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Post Interferon Long Term Side Effects on other sites
Here is a site that I stumbled across today while Googling long term interferon after effects. I also found several other sites as well, also 'chocked' full of people detailing their horrible experiences after using interferon. This sure supports what many of us have been saying and experiencing!! It is quite disturbing to read additional accounts, some even worse than the experiences documented here on our forum. Here is the link: (you will have to copy and paste)
http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10
I will bet that sometime soon we will be hearing about these issues in the media. The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!! I just don't think we were really warned of these kinds of long term outcomes. I know I wasn't.
DoubleDose
http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10
I will bet that sometime soon we will be hearing about these issues in the media. The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!! I just don't think we were really warned of these kinds of long term outcomes. I know I wasn't.
DoubleDose
DD you would have to do a lot of exploring and reading to find out and most people just trust their doctors who are busy and easily forget that their patients don't know what they know and, even if they did, they are scared and don't listen or store information the way that people who are not scared do.
Lloyd Wright I think his name is has a site on this subject. He is perhaps a bit of an eccentric. He has been around for decades and was one of the first if not the first to try to bring HepC to the forefront. His one book I got back in the day was mostly impressionistic and not scientific and he is a natural healing guy which has its definite down side but his heart is in the right place and he has been very passionate about the subject of HepC. Unfortunately, I believe, he is a bit too extreme and outdated on the side of self and natural healing. But that is beside the point. There are a lot of anecdotes about ifn at his web site. I don't think anyone needs to go there though. This site has plenty of horror stories that are published everyday.
And let us not forget. For those people who cannot wait for more benign treatments (and I am not talking about the worried well), who are severely fibrotic or cirrhotic; it may be counter-productive to harp on this aspect of triple treatment too much. For these people, support and positive strokes and words to quiet anxiety can be far more helpful for treatment and peace of mind.
Lastly, I ask you, what do you recommend? Don't we have to do more than demonize interferon? . . . like support and advocate for more benign treatments, join trials to try to bring them into the marketplace, advocate with our doctors who, in turn, can speak on our behalf with drug reps, researchers, chemists etc. to never, never, never quit on trying to change the way things are now?
Lloyd Wright I think his name is has a site on this subject. He is perhaps a bit of an eccentric. He has been around for decades and was one of the first if not the first to try to bring HepC to the forefront. His one book I got back in the day was mostly impressionistic and not scientific and he is a natural healing guy which has its definite down side but his heart is in the right place and he has been very passionate about the subject of HepC. Unfortunately, I believe, he is a bit too extreme and outdated on the side of self and natural healing. But that is beside the point. There are a lot of anecdotes about ifn at his web site. I don't think anyone needs to go there though. This site has plenty of horror stories that are published everyday.
And let us not forget. For those people who cannot wait for more benign treatments (and I am not talking about the worried well), who are severely fibrotic or cirrhotic; it may be counter-productive to harp on this aspect of triple treatment too much. For these people, support and positive strokes and words to quiet anxiety can be far more helpful for treatment and peace of mind.
Lastly, I ask you, what do you recommend? Don't we have to do more than demonize interferon? . . . like support and advocate for more benign treatments, join trials to try to bring them into the marketplace, advocate with our doctors who, in turn, can speak on our behalf with drug reps, researchers, chemists etc. to never, never, never quit on trying to change the way things are now?
Anybody can do a search and find horror stories about interferon.
The reality is its a crap shoot.
Some people have horrible side effects, others have almost nil.
I think a positive attitude is better than being fearful from the start.
Newer better meds are being tested. Hopefully interferon treatment will become obsolete.
In the meantime, when the choice is facing possible liver transplantation
( in my case a second one) or death, I'll take my chances with interferon.
And, I think more people post complaints.
Few people come on a forum to say, 'life is grand, no side effects, no problems.'
The reality is its a crap shoot.
Some people have horrible side effects, others have almost nil.
I think a positive attitude is better than being fearful from the start.
Newer better meds are being tested. Hopefully interferon treatment will become obsolete.
In the meantime, when the choice is facing possible liver transplantation
( in my case a second one) or death, I'll take my chances with interferon.
And, I think more people post complaints.
Few people come on a forum to say, 'life is grand, no side effects, no problems.'
1 Comments
A positive attitude????!!! This treatment has ruined my health and now I have no alternative treatment to help me. I will die from the end result of this horrific treatment.
I think a positive attitude is better than being fearful from the start. "
Amen sista preach it to the choir! (And get that SVR now please I'm tired of waiting to put the red shoes back on ;)
Amen sista preach it to the choir! (And get that SVR now please I'm tired of waiting to put the red shoes back on ;)
Lloyd Wrong's "heart is in the right place" only if you think a wallet is a good place to store your heart. Since he has studied HCV so intensely you would think that his misinformation would have to be deliberate.
Ha, well maybe so. I haven't followed his adventures. I didn't find the book I got back in the nineties very helpful and was suspicious of the remedies and milk thistle although have to admit I did fall for some of the hype for awhile ;)
why are we not seeing more class action lawsuits involving interferon? all a lawyer has to do is sign up two interferon victims and it's gravy train time. if there are in fact thousands suffering from post-interferon side effects.
i am sorry that there are those that suffer from post-interferon side effects, and i hope i do not become one of them. but what choice do i have with cirrhosis, portal hypertension and varices?
blessings
eric
i am sorry that there are those that suffer from post-interferon side effects, and i hope i do not become one of them. but what choice do i have with cirrhosis, portal hypertension and varices?
blessings
eric
I'm sure all the folks who have to suffer through radiation didn't like it very much either but presented with little other choice than stage 4 cancer they manned up and did what they had to.
Is modern medicine perfect, hell no but it's getting better and better for us heppers every day. For those of us who remember having NO option than to treat longer, double dose the meds and just pray as hard as we can - well I think some of us have more long term effects than the normal joe does today who only treats for 24 weeks.
It's getting there and maybe someday interferon will be gone but let's see what long term effects the newer meds might have too. Faced with the tough choices you gotta do what you gotta do.
Lloyd ew haven't seen his name stinking up the place in a long long time. Now THAT is progress :D
Is modern medicine perfect, hell no but it's getting better and better for us heppers every day. For those of us who remember having NO option than to treat longer, double dose the meds and just pray as hard as we can - well I think some of us have more long term effects than the normal joe does today who only treats for 24 weeks.
It's getting there and maybe someday interferon will be gone but let's see what long term effects the newer meds might have too. Faced with the tough choices you gotta do what you gotta do.
Lloyd ew haven't seen his name stinking up the place in a long long time. Now THAT is progress :D
DD, I don't doubt for one second that some experience very negative effects of exposure to interferon and my sympathies to those having a difficult time with them. However, from May 2004 to current (7.5 yrs), only 13 people responded on this website to indicate their problems. Considering the number of people that undergo trt each year, a 2/year average demonstrates to me how small this "affected group" could be.
Additionally, the symptoms described are so generic that a direct effect from interferon is very difficult to conclude considering how many other diseases could display the same symptoms. Again, I'm not second guessing these claims, but how do you draw any conclusions from anecdotal information like this? This information presented actually helps to support that there are fewer afftected than I had originally thought. Obviously, this website isn't a scientific way to measure anything, but considering the sample size, the numbers don't support the large volume that you claim in your post.
Additionally, the symptoms described are so generic that a direct effect from interferon is very difficult to conclude considering how many other diseases could display the same symptoms. Again, I'm not second guessing these claims, but how do you draw any conclusions from anecdotal information like this? This information presented actually helps to support that there are fewer afftected than I had originally thought. Obviously, this website isn't a scientific way to measure anything, but considering the sample size, the numbers don't support the large volume that you claim in your post.
Lloyd Wrong's "heart is in the right place" only if you think a wallet is a good place to store your heart.
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Will
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Will
Just as we have moved beyond Lloyd who was all there was in the early nineties or nearly so, someday we will move beyond interferon ;)
Obviously, this website isn't a scientific way to measure anything"
Hey what cho talkin bout Willis, we sure think we are ;)
Hey what cho talkin bout Willis, we sure think we are ;)
No one with any degree of serious intellectual curiosity followed or believed in Lloyd Wright or held him in high esteem. He has always been a charlatan and a thief of the worst sort.
Comparing him to interferon is a joke - a very bad analogy, if you will.
Mike
Comparing him to interferon is a joke - a very bad analogy, if you will.
Mike
I don't think Lloyd has ever left someone impaired the way that interferon has . . . over and over.
nah but his bad holistic medicine probably left people open to end stage liver diease quite frequently so in the end which is worse? I'll take the sides over that any day at all! :)
"nah but his bad holistic medicine probably left people open to end stage liver diease quite frequently so in the end which is worse? I'll take the sides over that any day at all! :) ."
You got that right, scary to think about how many people might have died thanks to that quack...........
You got that right, scary to think about how many people might have died thanks to that quack...........
Interferon has worked for many regardless of your personal opinion of the drug.
I had a liver transplant as a result of HCV in June 2000 so I know how badly the virus can harm us. I treated 3 times and cleared the third time after a 73 week treatment. That was in 2004 and I really couldn't afford to wait. 20% HCV of transplants are cirrhotic within 5 years of their surgery. So interferon/ribavirin saved me and here I am to tell you that I cleared with that dreaded drug you are so quick to condemn. You really should step back and get a broader perspective.
By the way, I knew about Pharmasset way back and liked it. I even bought the stock and made money. I also made money on Vertex. I'm not that smart but I do watch this subject carefully.
Wright - nothing but a pretender and a scam artist and that's nothing remotely like interferon.
Mike
I had a liver transplant as a result of HCV in June 2000 so I know how badly the virus can harm us. I treated 3 times and cleared the third time after a 73 week treatment. That was in 2004 and I really couldn't afford to wait. 20% HCV of transplants are cirrhotic within 5 years of their surgery. So interferon/ribavirin saved me and here I am to tell you that I cleared with that dreaded drug you are so quick to condemn. You really should step back and get a broader perspective.
By the way, I knew about Pharmasset way back and liked it. I even bought the stock and made money. I also made money on Vertex. I'm not that smart but I do watch this subject carefully.
Wright - nothing but a pretender and a scam artist and that's nothing remotely like interferon.
Mike
"Hey what cho talkin bout Willis, we sure think we are ;)"
nygirl, don't send your fellow zombies after me yet, I was referring to the lawyersandsettlement forum, not MH. I realize each and every MH post is peer reviewed prior to publishing, then randomly deleted at a later date ;o)
nygirl, don't send your fellow zombies after me yet, I was referring to the lawyersandsettlement forum, not MH. I realize each and every MH post is peer reviewed prior to publishing, then randomly deleted at a later date ;o)
There are some people on here that can't do interferon. Either because they're among the few that have such extreme adverse reactions that they can't risk it again OR treatment has been unsuccessful and their liver damage has advanced to the point where it's no longer safe. Those people have spent a huge amount of time researching alternative options and sharing those with other people on this forum and amongst each other in a bid to preserve their health as best they can.
Not ONE of those people, not ONE....endorses Lloyd Wright or uses his products. Not one. That speaks volumes and volumes to me.
Not ONE of those people, not ONE....endorses Lloyd Wright or uses his products. Not one. That speaks volumes and volumes to me.
Don't we have to do more than demonize interferon? . . . like support and advocate for more benign treatments, join trials to try to bring them into the marketplace
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You are doing your part. You have donated your body for a drug experiment as many thousands have done before you and many will do in the future. Pharma .never has any lack of subjects and given their motivation of profit they will no doubt come up with something else in the future.
However ,in the meantime ,the drug that is saving many lives today is INF. and thankfully so.
Wright is a profiteer ,who has left many broke with dashed hopes.who IMO is not really worthy of much discussion here.
Will
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You are doing your part. You have donated your body for a drug experiment as many thousands have done before you and many will do in the future. Pharma .never has any lack of subjects and given their motivation of profit they will no doubt come up with something else in the future.
However ,in the meantime ,the drug that is saving many lives today is INF. and thankfully so.
Wright is a profiteer ,who has left many broke with dashed hopes.who IMO is not really worthy of much discussion here.
Will
I will also be quick to denounce quacks, and frauds as complete con artists and scammers who prey on vulnerable people. And I indeed did not mean to cause a 'firestorm' in linking another site with people who have had long term after effects. My point is, that there are indeed others out there who have had these same problems, not just the ones we have heard from on this forum. I have always said that the tx is the only way to go in order to get rid of this virus, and I still feel that way.
That said, there is still another side to the story...and that is exactly that a good sized group of people who have treated have sustained injury and developed problems that may be permanent and life altering....while being assured by almost the entire medical and pharmaceutical community that after finishing tx, the side effects would fade away in a month or two...possibly even up to a year. Nobody was being told that a significant group might be entirely disabled, or severely affected for life by successfully completing the treatment. I would venture to say that probably most if not all people treating with the SOC understood and believed that becoming SVR would not only get rid of the virus, but that they would also feel better...or at least no WORSE.
So my point is that the medical community better soon start addressing the group that have been adversely impacted by the tx, and had little or no warning of what to expect. I think the numbers out there are probably large enough to call them a "significant group". And remember the international survey that was done a few years back. The number of people feeling worse after tx, and SVR was OVER 50%. Now THAT was a forboding statistic if there ever was one.
Have any of us been asked by either their doctor's, or the drug company that manufactured their tx drugs to respond to any surveys regarding their post tx experiences??? How many of us have gotten this request??? Again....who out there??? Anyone at all???
So...just HOW can they say anything about what we will experience after tx?? I am very curious. Indeed.
DoubleDose
That said, there is still another side to the story...and that is exactly that a good sized group of people who have treated have sustained injury and developed problems that may be permanent and life altering....while being assured by almost the entire medical and pharmaceutical community that after finishing tx, the side effects would fade away in a month or two...possibly even up to a year. Nobody was being told that a significant group might be entirely disabled, or severely affected for life by successfully completing the treatment. I would venture to say that probably most if not all people treating with the SOC understood and believed that becoming SVR would not only get rid of the virus, but that they would also feel better...or at least no WORSE.
So my point is that the medical community better soon start addressing the group that have been adversely impacted by the tx, and had little or no warning of what to expect. I think the numbers out there are probably large enough to call them a "significant group". And remember the international survey that was done a few years back. The number of people feeling worse after tx, and SVR was OVER 50%. Now THAT was a forboding statistic if there ever was one.
Have any of us been asked by either their doctor's, or the drug company that manufactured their tx drugs to respond to any surveys regarding their post tx experiences??? How many of us have gotten this request??? Again....who out there??? Anyone at all???
So...just HOW can they say anything about what we will experience after tx?? I am very curious. Indeed.
DoubleDose
DD, you make some very good points and your message is important. It will be interesting to see if there is any follow-up given post trt by either the doctor of the specialty pharmacy. Thank you for your input.
From Melvil's "Long term side effects of interferon" post (currently standing at 2.5 years and 449 posts)
AKA 'The Thread That Wouln't Die'
AKA 'A lot of people seem to have an emotional attachment to:
a) Interferon is the devil
or
b) Any and all side effects are preferable to cirrhosis and HCC'
"desrt
Mar 30, 2011 ..Still believe CoEnzymeQ10 and CerefolinNAC can improve QOL post-tx. Try it for a couple years and re-post to this thread with what you think.
..tashka
Mar 30, 2011 .To: desrt.Yes, both substances that you mentioned are very good for the brain. CerefolinNAC is used for Alzheimers, and patients/families report good results. But CerefolinNAC is very expensive.
..desrt
Mar 30, 2011 .To: tashka.They're not exactly giving the CoQ10 away either.
And you need a 'script for the Cerefolin. .
.DoubleDose
Mar 31, 2011 .To: everyone.We need real studies...not random drug suggestions to deal with the post-tx problems....."
I'm in complete agreement with you on that one. Also hugely in favor of 'World Peace' but I don't see that one happening any time soon either.
I've resisted starting a Health Page devoted to 'What have you done post-tx to improve your QOL" partly because I'm terminally lazy and partly because any page like that would soon be chock full of MesoSilver and people nuttier than me.
I don't think there's enough $ to be made figuring out how to help post-IFN tx patients for it to happen any time soon. We're going to have to help ourselves and each other.
Soap box dismount.
AKA 'The Thread That Wouln't Die'
AKA 'A lot of people seem to have an emotional attachment to:
a) Interferon is the devil
or
b) Any and all side effects are preferable to cirrhosis and HCC'
"desrt
Mar 30, 2011 ..Still believe CoEnzymeQ10 and CerefolinNAC can improve QOL post-tx. Try it for a couple years and re-post to this thread with what you think.
..tashka
Mar 30, 2011 .To: desrt.Yes, both substances that you mentioned are very good for the brain. CerefolinNAC is used for Alzheimers, and patients/families report good results. But CerefolinNAC is very expensive.
..desrt
Mar 30, 2011 .To: tashka.They're not exactly giving the CoQ10 away either.
And you need a 'script for the Cerefolin. .
.DoubleDose
Mar 31, 2011 .To: everyone.We need real studies...not random drug suggestions to deal with the post-tx problems....."
I'm in complete agreement with you on that one. Also hugely in favor of 'World Peace' but I don't see that one happening any time soon either.
I've resisted starting a Health Page devoted to 'What have you done post-tx to improve your QOL" partly because I'm terminally lazy and partly because any page like that would soon be chock full of MesoSilver and people nuttier than me.
I don't think there's enough $ to be made figuring out how to help post-IFN tx patients for it to happen any time soon. We're going to have to help ourselves and each other.
Soap box dismount.
You are doing your part. You have donated your body for a drug experiment as many thousands have done before you and many will do in the future. Pharma .never has any lack of subjects and given their motivation of profit they will no doubt come up with something else in the future.
*****
I don't view it as a donation. I felt and still feel the odds are much better with this particular trial than with anything else I looked into. The site and the PI has turned down a lot of the other trials for various reasons. Not sure if you mean Pharma as in Pharmasset or Pharma as in Big Pharma. Of course Roche is in it for money too. That is capitalism. There is a down side and an up side.
Never said interferon has not saved lives. It is used for other diseases and conditions too. However, it is getting to the point that, for this particular infection, its time may be reaching an end. Not yet maybe. But pretty darn close we are, uh huh.
*****
I don't view it as a donation. I felt and still feel the odds are much better with this particular trial than with anything else I looked into. The site and the PI has turned down a lot of the other trials for various reasons. Not sure if you mean Pharma as in Pharmasset or Pharma as in Big Pharma. Of course Roche is in it for money too. That is capitalism. There is a down side and an up side.
Never said interferon has not saved lives. It is used for other diseases and conditions too. However, it is getting to the point that, for this particular infection, its time may be reaching an end. Not yet maybe. But pretty darn close we are, uh huh.
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