Aa
Tx Niave, Geno 3, some questions
Hi,
I've a 36yr old female, diagnosed in 2007 but likely infected for 20yrs. Am Genotype 3 with 475,000 viral load, and am co-infected with a low VL of 30 HBV. We don't know if the HCV is suppressing the HBV or if I'm an inactive carrier. Waiting to do my first Firbosure/ultrasound when I can get an appt with my liver doctor (takes months to get an appt., and don't want to fixate on the results until I can talk to her, so I'm waiting to test).
I see Misha Cohen at Chicken Soup Chinese Medicine (well known HCV Chinese medicine doctor) who thinks I should treat if I'm gentype 3. My liver doc said that if things continue to look good for me (few side effects, Alt is 41, high blood cell counts, etc...) that she thinks I should wait. She thinks that we'll have anti-virals on the market in 2014.
My Chinese Medicine doc said that is highly optimistic (especially for geno 3) and that she thinks it will be more like 5yrs, and even then we'll be using an interferon/AV combo. I'm really trying to avoid the interferon tx.
I've read some online her about the antiviral trials. I've tried to get in one, but they all won't accept me b/c I'm coinfected with the HBV. Even though it looks like my HBV is inactive, they don't want it to scew their test results. Sigh.
I can't seem to find any answers online about when we will have a purely AV tx available. 2yrs? 5yrs? More? I know that this is a HUGE question with many variables, but should I treat or wait? What would you do?
I've a 36yr old female, diagnosed in 2007 but likely infected for 20yrs. Am Genotype 3 with 475,000 viral load, and am co-infected with a low VL of 30 HBV. We don't know if the HCV is suppressing the HBV or if I'm an inactive carrier. Waiting to do my first Firbosure/ultrasound when I can get an appt with my liver doctor (takes months to get an appt., and don't want to fixate on the results until I can talk to her, so I'm waiting to test).
I see Misha Cohen at Chicken Soup Chinese Medicine (well known HCV Chinese medicine doctor) who thinks I should treat if I'm gentype 3. My liver doc said that if things continue to look good for me (few side effects, Alt is 41, high blood cell counts, etc...) that she thinks I should wait. She thinks that we'll have anti-virals on the market in 2014.
My Chinese Medicine doc said that is highly optimistic (especially for geno 3) and that she thinks it will be more like 5yrs, and even then we'll be using an interferon/AV combo. I'm really trying to avoid the interferon tx.
I've read some online her about the antiviral trials. I've tried to get in one, but they all won't accept me b/c I'm coinfected with the HBV. Even though it looks like my HBV is inactive, they don't want it to scew their test results. Sigh.
I can't seem to find any answers online about when we will have a purely AV tx available. 2yrs? 5yrs? More? I know that this is a HUGE question with many variables, but should I treat or wait? What would you do?
BTW, what's the difference between FibroScan and Fibrosure?
Yeah, I stated posting here 8yrs ago but was so overwhelmed be the diease that I couldn't bear to read the posts. But, here I am again 'hopefully' ready to move forward.
I'm suprised that we're the only recovering addicts - I mean, 80-90% of addicts/those is recovery from IV drug use have HCV, so in my experience, MOST heppers are in the same category!
I feel relieved to know that my doctors have a good reputation. I HATE the fact that I'm the only one who can make the decision to tx or not, because that's one decision I just can't seem to make!
Shoot, I had NO IDEA that my insurance may not even pay if I'm not sick enough. Now I'm really freaked. I'm totally screwed if they won't b/c of the HCV/trial thing. I can't believe that we still live in a world where people due b/c they cannot afford medical care.
I'm suprised that we're the only recovering addicts - I mean, 80-90% of addicts/those is recovery from IV drug use have HCV, so in my experience, MOST heppers are in the same category!
I feel relieved to know that my doctors have a good reputation. I HATE the fact that I'm the only one who can make the decision to tx or not, because that's one decision I just can't seem to make!
Shoot, I had NO IDEA that my insurance may not even pay if I'm not sick enough. Now I'm really freaked. I'm totally screwed if they won't b/c of the HCV/trial thing. I can't believe that we still live in a world where people due b/c they cannot afford medical care.
I am always amazed at what a small world it it, also. I think it might also be the area we live in, here near the S.F. Bay. We can take the BART train, so we all hop around, from Berkeley, to Oakland, to San Francisco. We have great weather, and so many different things to do. The down side is, the cost of living is very high here~
Oh, one more thing I might add, I imagine, statistically, we have a ton of Heppers here in Oakland, also. I have lost a few friends, to the disease, but these were people who were unable to get clean and sober, unfortunately.
Oh, one more thing I might add, I imagine, statistically, we have a ton of Heppers here in Oakland, also. I have lost a few friends, to the disease, but these were people who were unable to get clean and sober, unfortunately.
Hey I thought I was the only recovering addict on here. I thought I felt a sense of kindred spirit with you from the very beginning. Anywho, I just wanted to point out that unfortunately addiction (like the Hepatitis C Virus) is non-discriminating and not very class conscious (or is that conscientious?)
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I am impressed how much research and leg work you have done! Then I started reading your posts and realized you have been around for longer than most of us. I read the post were you said you were scared of getting a biopsy due to being manhandled by doctors over the years and quite honestly many of us had the same fear. It sounds as if you have found a group of doctors/clinicians you feel comfortable with and when you have the time and resources I encourage you to get a biopsy. Maybe by the time that happens there will be more information of the availability of Interferon-free treatment.
This has been an interesting thread - just how some members actually know the doctors you mention and have met them as well. It really is a small world.
This has been an interesting thread - just how some members actually know the doctors you mention and have met them as well. It really is a small world.
Oh, hi again : ) That is great that you are an advocate. I think I may have hurt Willb's feelings, when I used the term, "middle-class types", so I should be more careful while discussing stuff like class differences, etc.
I actually did pick OASIS, because it is a short distance form my house,as well. And I totally agree with you, about Highland, I would NEVER go there myself. One friend was mugged in front of there, recently, and another friend of mine died there,(last year) when she went in, with a simple case of pneumonia. They performed some procedure on her, that ended up breaking her ribs, and I think that's what killed her.
I'm in the SEIU Union, so OASIS just happened to take my Medical Insurance, so it was just a stroke of luck.
Both my husband and my best-friend have Hep C (he's genotype 1a, and she's genotype 2 ) and neither of them will get a biopsy either, and I was scared to, until last Dec, when I had the FibroSure scare.
I really felt super healthy, until I started going into menopause, at age 47 years. I'm the only person I know, who felt symptomatic at Stage 2, but I wish I had paid more attention to my Labs, and had learned how to read them. Now I do know. When I went to Doctor Jay last March, my platelets were borderline low, at 150(000). But when I went back in October, they were below normal, at 120. Since the treatment also lowers platelets, I rushed in to treat, before the platelets slipped even lower, and I was terrified!
I am a health nut, and had been clean and sober (except for a tiny bit of pot) for 11 yrs when symptoms cropped up, so I was very self aware. I began feeling over-heated, during hot weather, and I had always enjoyed the hot weather before. My sweat began to feel sticky, and my pee smelled like ammonia, and during a heat-wave, I would become exhausted and disoriented. The problem is, as you get older, you think, well, maybe this is how it feels to be old...
The good thing is you are looking into options, at age 36 yrs. I dont think the Insurance Companies want to pay, unless we are at least a Stage 2, and biopsys can be off by one stage. The fact that Dr Jays' FibroSure test had me as a Stage 4 probably helped my case!
I actually did pick OASIS, because it is a short distance form my house,as well. And I totally agree with you, about Highland, I would NEVER go there myself. One friend was mugged in front of there, recently, and another friend of mine died there,(last year) when she went in, with a simple case of pneumonia. They performed some procedure on her, that ended up breaking her ribs, and I think that's what killed her.
I'm in the SEIU Union, so OASIS just happened to take my Medical Insurance, so it was just a stroke of luck.
Both my husband and my best-friend have Hep C (he's genotype 1a, and she's genotype 2 ) and neither of them will get a biopsy either, and I was scared to, until last Dec, when I had the FibroSure scare.
I really felt super healthy, until I started going into menopause, at age 47 years. I'm the only person I know, who felt symptomatic at Stage 2, but I wish I had paid more attention to my Labs, and had learned how to read them. Now I do know. When I went to Doctor Jay last March, my platelets were borderline low, at 150(000). But when I went back in October, they were below normal, at 120. Since the treatment also lowers platelets, I rushed in to treat, before the platelets slipped even lower, and I was terrified!
I am a health nut, and had been clean and sober (except for a tiny bit of pot) for 11 yrs when symptoms cropped up, so I was very self aware. I began feeling over-heated, during hot weather, and I had always enjoyed the hot weather before. My sweat began to feel sticky, and my pee smelled like ammonia, and during a heat-wave, I would become exhausted and disoriented. The problem is, as you get older, you think, well, maybe this is how it feels to be old...
The good thing is you are looking into options, at age 36 yrs. I dont think the Insurance Companies want to pay, unless we are at least a Stage 2, and biopsys can be off by one stage. The fact that Dr Jays' FibroSure test had me as a Stage 4 probably helped my case!
Doctor's can't know when the FDA will approve meds. They can have an educated guess, but that's it.
Predictions are they'll be available by 2015, but nobody knows for sure.
Dr. Frederick told me the PIs would be available almost 2 years before they were. Everyone was frustrated that it took that long.
My advice to anyone with minimum or no liver damage is to wait if you can.
The interferon free orals are the future of hep C tx.
Good luck..
Predictions are they'll be available by 2015, but nobody knows for sure.
Dr. Frederick told me the PIs would be available almost 2 years before they were. Everyone was frustrated that it took that long.
My advice to anyone with minimum or no liver damage is to wait if you can.
The interferon free orals are the future of hep C tx.
Good luck..
I may have to wait a few months to get the ultrasound/Fibrosure. Not only b/c they are expensive and I don't have the money - but also b/c I was hit by a car in Nov while crossing the street. I've been going to doctor's appts like every other day for months. I've been told that I need to put some things on hold. Misha thinks I should get my other things in order first, but she thinks I should treat.
Bzowej said that if all comes back well on my tests, she thinks I should wait to tx, since SOC is so intensive. She said that the very 1st patient she had ended up getting Rhumetoid (spelling) arthritis from the interferon, which turned on a gene for that disease. But, she also said that she thinks AV tx will be around in 2014, and Misha said that is highly unlikely. On the otherh and, Bzowej just completed a 7977/interferoin/riba trial, so maybe she knows more about it?
In 2004 when I was dx, it said that I had the core antigen for HBV but no antibodies. In Sept I had my viral load test, which came back as super low, but did not retest for the antibody.
I agree that an addict or ex addict can be middle OR upper class. I've been on MMT and clean from heroin for 12yrs now and am definitely middle class. I was a homeowner and business owner when I was using, as well (though we rent now). I am also an advocate - I am the Northern CA director of ARM (Advocates for Recovery Through Medicine) and that was how I heard of Diane - I met her in 2006 at AATOD.
Bzowej said that if all comes back well on my tests, she thinks I should wait to tx, since SOC is so intensive. She said that the very 1st patient she had ended up getting Rhumetoid (spelling) arthritis from the interferon, which turned on a gene for that disease. But, she also said that she thinks AV tx will be around in 2014, and Misha said that is highly unlikely. On the otherh and, Bzowej just completed a 7977/interferoin/riba trial, so maybe she knows more about it?
In 2004 when I was dx, it said that I had the core antigen for HBV but no antibodies. In Sept I had my viral load test, which came back as super low, but did not retest for the antibody.
I agree that an addict or ex addict can be middle OR upper class. I've been on MMT and clean from heroin for 12yrs now and am definitely middle class. I was a homeowner and business owner when I was using, as well (though we rent now). I am also an advocate - I am the Northern CA director of ARM (Advocates for Recovery Through Medicine) and that was how I heard of Diane - I met her in 2006 at AATOD.
Hey guys - I actually have gone to the Tuesday OASIS meeting. Dr. Sylvestre is a medical genious, but I feel that she doesn't really like me. I went to the group to talk to her, signed the list for a consult, but she told me that she wouldn't see me that day and that OASIS didn't have money to take me on. She said that she'd see me at Highland, but I've heard REALLY bad things about Highland Hosp, which rates as one of the lowest in the country.
She also told me that she wouldn't even take me on unless I had a biopsy. That's fair. She has a long list of people who want her free tx and she needs to pick and chose. For me, I don't drive and can walk to OASIS, but not Highland. So I was reallt bummed to hear that she would only tx me at Highland. I called Highland and tried to get enrolled, but they kept losing my paperwork, not calling me back, etc....
Misha told me that Dr. Bzowej was amazing, so I went to her. I need a doctor that is warm and does some hand holding, and Natalie was great. I think her comments on the biopsy were based on both my fear of the procedure, as well as the fact that it is an invasive procedure - that's a fact. She told me that the Fibrosure was only accurate if my grading came back as 1 or 4, but if it came back as 2 or 3 she would recommend a biopsy. She also told me that the test had not been tried for Hep B. She was not concerned about infection, just explained that it was an invasive procedure with risk of internal bleeding. She actually does the biopsy herself, which I really liked. It helps when you can trust the person.
However, I don't really have the money to treat, as my insurance only covers 50%. I am also on MMT. My husband and I own a business as sole proprietors, so though the income goes through us personally on our taxes, so does all of our business debt. We also put out about $1,700 each month for medical. When I apply to financial aid, they see a monthly income for by hubby and I of $7,000 - they don't see that we actually live off of $2,500 (in the bay area!:) So we're usually excluded from aid programs. I will look into the charity program at CPMC - I didn't know that there was one. Maybe it will help that I'm not able to qualify for a trial.
Dr. Jay was really kind and I did like him a lot. He just said that the medical companies wouldn't accept me b/c of the HBV. He said he'd definitely treat me on either SOC or AV if I cleared the B.
She also told me that she wouldn't even take me on unless I had a biopsy. That's fair. She has a long list of people who want her free tx and she needs to pick and chose. For me, I don't drive and can walk to OASIS, but not Highland. So I was reallt bummed to hear that she would only tx me at Highland. I called Highland and tried to get enrolled, but they kept losing my paperwork, not calling me back, etc....
Misha told me that Dr. Bzowej was amazing, so I went to her. I need a doctor that is warm and does some hand holding, and Natalie was great. I think her comments on the biopsy were based on both my fear of the procedure, as well as the fact that it is an invasive procedure - that's a fact. She told me that the Fibrosure was only accurate if my grading came back as 1 or 4, but if it came back as 2 or 3 she would recommend a biopsy. She also told me that the test had not been tried for Hep B. She was not concerned about infection, just explained that it was an invasive procedure with risk of internal bleeding. She actually does the biopsy herself, which I really liked. It helps when you can trust the person.
However, I don't really have the money to treat, as my insurance only covers 50%. I am also on MMT. My husband and I own a business as sole proprietors, so though the income goes through us personally on our taxes, so does all of our business debt. We also put out about $1,700 each month for medical. When I apply to financial aid, they see a monthly income for by hubby and I of $7,000 - they don't see that we actually live off of $2,500 (in the bay area!:) So we're usually excluded from aid programs. I will look into the charity program at CPMC - I didn't know that there was one. Maybe it will help that I'm not able to qualify for a trial.
Dr. Jay was really kind and I did like him a lot. He just said that the medical companies wouldn't accept me b/c of the HBV. He said he'd definitely treat me on either SOC or AV if I cleared the B.
Thanks, I will Can-Do. I had just wanted to check with my group, to make sure it was okay, since the support group always starts with saying, "this meeting requires anonymity, and what goes on in this room, stays in this room", etc.
But I was told that the clinic (OASIS) has a twitter account, and a website, etc, plus, we are in the process of making another educational video, which will soon be out, on YT, and the old-timers in the group thought it would be okay to mention, on The Internet, as well. I just wanted to be careful, because I kind of have this bad habit of "putting my foot in my mouth" or "blabbing" about the wrong stuff.
But I was told that the clinic (OASIS) has a twitter account, and a website, etc, plus, we are in the process of making another educational video, which will soon be out, on YT, and the old-timers in the group thought it would be okay to mention, on The Internet, as well. I just wanted to be careful, because I kind of have this bad habit of "putting my foot in my mouth" or "blabbing" about the wrong stuff.
Agree with Doc Misha that a short course of IFN probably carries fewer side effects than a longer course. There are also tools you can use along the way to help you decide how long a tx you need or if your chances of clearing are so low that you might want to stop and wait for other tx options.
http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract
As for biopsy, the only stat I can remember is back when ultrasound guided hadn't yet become standard of care. That was aprox. one in 5,000 chance of complications. It's probaly gotten better with more general use of imaging for the procedure. Still, it's your call.
As for doctor/patient relations, some find the best doctor possible and then follow his directions to the letter, others of us have had to take whoever was available and do our own research.
People have cleared both ways.
http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract
As for biopsy, the only stat I can remember is back when ultrasound guided hadn't yet become standard of care. That was aprox. one in 5,000 chance of complications. It's probaly gotten better with more general use of imaging for the procedure. Still, it's your call.
As for doctor/patient relations, some find the best doctor possible and then follow his directions to the letter, others of us have had to take whoever was available and do our own research.
People have cleared both ways.
"My Doctor also specializes in treating Homeless people, who have Hep C. That's one of the reasons I love her, and I also work with homeless people as well, so her and I share many same interests."
OH has a thread where many of us shared with all their good doctors, since this is a support forum it would be nice of you to share this.
OH has a thread where many of us shared with all their good doctors, since this is a support forum it would be nice of you to share this.
I saw a doctor who felt biopsies were invasive, which they are. There is a chance of problems, slight but possible. If you have trouble with needles and are so upset, then yes, maybe a biopsy isn't a good idea for you.
I know of Dr. Natalie Bzowej , she works at the same clinic I go to, though I see Dr. Frederick.
It sounds like you've already looked into the charity care program at CPMC, if not you should.
And what about contacting the pegasys assistance program directly ? Ask them if you are eligible to get free meds. 886-681-3329
Get proactive.
I know of Dr. Natalie Bzowej , she works at the same clinic I go to, though I see Dr. Frederick.
It sounds like you've already looked into the charity care program at CPMC, if not you should.
And what about contacting the pegasys assistance program directly ? Ask them if you are eligible to get free meds. 886-681-3329
Get proactive.
Ah, thanks, rivll....I really hate conflict/fighting, also. I realize I have the kind of personality, where I think and speak very quickly, and need to make a concerted effort to slow down!
I get over-zealous with the biopsy issue, but looking back, I felt exactly like how the OP did, when I was 36 yrs old, and also felt very healthy.
I didn't start feeling unhealthy until I was around 47 yrs old, but everybody is so different, with this Hep C thing. I wish my Primary Care Physician had been more bossy with me, about getting some treatment, but there's no use "shoulding" on myself.
Hope you are enjoying this delicious and balmy weather~
I get over-zealous with the biopsy issue, but looking back, I felt exactly like how the OP did, when I was 36 yrs old, and also felt very healthy.
I didn't start feeling unhealthy until I was around 47 yrs old, but everybody is so different, with this Hep C thing. I wish my Primary Care Physician had been more bossy with me, about getting some treatment, but there's no use "shoulding" on myself.
Hope you are enjoying this delicious and balmy weather~
I am sorry for your experience. It is very weird, just the opposite of my experience. My enzyme levels were very high too, that didn't concern him. He really fought to get me in, the Drug company didn't want to take a cirrhotic. They kept retaking my labs to get me to a level the Research Center back East would accept. He really tried hard...He is the Director of Medical Research in S.F. of course he has to go by the rules of the company and yes all the drug companies care about their research first-Dr. Sylvestre is awesome but she is a Doc who does Treatment NOT a research study so of course her patient will be first.
Anyway, I don't want to fight we all have our stories and our pain and triumphs-May you and I and My Thoughts and the entire forum find health and peace and continue to be helpful to each other.
Anyway, I don't want to fight we all have our stories and our pain and triumphs-May you and I and My Thoughts and the entire forum find health and peace and continue to be helpful to each other.
Still trying to answer the question though....many "middle-class" types are addicts, ex-addicts, non-addicts.
Me, myself, my addiction ended in homelessness, but that was 14 yrs ago. I have struggled my way back up, to the poverty line....I'm "a renter"
My Doctor also specializes in treating Homeless people, who have Hep C. That's one of the reasons I love her, and I also work with homeless people as well, so her and I share many same interests. I just think it helps to get along well with my Treatment Doc
Me, myself, my addiction ended in homelessness, but that was 14 yrs ago. I have struggled my way back up, to the poverty line....I'm "a renter"
My Doctor also specializes in treating Homeless people, who have Hep C. That's one of the reasons I love her, and I also work with homeless people as well, so her and I share many same interests. I just think it helps to get along well with my Treatment Doc
Ahh, another person from the Bay Area~ Yeah, Dr Jay had me do the FibroSure test last October...and since it clearly showed I had cirrhosis, he said I didn't need to get a biopsy.
At first, he reassured me that he would "cure" me, both last March, and then last October, but then, my enzymes were too high, to be in his study. But he has cured many people, it is true.
Dr Jay never did suggest I get treated, once his nurse told me I had cirrhosis( I didn't). He just said, "do you have medical Insurance?" I felt like I had been slapped in the face.
At first, he reassured me that he would "cure" me, both last March, and then last October, but then, my enzymes were too high, to be in his study. But he has cured many people, it is true.
Dr Jay never did suggest I get treated, once his nurse told me I had cirrhosis( I didn't). He just said, "do you have medical Insurance?" I felt like I had been slapped in the face.
ahhhHahha...Will. I just didn't want to scare her off with the actual word, "addict".
My Doctor is an Internal Medicine Doctor, and also an Addiction Psychiatrist, and her field of interest is treating addiction. That is also
one of my interests as well.
I just realized, after I asked the OP, what kind of Doctor was hers...she had said she was one of the Trial Doctors.(we both live ner S.F.)
The thing I didn't like about the other Trial Doctor, (Doctor Jay, as we call him) is that he seemed much more interested in his Research Study, then in my health. My Doctor is Dr Diana Sylvestre, and I'm just really impressed with her. She is willing to treat people who dont normally get treatment, from other Doctors. People come from all around, even from different States, to have a consultation with her, she is very good at what she does, and I think the support group and lecture she runs, is one of the best I've ever been to~
My Doctor is an Internal Medicine Doctor, and also an Addiction Psychiatrist, and her field of interest is treating addiction. That is also
one of my interests as well.
I just realized, after I asked the OP, what kind of Doctor was hers...she had said she was one of the Trial Doctors.(we both live ner S.F.)
The thing I didn't like about the other Trial Doctor, (Doctor Jay, as we call him) is that he seemed much more interested in his Research Study, then in my health. My Doctor is Dr Diana Sylvestre, and I'm just really impressed with her. She is willing to treat people who dont normally get treatment, from other Doctors. People come from all around, even from different States, to have a consultation with her, she is very good at what she does, and I think the support group and lecture she runs, is one of the best I've ever been to~
It is not helpful to criticize a Dr. whom a person trusts and relies upon.
It is also disrespectful to the original poster to blast through her fears as if they don't matter.
I am no longer afraid of having a biopsy (The Dr. in Oakland didn't want to do one either cause I am a "bleeder", she did an ultrasound.) but I have heard too that biopsies are not always safe. Like I said, if there is an ultrasound to guide the Dr. doing the biopsy, I think it is pretty safe now.
Everyone is different and many can tolerate SOC. I happen to be one that would not have tolerated it. Riba is tearing me up heart and soul right now-but that is me. The fact that you are managing it well is good, I mean that, but everyone is different. That is not to say I think My Thoughts shouldn't go with treatment, but she is currently exploring ideas and options. When her results come in (Fibrosure scans are generally highly reliable)
Interesting about Dr. Jay-he was adamant about doing a biopsy, didn't have a fibrosure/scan in his clinic when I was there last Fall.
In the end, he accepted the ultrasound from my clinic in Oakland. There is a long story behind all that but not for this post.
Anyway, Dr. Jay has been awesome. I am sorry uou didn't have the same experience.
It is also disrespectful to the original poster to blast through her fears as if they don't matter.
I am no longer afraid of having a biopsy (The Dr. in Oakland didn't want to do one either cause I am a "bleeder", she did an ultrasound.) but I have heard too that biopsies are not always safe. Like I said, if there is an ultrasound to guide the Dr. doing the biopsy, I think it is pretty safe now.
Everyone is different and many can tolerate SOC. I happen to be one that would not have tolerated it. Riba is tearing me up heart and soul right now-but that is me. The fact that you are managing it well is good, I mean that, but everyone is different. That is not to say I think My Thoughts shouldn't go with treatment, but she is currently exploring ideas and options. When her results come in (Fibrosure scans are generally highly reliable)
Interesting about Dr. Jay-he was adamant about doing a biopsy, didn't have a fibrosure/scan in his clinic when I was there last Fall.
In the end, he accepted the ultrasound from my clinic in Oakland. There is a long story behind all that but not for this post.
Anyway, Dr. Jay has been awesome. I am sorry uou didn't have the same experience.
I
we have a very mixed group, at the support group, not just addicts, but plenty of ex-addicts, middle-class types, people who caught Hep from transfusions
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Wondering..can a "middle class type" be an addict or an ex-addict or is that just the transfusion group??
we have a very mixed group, at the support group, not just addicts, but plenty of ex-addicts, middle-class types, people who caught Hep from transfusions
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Wondering..can a "middle class type" be an addict or an ex-addict or is that just the transfusion group??
Ahh, sorry for all the typos, think I'm going blind~ But yeah, we have a very mixed group, at the support group, not just addicts, but plenty of ex-addicts, middle-class types, people who caught Hep from transfusions, nurses also, etc.
Dr Bzowej thinks biopsys are dangerous? What kind of Doctor is she? What kind of danger is she talking about?? The chance of infection from the needle is so slight, etc.
I did get an I.V. drip of Ativan, tis true, during my Biopsy, but you could just take one orally, an hour before, for nerves.
I heard the worst things about Interferon/Ribavirin, for years, but I'm really not that bothered by them. I actually look forward to my Interferon shot, because I know it was what helped get rid of my viral load and elevated enzymes. Plus, the shot doesn't hurt.
My Doctor is in Oakland, and specializes in treating addicts, so I am sure she has experience with people who have a hard time finding veins, etc.
We have a handy dandy little Hep C support group at noon, on Tuesdayts, if you feel like getting a second opinion from a Doctor, who has treated Hep C for many years. Just let me know if you are interseted and I will message you the inmfo/address etc
I did get an I.V. drip of Ativan, tis true, during my Biopsy, but you could just take one orally, an hour before, for nerves.
I heard the worst things about Interferon/Ribavirin, for years, but I'm really not that bothered by them. I actually look forward to my Interferon shot, because I know it was what helped get rid of my viral load and elevated enzymes. Plus, the shot doesn't hurt.
My Doctor is in Oakland, and specializes in treating addicts, so I am sure she has experience with people who have a hard time finding veins, etc.
We have a handy dandy little Hep C support group at noon, on Tuesdayts, if you feel like getting a second opinion from a Doctor, who has treated Hep C for many years. Just let me know if you are interseted and I will message you the inmfo/address etc
I'm TERRIFED about the biopsy. And, getting a vein for an IV is near impossible. Dr. Natalie Bzowej is my doc. she said that biopsies can be danagerous, etc.. and recommended that I start with te Fibrosure and ultrasound.
My mom died of cancer when I was 13 and her primary caregiver. Since then I've been a total baby about medical stuff.
Dr Jay seems pretty cool - I've met him but he won't treat me b/c of the HBV. Dr. Bzowej and Dr. Jay are the 2 docs in SF who are trialing 7977.
I think that maybe I should do the interferon, b/c I'll never have enough money to get the new drugs, but make too much to qualify for aid. My hubby and I make $85,000 combined, but have over $100,000 in debt that eats up about 1/2 our income. Another 1/3 goes towards health care. We only have $30,000/yr to spend on food rent and everything else. These programs don't get that I'm a sole proprietor, so most of the income is business income, and with that comes business debt. Taxes show a lot of money but we actually take home very little.
I'm terrified to do the SOC treatment. Side effects that may never go away, having genes 'turned on' and getting diseases that I wouldn't have if I didn't treat, etc....5yrs is a long time to wait for new meds, and who knows if I can afford it then. I'm 36 now so I'll be 5+yrs older. I'm healthy now - who knows then. Misha thinks I should treat since I'm geno3. She said that a lot of side effects don't start until after 6mo. I'm petrified guys.
My mom died of cancer when I was 13 and her primary caregiver. Since then I've been a total baby about medical stuff.
Dr Jay seems pretty cool - I've met him but he won't treat me b/c of the HBV. Dr. Bzowej and Dr. Jay are the 2 docs in SF who are trialing 7977.
I think that maybe I should do the interferon, b/c I'll never have enough money to get the new drugs, but make too much to qualify for aid. My hubby and I make $85,000 combined, but have over $100,000 in debt that eats up about 1/2 our income. Another 1/3 goes towards health care. We only have $30,000/yr to spend on food rent and everything else. These programs don't get that I'm a sole proprietor, so most of the income is business income, and with that comes business debt. Taxes show a lot of money but we actually take home very little.
I'm terrified to do the SOC treatment. Side effects that may never go away, having genes 'turned on' and getting diseases that I wouldn't have if I didn't treat, etc....5yrs is a long time to wait for new meds, and who knows if I can afford it then. I'm 36 now so I'll be 5+yrs older. I'm healthy now - who knows then. Misha thinks I should treat since I'm geno3. She said that a lot of side effects don't start until after 6mo. I'm petrified guys.
I know of Misha. She wrote that book with Dr. Gish a few years back. She is someone I'd trust.
Assuming you must be in the bay area, you have the choice of some wonderful hepatologists. Why don't you get a biopsy and find out exactly what is the health of your liver ? If your liver is healthy than sure, wait.
Viral loads don't tell you much about the condition of your liver. Mine was only 750,000 when I was diagnosed with hep C and decompensated cirrhosis.
As far as the interferon-free oral meds go, there are predictions about when they will be available. However, the predictions on the current triple tx ( for genotype 1 patients) were wrong.
Assuming you must be in the bay area, you have the choice of some wonderful hepatologists. Why don't you get a biopsy and find out exactly what is the health of your liver ? If your liver is healthy than sure, wait.
Viral loads don't tell you much about the condition of your liver. Mine was only 750,000 when I was diagnosed with hep C and decompensated cirrhosis.
As far as the interferon-free oral meds go, there are predictions about when they will be available. However, the predictions on the current triple tx ( for genotype 1 patients) were wrong.
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