Hi Pat,

Thank you very much for your post and for the link to the article. The article you posted, and the one Gaj posted, do offer some reassurance. The message from both seems to be the same: clearing the hep c virus does in most cases clear all or most of the symptoms of cryo. But while that is good it’s obviously not as good as clearing cryo completely in all cases. So I think I still want to get tested.

The word is scary and the photo on wikipedia even more so, but luckily I don’t have anything as bad as that. The difficulty in trying to diagnose it from symptoms is that cryo can be asymptomatic and even when symptoms are present they are often vague and elusive.

My symptoms are mild – some bad rashes, but on the face not the lower legs; poor circulation in the hands and feet; and some joint and abdominal pain. Possibly, or even probably, they are not connected with cryoglobulinaemia at all. Nevertheless, after 4 decades or more of hep c infection I’m not taking anything for granted and I would like to have a cryo blood test just to exclude it.

I’ll ask my GP for a cryo test but I think he may say no or want to refer me to the local hospital hepatology department first. The latter don’t always agree to what I ask for so I may end up having to do the test privately.

James-Freeman-Facebook wrote:

So enough results are in, and out of embargo so now I can say what I was dying to say at the time, well actually…..

Generic Sofosbuvir + Ledipasvir delivers damn good SVR rates and we repeated a trial Professor Gane did (26/26) with Sof+Led+Riba in GT3 and got 13/13 = 100% SVR – please don’t get excited this was in treatment naive low fibrosis GT3 only and the +Riba was essential.

Here is the data: fixhepc.com/forum/media-news/914-easl-sl…-4-svr4-overall.html

Isn’t Slide 11 – headed “SOF+LDV+RBV for GT3(Ed Gane 2015)” – a double-edged sword for Prof Gane?

It praises Prof Gane’s research by reproducing his results on the use of LDV plus Riba for GT3 (although, in passing, most GT3-ers would, I imagine, prefer SOF + DCV without Riba to SOF + LDV with Riba).

But, on further reflection, it’s apparent that this result has been largely, if not completely, achieved through the use on Redemption 1 of the very unlicensed LDV from China and Bangladesh, which Prof Gane has been at pains to warn the world – first in his NZ radio interview, then in his NZ TV interview and again in his piece in the NZ patient group mag – may be substandard and ineffective.

As far as I know, Prof Gane has not withdrawn or qualified his previous remarks about the possible inefficacy of unlicensed ledipasvir or at least of some types of unlicensed ledipasvir.

It’s true the Redemption 1 results are at this stage only preliminary and, because of the timeline, are mostly SVR4 not SVR12. Also the EASL slides do not state the precise provenance of the unlicensed ledipasvir used in the trial– was it, for example, buyers’ club Chinese Mesochem LDV or Incepta’s Twinvir or Beximco’s Lesovir-C or some combination of these and, if so, in what proportion? The former could be remedied by the publication of the SVR12 results when they become available. Disclosure of the latter could be very informative and relevant given the uncertainty about the precise scope of Prof Gane’s comments.

It seems to be me that some sort of resolution of Prof Gane’s thesis about unlicensed ledipasvir would be desirable and that Redemption 1 is the best placed trial to do this. If Prof Gane proves to be right then he needs to be congratulated for alerting the world to the possible dangers of unlicensed ledipasvir or at least of some types of unlicensed ledipasvir. But if he proves to be wrong then perhaps he should be given the opportunity to correct or qualify his previous comments – because uncorrected and unqualified those comments have the potential to be not only damaging to the unlicensed generic industry but also needlessly distressing to those patients who have used unlicensed ledipasvir.

Gaj wrote:

So my question would be why would you want to effectively ‘warehouse’ yourself and wait indefinitely…..and for what?

Well, you may not want to wait indefinitely but at the very least sofosbuvir monotherapy, IF it is sufficient to achieve viral suppression, could provide a stopgap while you researched your options and decided what to do. Yes, cure is better than maintenance therapy but once you have relapsed there may not always be a clear retreatment option available. In the longer term maintaining viral suppression could enable you to wait for the appearance of a new knock-out non sofosbuvir-based pan-genotypic remedy. Or, in my case, it could enable me to wait in a state of viral suppression until the NHS finally agrees to fund my treatment, taking the cost and anxiety of determining treatment out of my hands.

dointime wrote:

The question of sofosbuvir monotherapy has been researched and trialed in the Pharmasset trial ELECTRON.

Thank you, dt, for the links to the ELECTRON study. For me it makes rather chilling reading: it appears to establish that Prof Gane could well be right at least as to one thing, namely that sofosbuvir (at least in combination with ribavirin and hence possibly just by itself) is sufficient to suppress the virus while treatment continues and, indeed, to achieve RVR (rapid virologic response) as well. And if he is right about one thing it raises the inference could he also be right about other things? This latter point is perhaps off-topic here but I believe it raises this question: can a chemical like ledipasvir be tested to establish whether or not it is in the appropriate active, crystalline form which Prof Gane speaks of in his broadcast?