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Best Clinical Trials for HCV genotype 1b
Has any body been getting sucessful treatment for their HCV? I 've had the HCV antibodies got 20 years,,, never had a symptoms until i developed anemia and heart trouble. My GI doctor says he can't treat me now... maybe in another 2 years something might be worth trying.
Shopping for a new doctor and a viable treatment.
Shopping for a new doctor and a viable treatment.
Sorry I wouldn't know about specialist in the TN area as I am a loooong way from there. The way it works where I come from is your primary doc or (family physician as we call them were I am) would refer you to a specialist,,so I guess that is were you should start
I don"t know if the link below will help,but maybe something for you
Good Luck
Will ....... www.ucomparehealthcare.com › Doctors › Tennessee (TN) -
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Are there any worthwhile experts on HCV genotype 1b in the Memphis TN area? I have asked around , but have really come up short on Hepatologists. This GI docyotrs that are good...are good at making money wirh endoscopy procedures. Is there a descent website that can direct me to and expert?
Well, the viral load didn't show up until after I had some life threatening complications after an open hysterectomy lasy July. I was tested Dec 2010.... and abandoned by the end of January 2011. "
it sounds to me like you somehow were infected during the hysterectomy not way back when as you had so many negative PCRs. With HCV infection the virus is 'active' during the first 6 months - it is during this time that it will show you have the antibodies (always) but you can kill the disease (20% of people do). After the six months the disease is 'chronic' during this time you cannot get rid of it any longer.
Did they ever give you the actual PCR or just the antibody test when you were pregnant? You said no evidence of infection which lead me to believe they might have given you the pcr.
If they did and it was undetectible that would be sort of good news because then you havent really had the disease very long and you won't have very much liver damage.
Since you already are anemic and do have heart issues that would rule you out as a candidate right now so I'm hoping somehow you just got this disease - it will give you more time for the new new meds (not the PIs they still require the use of interferon and ribavirin which is what you cannot take now) to come out.
Good luck.
I'm sorry if I got some of this confused the verbiage was a big confusing for me "evidence = Undetectible or assymptomatic".
You should get the biopsy to determine how much liver damage you have then you will know how crucial it is for you to treat or not.
it sounds to me like you somehow were infected during the hysterectomy not way back when as you had so many negative PCRs. With HCV infection the virus is 'active' during the first 6 months - it is during this time that it will show you have the antibodies (always) but you can kill the disease (20% of people do). After the six months the disease is 'chronic' during this time you cannot get rid of it any longer.
Did they ever give you the actual PCR or just the antibody test when you were pregnant? You said no evidence of infection which lead me to believe they might have given you the pcr.
If they did and it was undetectible that would be sort of good news because then you havent really had the disease very long and you won't have very much liver damage.
Since you already are anemic and do have heart issues that would rule you out as a candidate right now so I'm hoping somehow you just got this disease - it will give you more time for the new new meds (not the PIs they still require the use of interferon and ribavirin which is what you cannot take now) to come out.
Good luck.
I'm sorry if I got some of this confused the verbiage was a big confusing for me "evidence = Undetectible or assymptomatic".
You should get the biopsy to determine how much liver damage you have then you will know how crucial it is for you to treat or not.
Thank you for your reply Susie. I have not asked for my cardiologist for his opinion as yet. He, unfortunately, reads reports of tests and doesn't look at the patient. But I do know I have problems with excercise tolerance. I can walk a mile or two and not have any problems, cardiac-wise, but I can't play softball/volleyball for more then 10 minutes before I get short of breath and heart rhythm trouble accompanied by chest pain when my Hct is ~33.
That sound exciting Suzyq. Did you also have the HCV genotype 1b? What are the requirements/exclusions for the trial you're on?
Looking for guidance/direction
Looking for guidance/direction
Thank you for your reply Trish. I'm not sure what you mean by getting a bump... but that sounded positive!
I never had a liver biopsy done. Mostly because I was dx with HCV in ~1991 when I tried to donate blood. And at that time I was in the heart of NYC, and was not going become a geunipig for all the teaching hospitals in the area. I had no evidence of infection at that time.
1995 & 1998 I went through another battery of tests, since I was pregnant with HCV antibodies. No evidence of infection. As I recall the doctors said, "this is just another antibody you can pass to your child."
In 1999, pregnant again, the doctors changed their tune. When I delivered my 3rd baby, the doctors took her away from me and said I couldn't breast feed my child. So, once again I went thru the HCV battery of testing. Every thing was once again undetectable for an active virus. My pediatrician told me "grab your baby and run home"
In 2001, I had a follow up visit with a Hepatologist who said I had no evidence of the virus and I might be one of the lucky ones that clear the virus on their own.
Well, the viral load didn't show up until after I had some life threatening complications after an open hysterectomy lasy July. I was tested Dec 2010.... and abandoned by the end of January 2011.
Any directions/guidance on treatment options are welcomed.
I never had a liver biopsy done. Mostly because I was dx with HCV in ~1991 when I tried to donate blood. And at that time I was in the heart of NYC, and was not going become a geunipig for all the teaching hospitals in the area. I had no evidence of infection at that time.
1995 & 1998 I went through another battery of tests, since I was pregnant with HCV antibodies. No evidence of infection. As I recall the doctors said, "this is just another antibody you can pass to your child."
In 1999, pregnant again, the doctors changed their tune. When I delivered my 3rd baby, the doctors took her away from me and said I couldn't breast feed my child. So, once again I went thru the HCV battery of testing. Every thing was once again undetectable for an active virus. My pediatrician told me "grab your baby and run home"
In 2001, I had a follow up visit with a Hepatologist who said I had no evidence of the virus and I might be one of the lucky ones that clear the virus on their own.
Well, the viral load didn't show up until after I had some life threatening complications after an open hysterectomy lasy July. I was tested Dec 2010.... and abandoned by the end of January 2011.
Any directions/guidance on treatment options are welcomed.
Hi James-
Thank you for your reply. And to all the others who have responded [:)]
As everyone here does, I have had a complex set of health issues that led me to this point of reaching out on my own to find help. My GI doctor did do the'HCV RNA by PCR' test, which validated my active HCV.
My HCV RNA PCR Quantity was 2,386,738 IU/mL
My Viral Log = 6.378 LOG IU/mL
Converting the IU/mL to copies results in 13,890,815.16 copies/mL
The GI doctor did an US of my abd/Liver which demonstrated good blood flow thruout my liver. Never had a liver bx done... I would definitely consider that when I find a doctor who knows how to treat my HCV infection.
The above tests were done at the end of December 2010.
My GI doctor wroteon my chart " Regarding her Hepatitis C she is not a ood candidatr for treatment now.... most experts areadvocating holdong off now on treating genotype 1 patients until protease inhibitors become available within the next couple of years."
Thank you for your reply. And to all the others who have responded [:)]
As everyone here does, I have had a complex set of health issues that led me to this point of reaching out on my own to find help. My GI doctor did do the'HCV RNA by PCR' test, which validated my active HCV.
My HCV RNA PCR Quantity was 2,386,738 IU/mL
My Viral Log = 6.378 LOG IU/mL
Converting the IU/mL to copies results in 13,890,815.16 copies/mL
The GI doctor did an US of my abd/Liver which demonstrated good blood flow thruout my liver. Never had a liver bx done... I would definitely consider that when I find a doctor who knows how to treat my HCV infection.
The above tests were done at the end of December 2010.
My GI doctor wroteon my chart " Regarding her Hepatitis C she is not a ood candidatr for treatment now.... most experts areadvocating holdong off now on treating genotype 1 patients until protease inhibitors become available within the next couple of years."
The problem for many cardiac patients who are hep C positive, is that they cannot take ribavirin. Ribavirin causes more anemia and it makes the heart work harder. I am guessing that is why your doc said no treatment for you. I would find out from your cardiologist if
ribavirin is contraindicated in your case. You might want to consider one of the clinical trials that are interferon and ribavirin free.
ribavirin is contraindicated in your case. You might want to consider one of the clinical trials that are interferon and ribavirin free.
I have going to this one research clinic and they've have great results with several types. They are using experimental drugs. It's kind of like a STUDY. I went from over 7 mil viral load to 222 in a few months. I am not undetected. I should be getting some sort of payment after my treatment/cure for being a Guinea pig. September here I come. Wish me luck.
Thanks for the bump, James....seemed we all missed this one.
Tibbar - from the things you've said, very glad you are seeking out a new doctor.
I'm wondering if you've ever had a biopsy? If yes, when was the last time? Did your doc ever discuss treatment with you?
Many people have had successful treatment for their Hep C. As James said, there are also new drugs coming available soon that promise much better rates of success than we've seen with what we currently have for treatment.
Good luck with finding that new doc - hope you'll tell us how it's going.
Trish
Tibbar - from the things you've said, very glad you are seeking out a new doctor.
I'm wondering if you've ever had a biopsy? If yes, when was the last time? Did your doc ever discuss treatment with you?
Many people have had successful treatment for their Hep C. As James said, there are also new drugs coming available soon that promise much better rates of success than we've seen with what we currently have for treatment.
Good luck with finding that new doc - hope you'll tell us how it's going.
Trish
Antibodies say you were exposed to HCV. In 20% of people their immune system fights off the virus. You may have been lucky 20 years ago but it's not something to wonder about. You will need a blood test called " HCV RNA by PCR." That test will tell if you have the active virus.
Symptoms ... anemia, maybe ... but I don't think heart trouble is related to liver disease. No doubt others will address this with greater confidence than I.
You have Genotype 1b? Wow! hard to believe your doc said what he did. There are several drugs coming out around mid-year which nearly double success rates. Find that new doc, this one doesn't seem too interested.
Hopefully this post will bump you up the list.
All the best.
Symptoms ... anemia, maybe ... but I don't think heart trouble is related to liver disease. No doubt others will address this with greater confidence than I.
You have Genotype 1b? Wow! hard to believe your doc said what he did. There are several drugs coming out around mid-year which nearly double success rates. Find that new doc, this one doesn't seem too interested.
Hopefully this post will bump you up the list.
All the best.
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Hi there.... given the test you had done in Dec.that showed you do indeed have active HCV.you should be under the care of a Hepatologist or a G.I. that is knowledgeable on matters of HCV.
A good Hepa or G.I .would then order a biopsy to be able to ascertain the need for treatment. If the damage to your liver is minimal it would probally be recommended to wait for more efficient meds to be approved(in the U.S. later this year).
Have heart function tests been done ... as you say you have heart trouble? Is this the reason your doctor said you were not a candidate for treatment?
Again ..to start the process you need to be seen by a Hepa or G.I.
Good luck
WILL