Aa
long term side effects after taking pegasy/ribrivan
I'm 44 yr old female dx with Hep C genotype 1a stage 3 by liver biopsy, did treatment for 72 weeks 3 months after treatment i relapsed. it will be 6 months on feb 19 since my last treatment. I still have serve muscle and joint pain, fatigue, insomnia, white blood count still low, chronic diarrhea, shortness of breath, and can't REMEMBER things (brain fog). My doctor told me today that my illness wasn't from the treatment but from ANXIETY DISORDER, fibromyalgia,ibs and that i needed to see a psychiatry consultation. Is there anyone that has Hep C and took treatments having long term problems? OR is it just me!!! Please Help and let me know
It's been five years since I finished my tx I'm clear but still have many side effects brain fog ,can't concentrate, massive joint pain trouble keeping a conversation going, it's like there lips are moving but nothing is making it to your brain ,and my doctor says the same thing it's everything but the tx
It ***** being like this they don't say anything about what happens post tx and your stuck with it
I will pray for you and I hope yours goes away
outofgas
It ***** being like this they don't say anything about what happens post tx and your stuck with it
I will pray for you and I hope yours goes away
outofgas
Hi again everyone -
This thread is now closed. I am just going to copy what I wrote on the other thread that I closed a few weeks ago. Most of it holds true for this thread as well.
Hi there -
This thread is now closed. While it is important to know what the side effects of any treatment are, and to hear differing views in order to make the most informed decision for you, it is also important to note that for some, current standard treatment is the only option they may have.
We have members who need(ed) treatment in order to stay alive, and "big pharma" saved their lives. We also have current members who have lost family members to hep C, or who are very close to death as we speak, and others who have tried everything, and failed. We have members who haven't treated, and are doing fine, and others who are using what could be called alternative treatments.
It's important to note this for new members who may need the treatment and are scared, realizing it's their only option.
Some have to deal with lingering side effects from interferon, others don't. It's not a one-size-fits-all situation, unfortunately.
Emily
********************** CLOSED THREAD *******************************
NO MORE POSTS, PLEASE
This thread is now closed. I am just going to copy what I wrote on the other thread that I closed a few weeks ago. Most of it holds true for this thread as well.
Hi there -
This thread is now closed. While it is important to know what the side effects of any treatment are, and to hear differing views in order to make the most informed decision for you, it is also important to note that for some, current standard treatment is the only option they may have.
We have members who need(ed) treatment in order to stay alive, and "big pharma" saved their lives. We also have current members who have lost family members to hep C, or who are very close to death as we speak, and others who have tried everything, and failed. We have members who haven't treated, and are doing fine, and others who are using what could be called alternative treatments.
It's important to note this for new members who may need the treatment and are scared, realizing it's their only option.
Some have to deal with lingering side effects from interferon, others don't. It's not a one-size-fits-all situation, unfortunately.
Emily
********************** CLOSED THREAD *******************************
NO MORE POSTS, PLEASE
ditto ad nauseaum.
People need support while on treatment not more things to make the paranoid interferon mind, crazier.
Unemotional straightforward information, studies, research is fine.
DD:
When I began looking into interferon treatment in 2005, all I heard was horror stories.( It scared me from doing tx for over a year.)
If you can Google you already all about it.
You posted the link, fine, now back off.
And by the way, if it looks like a duck and walks like a duck it might be my friend Linda.
People need support while on treatment not more things to make the paranoid interferon mind, crazier.
Unemotional straightforward information, studies, research is fine.
DD:
When I began looking into interferon treatment in 2005, all I heard was horror stories.( It scared me from doing tx for over a year.)
If you can Google you already all about it.
You posted the link, fine, now back off.
And by the way, if it looks like a duck and walks like a duck it might be my friend Linda.
You can always count on willy to ride in and set us stright. Oh yeah willy how's treatment going???
Oh my goodness... Your ID relates to "double dosing" interferon? Holy....
I would respectfully submit that in one of your previous posts, when you said that your post-treatment side effects resulted, "from too much exposure" you were probably correct.
Perhaps it would be a good idea to alert new members asking these questions to that fact?
I would also submit that the vast majority of people do not do what you did. You really can't compare the risk of side effects of people who will use interferon as prescribed to someone's side effects who used it in a reckless manner, not as prescribed and certainly not in keeping with any accepted, approved HCV treatment protocol.
I would respectfully submit that in one of your previous posts, when you said that your post-treatment side effects resulted, "from too much exposure" you were probably correct.
Perhaps it would be a good idea to alert new members asking these questions to that fact?
I would also submit that the vast majority of people do not do what you did. You really can't compare the risk of side effects of people who will use interferon as prescribed to someone's side effects who used it in a reckless manner, not as prescribed and certainly not in keeping with any accepted, approved HCV treatment protocol.
:o
As always, mike writes one line that sums it all up and I scramble with paragraphs and can't say a thing.
As always, mike writes one line that sums it all up and I scramble with paragraphs and can't say a thing.
This is our new version of a politics thread, remember them?
Even though we do bash heads, it is clear we do care greatly about heppers. Hopefuly in short time (3 -5years) this will be a moot point.
Then, like families do we can argue about something else;)
God I hope all my friends are cured by then, I can't imagine being here another five years. Darn new people who make m fall in love with them and my old pals who I not want to leave!
SvR for all.
Even though we do bash heads, it is clear we do care greatly about heppers. Hopefuly in short time (3 -5years) this will be a moot point.
Then, like families do we can argue about something else;)
God I hope all my friends are cured by then, I can't imagine being here another five years. Darn new people who make m fall in love with them and my old pals who I not want to leave!
SvR for all.
Very sensible post Willy. It does help to have a balanced approach which you seem to strive for in controversial topics like this one. Sometimes I wonder how we'd get along without your careful and measured objectivity.
Thanks so much.
Mike
Thanks so much.
Mike
I think part of my point is that both parties have strong personal beliefs.
Both parties have seen many suffer. Deb wrote that she has seen many die from ESLD. No one can argue with that.
I believe that Double Dose has equal feelings and experience with long term sides. One might even equate the number of people, in the 1-5% who were expected to die from ESLD to those who suffer from long term sides from treatment. ( an aside.....I am NOT asserting 1-5% is accurate for the size of the IFN damage group. Nor does there be any sort of reparative therapy for the damage caused by IFN.)
Both have heartfelt opinions, personal experience and facts that back up the feelings and opinions, yes?
What I don't see or understand is the lack of tolerance for the long term sides type post. Would you have that type of reply banned from the forum?
nygirl wrote;
---------------------------------------------------------------------
"Double Dose does it ever occur to you that you OD'd on interferon by double doing it for a year I don't think that your long term results would be the same as folks who just take it as directed. "
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Whereas I know genotype 2's who treated...... recall....this is at a lower dose and shorter time period, who suffered post TX issues. The posts in the other thread had some people whose sides were so bad they does reduced and had TX ended early, and still had damage. I personally think people all respond differently to IFN/ RBV.
Just as people claim staging damage is not lineal, I would suggest that damage caused by IFN may not be dose dependent. Reasonable?
I hope/wish....that lacking a separate forum for such threads that tolerance will reign.
willy
Both parties have seen many suffer. Deb wrote that she has seen many die from ESLD. No one can argue with that.
I believe that Double Dose has equal feelings and experience with long term sides. One might even equate the number of people, in the 1-5% who were expected to die from ESLD to those who suffer from long term sides from treatment. ( an aside.....I am NOT asserting 1-5% is accurate for the size of the IFN damage group. Nor does there be any sort of reparative therapy for the damage caused by IFN.)
Both have heartfelt opinions, personal experience and facts that back up the feelings and opinions, yes?
What I don't see or understand is the lack of tolerance for the long term sides type post. Would you have that type of reply banned from the forum?
nygirl wrote;
---------------------------------------------------------------------
"Double Dose does it ever occur to you that you OD'd on interferon by double doing it for a year I don't think that your long term results would be the same as folks who just take it as directed. "
----------------------------------------------------------------------
Whereas I know genotype 2's who treated...... recall....this is at a lower dose and shorter time period, who suffered post TX issues. The posts in the other thread had some people whose sides were so bad they does reduced and had TX ended early, and still had damage. I personally think people all respond differently to IFN/ RBV.
Just as people claim staging damage is not lineal, I would suggest that damage caused by IFN may not be dose dependent. Reasonable?
I hope/wish....that lacking a separate forum for such threads that tolerance will reign.
willy
Wow Jasmine as the expression gies out of the mouths of babes:)
You go girl, I never really thought about the possibility that a lot of our problems pre or post treatment could have been caused by our livers not disposing of toxins properly. For years and years!
Now that, to me, sounds SO feasible!!!!
You go girl, I never really thought about the possibility that a lot of our problems pre or post treatment could have been caused by our livers not disposing of toxins properly. For years and years!
Now that, to me, sounds SO feasible!!!!
Oh my, the conversation got fun while I was writing all that. I think I have something to do now.
I am not sure I should post this because I cannot recommend it. For all I know it could cause damage so please take this with great skepticism and do the research I never did and consider your own health.
Before I was diagnosed with hep c, I had lots of symptoms with digestive issues, brain fog, joint and muscle issues, issues sleeping, itching, fatigue, etc. I went to various docs for different issues with no cure. I started researching various annoying symptoms over time and noticed a common theme of liver function coming up.
I tried dr cabot's liver diet and it helped a little but not something I could try long term. Since that did help a little, I decided to buy a 7 day Liver detox from whole foods. I started taking omega 3 sometime around then too. The detox actually helped my symptoms a lot. So did the omega 3.
A detox when you are other meds or even just based on your own health may not be safe so you should talk to your doc before even thinking about this. I am again not recommending anyone try this. Still it is interesting and since your liver was under attack by hep c it may also point to a possibility that your liver not 100% eliminating toxins.
Before I was diagnosed with hep c, I had lots of symptoms with digestive issues, brain fog, joint and muscle issues, issues sleeping, itching, fatigue, etc. I went to various docs for different issues with no cure. I started researching various annoying symptoms over time and noticed a common theme of liver function coming up.
I tried dr cabot's liver diet and it helped a little but not something I could try long term. Since that did help a little, I decided to buy a 7 day Liver detox from whole foods. I started taking omega 3 sometime around then too. The detox actually helped my symptoms a lot. So did the omega 3.
A detox when you are other meds or even just based on your own health may not be safe so you should talk to your doc before even thinking about this. I am again not recommending anyone try this. Still it is interesting and since your liver was under attack by hep c it may also point to a possibility that your liver not 100% eliminating toxins.
Seems an inordinate amount of newcomers today questioning interferon huh?
Out of the blue. I can expect my pie-hole friend any minute now. Lol.
Out of the blue. I can expect my pie-hole friend any minute now. Lol.
As far as the thread you speak of I though I saw it was closed or removed ..That was my only comment and I added "thankfully " as my own personal opinion on that thread was glad to see it go...however again I speak only for myself...
Again..I have personally never posted any stats whatsoever about the % of someone dying or not dying from "not " treating their HCV
My posts usually try to reflect all options available to other members as I undestand them and I always say it is best to confer with a knowledgable doctor when making any desicions about HCV...
Ican"t speak to what others members post...
Best to you Willy
Will
My posts usually try to reflect all options available to other members as I undestand them and I always say it is best to confer with a knowledgable doctor when making any desicions about HCV...
Ican"t speak to what others members post...
Best to you Willy
Will
Ps will I don't know if the thread is still up or just closed, but once again now I am reminded why it was. Fear mongering might sell papers but as for that yellow journalism... Yeah yellow
In my humble opinion.
If your doctor says you need to treat, TREAT. Don't listen to a bunch of bozo's like us argue.
Deb,
Just sayin...
been cured since treating for 72 weeks on that old devil interferon.
Diagnosed stage 3 in 2005 and HAVE seen my personal friends who did not, die of end stage or liver cancer.
In my humble opinion.
If your doctor says you need to treat, TREAT. Don't listen to a bunch of bozo's like us argue.
Deb,
Just sayin...
been cured since treating for 72 weeks on that old devil interferon.
Diagnosed stage 3 in 2005 and HAVE seen my personal friends who did not, die of end stage or liver cancer.
Thanks for the reply.
I was going to amend my comment, but I will do it now. We can't edit our posts, but I would like to.
It is a "fact" that 1-5% could face death by liver disease, and it could be interpreted as fact. It's certainly true for 1-5%, at least in the past.
I wouldn't agree that it is fact that it is an either or treat or die; not true, not accurate.
I don't think I see it often worded in these replies that it is a remote possibility. I personally believe that it is even more remote, considering the current efficacy of new approved treatments and the great possibility on the horizon of the newer treatments (some of which may include RBV).
If the current "cure" rate is about 75% and if it may reach 90% in a few years I question whether quoting the 1-5% death rate is accurate.
Besides..... this is not a "to treat or wait" type thread. they asked about.....well, you can read the thread title. DD's reply was on topic; some...... were not.
When a thread gets "locked" the thread still exists, but cannot be relied to. It therefore "sinks" into a forum and is generally only available to people specifically researching a topic. Since it cannot be relied to it can virtually never come to forum forefront again.
willy
I was going to amend my comment, but I will do it now. We can't edit our posts, but I would like to.
It is a "fact" that 1-5% could face death by liver disease, and it could be interpreted as fact. It's certainly true for 1-5%, at least in the past.
I wouldn't agree that it is fact that it is an either or treat or die; not true, not accurate.
I don't think I see it often worded in these replies that it is a remote possibility. I personally believe that it is even more remote, considering the current efficacy of new approved treatments and the great possibility on the horizon of the newer treatments (some of which may include RBV).
If the current "cure" rate is about 75% and if it may reach 90% in a few years I question whether quoting the 1-5% death rate is accurate.
Besides..... this is not a "to treat or wait" type thread. they asked about.....well, you can read the thread title. DD's reply was on topic; some...... were not.
When a thread gets "locked" the thread still exists, but cannot be relied to. It therefore "sinks" into a forum and is generally only available to people specifically researching a topic. Since it cannot be relied to it can virtually never come to forum forefront again.
willy
There is no doubt that interferon tx has the ability to cause long term side effects.
It also has cured many people of the hep C virus which has the potential to cause liver damage or even death or do no damage at all.
It's variable nature makes it hard to pin down.
Of the handful of people I know personally who have done tx, and reached SVR, they do not write on forums or take part in surveys as tx is part of their past.
will: Emily closed that thread as" in no more comments"
It also has cured many people of the hep C virus which has the potential to cause liver damage or even death or do no damage at all.
It's variable nature makes it hard to pin down.
Of the handful of people I know personally who have done tx, and reached SVR, they do not write on forums or take part in surveys as tx is part of their past.
will: Emily closed that thread as" in no more comments"
Nope I can't remember saying or seeing you WILL get end stage either. In fact most of us try to reassure that you should get a biopsy and use that tool to determine if you NEED to treat now. Oh yeah I justposted that about an hour ago on another thread.
However, if you are stage 3 or 4 and choose not to treat because you have read a few select people iterate over and over that interferon will ruin your life and you are too scared - who's responsibility is it if /when they do?
Not mine. Hey we all wish we were stage 0 or 1 when diagnosed and had the luxury of waiting, but considering most folks don't find out that they have hep for 20 or 30 years (judging by our demographics and stories in here) that is not mostly the case.
Sometimes, Chicken Little, the sky is falling is correct.
However, if you are stage 3 or 4 and choose not to treat because you have read a few select people iterate over and over that interferon will ruin your life and you are too scared - who's responsibility is it if /when they do?
Not mine. Hey we all wish we were stage 0 or 1 when diagnosed and had the luxury of waiting, but considering most folks don't find out that they have hep for 20 or 30 years (judging by our demographics and stories in here) that is not mostly the case.
Sometimes, Chicken Little, the sky is falling is correct.
It is an often repeated "fact" that people in threads are continually told that they will face end stage liver disease unless they treat.
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I have only been here about a year and a half and must say I don"t believe I have read this even once stated as a fact.
I have read numerous times and have even posted myself that this is a possibility for some people,could happen .may happen .can happen(much like the stats you posted above)..however ,don"t remember seeing it posted as point of "fact" that "You will get ESLD" .
As far as the thread still being up,,I am sorry if I was mistaken on that...I thought I read where Emily had pulled the thread and had made a comment that it was closed..and from what I understood it was from no request or mocking of the thread from any member. It was her doing.
Posibly Em would comment on that .
Will
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I have only been here about a year and a half and must say I don"t believe I have read this even once stated as a fact.
I have read numerous times and have even posted myself that this is a possibility for some people,could happen .may happen .can happen(much like the stats you posted above)..however ,don"t remember seeing it posted as point of "fact" that "You will get ESLD" .
As far as the thread still being up,,I am sorry if I was mistaken on that...I thought I read where Emily had pulled the thread and had made a comment that it was closed..and from what I understood it was from no request or mocking of the thread from any member. It was her doing.
Posibly Em would comment on that .
Will
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