Aa
Post treatment side effects site
Hello, I was wondering if perhaps a post treatment site might me good for people who have treated their HCV but need help. It seems that when someone posts about it on the HCV Forum, some people get upset that the OP is scaring newbies and I can see their point. I am looking for information to see if HCV could have caused a deficiency or the tx or even the cirrhosis
I recently found another site that does have a post tx sides on its forum. It is just a thought. I really like this forum and don't see myself leaving anytime soon. I want to try to encourage others as I was encouraged by those that went before me.
Thank you
Dee
I recently found another site that does have a post tx sides on its forum. It is just a thought. I really like this forum and don't see myself leaving anytime soon. I want to try to encourage others as I was encouraged by those that went before me.
Thank you
Dee
Well, this thread is now closed. We should have final word about the group tomorrow, and in the meantime, this has gone way off topic. This thread wasn't ever about treating vs not treating, but about a new forum for issues post treatment.
Now it's settled. ;)
Emily
************** CLOSED THREAD ***************
NO MORE POSTS, PLEASE
Now it's settled. ;)
Emily
************** CLOSED THREAD ***************
NO MORE POSTS, PLEASE
"If anyone else would like to show support, that's fine, but no need to go into anymore lengthy discussions about it.
Thanks!
Em "
--------------------------------------------------
And here I thought it was settled.:)
Thanks!
Em "
--------------------------------------------------
And here I thought it was settled.:)
Cando man wrote;
"....and not one thread about those of us that do not have any post problems....... So what would a new person think when they come here and see all these headlines?"
========================
A separate forum is a good place to keep such treads about of sight of people treating with those same drugs. : )
Although in one of her most recent posts, Pooh wrote;
"So, while a new post treatment health issues THREAD will definitely benefit people who have post treatment issues....."
======================
I think the idea is a whole separate FORUM, not a thread, since it has been proven over and over that posting in the same forum has been, problematic in the past, and I'll note, even in THIS very thread.
Hey.....I will also disagree with the notion that all must treat as soon as possible.
I disagree on a few principles.
FIRST, it is the height of conceit for any of us to presume to suggest to anyone when they should treat. (or not treat)
Most of us are not doctors.
Most of us are not aware of all the medical history of the patients, nor have their medical records.
The only one who should suggest when people should treat is their doctors or medical team.
It seems like even very qualified doctors would refuse to give medical advice over the internet...... and so why should unqualified people do so?
Second...and I have posted it here before;
=================================
http://www.bloomberg.com/news/2013-06-02/drugs-go-from-hit-to-dud-in-two-years-in-hepatitis-race.html
By Simeon Bennett - Jun 3, 2013 8:03 AM CT
"The doctor in the town of Creteil, just outside Paris, is telling hepatitis C patients to delay treatment until later this year, when two new drugs that may boost their chances of defeating the lethal liver infection hit the market.
It’s the same advice he offered two years ago, when earlier medicines developed by Vertex Pharmaceuticals Inc. (VRTX) and Merck & Co. (MRK) were poised for approval."
http://f1000.com/prime/thefaculty/member/4903744522533906
EDUCATION:
Dr Pawlotsky earned his medical degree in Hepatology and Gastroenterology in 1992. In addition, he earned a Thesis in molecular virology from the University of Paris, France, and he is a graduate in virology from the Pasteur Institute in Paris and microbiology from the University of Paris.
=========================
This is one of the greater minds, a microbiologist, gastro, hepatologist and one who does presentations at AASLD.
Who does one listen to?
I give Jean-Michel Pawlotsky's opinion more weight.... : )
Also note that thousands of doctors and patients are currently awaiting new drug approvals and therapies. You can easily see it in the United States where we are on the brink of newer approvals.
This isn't just Pawlotsky's opinion....it is held by thousands of patients and their doctors.
I also disagree with the simplistic notion that if you treat now you will be better off. It simply is not true across the board for everyone.
..... who wants to disagree with this statement?
Is it true for TT's?
Afro-Americans/TT/ Cirrhotics?
Is it true for decompensating people or people on that edge?
You know full well that currently approved triple therapy will not cure everyone, especially difficult to treat groups and that for some people it can risk pushing them towards de-compensation.
My point is that it is not radical WAITING to treat, especially in the United States where we should see two new drug options by the end of this year, and several new treatments such as Gilead or Abbvie's interferon free treatments within about 18 months.
You must also be aware that some issues caused by HCV may be reversed..... after successful treatment,
You must also be aware that some people suffer various longer term post TX issues which is the topic of many threads at med help, many threads in all HCV forums, and many of which most patients have not found help in getting them fixed.
The whole point of this thread is to provide this group of people an opportunity to compare notes and see if they can get the issue addressed, and do it in a manner and location where they will cause the least alarm to people who are trying to treat.....
It is not germane to this discussion whether people wait or treat..
I also think you intentionally overlook the issue that current interferon based therapies are longer, less safe and can cause issues which can defy diagnosis and cure.
.....and THAT is the whole point of this thread.
willy
"....and not one thread about those of us that do not have any post problems....... So what would a new person think when they come here and see all these headlines?"
========================
A separate forum is a good place to keep such treads about of sight of people treating with those same drugs. : )
Although in one of her most recent posts, Pooh wrote;
"So, while a new post treatment health issues THREAD will definitely benefit people who have post treatment issues....."
======================
I think the idea is a whole separate FORUM, not a thread, since it has been proven over and over that posting in the same forum has been, problematic in the past, and I'll note, even in THIS very thread.
Hey.....I will also disagree with the notion that all must treat as soon as possible.
I disagree on a few principles.
FIRST, it is the height of conceit for any of us to presume to suggest to anyone when they should treat. (or not treat)
Most of us are not doctors.
Most of us are not aware of all the medical history of the patients, nor have their medical records.
The only one who should suggest when people should treat is their doctors or medical team.
It seems like even very qualified doctors would refuse to give medical advice over the internet...... and so why should unqualified people do so?
Second...and I have posted it here before;
=================================
http://www.bloomberg.com/news/2013-06-02/drugs-go-from-hit-to-dud-in-two-years-in-hepatitis-race.html
By Simeon Bennett - Jun 3, 2013 8:03 AM CT
"The doctor in the town of Creteil, just outside Paris, is telling hepatitis C patients to delay treatment until later this year, when two new drugs that may boost their chances of defeating the lethal liver infection hit the market.
It’s the same advice he offered two years ago, when earlier medicines developed by Vertex Pharmaceuticals Inc. (VRTX) and Merck & Co. (MRK) were poised for approval."
http://f1000.com/prime/thefaculty/member/4903744522533906
EDUCATION:
Dr Pawlotsky earned his medical degree in Hepatology and Gastroenterology in 1992. In addition, he earned a Thesis in molecular virology from the University of Paris, France, and he is a graduate in virology from the Pasteur Institute in Paris and microbiology from the University of Paris.
=========================
This is one of the greater minds, a microbiologist, gastro, hepatologist and one who does presentations at AASLD.
Who does one listen to?
I give Jean-Michel Pawlotsky's opinion more weight.... : )
Also note that thousands of doctors and patients are currently awaiting new drug approvals and therapies. You can easily see it in the United States where we are on the brink of newer approvals.
This isn't just Pawlotsky's opinion....it is held by thousands of patients and their doctors.
I also disagree with the simplistic notion that if you treat now you will be better off. It simply is not true across the board for everyone.
..... who wants to disagree with this statement?
Is it true for TT's?
Afro-Americans/TT/ Cirrhotics?
Is it true for decompensating people or people on that edge?
You know full well that currently approved triple therapy will not cure everyone, especially difficult to treat groups and that for some people it can risk pushing them towards de-compensation.
My point is that it is not radical WAITING to treat, especially in the United States where we should see two new drug options by the end of this year, and several new treatments such as Gilead or Abbvie's interferon free treatments within about 18 months.
You must also be aware that some issues caused by HCV may be reversed..... after successful treatment,
You must also be aware that some people suffer various longer term post TX issues which is the topic of many threads at med help, many threads in all HCV forums, and many of which most patients have not found help in getting them fixed.
The whole point of this thread is to provide this group of people an opportunity to compare notes and see if they can get the issue addressed, and do it in a manner and location where they will cause the least alarm to people who are trying to treat.....
It is not germane to this discussion whether people wait or treat..
I also think you intentionally overlook the issue that current interferon based therapies are longer, less safe and can cause issues which can defy diagnosis and cure.
.....and THAT is the whole point of this thread.
willy
So, while a new post treatment health issues thread will definitely benefit people who have post treatment issues, hopefully it will also benefit many others, including those who have not yet treated.
-----------------------------------------------------------------------------------------
Agreed, good point.
"This was never about people not treating."
---------------------------------------------------------
I feel this thread is partly about people not treating. If people treat and get rid of the disease before they develop extrahepatic manifestations or before they develop liver disease, then at least they won't have to worry about those post treatment health issues. Hopefully, newcomers will see the need for treatment if they read this thread or a new thread about post treatment health issues because then they will see that some of us developed serious extrahepatic manifestations and/or serious liver related problems because Hep C ran rampant in our bodies for decades.
So, while a new post treatment health issues thread will definitely benefit people who have post treatment issues, hopefully it will also benefit many others, including those who have not yet treated.
---------------------------------------------------------
I feel this thread is partly about people not treating. If people treat and get rid of the disease before they develop extrahepatic manifestations or before they develop liver disease, then at least they won't have to worry about those post treatment health issues. Hopefully, newcomers will see the need for treatment if they read this thread or a new thread about post treatment health issues because then they will see that some of us developed serious extrahepatic manifestations and/or serious liver related problems because Hep C ran rampant in our bodies for decades.
So, while a new post treatment health issues thread will definitely benefit people who have post treatment issues, hopefully it will also benefit many others, including those who have not yet treated.
This was never about people not treating. I have always agreed with Cando's stand that anyone with liver damage who has HCV should treat now rather than later.
I do not see any disagreement or nay sayers here either, I am pointing out that it is important that everyone, ppl who have had adverse reactions to interferon, ppl with extra hepatic manifestations and those with myriad of other health issues have a place where they can share and explore and learn.
In many cases we have found that our issues have not ended with EOT and with the sort of knowledge and support we offer each other, it is a great idea that Dee had to continue the discussion. I am supporting that idea *without* disagreeing with anyone else.
I do not see any disagreement or nay sayers here either, I am pointing out that it is important that everyone, ppl who have had adverse reactions to interferon, ppl with extra hepatic manifestations and those with myriad of other health issues have a place where they can share and explore and learn.
In many cases we have found that our issues have not ended with EOT and with the sort of knowledge and support we offer each other, it is a great idea that Dee had to continue the discussion. I am supporting that idea *without* disagreeing with anyone else.
It seems to me that everyone who has posted in this thread has demonstrated an open mind about the the post treatment issues, whether they are due to the Hepatitis C virus itself or whether they are due to treatment. I see no naysayers among the posters.
It is important for all of us to recognize the issues we have, find the medical care we need, uncover the root cause of our problems, and get the treatment we need.
It is also imperative that people who have not treated their Hep C do so in a timely manner before they develop Hep C induced medical problems, many of which are extrahepatic manifestation of Hep C, and some of which are very serious, life altering, and/or life threatening.
I welcome a new thread in which we can discuss post treatment health issues. I am sure we all have much to share and to learn.
It is important for all of us to recognize the issues we have, find the medical care we need, uncover the root cause of our problems, and get the treatment we need.
It is also imperative that people who have not treated their Hep C do so in a timely manner before they develop Hep C induced medical problems, many of which are extrahepatic manifestation of Hep C, and some of which are very serious, life altering, and/or life threatening.
I welcome a new thread in which we can discuss post treatment health issues. I am sure we all have much to share and to learn.
I agree with Tim, better to keep an open mind and I do believe it is an excellent idea to have a thread going that explores the experience so many of us have post HCV. There is no single reason for it and that is why it is important for everyone to have a voice and for us to be open and accepting of each individual's struggle.
Thank you for your on going concerns. Unfortunatley there are some of us who have and keep holding on to the promise of getting some simbalence of our old selfs back. And it is a fight at all levels. I agree a forum or group or thread or whatever typtifies your thought is great.
As always life is full of neigh sayers, things are changing so fast, there is no one group of people who know all.
If a day goes by in which I have not been open to knew ideas, then I have wasted but another day.
As always life is full of neigh sayers, things are changing so fast, there is no one group of people who know all.
If a day goes by in which I have not been open to knew ideas, then I have wasted but another day.
I have never written about my first "after treatment" as I keep hoping it will improve :) It is just something that happened because of a level 2 trial I was sent to a trial doctor and did not know it, nor did my GP. I am still trying to find out what I can do.
I was looking for an "After Care" type of forum where people could go and exchange ideas and information cause the doctors aren't sharing :)
I am pretty certain that 30 years of HCV has caused an effect, just trying to find it :) I also have cirrhosis.
Willy's idea of taking all of the older posts that had problems and putting them all together is a really great idea.
Thank each and every one of you again for all of your responses, all of your responses are important and very valid.
Love to all, Dee
I was looking for an "After Care" type of forum where people could go and exchange ideas and information cause the doctors aren't sharing :)
I am pretty certain that 30 years of HCV has caused an effect, just trying to find it :) I also have cirrhosis.
Willy's idea of taking all of the older posts that had problems and putting them all together is a really great idea.
Thank each and every one of you again for all of your responses, all of your responses are important and very valid.
Love to all, Dee
OOPS!!!
I got an email saying this topic had been moved to a NEW Forum!!! and in my excitement I jumped the gun believing Dee got her new forum when in actuality the topic had only been moved to the "Social" Forum....
Never mind!
f
I got an email saying this topic had been moved to a NEW Forum!!! and in my excitement I jumped the gun believing Dee got her new forum when in actuality the topic had only been moved to the "Social" Forum....
Never mind!
f
I support this.. and I like the post treatment health issues title. If some people dont like the idea of it. They might consider not spending any time there. Looks like Frank may have some insider information?
Thank you Dee for so much of your caring and great
idea you posted . You are doing a great job helping other concerned people.
We are just here to help each other sharing experiences and giving knowledge ,support and hope to ourselves. Hope you feel better yourself.
Naya
idea you posted . You are doing a great job helping other concerned people.
We are just here to help each other sharing experiences and giving knowledge ,support and hope to ourselves. Hope you feel better yourself.
Naya
Hi everyone -
Willy - I got the cage fighting reference lol.
I am personally in favor of the new forum, but it isn't really up to me. I see the issues, and while I don't understand why this causes fights, I know well that it does.
I have forwarded this to the appropriate people, and will likely hear something in the next few days. In the meantime, since so many have had the opportunity to see it here, I am moving it to Social.
If anyone else would like to show support, that's fine, but no need to go into anymore lengthy discussions about it.
Thanks!
Em
Willy - I got the cage fighting reference lol.
I am personally in favor of the new forum, but it isn't really up to me. I see the issues, and while I don't understand why this causes fights, I know well that it does.
I have forwarded this to the appropriate people, and will likely hear something in the next few days. In the meantime, since so many have had the opportunity to see it here, I am moving it to Social.
If anyone else would like to show support, that's fine, but no need to go into anymore lengthy discussions about it.
Thanks!
Em
I am not as smart as many of my peers on here however I would like to point out that post means after
I posted under suggestions, to see what the moderators would think.
I thought people would want to strive to improve to get as well as they could after they killed the virus or while they waited for the next tx.
Sharing what works, sounded like a good idea at the time
When I search on this forum for post tx = after treatment sx, there are a lot of posts. There are people looking for answers much like a Cancer patient would look or an Aids patient or a surgical patient, a car accident victim.
Don't we face a lot of stigma outside of here without doing it to each other?
I posted under suggestions, to see what the moderators would think.
I thought people would want to strive to improve to get as well as they could after they killed the virus or while they waited for the next tx.
Sharing what works, sounded like a good idea at the time
When I search on this forum for post tx = after treatment sx, there are a lot of posts. There are people looking for answers much like a Cancer patient would look or an Aids patient or a surgical patient, a car accident victim.
Don't we face a lot of stigma outside of here without doing it to each other?
Hi I would first like to thank everyone for posting, I was coming back here before going to sleep and am amazed at the responses.
When I said Post tx, perhaps I should have said after tx.
That was all I meant. I did not mean that tx caused anything though we know that it can...for some people. I believe the risk is worth it however do I need to write that anytime I ask a question?.
I just see that people have had problems after tx and they wonder what is going on. I think it could be years of our bodies fighting the HCV virus, mixed in with things that would have happened anyway, added to tx be that inactivity or deficiencies due to all.
Occasionally people try to ask for help and at times they are shot down i.e.
"Well I am fine, I have not one problem post tx, maybe you are old" of course I am exaggerating... a bit:)
I am searching as I believe others are and when I search I find posts from many many years ago.
I was just trying to help those that are hesitant to ask and questions after treating...thinking everything will be better and for what ever reason it isn't.
I am amazed at the response, as I said this was meant to be in suggestions and I was asking a question.
Your responses have really been wonderful.
This is what a forum is supposed to be.... all the time, an exchange of ideas as we travel down this path.
You guys are the best...that is why I am still here 18 months after treating, because of the people.
You are all kind, caring, informative people, the cream of the crop in my opinion
Thanks so much
D
When I said Post tx, perhaps I should have said after tx.
That was all I meant. I did not mean that tx caused anything though we know that it can...for some people. I believe the risk is worth it however do I need to write that anytime I ask a question?.
I just see that people have had problems after tx and they wonder what is going on. I think it could be years of our bodies fighting the HCV virus, mixed in with things that would have happened anyway, added to tx be that inactivity or deficiencies due to all.
Occasionally people try to ask for help and at times they are shot down i.e.
"Well I am fine, I have not one problem post tx, maybe you are old" of course I am exaggerating... a bit:)
I am searching as I believe others are and when I search I find posts from many many years ago.
I was just trying to help those that are hesitant to ask and questions after treating...thinking everything will be better and for what ever reason it isn't.
I am amazed at the response, as I said this was meant to be in suggestions and I was asking a question.
Your responses have really been wonderful.
This is what a forum is supposed to be.... all the time, an exchange of ideas as we travel down this path.
You guys are the best...that is why I am still here 18 months after treating, because of the people.
You are all kind, caring, informative people, the cream of the crop in my opinion
Thanks so much
D
My reference to cage fighting was poetic license. : )
It referenced the arguing or even attacks that have occurred in such threads.
The other reference of cage referenced two groups of people who are forced to post in the same forum; one group needing to discuss the drugs that may have destroyed their health, the other group needing to discuss those same group of drugs so they can SAVE their lives.
Do you see any potential conflict?
People with post TX issues need a safe place to discuss these issues.
The current HCV treatments are going to become shorter, safer and there will be less need for help to get through them. Current and future treaters needs are being addressed.
The people with post TX issues however have a very great need for help, little or no medical assistance and little or no on line support. Many of these people have had lingering issues for many years.
I feel these people have been cut loose to fend for themselves,
and I don't think vague opines to see XYZ specialist, do some yoga or take some supplement is support.
Can anyone show me some studies which show those have been effective?
Most of the people in post TX threads have tried everything, every doctor to little avail. It's like telling someone with severe depression to "cheer up".
In my opinion we need to get more anecdotal information, see what has not worked and what may work. We need to understand what systems are damaged, understand the cause to possibly be able to understand the cure.
If the data is all cluttered.....it's all random "noise".
If it becomes organized, and in some meaningful numbers then patterns can start to emerge.
I agree with Cando, that until one has cirrhosis, one cannot really understand the reference point of those who have been damaged, who suffer and have their lives impacted by the advanced staging issues.......
So........why is is so hard for those same people to be able to put themselves in the shoes of those who suffer post TX?
As Mike Simon says..... "there is no pain like your pain", but I would think we could be more open to try to understand other peoples suffering.
willy
It referenced the arguing or even attacks that have occurred in such threads.
The other reference of cage referenced two groups of people who are forced to post in the same forum; one group needing to discuss the drugs that may have destroyed their health, the other group needing to discuss those same group of drugs so they can SAVE their lives.
Do you see any potential conflict?
People with post TX issues need a safe place to discuss these issues.
The current HCV treatments are going to become shorter, safer and there will be less need for help to get through them. Current and future treaters needs are being addressed.
The people with post TX issues however have a very great need for help, little or no medical assistance and little or no on line support. Many of these people have had lingering issues for many years.
I feel these people have been cut loose to fend for themselves,
and I don't think vague opines to see XYZ specialist, do some yoga or take some supplement is support.
Can anyone show me some studies which show those have been effective?
Most of the people in post TX threads have tried everything, every doctor to little avail. It's like telling someone with severe depression to "cheer up".
In my opinion we need to get more anecdotal information, see what has not worked and what may work. We need to understand what systems are damaged, understand the cause to possibly be able to understand the cure.
If the data is all cluttered.....it's all random "noise".
If it becomes organized, and in some meaningful numbers then patterns can start to emerge.
I agree with Cando, that until one has cirrhosis, one cannot really understand the reference point of those who have been damaged, who suffer and have their lives impacted by the advanced staging issues.......
So........why is is so hard for those same people to be able to put themselves in the shoes of those who suffer post TX?
As Mike Simon says..... "there is no pain like your pain", but I would think we could be more open to try to understand other peoples suffering.
willy
It sounds like you are in favor of adding a new forum, if those up above agree. Thank you for giving the idea a chance! I want to reiterate Pooh's request that it be titled to include all who have had side issues related to HCV and not just those related to any particular treatment. This will be more inclusive AND it will help us avoid the possibility of creating an undue level of fear of tx into newcomers, by clarifying that not treating is not necessarily going to be any safer than tx.
Well I thought this discussion was anything but "cage fighting". My only concern is that at the present time there are 4 different threads about this going on at the same time and not one thread about those of us that do not have any post problems....... So what would a new person think when they come here and see all these headlines? It would sure scare be. I will now back out but I didn't see any nasty exchanges going on...Oh well
Hi everyone -
Wow okay. First, Dee, this was in Suggestions, and it was moved here to get an idea of what others felt, if there was a need, etc. You aren't going crazy. ;)
Second, people ARE indeed allowed to post about post treatment issues/effects in this forum. What isn't allowed is when it turns into cage fighting, as I think Willy called it. It is entirely possible to disagree with someone without it turning into a nasty exchange.
I'm not sure I remember this request coming up before, but if it did (and I will check), if it was turned down, it had not one thing to do with ads. Our content decisions are not based on ads. If it were, it would stand to reason that we'd want another forum so we could have more ads.
I will bring this request to our Community Manager, and will let you all know when I have any new info.
Thanks,
Emily
Wow okay. First, Dee, this was in Suggestions, and it was moved here to get an idea of what others felt, if there was a need, etc. You aren't going crazy. ;)
Second, people ARE indeed allowed to post about post treatment issues/effects in this forum. What isn't allowed is when it turns into cage fighting, as I think Willy called it. It is entirely possible to disagree with someone without it turning into a nasty exchange.
I'm not sure I remember this request coming up before, but if it did (and I will check), if it was turned down, it had not one thing to do with ads. Our content decisions are not based on ads. If it were, it would stand to reason that we'd want another forum so we could have more ads.
I will bring this request to our Community Manager, and will let you all know when I have any new info.
Thanks,
Emily
I think it is all very important, lets keep in mind Rivll did not do SOC, or triple treatment as hers was these new drugs and was interferon free.
What I wish we knew was how much is post treatment issues and how much is not, it is very easy to blame treating but we run the risk of not following up on what might be the real cause and that could be very dangerous...... Have a good day my friend
What I wish we knew was how much is post treatment issues and how much is not, it is very easy to blame treating but we run the risk of not following up on what might be the real cause and that could be very dangerous...... Have a good day my friend
I have no disagreement with what you wrote in the last post.
You seem to feel however that it is important that information which leads people to want to treat is important and anything negative about SOC/triple therapy should be suppressed.
I think the information needs to be available on both sides.
I've seen people encourages to treat with currently available triple therapy (Incivek/victrellis) even where their staging suggests no such need, and even where shorter more efficacious treatments (sof w/ soc or simeprevir w/ soc) are soon to be available.
You also must admit that many people who are in danger of HCC also face greater risks of decompensation and other allied risks.
Treating and not treating both have their own risks.
Perhaps this is best left to the patient and their attending medical team. :)
The thread......
remember the thread you are posting in.....
What about a forum for people with these post TX issues?
As you can see.....
I am in favor of it.
These are people who had HCV, they had at least on course of treatment and many of the issues of HCV or HCV treatment may be intertwined....
....;but.....
they people need help and they are not getting it.
Where is the concern for them?
(pushing away from the computer for a while.
I've chores to do and I don't want Mike Simon to come on and admonish me for being long winded....or remind me of when we could only post twice a day at medhelp)
Hhahahhahahhahaahah just teasing Mike. You know I love you. : *
You see Cando.....
I think this group of people needs help just as cirrhotics do....or pre/post TP groups do.
willy
You seem to feel however that it is important that information which leads people to want to treat is important and anything negative about SOC/triple therapy should be suppressed.
I think the information needs to be available on both sides.
I've seen people encourages to treat with currently available triple therapy (Incivek/victrellis) even where their staging suggests no such need, and even where shorter more efficacious treatments (sof w/ soc or simeprevir w/ soc) are soon to be available.
You also must admit that many people who are in danger of HCC also face greater risks of decompensation and other allied risks.
Treating and not treating both have their own risks.
Perhaps this is best left to the patient and their attending medical team. :)
The thread......
remember the thread you are posting in.....
What about a forum for people with these post TX issues?
As you can see.....
I am in favor of it.
These are people who had HCV, they had at least on course of treatment and many of the issues of HCV or HCV treatment may be intertwined....
....;but.....
they people need help and they are not getting it.
Where is the concern for them?
(pushing away from the computer for a while.
I've chores to do and I don't want Mike Simon to come on and admonish me for being long winded....or remind me of when we could only post twice a day at medhelp)
Hhahahhahahhahaahah just teasing Mike. You know I love you. : *
You see Cando.....
I think this group of people needs help just as cirrhotics do....or pre/post TP groups do.
willy
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STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
FIRST of all, there are long time sufferers who have had no such forum.
Where they have posted here there has been great resistance to seeing these symptoms in print. I understand that it is an uncomfortable sight seeing while you are treating; seeing lists of terrible and possibly permanent side effects.
The blame may be MedHelp itself.
The forum is very apt at creating ways to bombard us with ads, tracking cookies, and features such at twitter and Facebook feed "amenities".
Lately some of the adds even contained malware.
It has long been content to crowd everybody into one page like a cage fight. If people end up uncomfortable, they would just lock the thread.
New people would read the closed thread and answer, and the posts would just be deleted. Later they would be placed into a separate thread which had no context to their reply.
This was Medhelps solution.
The effect has been to discourage replies, discourage discussion, discourage a database of side effects for people with this/these issues.
These are people with Hep C, or people who had hep C, but they still have the symptoms of hep C, or the symptoms of the legacy of having treated their Hep C.
The DRUG companies have not created any treatments for these maladies; ONLY warnings that the drugs may cause them.
The DOCTORS who prescribed the meds are quite often surprised or in denial about these symptoms. It may also be that they prefer to remain ignorant of these issues, while they continue to write more prescriptions for the same. God forbid that the data is catalogued or a causal relationship established. (and yet the same medical community acknowledges the need for new safer treatments)
Fellow HCV INFECTED members (either currently or SVR'ed) often have no interest is seeing such threads in the one forum where people are treating, since it is uncomfortable for members who are treating and may discourage others from treating.
MedHelp has had no interest in the past in creating a forum. They are able to create many other forums, many other questionable features for their "medical forum". They could address it easily by adding a forum. One does it with no printing supplies; paper or ink, without having to hire a writer..... since members produce the content.
To do that however..... they would have to show a concern for these members. As it is now, they are forced to post in THIS SAME forum, and it has been proven amply that this creates a lot of disharmony.
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Interferon just saw a resurgence in treatments. For a while, SOC use had dwindled while people awaited triple therapies.
Since Incivek and Victrellis have been approved many people have once again treated I am guessing over well over 100K people have treated; Over 30,000 had, just with Incivek in about 9 months after approval. As time has gone by international markets have opened and it seems that it hasn't even been that long that it was finally approved in Australia.
This pipeline will continue to treat HCV infected people with SOC plus another antiviral, and we are soon to see that Simeprevir and Sofosbuvir will likely soon be approved for use with SOC.
There will continue to be thousands, hundreds of thousands who will be exposed to these drugs and drug combinations for YEARS to come.
It also seems to be a well established fact that the symptoms may pick up after TX or remain after TX.
What then can be done for this group of people?
One of the greatest posters I've ever read in this forum was jmjm530.
He was a prolific poster with over 17,000 posts.
He was funny, bright, sharp and informed and could write prose that was a joy to read, conveyed information, with wit, humor and poise.
Jim treated and post TX developed post TX issues that would not let him type anymore. (tendon issues) He had to resort to voice recognition software.
Before he left however, he used to catalog some of these post TX sides in threads.
There are few people as informed as he was about this. If he felt is was important it probably was and still is.
There are a lot of people who are in need of this forum.
There are a lot of people who have been neglected who HAVE this issue,
...and...there are many more coming who WILL need a forum which helps members address it.
And since the forum search engine does not always lend itself to such searches.....
.....why not have a forum where such threads can be placed?
This would also allow other past threads to be flagged so they can also be moved to the new forum.
It all depends upon if one is interested in having a medical forum where one can find information, or where one can hide such information, or discourage it's cataloging.
MedHelp has long turned it's back on this idea. I've been told
that Medhelp prefers that people start their own "users group".
That for me confers a type of non-recognition by Medhelp. They prefer that this group remain invisible.
Ask yourself. Is there a forum here for side effects from Cancer treatments? We all know what Chemobrain is......
has Medhelp stepped up with a forum for those folks?
I do not see one.....although one can argue there is a need.....
You can find other forums for that issue....
you just won't find one here.... or none I could find.
willy