Re: HCV/HIV questions; liver; tests, ALA

[Guest guest]

Rod,I'm going to address some of your questions and concerns...  I will put my response under your question in BLUE.  

On Thu, Jan 13, 2011 at 3:32 AM, Rodney Gisick <rodgis44@...> wrote:

 

Ok, you fine folks who know a hell of a lot more than I at this point,

I really get your commitment to others, and that's so very comforting!

Thanks.

This is the nature of this group.  We have a great group of people here who are in all different places with their walk with Hep C.  Somehow we have managed to mesh as this one big family and everyone is supportive of everyone else.  It's a great thing to be a part of...  Glad you are here with us now!

 

Did a lot of reading today. Learned that HCV/HIV co-infection speeds

along HCV. Well, remember I'm 66. Not sure how to interpret that,

however, and probably no one else can say anything for sure, duh!Like we have all said before, it's not important how you got it..  It's what you do with the knowledge that you now have this virus that is important.  Things like taking care of your liver, making sure you don't intentionally spread the virus and raising awareness so that more people who have this virus and don't know it can have the chance to treat and clear.   

BUT, the alpha Lipoic acid (ALA) thing just discussed is interesting,

as all sources recommend it for Hep. and HIV. My connection is so

slow I can't watch the video.I haven't seen that video either and it's not something I am real familiar with so I am going to be quiet on this one! 

So, if the HIV drugs (cocktail) are hard on the liver, why not do 6

months of HCV drugs first?

Are the drugs that most of you are taking essentially peginterferon

alfa and ribavarin??? My source is a few years old, so I want to make

sure.Here is the deal with taking 6 months of treatment for Hep C before starting HIV treatment.  Depending on your genotype, more about that in a few questions, the duration of treatment for HCV is either 24 weeks or 48 weeks.  If your genotype requires 48 weeks of treatment and you only do 24 the virus can and will mutate and become harder to control.  The time frames for treatment are pretty rigid currently.  There are new drugs coming out later this year that may be able to shorten treatment for some people from 48 weeks to 24.  These drugs are new.  They have gone thru clinical trials and are being readied for release in the US.  Not sure when they will be available to you.  If the HIV cocktail works on the HCV virus as well...  sounds like a plan.  Kill 2 birds with one stone so to speak.   

I don't think my Dr. has plans to test viral RNA, or get a genotype.

I see her tomorrow and will see what she has in mind. But we have to

remember that this is the provinces here in the Philippines, there are

only 10 HIV patients on this island, and only one gastroenterologist,

no hepatologist (sp?), so there is not a good chance that the most

up-to-date info is available, I'd guess. Well, I'll see what she says

tomorrow.This is important... they need to know your genotype.  That is the ONLY way they will know the length of time needed for treatment.  It's a given.  They need this piece of information.  No two ways around it.   

And my source of info also suggested that almost 10 years ago they

recommended not only a CD4 but also a viral load. We only tested the

CD4 and no plans immediately to test viral load, which concerns me in

making a decision.Viral load is a number that can change sporadically, however, it is needed before you can start treatment.  This is how they can tell that treatment is working.  They go by log drops (which I have a horrible time explaining but Don does really good at) to find out if you are in fact responding to treatment.  If you are responding that viral load number goes down significantly within the first 8 to 12 weeks of treatment.  This is how they can tell if the treatment works.  My viral load was very high before treatment started but I tested as " undetectable " at week 6.  Meaning I was a rapid responder and 6 weeks into treatment I had knocked the virus out of the ballpark.  I still had to finish the other 42 weeks of treatment though, otherwise the virus would have come right back.  It takes awhile to get every single one of those replications of the HCV virus out of your system.  

Hope that helps..

Hugs,Teri

I'd love to have your thoughts, etc.! Thanks in advance.

Rod

[Guest guest]

TeriYou did such a great job that I'm literally left kinda speechless.Rodney, all I can say is at least go to the Gastro and learn everything possible from her/him. One of my cousins died about a year ago from the combination of HCV/HIV. However, he could not bring himself to put the drugs away and get off the streets. Still, it was terribly sad.Another thing that will become very important is - have a liver biopsy. That way the Gastro will know how much damage has been done to the liver. It'll make a lot of difference in even you deciding to treat or not to treat.Gloria

Rod,I'm going to address some of your questions and concerns... I will put my response under your question in BLUE.

On Thu, Jan 13, 2011 at 3:32 AM, Rodney Gisick <rodgis44@...> wrote:

Ok, you fine folks who know a hell of a lot more than I at this point,

I really get your commitment to others, and that's so very comforting!

Thanks.

This is the nature of this group. We have a great group of people here who are in all different places with their walk with Hep C. Somehow we have managed to mesh as this one big family and everyone is supportive of everyone else. It's a great thing to be a part of... Glad you are here with us now!

Did a lot of reading today. Learned that HCV/HIV co-infection speeds

along HCV. Well, remember I'm 66. Not sure how to interpret that,

however, and probably no one else can say anything for sure, duh!Like we have all said before, it's not important how you got it.. It's what you do with the knowledge that you now have this virus that is important. Things like taking care of your liver, making sure you don't intentionally spread the virus and raising awareness so that more people who have this virus and don't know it can have the chance to treat and clear.

BUT, the alpha Lipoic acid (ALA) thing just discussed is interesting,

as all sources recommend it for Hep. and HIV. My connection is so

slow I can't watch the video.I haven't seen that video either and it's not something I am real familiar with so I am going to be quiet on this one!

So, if the HIV drugs (cocktail) are hard on the liver, why not do 6

months of HCV drugs first?

Are the drugs that most of you are taking essentially peginterferon

alfa and ribavarin??? My source is a few years old, so I want to make

sure.Here is the deal with taking 6 months of treatment for Hep C before starting HIV treatment. Depending on your genotype, more about that in a few questions, the duration of treatment for HCV is either 24 weeks or 48 weeks. If your genotype requires 48 weeks of treatment and you only do 24 the virus can and will mutate and become harder to control. The time frames for treatment are pretty rigid currently. There are new drugs coming out later this year that may be able to shorten treatment for some people from 48 weeks to 24. These drugs are new. They have gone thru clinical trials and are being readied for release in the US. Not sure when they will be available to you. If the HIV cocktail works on the HCV virus as well... sounds like a plan. Kill 2 birds with one stone so

to speak.

I don't think my Dr. has plans to test viral RNA, or get a genotype.

I see her tomorrow and will see what she has in mind. But we have to

remember that this is the provinces here in the Philippines, there are

only 10 HIV patients on this island, and only one gastroenterologist,

no hepatologist (sp?), so there is not a good chance that the most

up-to-date info is available, I'd guess. Well, I'll see what she says

tomorrow.This is important... they need to know your genotype. That is the ONLY way they will know the length of time needed for treatment. It's a given. They need this piece of information. No two ways around it.

And my source of info also suggested that almost 10 years ago they

recommended not only a CD4 but also a viral load. We only tested the

CD4 and no plans immediately to test viral load, which concerns me in

making a decision.Viral load is a number that can change sporadically, however, it is needed before you can start treatment. This is how they can tell that treatment is working. They go by log drops (which I have a horrible time explaining but Don does really good at) to find out if you are in fact responding to treatment. If you are responding that viral load number goes down significantly within the first 8 to 12 weeks of treatment. This is how they can tell if the treatment works. My viral load was very high before treatment started but I tested as "undetectable" at week 6. Meaning I was a rapid responder and 6 weeks into treatment I had knocked the virus out of the ballpark. I still had to finish the other 42 weeks of treatment though, otherwise the virus would have come right back.

It takes awhile to get every single one of those replications of the HCV virus out of your system.

Hope that helps..

Hugs,Teri

I'd love to have your thoughts, etc.! Thanks in advance.

Rod

[Guest guest]

Thanks Gloria (head down, kicking dirt, blushing)...On Thu, Jan 13, 2011 at 8:46 PM, Gloria <gadamscan@...> wrote:

 

TeriYou did such a great job that I'm literally left kinda speechless.

Rodney, all I can say is at least go to the Gastro and learn everything possible from her/him.  One of my cousins died about a year ago from the combination of HCV/HIV.  However, he could not bring himself to put the drugs away and get off the streets.  Still, it was terribly sad.

Another thing that will become very important is - have a liver biopsy.  That way the Gastro will know how much damage has been done to the liver.  It'll make a lot of difference in even you deciding to treat or not to treat.

Gloria

 

Rod,I'm going to address some of your questions and concerns...  I will put my response under your question in BLUE.  

On Thu, Jan 13, 2011 at 3:32 AM, Rodney Gisick <rodgis44@...> wrote:

 

Ok, you fine folks who know a hell of a lot more than I at this point,

I really get your commitment to others, and that's so very comforting!

Thanks.

This is the nature of this group.  We have a great group of people here who are in all different places with their walk with Hep C.  Somehow we have managed to mesh as this one big family and everyone is supportive of everyone else.  It's a great thing to be a part of...  Glad you are here with us now!

 

Did a lot of reading today. Learned that HCV/HIV co-infection speeds

along HCV. Well, remember I'm 66. Not sure how to interpret that,

however, and probably no one else can say anything for sure, duh!Like we have all said before, it's not important how you got it..  It's what you do with the knowledge that you now have this virus that is important.  Things like taking care of your liver, making sure you don't intentionally spread the virus and raising awareness so that more people who have this virus and don't know it can have the chance to treat and clear.   

BUT, the alpha Lipoic acid (ALA) thing just discussed is interesting,

as all sources recommend it for Hep. and HIV. My connection is so

slow I can't watch the video.I haven't seen that video either and it's not something I am real familiar with so I am going to be quiet on this one! 

So, if the HIV drugs (cocktail) are hard on the liver, why not do 6

months of HCV drugs first?

Are the drugs that most of you are taking essentially peginterferon

alfa and ribavarin??? My source is a few years old, so I want to make

sure.Here is the deal with taking 6 months of treatment for Hep C before starting HIV treatment.  Depending on your genotype, more about that in a few questions, the duration of treatment for HCV is either 24 weeks or 48 weeks.  If your genotype requires 48 weeks of treatment and you only do 24 the virus can and will mutate and become harder to control.  The time frames for treatment are pretty rigid currently.  There are new drugs coming out later this year that may be able to shorten treatment for some people from 48 weeks to 24.  These drugs are new.  They have gone thru clinical trials and are being readied for release in the US.  Not sure when they will be available to you.  If the HIV cocktail works on the HCV virus as well...  sounds like a plan.  Kill 2 birds with one stone so

to speak.   

I don't think my Dr. has plans to test viral RNA, or get a genotype.

I see her tomorrow and will see what she has in mind. But we have to

remember that this is the provinces here in the Philippines, there are

only 10 HIV patients on this island, and only one gastroenterologist,

no hepatologist (sp?), so there is not a good chance that the most

up-to-date info is available, I'd guess. Well, I'll see what she says

tomorrow.This is important... they need to know your genotype.  That is the ONLY way they will know the length of time needed for treatment.  It's a given.  They need this piece of information.  No two ways around it.   

And my source of info also suggested that almost 10 years ago they

recommended not only a CD4 but also a viral load. We only tested the

CD4 and no plans immediately to test viral load, which concerns me in

making a decision.Viral load is a number that can change sporadically, however, it is needed before you can start treatment.  This is how they can tell that treatment is working.  They go by log drops (which I have a horrible time explaining but Don does really good at) to find out if you are in fact responding to treatment.  If you are responding that viral load number goes down significantly within the first 8 to 12 weeks of treatment.  This is how they can tell if the treatment works.  My viral load was very high before treatment started but I tested as " undetectable " at week 6.  Meaning I was a rapid responder and 6 weeks into treatment I had knocked the virus out of the ballpark.  I still had to finish the other 42 weeks of treatment though, otherwise the virus would have come right back.

 It takes awhile to get every single one of those replications of the HCV virus out of your system.  

Hope that helps..

Hugs,Teri

I'd love to have your thoughts, etc.! Thanks in advance.

Rod