- This topic has 45 replies, 21 voices, and was last updated 8 years, 7 months ago by
.
-
Jeff thankyou for agreeing that Interferon did more harm than good it caused so many cell changes in me and many other serious sustained injuries such as audiometrically assessed higher pitch severe hearing loss, kidney damage including stones requiring surgery etc
I’m hearing you on this.
I was perfectly well before some fool put me on interferon. VL 420,000 no other tests done, I had no knowledge anyway of anything and got screwed. I’m F0 btw. They didn’t even check until after.
Thanks Mike for the conference updates
I only hope they NEVER use peginf on ANYONE ever again
These new meds are easy
Plus they actually work.
Ariel, who is awaiting her 4 weeks post EOT bloods
Hi Jeff,
Thanks for highlighting Ronald Koretz’ article. I had previously dismissed it based on the blurb and first few seconds of the video but your comments made me return to it. He is obviously an outlier of the HCV field in many ways but that is not necessarily a bad thing if it encourages others to review their positions and actions.
Personally I disagree with what appears to be his main contention; that because there is not a complete alleviation of all progression of liver disease in all patients after SVR then it is not a cure. I get his argument that Interferon+/-Ribavirin was not always beneficial and has ongoing problems for many patients (hah, I’m a walking argument for that proposition) but I believe that was well known but certainly not universally acknowledged in the Hepatology community for a long time. Interferon was always seen as less than benign in other fields were it was used too but was usually the only option available at the time. However, for him to extraplolate that to the current use of DAAs is a big leap based on the evidence so far. I think that while it is early days for DAA treatment, the benefits we are seeing accrue for the many outweight the possibility that for a few the outcome won’t change. As he would ask of others, where is his evidence to support his current position? Having said that I do agree with his points about evidence based medicine rather than just marketing driven and that does mean long term follow ups. That is how we learn and progress science/medicine.
In the meantime I agree with your three points of benefit, though I suspect you understate the first. The evidence seems to be building that while it doesn’t completely remove the risks there is a significant risk reduction there. The third point is the real winner though!
Edit: beachs, good point about his hymn sheet.
As I said, a review of his history shows him to be an outlier though I didn’t find much about his drivers. Hopefully an enquiring mind but???
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Some of us take longer Hazel, but I didn’t have to go through Interferon – Thanks to Greg J, Dr F & MonkMed.
So glad to see your UND there on your profile
Still waiting for mine, (delays at lab this week – annoyingly!). UK medics consider my <12 'job done' - We shall see.
My very best wishes to you.
Stay well.
lg(edit) Dear Tim, I am not surprised you & Dr Debasis are so busy You both take such an interest in your patients and speak at length with every one of us who have concerns. I want to write a BIG public thank-you to you both
pps : Here's the official Redemption Trials link again for anyone Tweeting in support of Dr Freeman today #ILC2016 :
https://www.clinicaltrials.gov/ct2/show/NCT02657694?term=redemption&rank=1
mgalbrai, thanks for sharing links.
If i correctly understand, the problem, mentioned by Dr. Koretz, is that hcv treatment, from point of view of “evidence-based medicine”, really, is a bit experimental treatment, like clinical trials… SVR is “unvalidated surrogate” and we cannot exclude that, in future, for example, new much more sensitive tests may be developed and all people with SVR may become “HCV-carriers”, detected by those very sensitive tests…
There is another text about similar issues – http://www.openhealthnews.com/story/2015-01-18/lack-good-medical-evidence-new-100000-hepatitis-c-drug-treatments
-The best evidence available suggests that most patients with hepatitis C will not go on to have severe complications of the disease (cirrhosis, liver failure, liver cancer), and hence could not benefit much from treatment.
-There is no evidence from randomized controlled trials that treatment prevents most of these severe complications
-There is no clear evidence that “sustained virologic response,” (SVR), the surrogate outcome measure promoted by the pharmaceutical industry, means cure.
-While the new drugs are advertised as having fewer adverse effects than older drugs, it is not clear that their benefits, whatever they may be, outweigh their harms.
if these drugs have not been shown to do more good than harm, and the lack of evidence is clearly the responsibility of the drugs’ manufacturers who chose not to do very large and/or long-term randomized controlled trials and not to assess clinical outcomes, what justification is there for the gargantuan prices of these drugs?
Possibly, it may have some consequences… For example, if we will make a strategy “to treat everyone hcv-infected as soon as possible” – what does it mean in terms of “evidence-based medicine”? Does it mean “to involve everyone of hcv-infected in a some sort of large uncontrolled “clinical trial”?
P.S. About tolerability of treatment – i know one guy, who tolerated high doses of interferon without significant problems, but, surprisingly, he did not tolerated several months of sofosbuvir.
He achieved SVR after discontinuation of sofosbuvir.
Hi LondonGirl, yes, i agree.
He used such schema:
1-7 weeks – sof+dac
8-9 weeks – sof+dac+simeprevir
10-24 weeks – dac+simeprevir+ribavirin
Hi Serg,
Well yes, apparently Roy M. Poses MD has those beliefs. Again I’m unable to find any evidence provided by him to back them up. Maybe a cautionary canary in the mine? Possibly but there don’t appear to be large numbers of other medical professionals taking a lot of notice of his song.
The best evidence available suggests that most patients with hepatitis C will not go on to have severe complications of the disease (cirrhosis, liver failure, liver cancer), and hence could not benefit much from treatment.
Hmm, so most patients who don’t have the three HCV related complications he mentions will get no benefit from treatment because their complications aren’t severe enough? Maybe he has “evidence based medicine” that shows that F3 patients lead a perfectly normal, active, healthy life with no ill effects? Perhaps he has been provided with enough “evidence based medicine” to prove to his satisfaction that no extrahepatitic manifestations of any kind occur?
For the rest of his arguments all I can do is thank him and tell him I will take his caution under advisement. No doubt I and most of the rest of the world will get on with the great experiment of living. By doing so and taking what appears to be the best option available currently we will gradually build up the “large scale trial evidence” he apparently requires before he makes decisions. Of course this may take a few decades but personally I don’t have time to wait.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
- You must be logged in to reply to this topic.