4 weeks VL results after Alinia from illo

[Hepatitis Researcher]

Illo, by now you should be on Alnia for at least 4 weeks. It would be very important to know the early response rate from this new and possibly extremely interesting drug to treat HCV and HBV.You did not indicate if you take Alinia alone or in combo with one of the Peg Interferons. Also did you have a VL before entering treatment?

[Ginger12521]

Hi there,

I also have your book, and found it to be very informative!
I've regained my health since first diagnosed with the use of a few herbal alternatives.
I'm still HCV+, but seem to have a handle on it. VL stays low to med range. Never over 850,000.

My faves are Picrorhiza Kurroa, Schisandra, Andrographis, and Phyllanthus. (I don't take all of these at once btw)

Picrorhiza, my favorite, is a great immunomodulator along with healing properties for the liver.

I haven't had a biopsy lately, but my ALTS are hovering around 20's-30's. Feel great.
I could tell after the first few doses of Picrorhiza it was working in a very positive way for me. My Internist, who is very open to Integrative and Alternative Medicine, was quite impressed with the Pharmacological properties of Picrorhiza.


I buy Picrorhizza in bulk form, grind it to a fine powder, and make caps. I take at most 400 mgs 2x daily. I like the idea it's claimed to be hepatoprotective also. Plus, it's claimed to restore depleted Glutathione levels.

Have a look at the studies done on this herb....


http://www.siu.edu/~ebl/leaflets/kutkin.htm

http://findarticles.com/p/articles/mi_m0FKA/is_n5_v58/ai_18242952

http://www.freepatentsonline.com/6733800.html

http://www.mdidea.com/products/new/new048.html



Take Care,
Ginger

p.s. I'm not selling ANYTHING...just wanted to share the info to those interested in Alternatives.

[jmjm530]

Magic: I have successfully normalised my liver function and achieved a good standard of health using some of the resources I presented in the book, particularly chinese herbal medicine, qigong, a few food supplements and exercise; my research suggests that around 80% of patients could achieve similar results providing progression co-factors are removed. ;
---------------------------------
No disrespect, and I haven't read your book, but where does periodic monitoring of fibrosis fit into your treatment regimen, on both a personal and general advice level? I ask, because both normalized liver enzymes, and even lowered viremia are not necessarily associated with low liver damage. In fact, you can have both and have significant liver damage.

When I discussed alternative approaches with my liver specialist, he said the biggest  problem with many of these approaches is that the people following them do not monitor their fibrosis with enough dilligence, i.e. periodic biopsy. And without periodic biopsy -- or perhaps the very new (still in trial) Fibroscan -- there is really no way to know what is happening in this critical area, as Fibrosis cannot be picked up easily via blood tests or even ultrasound.

-- Jim

[magicmatt]

Thank you for your welcome.and concern for my wellbeing..me I have successfully normalised my liver function and achieved a good standard of health using some of the resources I presented in the book, particularly chinese herbal medicine, qigong, a few food supplements and exercise; my research suggests that around 80% of patients could achieve similar results providing progression co-factors are removed. ; around 20% would need to consider the chemo option as a rational option (though the emotive response is just to get rid of HCV).

Which brings me back to Alinia. Given that it is being tested because it has proven to be effective in achieving VR in some patients on its own without chemo and that its side effects are mild, it is rational for patients in my kind of position to give it a whirl.

I am deliberately using light hearted language because I think that this is the appropriate level of response to the scale of the threat in a large group of patients. The desperate, kill or cure, endure the chemo, damn the consequences attitude is appropriate only for patients on a head on collision course with end stage liver disease, a relatively small group over a long period of time. And some of the consequences of the chemo are very nearly always long term and intractable.

So when I 'give Alinia a whirl' I am not doing so with a kind of desperate emotionally hyped up attitude, rather I am just lightly trying it to see if it works, with the additional bonus that I probably picked up a load of parasites during my global traveling, and these at least will be given a hard time! In other words I consider it a proportional response as monotherapy, and,  if it works in say 30% of patients with geno 3 for example, I would recommend it as the first line of antiviral action, simply because the risks are low compared the rewards. And it is a fraction of the financial cost too!

As for resistance I don't know. The mode of antiviral action is tentatively thought to be: 'nitazoxanide and its circulating metabolite, tizoxanide, suppress replication of hepatitis B and C viruses in cell culture at low (nanomolar to low micromolar) concentrations'. I'd be grateful if an academic could explain whether this mechanism is subject to the same escape mechanisms as the protease inhibitors.
.
Now I am going to drink some Puerrh red tea and drive to London for a qigong weekend, where part of the instructions are 'Don't attach to your Problems!'

[Willy50]

First, great to see you post here Matt.  I also have the book.  I am a watch and wait person for now.  I also respect the severity of current treatment and so something like alinia is of great interest to me.

The interest for me is whether Alinia will work synergistically with either SOC or with a protease inhibitor (particularly on geno 1's).  If so, what kind of increase might we see?

Second, the use of alinia came out of the blue for many people following HCV treatments.  The exact way it works is not yet fully understood.  I think that may also be said for the scope of the resistance issue.  I would like to think that the compound may work in a different manner than the PI's and therefore may not bring the same resistance issues as the PI's.  

It would seem to me that since the virus exists on the threshold of our ability to treat it successfully (50-60% fail rate for geno 1's) that any treatment which adds either a shorter term, exposure to IFN/RBV, and brings a higher SVR rate is to be welcomed to the fold.  We may soon start seeing some results (or lack or results) from some people that decide to try their own treatments with the compound, either as monotherapy or coupled with SOC.

I'm sure that neither Vertex and Scherring are not delighted at another potential competitor but at some point if Alinia works with SOC we may see it coupled with a PI.  Lots of interesting things coming.

Matt, I'll echo; good to see you post.  It maybe a subject for another thread but how are you doing?

best,
Willy

[3txsofar]

I was struck by your comment above - "Incidentally geno 4 has usaully been regarded as a 'difficult to treat' geno, though some MDs close to ifn manufacturing companies have been attempting to suggest that it is an 'easy to treat geno' - this is incorrect and suspicious.'

When there was a significant discussion of ALinia a few weeks ago, studies were found that showed SVR with SOC for genotype 4 ranging from 55 to 89%.  A study also showed that the SVR rates among geno 4 patients varied widely by geographic origin, perhaps due to the actual mode of transmission.  This same study showed that Egyptian patients were some of the easiest to treat of Geno 4.  

[mremeet]

Well hello there mr dolan! (assuming you're not an internet fake!) I was diagnosed with HCV way back in '97 and the very first book I bought on the subject was yours. That was a dark time in my life, I was frightened and ignorant and knew nothing of this mysterious disease called "hepatitis C" that I had already been carrying for years and years. Your book was one of the first sources of information that helped me peel away the layers of mystery and chart a course for my own healthcare...and eventual cure (just got my 6 wk post tx PCR back and it's UND!!). Anyway, it's really good to see such an experienced HCV writer and author stop by and weigh in. Hopefully this won't be your only visit with us.

I like what you're saying about alinia, and I agree with nearly everything you've said. The only thing I might take issue with is the concept of using alinia as a monotherapy in early trials. You said:

"...Alinia fits the bill as being worth a try as a monotherapy for a very large group of HCV patients..."

Since I haven't seen any testing results with alinia as a monotherapy (heard a few anecdotal reports about it though) I don’t know if using alinia as a monotherapy may help to develop alinia resistant strains over time. I know it doesn't work like a protease inhibitor where this is a very serious concern, but alinia may turn out to eventually give rise to some form of resistance when used solely by itself as well. In my opinion I think the first clinical trials should be conducted using both IFN and ribavirin (SOC), with durations of 24 and 48 weeks for starters. And *maybe* have a small cohort that goes without riba, but even that I'm not so sure about. After these results are in, if the outcome of the trials dictate monotherapy and/or riba-less/IFN-less treatment and/or significantly truncated treatment durations (i.e. sub 24 weeks), the I could see conducting those trials.

The reason I say this is because we've clearly seen the immunological fallout that has occurred for several people here during the Telaprevir prove 2 and 3 trials, where substantial numbers of patients were dosed with Telaprevir and IFN only (even when a reasonable body of data was available at the time to suggest the ribaless treatment was ineffective). Every single ribaless participant that I've seen here eventually failed their treatment. As effective as TVR and IFN are for awhile, the ribavirin is still *essential*. And the people who were in these "ribaless" groups are now stuck with TVR resistant strains (along with normal post tx IFN fallout) and some with very significant liver fibrosis (even cirrhosis). What this means for these people is that one of the most effective anti-HCV treatment adjuncts to come along in nearly 10 years has essentially been taken off the shelf for them as a result of their failed treatments. And in the case of someone with cirrhosis or advanced fibrosis where time is of the essence, this is more than merely unfortunate.

So again, in my opinion a clinical trial using another new antiviral (like alinia in this case) should start conservatively by building upon what is already used and known to work (and not very well for geno 1). And this ties into the "do no harm" philosophy you wisely referenced above. I think we should learn how to walk before we run with any new antiviral that comes out, the wellbeing and long term consequences for patients enrolled in these trials should be more heavily considered than I've seen them considered in the TVR trial (for instance). By starting out testing alinia with IFN and riba (as achieved in the Egyptian geno 4 trial), we will first see what the maximum viral response and SVR rate will be with all three drugs in play. Viral kinetics can also be observed during the trials as the inevitable IFN and ribavirin dose decreases/cessations occur in some patients as a consequence of their various side effects (giving at least some insight into the contribution of each drug as used in this unique trio). Plus if there are people who have existing intolerances to IFN or ribavirin and these patients are willing to take an informed risk by trying alinia either by itself or with only IFN or ribavirin (not sure if ribavirin alone would contribute much to alinia's effectiveness though), than that could also be a way of more ethically collecting data on alinia dosing outside of the more conservative SOC + alinia regimen. For instance, I know of a TVR trial participant that was put into a group that received TVR + IFN + Riba and she developed an awful riba-rash within just a few days of starting. The ribavirin was quickly discontinued and she carried on with only IFN and TVR. She eventually failed treatment like all the other ribaless participants, but for someone like that there really wasn't much choice in the matter.

I guess my point is that I just think the testing of alinia should be done in a manner that gives everyone the best possible chance of being cured, and it shouldn’t knowingly consume these patient’s shot at a cure with these rare and “once in a ten year” antivirals. Once the SOC + alinia track record/data base has been established, then patients considering treatment with alinia either as a monotherapy or with only one of the other two drugs can make a more informed decision about what their chances of being cured are. And by that time there will probably be a reasonable idea if (1) alinia treatment as a monotherapy is likely to be effective at curing HCV and (2) whether some form of alinia resistant viral strains arise as a consequence of monotherapy or with IFN dosing alone as it did in the TVR trial.

Good to see you, and thanks for helping me through my toughest of times, a decade ago now.