Aa
new to hepatitis c
I was just told by my GI that I am postive for hep c 1a. I am 6 monthes pregnant have 3 choldren already and Im married. Im scared and confused about what happens now. I have been reading and reading and reading about hep c some things are scary and some sound incouraging. Just hoping someone can give me some infor. and get some support from here thanks for reading.
Hi Sweetie....Hope I can call you that. I have daughters your age :-)
I've had hep C for over 30 years. I didn't know I had it and was diagnosed in 2005. I waited for seven years to treat. I'm now on a clinical trial. I'm a genotype 1a and had a very high viral load. After the first week of being on only ONE PILL my viral load was down to 53. After the second week I was UNDETECTED (no virus detected). This is the treatment to come. For geno 1's it will most likely be on the market in 2014. Please try not to panic. I gave birth to two daughter's AFTER I had Hep C and they were/are fine. Do not rush into anything. Gather all the facts and do some research yourself. I'm going to send you a PM.
I've had hep C for over 30 years. I didn't know I had it and was diagnosed in 2005. I waited for seven years to treat. I'm now on a clinical trial. I'm a genotype 1a and had a very high viral load. After the first week of being on only ONE PILL my viral load was down to 53. After the second week I was UNDETECTED (no virus detected). This is the treatment to come. For geno 1's it will most likely be on the market in 2014. Please try not to panic. I gave birth to two daughter's AFTER I had Hep C and they were/are fine. Do not rush into anything. Gather all the facts and do some research yourself. I'm going to send you a PM.
"I can hang with this.....especially since it is only temporary, it might well cure the problem forever, and the alternative is terminal liver disease and/or liver cancer 5 or 10 years down the road."
That statement is dangerous and unfounded fear-mongering. Similar statements appear far too often on this board.
One who does not treat has less than a 1 in 20 chance of ever dying from Hep C.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
A PA at the University of Louisville Hepatology clinic told me in an office visit that it is probably closer to 1 or 2 out of 100.
That statement is dangerous and unfounded fear-mongering. Similar statements appear far too often on this board.
One who does not treat has less than a 1 in 20 chance of ever dying from Hep C.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
A PA at the University of Louisville Hepatology clinic told me in an office visit that it is probably closer to 1 or 2 out of 100.
Hi ames,
Things are not as bad as they might seem, and the outlook is getting steadily better with time.
Much depends on your liver function---i.e., do you have cirrhosis, and if so, how severe? I strongly doubt you will transmit the virus to your child during childbirth, and with appropriate blood precautions, you are unlikely to transmit to anybody (my wife and kids are negative, I am positive genotype 1a, but now undetectable after treatment).
The current therapy for the usual genotype in the US (Type 1A) is interferon injections weekly, ribavirin twice daily (up to 1000mg/day or so), and Incivek 3 times daily. These will cause considerably side effects that are very unpleasant, particularly the Incivek. However, typically the course of Incivek is only 12 weeks if you respond (~75% or viral clearance, but somewhat less if cirrhosis is severe). The other two drugs are more tolerable; to me, the Incivek was the worst.
However, please note that there are many drugs in the pipelines of various pharma, and the experts I know (I work with clinicians and researchers who are recognized experts in hep C/HIV etc) predict that within 2 or 3 years, nobody will need to take interferon anymore, and Incivek ("Telapravir") will very likely be replaced by less harsh medications. They predict, as does big pharma, that Hep C in the U.S. and other industrialized societies will be all but eradicated withint 25-40 years, at least in those who know they have the disease (2/3 to 3/4 of those infected are unaware they have it because symptoms typically take decades to develop, and consist of liver-related [i.e., cirrhosis] symptoms and abnormal blood results that prompt further testing).
You will need adjunct treatment of various kinds, because the medications cause things like severe depression, recurrent fevers, neutropenia, anemia, skin rashes, retinal bleeding, insomnia, etc. I have found that the things they prescribe to manage the side effects generally work fairly well. I did, however, need blood transfusions because my hemoglobin got dangerously low, and it felt like I was about to faint pretty much all the time. You might also need to go on medications like G-CSF (Neupogen) to boost production of blood cells, which in turn will make you feel a LOT better. I was shocked (pleasantly) at how much better I felt immediately after being transfused with two units of PRBCs. You might also need supplementation with infused platelets, since the medications can exacerbate the effects of cirrhosis (which tends to cause red and white blood cells as well as platelets to get "chewed up" too fast, and not replaced fast enough). If you platelets get too low, you will know it because simple things like brushing your teeth will start to cause persistent bleeding that doesn't stop very easily.
SO: You have an excellent chance for a cure, particularly if you have little or no cirrhosis yet (that takes a long time to develop). If you are not cured by the current triple therapy, all is not lost by any means, since you can wait for newer, more effective, and less noxious drugs to be approved and then begin therapy with those.
Unless you already have very severe liver damage right now, you are in good position for a complete cure. But, it will not be a walk in the park. Just accept that, and prepare for the worst side effects. I think you will not like the treatment, but after a month or two, will say to yourself, "I can hang with this.....especially since it is only temporary, it might well cure the problem forever, and the alternative is terminal liver disease and/or liver cancer 5 or 10 years down the road."
That's how it was for me. I am still on double therapy, but every day things get easier and more hopeful, since I have an "RVR" (that means "Rapid Viral Response;" virus undetectable at 4 weeks) and now maintain what they call an "SVR" (which means "Sustained Viral Response"). Also, the worst medication---Incivek----is behind me now.
The only lingering problem for me now is the chance of relapse, which is rather low (we estimate 20% or less). Even if relapse occurs, at that point I could likely be treated with newer drugs expected to be approved in the next couple of years.
So.....hep C is never great news, but cheer up. The chances are excellent for you, and will only improve over time.
Best of luck. Just remember you are not alone, and you CAN achieve a total cure and even reverse mild degrees of cirrhosis eventually. In other words: you could be totally normal one day.
Things are not as bad as they might seem, and the outlook is getting steadily better with time.
Much depends on your liver function---i.e., do you have cirrhosis, and if so, how severe? I strongly doubt you will transmit the virus to your child during childbirth, and with appropriate blood precautions, you are unlikely to transmit to anybody (my wife and kids are negative, I am positive genotype 1a, but now undetectable after treatment).
The current therapy for the usual genotype in the US (Type 1A) is interferon injections weekly, ribavirin twice daily (up to 1000mg/day or so), and Incivek 3 times daily. These will cause considerably side effects that are very unpleasant, particularly the Incivek. However, typically the course of Incivek is only 12 weeks if you respond (~75% or viral clearance, but somewhat less if cirrhosis is severe). The other two drugs are more tolerable; to me, the Incivek was the worst.
However, please note that there are many drugs in the pipelines of various pharma, and the experts I know (I work with clinicians and researchers who are recognized experts in hep C/HIV etc) predict that within 2 or 3 years, nobody will need to take interferon anymore, and Incivek ("Telapravir") will very likely be replaced by less harsh medications. They predict, as does big pharma, that Hep C in the U.S. and other industrialized societies will be all but eradicated withint 25-40 years, at least in those who know they have the disease (2/3 to 3/4 of those infected are unaware they have it because symptoms typically take decades to develop, and consist of liver-related [i.e., cirrhosis] symptoms and abnormal blood results that prompt further testing).
You will need adjunct treatment of various kinds, because the medications cause things like severe depression, recurrent fevers, neutropenia, anemia, skin rashes, retinal bleeding, insomnia, etc. I have found that the things they prescribe to manage the side effects generally work fairly well. I did, however, need blood transfusions because my hemoglobin got dangerously low, and it felt like I was about to faint pretty much all the time. You might also need to go on medications like G-CSF (Neupogen) to boost production of blood cells, which in turn will make you feel a LOT better. I was shocked (pleasantly) at how much better I felt immediately after being transfused with two units of PRBCs. You might also need supplementation with infused platelets, since the medications can exacerbate the effects of cirrhosis (which tends to cause red and white blood cells as well as platelets to get "chewed up" too fast, and not replaced fast enough). If you platelets get too low, you will know it because simple things like brushing your teeth will start to cause persistent bleeding that doesn't stop very easily.
SO: You have an excellent chance for a cure, particularly if you have little or no cirrhosis yet (that takes a long time to develop). If you are not cured by the current triple therapy, all is not lost by any means, since you can wait for newer, more effective, and less noxious drugs to be approved and then begin therapy with those.
Unless you already have very severe liver damage right now, you are in good position for a complete cure. But, it will not be a walk in the park. Just accept that, and prepare for the worst side effects. I think you will not like the treatment, but after a month or two, will say to yourself, "I can hang with this.....especially since it is only temporary, it might well cure the problem forever, and the alternative is terminal liver disease and/or liver cancer 5 or 10 years down the road."
That's how it was for me. I am still on double therapy, but every day things get easier and more hopeful, since I have an "RVR" (that means "Rapid Viral Response;" virus undetectable at 4 weeks) and now maintain what they call an "SVR" (which means "Sustained Viral Response"). Also, the worst medication---Incivek----is behind me now.
The only lingering problem for me now is the chance of relapse, which is rather low (we estimate 20% or less). Even if relapse occurs, at that point I could likely be treated with newer drugs expected to be approved in the next couple of years.
So.....hep C is never great news, but cheer up. The chances are excellent for you, and will only improve over time.
Best of luck. Just remember you are not alone, and you CAN achieve a total cure and even reverse mild degrees of cirrhosis eventually. In other words: you could be totally normal one day.
Try to stay calm. I was also diagnosed with Hep C when I was 3 months preg, at age 30 yrs. It was my 2nd pregnancy, and everything was fine.
Make sure that your Doctor keeps an eye on your labs, to
make sure the platelets arent too low, although even in normal pregnancy, platelets can be a bit lower thyour babyan average.
Dont worry about Treating your Hep right now, just focus on having your baby. Hep C is generally very slow moving, and the estrogen level that women have, in the child-bearing years, is thought to protect the liver somewhat.
I havent had my children tested for Hep C yet. There is a new Interferon Free treatment being worked on right now, which will hopefully be approved by the FDA, within a few yrs. At that point, you cant Treat your Hep C.
If a woman with Hep C has a newborn, and they test the babe, they baby will test positive for the Hep C antibody always, but it doesnt mean the babyhas Hep C, just the antibody. So it is recommended not to test the baby until it is at least 6 months old, but my Doctor never recommended that I have my children tested.
If you have any unusual symptoms, let your Doctor know right away.
Make sure that your Doctor keeps an eye on your labs, to
make sure the platelets arent too low, although even in normal pregnancy, platelets can be a bit lower thyour babyan average.
Dont worry about Treating your Hep right now, just focus on having your baby. Hep C is generally very slow moving, and the estrogen level that women have, in the child-bearing years, is thought to protect the liver somewhat.
I havent had my children tested for Hep C yet. There is a new Interferon Free treatment being worked on right now, which will hopefully be approved by the FDA, within a few yrs. At that point, you cant Treat your Hep C.
If a woman with Hep C has a newborn, and they test the babe, they baby will test positive for the Hep C antibody always, but it doesnt mean the babyhas Hep C, just the antibody. So it is recommended not to test the baby until it is at least 6 months old, but my Doctor never recommended that I have my children tested.
If you have any unusual symptoms, let your Doctor know right away.
I am 30 yrs. old. I never thought I could have hep c but a few monthes I got pain in my upper right stomach and was scared for the baby so decided to go to the ER. There they did blood work and found that I had evelated liver enyzmes I was then referred to a GI. There he did the first hep c test and I was positive for the hep c antibody, then I had the viral load test and it was postive. Im already high risk because of two miscarriages and preterm labor with two of my kids.
I forgot to mention that the other 3 were uncomplicated pregnancies onl the 6 th child was a complicated pregnancy.She is now just 13 and healthy and taller than me!
Everyone is right do not worry.You need to concentrate on staying healthy and happy for your kids sake and baby's.I had 4 children after I was diagnosed and none of them have it they were all tested after their birht at 3 months and at 6 monts.You can even nurse your babies (I did).
The danger can come if you have low platlets from an enlarged spleen.They they will have blood products and platelets on hand for you because you can bleed heavily after the birth.They even have a solution if that fails...they can remove your Uterus.There are only 2 large veins that they clamp off and take the Uterus out.This removes a large bleeding organ from your body.Living near a major hospital is a requirement because they don't like to helicopter PG woman to the Hospital because there isn't alot of room for them to work.My insurance at the time was state department of social services and they paid for a hotel room for me and Griz for 3 months because it was cheaper than keeping fresh blood products available(they are only good for so many hours and they have to throw them out and order more.)You can be classified and as a complicated pregnancy but with that you will get the best specialists in your area.One of the danger that can occur is that from the huge volume of blood increase if can tax your liver.
I went into class c liver failure and my platelets had dropped to an unbelievable 18,000.The baby had to be delivered at 7 1/2 months but we had prepared for this by giving me steroids to boost the baby's lung capacity.All of this came about from an unplanned pregnancy of course.
I don't know how old you are but that can be on your side,I am sure you are healthier than I was(I was 41 with an enlarged spleen to begin with.
Everyone is different but with the very best medical care you can be fine and have a sweet little baby too!I will pray for you comfort.Snow
The danger can come if you have low platlets from an enlarged spleen.They they will have blood products and platelets on hand for you because you can bleed heavily after the birth.They even have a solution if that fails...they can remove your Uterus.There are only 2 large veins that they clamp off and take the Uterus out.This removes a large bleeding organ from your body.Living near a major hospital is a requirement because they don't like to helicopter PG woman to the Hospital because there isn't alot of room for them to work.My insurance at the time was state department of social services and they paid for a hotel room for me and Griz for 3 months because it was cheaper than keeping fresh blood products available(they are only good for so many hours and they have to throw them out and order more.)You can be classified and as a complicated pregnancy but with that you will get the best specialists in your area.One of the danger that can occur is that from the huge volume of blood increase if can tax your liver.
I went into class c liver failure and my platelets had dropped to an unbelievable 18,000.The baby had to be delivered at 7 1/2 months but we had prepared for this by giving me steroids to boost the baby's lung capacity.All of this came about from an unplanned pregnancy of course.
I don't know how old you are but that can be on your side,I am sure you are healthier than I was(I was 41 with an enlarged spleen to begin with.
Everyone is different but with the very best medical care you can be fine and have a sweet little baby too!I will pray for you comfort.Snow
I agree with everyone else here. There is a chance of vertical transmission, but it's low. Get everyone tested, including your newborn. They may recommend Hep B vaccine for baby, because coinfection with b and c is bad news.
Hep A and B shots are a great idea for you, when you are done being pregnant. You won't be able to start treatment until after nursing - or you can choose not to nurse. No iron supplements, no sharing toothbrush or nail clipper or razor, no period sex (ever again).
Hep A and B shots are a great idea for you, when you are done being pregnant. You won't be able to start treatment until after nursing - or you can choose not to nurse. No iron supplements, no sharing toothbrush or nail clipper or razor, no period sex (ever again).
my wife and i both had hep c geno 1a....we had 7 kids...none if the kids have hep c....they say i think 1 in 20 to pass on to your kids....good luck....billy
i had hep c for about 37 years. i married and had two sons. no one in my family ever got it. i nursed both my boys for 1 year. don't worry, you'll be fine. take the time to find out all you can about hep c. after your baby is born you can proceed with a hepatologist to see how your liver is. take care of your children and good luck. belle
Sorry to hear about your recent diagnosis of Hep C. Don't be scared. Many people on this forum are married and have children and their family members have not contracted Hep C. Hep C is transmitted by blood to blood contact only, so use universal precautions to avoid any contact of your blood with your family members' blood. Do not share toothbrushes, razors, nail clippers, etc. with any of your family members. Handle blood with disposible gloves. These precautions will protect your family from contracting Hep C. You do not need to worry about other kinds of contact, such as kissing or hugging. Hep C cannot be transmitted by these methods. When my husband was diagnosed with Hep C in 2007, his doctor recommended that our two kids and I be tested for Hep C. Our kids tested negative, and their pediatrician tested them again 6 months later to be sure, and they tested negative again. I tested negative, but my doctor did not repeat the test 6 months later. He felt confident that there was not a need to re-test. With regard to your current pregnancy, it is possible for a mother to transmit Hep C to her child during delivery, but it is rare. Try not to worry about this, but please do talk to your doctor and share any concerns you have with him/her. You will need to work with both your doctor and your obstetrician to determine what steps you can take right now in addressing your Hep C. When my husband was first diagnosed with Hep C he was then tested for HIV and vaccinated for Hep A and Hep B to protect his liver. He then had an ultrasound and a CT scan to look at his liver. After that he had a liver biopsy to determine the health of his liver. Since I'm not a doctor, I do not know how many of these steps you can take since you're pregnant. Chances are most or all of these steps will need to wait until after your baby is born. It's fine to wait. Even when one isn't pregnant, these steps take some time, because it is a step by step procedure to get the whole picture before you and your doctor decide the next steps (whether to treat your Hep C and when). Follow up with your doctor for more information and then asked to be referred to a gastroenterologist or a hepatologist. Maybe you will be able to get an appointment to discuss your case before you have your baby to help put your mind at ease.
Focus on your pregnancy and know that neither you, your new baby, or the rest of your family are in any immediate danger at this time. Use this time to gather information and follow up with your doctors.
Keep us posted.
Advocate1955
Focus on your pregnancy and know that neither you, your new baby, or the rest of your family are in any immediate danger at this time. Use this time to gather information and follow up with your doctors.
Keep us posted.
Advocate1955
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