fairly long road now, and I'm feeling quite relaxed about everything.
Well done for getting fibroscan done on NHS.
4.9 is a very good result!
My joints are playing up a lot on treatment specially my back and neck and I get a tention headache from the tight muscles in that area.