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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
I think its a great idea.
I'm not bothered by the post HCV posts in this forum as I like the information. Knowledge is power, eyes wide open. . . Treatment is a big decision, and I'm glad my doctor informed me of many possible post side effects, but a forum specifically for this would also provide information to people concidering certain treatments. Win win in my view.
I'm not bothered by the post HCV posts in this forum as I like the information. Knowledge is power, eyes wide open. . . Treatment is a big decision, and I'm glad my doctor informed me of many possible post side effects, but a forum specifically for this would also provide information to people concidering certain treatments. Win win in my view.
I agree, it's a good idea. The only drawback might be that it probably would draw a much smaller group and so would be much less active. That might change as more people join the post-tx stage, but then with the newer tx's having so few side effects, maybe the need for post-tx support will fade to less than it is now. I guess that remains to be seen however, so why not give it a trial? Do you know how one starts a new community on medhelp?
1 Comments
I'm telling you they used interferon a long time I've been bedbound since 2006 and I my hep c was minor when first detected and yeah some new drugs have no side effects that's why harvoni had deaths, if you think how much time did they take in trials and studies. I was told othing about all the stuff that's wrong with me post interferon & ribiviron 48 week treatment, ask lots of questions lots, research everything you can, which probably be much, cause it took 10 years to find out just what I know and I'd give anything for a doctor or group with folks to talk to cause nothing makes me any better.
I also think it might be a great idea ,Dee.Everybody can learn more,we can help each other. Naya
good idea dee,
i wonder my self if i am suffering from post tx symptoms or if its my liver wich has worsened from tx,with 48 weeks of eating pills like m+ms ,plus interferon and epo shots.
sometimes i wonder where or how i would be without treatment.i guess maybe even more sick.
but who knows.i had no choice but treat asap when the incevik was aproved here.
marc
i wonder my self if i am suffering from post tx symptoms or if its my liver wich has worsened from tx,with 48 weeks of eating pills like m+ms ,plus interferon and epo shots.
sometimes i wonder where or how i would be without treatment.i guess maybe even more sick.
but who knows.i had no choice but treat asap when the incevik was aproved here.
marc
WOW! You guys are great. I thought I was asking MH but this response is better than I could have hoped for.,
It is just that I recently found that other forums have post tx site thanks to one of our members so I was wondering if we could do the same to help people here.
It seems to be a booming business in other forums.
People like Frank, who treated a while ago are still looking for help as am I.
If we could share what we learn perhaps that would help many people still suffering. I remember when all that was here was a HCV Forum, then people felt the need for a Social site. I would hope that there would not be a lot of members however I can do a search and come up with many people looking for help with Post Tx SX
I have a friend who treated in the late 90's with 3 different trials, she still has HCV and is still suffering SX. I am sure she would love to know if a Vitamin Deficiency or an autoimmune problem is her cause.
I also wonder if one is diagnosed with RA and they take RA meds which reduce immune system, could that cause a relapse? I was looking into that when I found many old posts about this very subject, I almost responded to a 2005 post, then thought better of it.
When I first started down this road, I thought I would tx get well and move on, I am sure many thought that. I always think of the "Melville post" I am sure his wife would love to get out of bed.
Thank you again, each and everyone of you
http://www.medhelp.org/posts/Hepatitis-C/dormant-hepatitis-C-and-hydroxychloroquine-Plaquenil/show/91324
It is just that I recently found that other forums have post tx site thanks to one of our members so I was wondering if we could do the same to help people here.
It seems to be a booming business in other forums.
People like Frank, who treated a while ago are still looking for help as am I.
If we could share what we learn perhaps that would help many people still suffering. I remember when all that was here was a HCV Forum, then people felt the need for a Social site. I would hope that there would not be a lot of members however I can do a search and come up with many people looking for help with Post Tx SX
I have a friend who treated in the late 90's with 3 different trials, she still has HCV and is still suffering SX. I am sure she would love to know if a Vitamin Deficiency or an autoimmune problem is her cause.
I also wonder if one is diagnosed with RA and they take RA meds which reduce immune system, could that cause a relapse? I was looking into that when I found many old posts about this very subject, I almost responded to a 2005 post, then thought better of it.
When I first started down this road, I thought I would tx get well and move on, I am sure many thought that. I always think of the "Melville post" I am sure his wife would love to get out of bed.
Thank you again, each and everyone of you
http://www.medhelp.org/posts/Hepatitis-C/dormant-hepatitis-C-and-hydroxychloroquine-Plaquenil/show/91324
I think it is a good idea but I would hesitate to call it "post treatment side effects."
I think calling it something like "Post HCV Treatment Health Issues" would be a better idea.
The reason I say this is because many of us have post HCV treatment health issues but they are/were not all caused from treatment. Many of the issues we have were caused by the Hep C virus itself, NOT the Hep C treatment.
If we expand the forum title/definition to include all post HCV treatment health issues (as opposed to post HCV treatment side effects), then we will include a much larger group and I think we will all gain a lot more knowledge about the lasting health issues related to Hep C infection in addition to the health issues related to HCV treatment.
In addition, sometimes/often the health issues caused by Hep C viral infection overlap with the health issues caused by Hep C treatment.
An example of this would be someone with an autoimmune disease triggered by Hep C infection and possibly exacerbated by treatment. Another example would be someone who, PRIOR to treatment, developed an autoimmune disorder which had been triggered by the Hep C virus infection but who was not diagnosed until after the end of treatment.
This happened in my case. I clearly had Sjogren's Disease before treatment but none of my doctors ever picked it up. It was only several months after treatment ended that I went to a Rheumatologist and was diagnosed with Sjogrens. However, in retrospect, I have had the symptoms of Sjogren's Disease for many, many years, long before I ever treated Hep C. So, in my case, the HCV treatment did not cause the Sjogrens, and I think there are many on the forum in my same boat, who had these diseases, triggered by Hep C, prior to treating. I think we would gain (and could offer information and support) from being a part of this forum also.
I don't think I have any health issues specifically from the HCV treatment, but I sure have health issues caused by/triggered by having had Hep C infection.
I think calling it something like "Post HCV Treatment Health Issues" would be a better idea.
The reason I say this is because many of us have post HCV treatment health issues but they are/were not all caused from treatment. Many of the issues we have were caused by the Hep C virus itself, NOT the Hep C treatment.
If we expand the forum title/definition to include all post HCV treatment health issues (as opposed to post HCV treatment side effects), then we will include a much larger group and I think we will all gain a lot more knowledge about the lasting health issues related to Hep C infection in addition to the health issues related to HCV treatment.
In addition, sometimes/often the health issues caused by Hep C viral infection overlap with the health issues caused by Hep C treatment.
An example of this would be someone with an autoimmune disease triggered by Hep C infection and possibly exacerbated by treatment. Another example would be someone who, PRIOR to treatment, developed an autoimmune disorder which had been triggered by the Hep C virus infection but who was not diagnosed until after the end of treatment.
This happened in my case. I clearly had Sjogren's Disease before treatment but none of my doctors ever picked it up. It was only several months after treatment ended that I went to a Rheumatologist and was diagnosed with Sjogrens. However, in retrospect, I have had the symptoms of Sjogren's Disease for many, many years, long before I ever treated Hep C. So, in my case, the HCV treatment did not cause the Sjogrens, and I think there are many on the forum in my same boat, who had these diseases, triggered by Hep C, prior to treating. I think we would gain (and could offer information and support) from being a part of this forum also.
I don't think I have any health issues specifically from the HCV treatment, but I sure have health issues caused by/triggered by having had Hep C infection.
Please accept my apologies, I thought I had typed this into Medhelp suggestion. Man my face is red. I also wanted to mention that after looking at some other forums on here, ours is very active...while the Cancer forum does not seem to be doing much. I see why EyesofBlue said she had to elsewhere for cancer support. Maybe it is because there are so many places for Cancer support but not so much for HCV. The stigma is still out there. I just found a new doctor, as I told her I had been cured of HCV, she started using a hand sanitizer, once was fine, I get that but 4 times? I wanted to tell her that MRSA can't be killed by those...only soap and water. That is how it got loose. A relative at Yale said they did a study to find out when MRSA and CDiff got out of control. It seemed to coincide with the use of hand sanitizers vs soap and water.
Thanks again for replies
Thanks again for replies
People coming to this site for help are going to think twice maybe three times about treating, I know I sure would. I am not saying some does not have post treatment side effects as they do, but many more do not. I have been here for years and the ones that don't out weigh the ones that do by a large number. This side now has become one thread after another on this... WHY?
Go to other sites where people are being treated for other things and you might hear the same thing, they believe whatever drugs they were on caused them problems. Again I am not saying it doesn't with some people but lets remember a lot of these "problems" people that never had Hep C are having. Hell just look around your own family and friends, are they all healthy because they don't have Hep C or ever treated?
Go to other sites where people are being treated for other things and you might hear the same thing, they believe whatever drugs they were on caused them problems. Again I am not saying it doesn't with some people but lets remember a lot of these "problems" people that never had Hep C are having. Hell just look around your own family and friends, are they all healthy because they don't have Hep C or ever treated?
I think a forum such as has been proposed is a good idea.
I agree with Pooh and Can-do that some after effects may be related to auto immune issues, carrying HCV for decades or a number of other reasons. It is also true that for some people these drugs have wreaked havoc with their health and it will take time to heal from. I do not think we can deny that.
I have often read of symptoms people are suffering from that I too experienced even though I did not treat with interferon. I think the idea is to explore and keep an open mind.
We went through the virus, treatment and we thought we would start a new healthy life with SVR. With most people that is true but for some of us, we are still dealing with the effects of the damage done by the virus, cirrhosis and aging issues and for some, tx meds.
It does not have to be a controversy, it can be a forum where we can learn more about how to ease our symptoms, treat them and be of support to each other.
I agree with Pooh and Can-do that some after effects may be related to auto immune issues, carrying HCV for decades or a number of other reasons. It is also true that for some people these drugs have wreaked havoc with their health and it will take time to heal from. I do not think we can deny that.
I have often read of symptoms people are suffering from that I too experienced even though I did not treat with interferon. I think the idea is to explore and keep an open mind.
We went through the virus, treatment and we thought we would start a new healthy life with SVR. With most people that is true but for some of us, we are still dealing with the effects of the damage done by the virus, cirrhosis and aging issues and for some, tx meds.
It does not have to be a controversy, it can be a forum where we can learn more about how to ease our symptoms, treat them and be of support to each other.
http://www.frozenshoulderexercises.org/left-shoulder-pain-women/
Now I wonder how many of these people have Hep C or ever treated before?
Now I wonder how many of these people have Hep C or ever treated before?
Many different and separate diseases have common symptoms.
I've got a customer who just had chemotherapy for breast cancer.
Now she uses a walker and cannot drive; neuropathy.
Sure...... you can suggest that she had a preexisting, or latent..... or maybe she is prediabetes, or some genetic predisdosition.
The fact is, she took powerful drugs, and she lost a great deal nerve sensation.
Well..... that is a well known result of cancer chemotherapy, but one doctor or another can suggest it is something else.
One has to try hard to not connect the dots.
The fact that some people here worry about what some people might think or do....what if they are dissuaded from treating?
Well..... then they are making an informed choice.
The fact that the entire industry is moving away from interferon based therapies tells you that whole blocks of patients are making that decision based upon information and with their doctors knowledge, consent, and supervision.
We don't need to concern ourselves with other peoples decision to treat and it is not our role to persuade or discourage people to treat or not treat.
There are long lists of patients whose doctors have missed HCV diagnosis.
I'm one..... and I went in to tell the doctor to check me for it. The idiot missed it in spite of me being reactive.
I got a call from the CDC 8 months after my elisa test.
Sorry..... I take what some doctors say with a grain of salt.
I don't always respect opinion where there is no data......
and I always wonder why people try to suppress data, information, thinking that they "know" what is best for others.
I totally agree that many people have a feeling that the issues are TX related, but that people have no proof.
I see this balanced against doctors who assert that this was preexisting, that this was HCV related..... or old age.....when they also have no baseline, no data, just an opinion and little to back it up.
The black box warnings on interferon state many of these symptoms may be drug related......
....not even the drug companies provide the argument that there are healthy non interferon users who have these symptoms....... : )
I don't find that objective.
willy
I've got a customer who just had chemotherapy for breast cancer.
Now she uses a walker and cannot drive; neuropathy.
Sure...... you can suggest that she had a preexisting, or latent..... or maybe she is prediabetes, or some genetic predisdosition.
The fact is, she took powerful drugs, and she lost a great deal nerve sensation.
Well..... that is a well known result of cancer chemotherapy, but one doctor or another can suggest it is something else.
One has to try hard to not connect the dots.
The fact that some people here worry about what some people might think or do....what if they are dissuaded from treating?
Well..... then they are making an informed choice.
The fact that the entire industry is moving away from interferon based therapies tells you that whole blocks of patients are making that decision based upon information and with their doctors knowledge, consent, and supervision.
We don't need to concern ourselves with other peoples decision to treat and it is not our role to persuade or discourage people to treat or not treat.
There are long lists of patients whose doctors have missed HCV diagnosis.
I'm one..... and I went in to tell the doctor to check me for it. The idiot missed it in spite of me being reactive.
I got a call from the CDC 8 months after my elisa test.
Sorry..... I take what some doctors say with a grain of salt.
I don't always respect opinion where there is no data......
and I always wonder why people try to suppress data, information, thinking that they "know" what is best for others.
I totally agree that many people have a feeling that the issues are TX related, but that people have no proof.
I see this balanced against doctors who assert that this was preexisting, that this was HCV related..... or old age.....when they also have no baseline, no data, just an opinion and little to back it up.
The black box warnings on interferon state many of these symptoms may be drug related......
....not even the drug companies provide the argument that there are healthy non interferon users who have these symptoms....... : )
I don't find that objective.
willy
One thing for sure is Hep C is a silent killer. I have cirrhosis and I am always looking over my shoulder wondering if HCC is next as more and more of us is getting it even after we are cured. Untreated that WILL kill you, transplants are no fun....... For people to risk becoming cirrhotic is down right scary, so will I have to disagree with you when you say this as it is important for people to know this...
"We don't need to concern ourselves with other peoples decision to treat and it is not our role to persuade or discourage people to treat or not treat."
"We don't need to concern ourselves with other peoples decision to treat and it is not our role to persuade or discourage people to treat or not treat."
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
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
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
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
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.
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
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
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 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
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You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
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