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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
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?
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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