I resurrected this old thread because of an Ebola-related article I read today:
http://www.foxnews.com/health/2014/11/14/patient-cured-ebola-in-germany-treated-with-bio-filtration-device/
Hmmm....
"Having the interferon in the body for 6 months less makes a big difference in permanent damage".
I cannot recall ever seeing a statement like so I didn't expect to see any support for it.
By the way, the fact that "it stands to reason" is not at all convincing. This disease and its treatment have a lot of "unreasonable" features.
Mike
Thank you. I am one of these "dreading" people. What you are saying makes sense.
Because big pharmas would make a fortune if they could achieve SVR without interferon. The PIs are touting the fact that they shorten interferon exposure because people dread using it and many refuse to take interferon.
Look at the site:
http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs_2009.pdf for a list of HCV drugs
Mike
Why do you think that BigPharma's goal is to develop interferon-free treatment? They make a lot of money on interferon. If interferon will not be used, companies will lose their revenue. Don't you think? It is more advantageous to them to keep using interferon and add something else to therapy (Telaprevir, Boceprevir etc).
I say this not to disagree with you. I just don't have much knowledge on this particular subject. I would like to know your thoughts on this.
That some folks are so close minded or even get angry about discussing subjects like the possibility that the Hemopurifier "
By the way nobody gets angry, we just hate to see people so desperate that they'd waste money on something that is not proven to do anything to help and with this particular device there is just no proof that it does anything at all. All the documentation that I could personally find was their press release saying what a miracle tool it will be someday and that it's not 'dangerous'. That is questionable to me however because while someone plays around trying to "lower their viral load" they could be developing more and more liver damage - until they wait themselves right into cirrhosis which is pretty stupid if you know you have the disease and there are treatments that while not fun, work.
Hopefully someday they will not include interferon but for right now it is the only thing that works.
MAYBE YOU COULD FIND SOMETHING OF VALUE THE WAY NYGIRL SUGGESTED "
Glad as usual that we could be of so much help to a newbie. Anytime!
"Of course it will be the SOC Tx until they allow others potential Tx to try to prove themselves . Until that time comes , I am very happy there are other countries willing to at least try to open the doors to other regime's."
Allow? There are a whole lot of new drugs in development.
See: http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs_2009.pdf for a list of HCV drugs in development.
The real goal of "big Pharmas" is to develop an HCV treatment that does NOT include interferon. But, for now it's an unfortunate but necessary ingredient to achieve SVR.
Mike
If somehow I opened the preverbal " can of worms " from posting my questions on virus filtration devices , then , I want to say, I'm sorry, I had no idea that folks could have reactions that are so heated......
We are all here to learn, share ideas , access and evaluate the responses. We are all in one way or another in this together. Try not to forget that.
Stress in itself is a killer ,there is no "medicine" to "cure" stress. Somehow, we as individuals have to find some resemblance of peace in our minds.
As Emily ( moderator ) said, "Please remember the Terms of Use. It is never ok to insult anyone, and that is why some posts are being deleted. Keep it civil, and it's all good."
To : NYgirl: I just went through a extended period of time helping and watching my father deteriorate until he was no longer strong enough to recover. He finally passed a year ago this month, in fact the 14th. Dec. ANY long term life taking illness is not a way to go or one I would wish on anyone. His lifestyle was very clean & he lived a full life, but the last 2-3 years were extremely, extremely difficult. No one wants to watch, or worse yet experience this kind of slow death as a result of ANY illness.
I wonder how there would ever be any advances in medicines for us infected if the FDA is so close minded that they restrict clinical trials to Interferon based therapy's ?
Of course it will be the SOC Tx until they allow others potential Tx to try to prove themselves . Until that time comes , I am very happy there are other countries willing to at least try to open the doors to other regime's. Our FDA or big pharm sure won't.
IFN is a nasty drug , Which is worse ? We are all different and no 2 people react the same..... to the disease or to the medications to "cure" it.
That some folks are so close minded or even get angry about discussing subjects like the possibility that the Hemopurifier or some other device or medication may come along to help all of us , or those who do not yet know they are infected , not have to weigh the risk's of lifetime of possible side effects, maybe achieving SRV, in my case less than a 50% chance, or maybe not achieving SRV, myself I just don't get it.
Of course when it comes down to it , I really want, like everyone, want this out of my body. I do try my best top stay on top of testing, monitoring and living a fairly clean lifestyle ,stress reduction is a must, good foods, exercise etc.
I opened the subject of the Hemopurifier, Vrad , with the hopes to find info I did not already have, BTW , to me this was an information gathering tool & like any other information gathering , you take the good with the bad and try to weed through the nonsense..
Folks use all the tools available to your individual situation and make informed decisions.
Since some folks seem to not be able to be civil, or are getting mad about this subject and related posts it's time to put a close to it and move on to something else........
Good luck & good health !
Regards , Aaron
i looked for the study on clinical care and could not find it anymore. I remember dr shiffman making this statement on there about a year ago. When I have more time I will try and find it.
It stands to reason that the less time interferon is in the body the less damage. doesn't take a rocket scientist to figure that out :-)
THANK YOU EMILY_MHModerator
Good morning.
Please remember the Terms of Use. It is never ok to insult anyone, and that is why some posts are being deleted. Keep it civil, and it's all good.
http://www.medhelp.org/termsofuse.htm
Specifically:
Rules for Posting Questions in Forums and Public Areas
6. Posting material that is unlawful, obscene, derogatory, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by MedHelp in its sole discretion.
Everyone agreed to adhere to these when you joined. We have had many abuse reports from this thread for posts on both sides of the arguement. Remember that it's entirely possible to disagree without getting insulting.
Thanks,
Emily
and thats a hep C fact: Viral Load is important-MUCH. People with a high Viral Load SVR 40% apprx., people with low Viral load SVR 56% apprx.. Hit the search and get that fact. Just keeping it on Hep C.
Just about every single basic piece of information that has been posted on this thread HAS been backed up by studies and links previously. Just hit the search feature and you can come up with them all easily enough. I don't know about other people but I don't personally have time at work to go link searching - however - if several old time members are telling you that it's a fact, it's a fact that is easily enough verified if you just take the time...even Janis would have this basic information out there.
You wrote: Most of the time to back it up with links and study data: Please do. Thanks
High Viral Load does not mean that you will get sicker more quickly but it may
affect how well the Tx will work.
www.hcvadvocate.org
I saw a friend die this way and it was awful. "
See that perhaps is the difference, those of us who have watched someone who waited too long to treat know just how truly awful end stage liver disease is and for us unproven cures that accomplish nothing have no merit because we know what they can lead to. Once you've gotten to see it, you don't forget quickly.
the importance of Viral quantitation in gauging therapeutic response in Chronic Hepatitis C antiviral therapy."
Falsely manipulating viral loads does not lead to an accurate response value does it? No. Only in quantifying how your body is beating the virus by using the FDA approved medications has been studied and has any merit. That is what we use viral load for.
That is hepc class 101 stuff.
"By the way did you know that the FDA requires INF to be included in U.S. HCV clinical trials ?? "
Yes Aaron that is because it is the only medication proven thus far to be able to train the body to eliminate the virus. No other medication on it's own is doing that. Hopefully some day they will discover one that is easier to tolerate but right now it is the only thing that is proven to cure us.
"Having the interferon in the body for 6 months less makes a big difference in permanent damage."
Do you have a source for that statement? If so, I'd like to see it.
Mike
you may be waiting a long time for a treatment that will cure you without interferon. at least 10 years if ever!
there are new drugs coming out in 2011 and one of them Telaprevir will offer a six month course of treatment for genotype 1's and over 80% cure rate. Having the interferon in the body for 6 months less makes a big difference in permanent damage.
I think the interferon risk outweighs the negatives and worth it for a possible cure. I could not bear the thought of dying a horrible death from liver failure. I saw a friend die this way and it was awful. HCV is a very sneaky disease and has a way of creeping up on you all of a sudden and biting you in the butt !
thanks copyman
it is difficult to have a discussion on this forum because the mods keep deleting my post , i admit one or two were posibly fair to remove , but the last one no way , very dissapointing....especially when you consider it was my post that was pulled apart in the first place..
oh well .....
Hi Bill , I am opposed to the current SOC Tx , as we know, the Tx sometimes takes until 72 months... I have my reasons, personal & fairly well informed and good enough for me at this time.
This virus or it's possible cures have not been researched or pursued aggressively by big pharm etc. outside SOC Tx until the last few years.
On the average in the U.S., doctors can be and are being manipulated by the drug companies , not always true as I said, however this is going on more than the many folks are aware.
I am 1a , unless , and this is for my personal situation ,unless, I could no longer wait due to my routine testing and seeing an advance in the state of the virus's degradation to my system. That procrastination may be a very harmful approach to this viral , or , it may save me up to 1 1/2 years of INF + Riba Tx , and Thanking whatever powers may be, fortunately at this time ,the SOC Tx is not needed on my daily menu... at this time....I will take my chances & await a less poisonous alternative ,if it does not come in the next few years, or my test results , or next biopsy , show it to be needed and there is no choice, I intend to dedicate whatever time is needed to try ,,, at that time. If however there is a breakthrough in the research like , RG7128 , RG7227 ,SPC3649 etc. I will be the first in line .
By the way did you know that the FDA requires INF to be included in U.S. HCV clinical trials ??
Maybe that answer is why only SOC Tx , INF + Riba is effective at this time ...
If you are so inclined check out the following :
http://www.medpagetoday.com/MeetingCoverage/AASLD/16818
To carry this bug , always knowing that conditions can and sometimes do change very quickly, I am curious about ways to reduce Tx exposure time. I , like many have hopes for the future . I would try Tx in a minute if my condition warranted it or there was a less destructive approach available .
In the near future, 2 or 3 years, there seem to be some non INF + Riba combinations, or combo Tx that reduce the Tx period that may , may , give some hope to those of us opposed to trying the full meal deal of INF Tx.
I did not save & have been unable to find the Japanese reference related to their Govt. helping with the payment of using their Vrad device , unfortunately. ... I stay very busy & it's not every day I get to browse the net or research information. It was on one of those days I do get to spend time online .. like the last few days... that I found that report ( not through the manufacturer's website ) , a few days more and I am back to my project and for perhaps 10 days until 2 weeks. No time for browsing ..
I do want to thank you all for your input, information sharing & support ! This is a nasty nasty virus.... any sharing , caring and contributions that may help to inform anyone who visits this website or any other should be appreciated by all those concerned .
nice to meet you. you seem very level headed and glad to have you on MH. hope you stick around because there is a lot of good infomation here if you listen to the right people. you will know it is good information when you see several members agree and post their opinions. Most of the time back it up with study data or links to look into it yourself.
Take care
a waste of my time but just go to the beginning of the thread and see who started nit picking who.- but again, this is off topic, The Hemopurifier is saving lives and looks very promising for those who are in end stage waiting for a liver. It is not a cure for Hep C. It is a Class 111 medical device (one paper said pending another said confirmed) being tested/used in the United States and other countries-fingers too tired from typing to list them all. Have a Heppy evening! Hugs....
Aaron, just curious as to your interest about this. The studies that I’ve read suggest that this COULD be used to reduce the virus before using SOC. I agree. there MAY be potential to cut out a couple weeks of treatment. That has not been proven as of now. The reason that I’m asking about your interest is that you don’t seem to be considering SOC.
As far as that VRAD link goes, I could not find any studies that suggest doing that only has any benefit without SOC. I also could not find any info on the Japanese government paying for this treatment. Are you aware of any evidence beside the link or is this another trick like a doctor is an invited keynote speaker at the NIH?
I believe the HALT C trial showed that lowering the vl with low dose interferon showed no historical difference than the control arm that took nothing. Although, eliminating the virus with low dose interferon does shows some difference.
By the way, I had normal ast and alt until 2004 and vl of 400,000 and I was diagnosed with cirrhosis. From my personal experience, low vl, ast, and alt does not mean low damage.
HALT C study:
http://www.hivandhepatitis.com/2007icr/aasld/docs/111607_a.html