long term side effects after taking pegasy/ribrivan

[beachmomma04]

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

[willbb]

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

[nygirl7]

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.

[Willy50]

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

[orphanedhawk]

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"

[nygirl7]

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.

[willbb]

It is an often repeated "fact" that people in threads are continually told that they will face end stage liver disease unless they treat.
--------------------------------------------------------------------------------------------------
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