Aa
Starting treatment soon and frightened!
I was newly diagnosed with Hepatitis C. I have had no symptoms at all; I was getting tests for autoimmune diseases for rheumatoid arthritis and just happened to get a hepatitis c test and came back positive, so it was caught very early. I am a 23 year old female with fairly decent health. I've had all the necessary blood work and my doctor doesn't see the need for a liver biopsy since my enzymes aren't elevated too much, but my insurance company may require one in order to pay for treatment. If they don't require one, I should be getting a call from my doctor later this week that the medicine is in (had to be ordered from a special pharmacy) and I will be starting Interferon and Ribavirin treatment for 24 weeks. I have genotype 3a. I have no idea what to expect. My doctor told me he can't predict the symptoms I will have since it is different with every person but I am completely frightened because I have not even the slightest idea on what's gonna happen during those 24 weeks. I am married and have a 15 month old and a 7 month old and need to know if I need help caring for them. Anybody have any advice or anything they can share to help ease my fear of not knowing? I only have 84,000 per ml of the HCV in my blood if that helps and I am 5'4" and 110lbs. Thank you so much, I appreciate anybody who can put my mind somewhat at ease!
After reading all of the replies, I just wanted to say that whatever you and your doctor decided is the right decision for you. Your chance of success (cure) is quite high because of your genotype. Many of the new drugs that are being studied are for Genotype 1, but there is at least one combination of drugs that is currently being studied for Genotype 3. There is no way to know for sure when the new trial drugs will be approved, some people are forecasting about 2014. On the one hand, you probably have time to wait because of your lower risk factors for extensive liver damage (age, gender, general health). On the other hand, your chances for success are high with the currently approved treatment for Genotype 3 and the timing is right for you in terms of insurance right now. Will you need help with your children? Possibly. My recommendation is to take it day by day and see how you feel. Perhaps you can time your injection for the evening before your husband's days off so that he will be home the day after your injection. Typical side effects from Interferon and Ribavirin are cold/flu like symptoms, fatigue, possibly a rash, possibly nausea, etc. But there are over the counter and prescription medications that can help with those side effects. It isn't easy by any means, but I think you'll be able to manage with the help of your husband. Remember, every day is a new day, and the side effects that you felt on one day may be gone on the next. You are doing everything you can possibly do for your health and for your family.
Let us know how you're doing.
Advocate1955
Let us know how you're doing.
Advocate1955
I will give you my take on how treatment has been for me. I'm in week 33 with 15 more to go, all is good. I've been one of the lucky ones with little to no side effects. With a little luck you can also have a positive treatment.
Cover all bases, prepare for the worst case because treatment can be difficult. Hopefully your planning will be nothing more than a waist of your time. Two very important items drink drink and drink more, do whatever it takes to keep your body flooded. IMO most importantly is a positive mind set, don't let the drugs bring you down, stay active, keep your mind clear of the side effects. Best wishes,,,,,
Cover all bases, prepare for the worst case because treatment can be difficult. Hopefully your planning will be nothing more than a waist of your time. Two very important items drink drink and drink more, do whatever it takes to keep your body flooded. IMO most importantly is a positive mind set, don't let the drugs bring you down, stay active, keep your mind clear of the side effects. Best wishes,,,,,
"Remember, that those recommending this harsh treatment to you will be profitting from it"
I should have qualified this statement somewhat. My expereience with my initial consult with a GI was a rush to treatment with no discussion of ANY alternatives, including waiting, trials or even no treatment. I felt rushed into committing to SOC with their office even though I came in healthy. I beleive that this particular practice was motivated to rush to SOC for profit.
Sorry I should have made clear that this was my personal experience only.
Jill
I should have qualified this statement somewhat. My expereience with my initial consult with a GI was a rush to treatment with no discussion of ANY alternatives, including waiting, trials or even no treatment. I felt rushed into committing to SOC with their office even though I came in healthy. I beleive that this particular practice was motivated to rush to SOC for profit.
Sorry I should have made clear that this was my personal experience only.
Jill
Of course this decision is yours to make.
The reason some of us urge you to be cautious is two fold.
One is the new treatments options currently in the trial stage.
The other is some people have regretted doing treatment.
You need to make an informed decision based on more than just 'my doctor said to do it.'
It will not hurt if you wait a few months and better educate yourself about the virus and treatment.
Genotype 1 is the hardest type to treat however we have members here who have been genotype 2 or 3 and completed trials with the new meds successfully.
I'd like to reassure you that many of us bore children and raised them to adulthood while having the virus and not knowing it, yet our children did not get it.
That is my own experience. I'm sure I've had it since before my kids were born and wasn't diagnosed for almost 30 years. During that time, I tended to my children's cuts and scrapes and they did not get the virus.
However, I understand entirely the urge to have it be gone and not have to worry about it.
In some ways, if you do it now, your kids are so young having an emotional mom won't bother them they way it would when they are older.
Interferon treatment can cause depression, severe irritation along with a host of other side effects.
You can send anyone here a private message and of course you can always come here for support.
Good luck with whatever you decided to do.
The reason some of us urge you to be cautious is two fold.
One is the new treatments options currently in the trial stage.
The other is some people have regretted doing treatment.
You need to make an informed decision based on more than just 'my doctor said to do it.'
It will not hurt if you wait a few months and better educate yourself about the virus and treatment.
Genotype 1 is the hardest type to treat however we have members here who have been genotype 2 or 3 and completed trials with the new meds successfully.
I'd like to reassure you that many of us bore children and raised them to adulthood while having the virus and not knowing it, yet our children did not get it.
That is my own experience. I'm sure I've had it since before my kids were born and wasn't diagnosed for almost 30 years. During that time, I tended to my children's cuts and scrapes and they did not get the virus.
However, I understand entirely the urge to have it be gone and not have to worry about it.
In some ways, if you do it now, your kids are so young having an emotional mom won't bother them they way it would when they are older.
Interferon treatment can cause depression, severe irritation along with a host of other side effects.
You can send anyone here a private message and of course you can always come here for support.
Good luck with whatever you decided to do.
Hi Beaker,
I have finished my treatment 6 months ago. Im 37 years old, good health. I also expected the worse, but only felt bad at the last two months of treatment, when I developed anemia and hypothyroidism, before that almost nothing, I worked (I am an engineer) during all tx, never missed a day. I did gym (strengh trainning) during all first 4 months of tx (before anemia). So do not suffer in advance, each person is a person, and you may be as luck as me :-) Now SVR.
I have finished my treatment 6 months ago. Im 37 years old, good health. I also expected the worse, but only felt bad at the last two months of treatment, when I developed anemia and hypothyroidism, before that almost nothing, I worked (I am an engineer) during all tx, never missed a day. I did gym (strengh trainning) during all first 4 months of tx (before anemia). So do not suffer in advance, each person is a person, and you may be as luck as me :-) Now SVR.
I see it blocked my email so I will try it this way... It's my username: beaker426 at gmail :)
My email is ***@**** if anybody wants to be my "mentor" and support system through this. There are just some things I don't feel comfortable talking to my husband about and I'd really appreciate being able to have somebody relate to what I'm going through both mentally and physically during treatment. Thanks, again, so much! I think having someone will keep my head up and motivated!
Thank you so much for the responses! The reason I want to do treatment now is insurance reasons and as of right now and at least the next 8 months I'm fully covered for the treatment. I'm excited to get it done and over with and be clear and to not worry about cutting myself in public and blood, also I'm afraid of my children when they get hurt and bleed so I don't give them HCV if they don't have it already. Another big reason is that right now my husband and I are living in an apartment-house owned by my parents so we could save money for a house, so we have a lot of family around for help with me and the kids, so that is a big plus.
My mother showed me an article about drug trials for new medicines for HCV but, from what I read, I thought it was only for genotype 1? I could be wrong and I cannot remember the name of the drug offhand.
After asking "Dr. Google" and doing research about it, I'm starting to feel optimistic about my prognosis since the viral load is low and I'm somewhat healthy. I'm just absolutely terrified of the side effects and my husband is afraid, since there have been cases of suicide, that I'll try to kill myself. I hate being sick and am not looking forward to being ill during treatment but I keep telling myself that the outcome is that (hopefully) I'll be free of the virus and can lead a long healthy life. 24 weeks seems like a long time but I have to keep telling myself that 6 months isn't long compared to how long life is.
Thanks for all the support everyone!! I should be starting treatment Thursday so wish me luck please! And I could really use somebody to air my issues/problems/concerns/thoughts/etc. to!!!
My mother showed me an article about drug trials for new medicines for HCV but, from what I read, I thought it was only for genotype 1? I could be wrong and I cannot remember the name of the drug offhand.
After asking "Dr. Google" and doing research about it, I'm starting to feel optimistic about my prognosis since the viral load is low and I'm somewhat healthy. I'm just absolutely terrified of the side effects and my husband is afraid, since there have been cases of suicide, that I'll try to kill myself. I hate being sick and am not looking forward to being ill during treatment but I keep telling myself that the outcome is that (hopefully) I'll be free of the virus and can lead a long healthy life. 24 weeks seems like a long time but I have to keep telling myself that 6 months isn't long compared to how long life is.
Thanks for all the support everyone!! I should be starting treatment Thursday so wish me luck please! And I could really use somebody to air my issues/problems/concerns/thoughts/etc. to!!!
I would tell you that the decision to treat or not is a personal one that should be made by you and your doc, based on the current state of your liver, present circumstances (insurance, children, support, ect, ect). People have many different reasons for treating now or waiting.
"Remember, that those recommending this harsh treatment to you will be profitting from it"
I am a little confused by this statement, are you saying that the pharmaceutical companies making these new drugs are not going to profit once the drugs are released ? Then why make them ? Are the docs recommending to wait not going to profit once the drugs are released ?
I am a little confused by this statement, are you saying that the pharmaceutical companies making these new drugs are not going to profit once the drugs are released ? Then why make them ? Are the docs recommending to wait not going to profit once the drugs are released ?
While I sure agree waiting is an option at your age and having a couple young ones to deal with. We shouldn't just jump the gun here and think that Insurance is just going to open their wallets and pay for these. A lot will depend on their cost and since there is already a high SVR for geno 2 and 3"s that will also play into it. And remember even now those geno types that have an RVR with weight base dosing can stop treatment at 12 and 16 weeks if side effects are an issue. These are things I would talk over with your doctor....
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Analysis by Paul Y. Kwo, MD:
Truncation of therapy to 12-16 weeks should be considered only in patients who achieve rapid virologic response but experience tolerability issues. The AASLD guidelines note the standard of treatment for genotype 2 or 3 HCV infection is 24 weeks of peginterferon plus 800 mg/day of ribavirin.[19] Several studies have examined shortening of therapy in these patients. Most studies that have examined truncation of therapy to 12-16 weeks have used weight-based ribavirin ranging from 800-1200 mg, regardless of peginterferon choice. The largest randomized trial that compared 16 with 24 weeks of therapy used flat-dose ribavirin, and this study showed that 24 weeks was superior to 16 weeks.[19] Thus, the standard of care is 24 weeks of peginterferon with 800 mg/day of ribavirin. However, if the patient tolerates therapy poorly, therapy could be truncated at 12-16 weeks, provided the patient achieves a rapid virologic response at Week 4. Without a rapid virologic response, the patient should receive 24 weeks of therapy as there is a higher risk of relapse among those who truncate therapy, particularly among late responders.[
------------------------------------------
Analysis by Paul Y. Kwo, MD:
Truncation of therapy to 12-16 weeks should be considered only in patients who achieve rapid virologic response but experience tolerability issues. The AASLD guidelines note the standard of treatment for genotype 2 or 3 HCV infection is 24 weeks of peginterferon plus 800 mg/day of ribavirin.[19] Several studies have examined shortening of therapy in these patients. Most studies that have examined truncation of therapy to 12-16 weeks have used weight-based ribavirin ranging from 800-1200 mg, regardless of peginterferon choice. The largest randomized trial that compared 16 with 24 weeks of therapy used flat-dose ribavirin, and this study showed that 24 weeks was superior to 16 weeks.[19] Thus, the standard of care is 24 weeks of peginterferon with 800 mg/day of ribavirin. However, if the patient tolerates therapy poorly, therapy could be truncated at 12-16 weeks, provided the patient achieves a rapid virologic response at Week 4. Without a rapid virologic response, the patient should receive 24 weeks of therapy as there is a higher risk of relapse among those who truncate therapy, particularly among late responders.[
I am a 3a cured with 7977 NO SIDE EFFECTS! Though I am 48 years old, I had little damage. Please consider waiting for this benign treatment to be approved. I cannot imagine the harsh treatment with young children. I did a clinical trial . Remember, that those recommending this harsh treatment to you will be profitting from it .
Hi Beaker
let me start by saying don't be scared u did come to the right place when i was told i had hep c i was like how can this be i think they r crazy they don't know what they r talking about don't be scared these great people on here know what they r talking about they helped me by encouraging and giving me very good advice i am gyno type 2 and on week 5 of treatment and so far its has not been so bad for me everyone is different u r in pretty good shape i don't know much about the new treatment that is coming out but a lot of people on here do like they were telling u talk to your doctor and see what your options r before u jump in
i just wanted to help put your mind at ease u have options and u can clear this thing
Good luck to you Racky
let me start by saying don't be scared u did come to the right place when i was told i had hep c i was like how can this be i think they r crazy they don't know what they r talking about don't be scared these great people on here know what they r talking about they helped me by encouraging and giving me very good advice i am gyno type 2 and on week 5 of treatment and so far its has not been so bad for me everyone is different u r in pretty good shape i don't know much about the new treatment that is coming out but a lot of people on here do like they were telling u talk to your doctor and see what your options r before u jump in
i just wanted to help put your mind at ease u have options and u can clear this thing
Good luck to you Racky
I tend to agree with orphanedhawk on this one.
See if a hepatologist will advise you to wait for treatment.
My hepatologist is just back from a conference in Boston. I'm hoping he brought me a pocket full of 7977!
I'm on week 7 of 24 (1/3 through) with interferon and riba - it is doable but no fun at all.I wouldn't want to be looking after youngsters with it that's for sure.
If my liver damage had been less I think I would have waited.
If you need any help email
doofus
See if a hepatologist will advise you to wait for treatment.
My hepatologist is just back from a conference in Boston. I'm hoping he brought me a pocket full of 7977!
I'm on week 7 of 24 (1/3 through) with interferon and riba - it is doable but no fun at all.I wouldn't want to be looking after youngsters with it that's for sure.
If my liver damage had been less I think I would have waited.
If you need any help email
doofus
I agree with OrphanedHawk. I was surprised to read to the end of this thread and see that your doctor apparently did not discuss treatment options with you. There are many HCV drugs in trials showing a high degree of efficacy (lots of people attaining SVR) and a WAY less harsh side effect profile. Your children could very well be in Pre-K or early elementary school by then.
This is an exciting period of development if Hepatitis C research and cure after what seems like decades of stagnation. I hear so many time ranges stated at when these meds would be available but even if that is three years or so from now you are young and theoretically not looking at a rapid progression of fibrosis.
If it were me I would want at least some type of evaluation of the state of my fibrosis. I would just want to know. After that I would make a decision to treat.
Another advantage of being young and healthy is that time is on your side.
Meanwhile you could have vaccinations for both Hepatitis A & B, hold up on drinking alcohol and stay healthy and active.
Best of Luck and
keep us informed!
This is an exciting period of development if Hepatitis C research and cure after what seems like decades of stagnation. I hear so many time ranges stated at when these meds would be available but even if that is three years or so from now you are young and theoretically not looking at a rapid progression of fibrosis.
If it were me I would want at least some type of evaluation of the state of my fibrosis. I would just want to know. After that I would make a decision to treat.
Another advantage of being young and healthy is that time is on your side.
Meanwhile you could have vaccinations for both Hepatitis A & B, hold up on drinking alcohol and stay healthy and active.
Best of Luck and
keep us informed!
I would advise anyone with low to minimal liver damage to wait until the new all oral interferon free meds which are currently doing great in clinical trials, are available.
And in your case, having two children under the age of two, I'd double that advice.
Hep c moves slowly and does not cause the same amount of damage to everyone.
The new meds are said to have few side effects.
Please do not consent to do treatment until you have educated yourself completely about this treatment.
There is no rush !
You could look at this web site for more information:
www.hepcadvocte.org
And in your case, having two children under the age of two, I'd double that advice.
Hep c moves slowly and does not cause the same amount of damage to everyone.
The new meds are said to have few side effects.
Please do not consent to do treatment until you have educated yourself completely about this treatment.
There is no rush !
You could look at this web site for more information:
www.hepcadvocte.org
I am also frightened my 23 year old daughter will get back her test results friday as to viral load and genotype, I just read about 2 new medicines danoprevir and mericitabine to be taken with or without interferon and ribavirin
Welcome to the forum,folks here very supportive and some are very knowledgeable,so if you have any questions don't hesitate.
Right from the start you got great things going for you,your age,your gender and your weight,and also assuming you have very little liver damage these are very good predictors for an SVR for a G3.
Even tho treatment can be tough you will be able to take care of yourself,but as others have make sure you have back up plan for the little ones,just in case.
I'm a G3 and a 49 year old quadriplegic,I did 24 weeks and finished in August,I'm still UND 3 months post treatment.It was tough but I was able take care of myself.You're a young healthy woman you should do fine.Try and plan to get some support throughout this,it helps a lot.
Best wishes on a succesfull treatment and SVR.
Dannyboi7
Right from the start you got great things going for you,your age,your gender and your weight,and also assuming you have very little liver damage these are very good predictors for an SVR for a G3.
Even tho treatment can be tough you will be able to take care of yourself,but as others have make sure you have back up plan for the little ones,just in case.
I'm a G3 and a 49 year old quadriplegic,I did 24 weeks and finished in August,I'm still UND 3 months post treatment.It was tough but I was able take care of myself.You're a young healthy woman you should do fine.Try and plan to get some support throughout this,it helps a lot.
Best wishes on a succesfull treatment and SVR.
Dannyboi7
Something you might want to talk to your doctor about is how well you respond to treatment at 4 weeks as to well you should go on or maybe wait for better treatment in a few years... I would agree your liver damage is more then likely very low, not because of your enzymes but due to your very young age.
While treatment effects everybody different it would be a good ideal to plan on having some help with the young ones. Even with mild sides, kids at that age can really drain you.......... Wishing you the best.
While treatment effects everybody different it would be a good ideal to plan on having some help with the young ones. Even with mild sides, kids at that age can really drain you.......... Wishing you the best.
Thank you for that, I appreciate the words of encouragement. I hope doctors do start testing people real young and instead of when the damage is already done. I was lucky and grateful that I happened to randomly get the test and when I first found out I thought it was a death sentence. Now that I know there's an 80% cure rate I'm very optimistic. I just have severe anxiety to begin with and being in the dark about what symptoms to expect and what way I'll feel physically is really, really doing a toll on my emotions and anxiety.
You've come to a good forum. There are a lot of people with varying degrees of liver damage. I'm so glad you caught it early. Dr.s are beginning to test more now. It's not easy treating, but you have health and youth on your side. I truly hope your liver damage is minimal. You'll be finished before you know it and can eat a live loving diet and go on with your life.
I would be sure and have supports in place as far as the kids go. I lived with my daughter and granddaughters. I did a lot, but it was taxing on my strength and nerves. Your body will heal and you'll have many years left to be mother to your babies.
Best wishes to you, Karen :)
I would be sure and have supports in place as far as the kids go. I lived with my daughter and granddaughters. I did a lot, but it was taxing on my strength and nerves. Your body will heal and you'll have many years left to be mother to your babies.
Best wishes to you, Karen :)
I'm seeing a CNP in the Gastro/Hepatology department of the nearby hospital. I have had two very quick (15-20 min) appointments with tons of information crammed into each short visit so that's what I assumed he didn't want a biopsy for. He did say since I was so young that it is very rare for me to have damage since it is something that happens slowly over time. I do have somewhat of a plan for the care of my babies but I'm just worried I'm going to be too sick to even care for myself. Just not knowing is making it even worse, and I'm anxious to start and get it over with. Thanks for your reply!!!
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