Aa
newly diagnosed
I just found out 6 weeks ago that I have Hep C. Feeling very overwhelmed - reading everything I can get my hands on, but would love a personal view on the interferon treatments.
BTW - I agree that Pam Anderson really shouldn't be the face of this disease - never read where botox and silicone is part of the cure :-)
Thanks and take care.
BTW - I agree that Pam Anderson really shouldn't be the face of this disease - never read where botox and silicone is part of the cure :-)
Thanks and take care.
Thanks, Deb and everyone. Breath...really such good advice. Sometimes lately I have to remind myself to do that.
In just the 2 days since I have been on this site, I've got to say it has helped me more than words can say. I'm surrounded by supportive people, but even they admittedly, don't know what to say sometimes.
Thanks for your kind words.
Take care.
Joan
In just the 2 days since I have been on this site, I've got to say it has helped me more than words can say. I'm surrounded by supportive people, but even they admittedly, don't know what to say sometimes.
Thanks for your kind words.
Take care.
Joan
Breath and there is some good advice here for you, a lot of us have had this for years.
Some have cleared it, some not. the point is what ever you decide is your choice.
This is my third time, it is hard, but clearing it will be worth it.
So breath, start a list of things to ask, find out genotype, Viral load, keep updated as much as you can.
So many of the people here will help you,
So breath
Best wishes
Deb
Some have cleared it, some not. the point is what ever you decide is your choice.
This is my third time, it is hard, but clearing it will be worth it.
So breath, start a list of things to ask, find out genotype, Viral load, keep updated as much as you can.
So many of the people here will help you,
So breath
Best wishes
Deb
I'm waiting for the test results about genotype and viral load and am finding that waiting really is the hardest part.
Unfortunately that it she longest hardest lesson that we have once you find out you have this disease. You are ALWAYS waiting on SOMETHING (viral load test results, biopsy result, 4 week PCR, 12 week PCR...end of treatment PCR, 2 year EOT PCR) - it never gets any easier either.
Definitely go for a biopsy if you are a geno 1 - I would always personally advise the biopsy but it is CRUCIAL you know exactly where you stand with the amount of liver damage that you arleady have. There is such a giant difference between stage 1 and 3 and the "need" to treat or having the room to "watch and wait".
I never had any symptoms and had no idea I had the disease. My PCP told me after my ultrasound that my liver was fine and I had no fibrosis. By the time I got the results back from my hepdoc it turned out I had stage 3 liver damage and really did need to treat right away. I ended up having to treat for 72 weeks but I am now cured and have been undetectible for years.
It's a rough game but learn all you can. It gives you a GREAT advantage and the doctor is NOT always right and does NOT always know more than you do. Believe me - nobody cares more about you than YOU!
By the way the biopsy is painless - it doens't sound it but you don't have any nerves in your liver to feel the pain so it's just like getting a shot (which God knows we get used to fast!). Go for it. It REALLY is very important and Fibro is NOT as accurate. You really do need to know exactly where you stand and not guess.
Good luck.
Unfortunately that it she longest hardest lesson that we have once you find out you have this disease. You are ALWAYS waiting on SOMETHING (viral load test results, biopsy result, 4 week PCR, 12 week PCR...end of treatment PCR, 2 year EOT PCR) - it never gets any easier either.
Definitely go for a biopsy if you are a geno 1 - I would always personally advise the biopsy but it is CRUCIAL you know exactly where you stand with the amount of liver damage that you arleady have. There is such a giant difference between stage 1 and 3 and the "need" to treat or having the room to "watch and wait".
I never had any symptoms and had no idea I had the disease. My PCP told me after my ultrasound that my liver was fine and I had no fibrosis. By the time I got the results back from my hepdoc it turned out I had stage 3 liver damage and really did need to treat right away. I ended up having to treat for 72 weeks but I am now cured and have been undetectible for years.
It's a rough game but learn all you can. It gives you a GREAT advantage and the doctor is NOT always right and does NOT always know more than you do. Believe me - nobody cares more about you than YOU!
By the way the biopsy is painless - it doens't sound it but you don't have any nerves in your liver to feel the pain so it's just like getting a shot (which God knows we get used to fast!). Go for it. It REALLY is very important and Fibro is NOT as accurate. You really do need to know exactly where you stand and not guess.
Good luck.
Welcome to the club!
We're all pretty much in the same boat.
This is a great site. It has really helped me. These people are great about sharing and they know more than most.
We're all pretty much in the same boat.
This is a great site. It has really helped me. These people are great about sharing and they know more than most.
The only downside to the Fibrospect is it is not accurate enough with it's scoring to tell you exactly what stage of liver disease you have. Let's say it falls between 60-80, there is not way of knowing if you are at a stage 3 or not. The gold standard is a liver biopsy. Of course, it's whatever you feel comfortable with. I'm the type of person that wants the most accurate testing possible as even though there is a percentage of error with biopsies as well.
Trin
Trin
Thank you for your replies. It makes me feel like I'm not alone in this since there are absolutely no support groups in my area.
I'm waiting for the test results about genotype and viral load and am finding that waiting really is the hardest part. Wasn't that a Tom Petty song? Anyway, I'm thinking about the treatments to go ahead and get it over with. My ultrsound came back normal - liver smooth - so that's good. I'm the type of person that tries to look on the bright side of everything, but sometimes Pollyanna wears me out. The doctor also ordered a fibrospect - said if that comes back negative then there may be no need to do a biopsy. Still wondering if that should be the way to go regardless of the result.
I'm looking forward to reading the archives here to soak in as much information as possible.
Thanks for being there and take care.
I'm waiting for the test results about genotype and viral load and am finding that waiting really is the hardest part. Wasn't that a Tom Petty song? Anyway, I'm thinking about the treatments to go ahead and get it over with. My ultrsound came back normal - liver smooth - so that's good. I'm the type of person that tries to look on the bright side of everything, but sometimes Pollyanna wears me out. The doctor also ordered a fibrospect - said if that comes back negative then there may be no need to do a biopsy. Still wondering if that should be the way to go regardless of the result.
I'm looking forward to reading the archives here to soak in as much information as possible.
Thanks for being there and take care.
Joan,
Welcome to the forum, Overwhelmed is natural. You came to the right place, I have found more answers here then at my doctors. Please educate yourself on hep. Ask quesitons, everyone here is either newly diagnosed, treating or has treated. they will help you with all your questions.
Peace
rita
Welcome to the forum, Overwhelmed is natural. You came to the right place, I have found more answers here then at my doctors. Please educate yourself on hep. Ask quesitons, everyone here is either newly diagnosed, treating or has treated. they will help you with all your questions.
Peace
rita
Welcome. I felt that way the first few weeks. Just diagnosed this past Feb. Give it a couple of months or more to sink in. Read, and you will find out you would most likely die of something else. Family doc first sent me to an Infectious Disease dr and from there got a biopsy, viral load, etcetera. Have you done that? Do it. Live and Relax. Depending upon all your results, it may not be something to to get wound up about. At least at the moment
Feeling very overwhelmed is a normal reaction. We all feel that way at first. Once you have educated yourself about this disease, things start to take on a different perspective and you will realize that this disease is not going kill you and that you have options. Go through the archives of this forum and research as much as you can on treatment options, progression of disease, side effects of treatment and basically living with hepc. Janis7hepc.com is a very informative website and has alot of excellent information.
You will need to to know what your genotype is, viral load, and biopsy results first. Depending on the degree of liver damage (if any) you may be able to wait to treat at a later time or wait for better drugs which are about 2 or so years away.
Those with genotype 1 and 4 treat for a minimum of 48 weeks with interferon and ribaviron. Those with genotype 2 and 3 treat for 24 wks.
Treatment is very difficult for some and others experience minimum discomfort. I won't list all the side effects from treatment because at this point I don't think it will benefit you as much as knowing when to treat. Most work full time while treating which is not easy but many have no other choice because of insurance or economical reasons. You will not know how your body will react to the medication until you start treatment. It is different for everyone. I emphasize that before you consider treating, make sure you have a liver biopsy which is the best indicator whether treatment is necessary for you at this time. Some people treat regardless of how much damage they have to their liver because they just want to eradicate the virus. There are no guarantees treatment will work. Many factors contribute to when treatment is right for you.
Find a liver specialist (hepatologist) if possible rather than a GI because a liver specialist treats many with hepc and is familiar with the lastest treatment protocols. Typically, you will receive better care from a specialist. Once you have all the information you need, move forward with a decision that will best suit you. I wish you the best and welcome you to the forum. Many very knowledgeable people who can help you through the obstacles one encounters with hepc.
Trinity
You will need to to know what your genotype is, viral load, and biopsy results first. Depending on the degree of liver damage (if any) you may be able to wait to treat at a later time or wait for better drugs which are about 2 or so years away.
Those with genotype 1 and 4 treat for a minimum of 48 weeks with interferon and ribaviron. Those with genotype 2 and 3 treat for 24 wks.
Treatment is very difficult for some and others experience minimum discomfort. I won't list all the side effects from treatment because at this point I don't think it will benefit you as much as knowing when to treat. Most work full time while treating which is not easy but many have no other choice because of insurance or economical reasons. You will not know how your body will react to the medication until you start treatment. It is different for everyone. I emphasize that before you consider treating, make sure you have a liver biopsy which is the best indicator whether treatment is necessary for you at this time. Some people treat regardless of how much damage they have to their liver because they just want to eradicate the virus. There are no guarantees treatment will work. Many factors contribute to when treatment is right for you.
Find a liver specialist (hepatologist) if possible rather than a GI because a liver specialist treats many with hepc and is familiar with the lastest treatment protocols. Typically, you will receive better care from a specialist. Once you have all the information you need, move forward with a decision that will best suit you. I wish you the best and welcome you to the forum. Many very knowledgeable people who can help you through the obstacles one encounters with hepc.
Trinity
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