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Hep C -Geno Type 1, with Firbrosis
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Hep C -Geno Type 1, with Firbrosis

Hi
I am in Australia, I am 52 yrs old and after having chronic hep.C for at least 30 years, I now have stage 3 Fibrosis. I have had my FibroScan and the Doctors want me to try the new drug with 3 drugs in it. I don't want to do the treament due to what I have heard and read about the side effects. I already suffer depression and am on medication and I am generally very fatigued and don't want these made worse. The doctors tell me I would have to do a 12 month course, due to my Geno type being 1. It seems all the success stories are those with other geno types, none with Geno Typ 1, does anyone have any good news about treament for Geno Type 1? In fact any information at all would be appreciated, good or bad. Thanks from a friend in Australia.
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1815939_tn?1377995399
Welcome to the forum.

First, Genotype 1 is curable. The triple medication regimen is about 75% effective depending on several factors. That is actually a very good cure rate.

When you say the doctors want to give you the new drug with 3 drugs in it, is he/she talking about triple medication treatment? Interferon (an injection), Ribavirin, and a Protease Inhibitor? That is the standard of care now for Genotype 1.

Second, if you are at Stage 3 fibrosis, then you really need to treat as soon as possible. You do not want to wait until you progress to Stage 4 (Cirrhosis). It is more difficult to treat those with advanced fibrosis. The cure rate is not as high and people with advanced fibrosis tend to have more complications while on treatment. Also, as one ages, the fibrosis tends to pick up speed and progress faster. So you really need to treat sooner rather than later. While you still can.

As I stated above, the triple medication regimen is very effective. No, it is not 100%, but it is still very effective and about 75% of people who treat attain a cure.

The side effects vary from person to person. Some people have few side effects and others have more side effects. Most of the major side effects are treatable if you do get them. In other words, most of the major side effects, if you do get them, can be treated with drugs. There are also some remedies for some of the other side effects. I did not find treatment a picnic, but it is definitely doable.

If you already have depression and are on medications, your psychiatrist can monitor your mental status, adjust the medications if necessary, and see you through treatment. I have a history of major depression and I was already on antidepressants prior to treatment. I just kept taking them and I had zero problems with depression while on treatment. In fact, i had no problems with my mood at all during treatment.

The fatigue you feel may be from the Hepatitis C itself. One of the most common manifestations of Hep C is fatigue. I was extremely fatigued prior to treatment. I treated for 48 weeks with Interferon, Riobavirin, and Incivek, and I feel great now. I feel better than I have in 20 years and all of my fatigue is completely gone. I never get tired anymore. So perhaps if you treat, your fatigue will lessen. (To be fair, I was very tired on treatment, but as soon as I got off of treatment, my energy level and stamina improved dramatically, and I just don't get tired anymore.)

It is 48 weeks of treatment, not 12 months. Some people can do 24 weeks of treatment but it depends on how fast the virus becomes undetectable. Also, at Stage 3, the doctors may want you to do 48 weeks to give you a better chance for cure. People at Stage 4 need to do 48 weeks of treatment. Some doctors also want their Stage 3 patients to do 48 weeks. Maybe they feel you are close to Cirrhosis.

The majority of the people on this forum are Genotype 1. The majority of those of us with Genotype 1 who have treated with triple med treatment have attained a cure (sustained virologic response or SVR). I am one of them. I treated 48 weeks and am now cured.

Again, due to your being at Stage 3, you should treat sooner rather than later. Don't wait until you have progressed to Stage 4 (Cirrhosis). Treat now while you still can.

This forum is great for support and there are many very knowledgeable people on it. Please post and ask questions as often as you need to. We will respond and help if we can.

Best of luck.
13 Comments Post a Comment
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Avatar_f_tn
Hello, I read all of the info  I could before making my decision and I was very hesitant too! I have to say, I am on the 2 treatments, and have type 2, however, most of the success stories I have read have been geno 1 and on the three meds. I thought this treatment would be everything I read, and it's not! I am a full time student, I take care of my disabled Dad, I am newly married, and I have a 6 year old. My schedule is crazy, and I can handle it just fine! I am shocked by how bearable this treatment is. I expected it to be horrible. It isn't like my fun hobby, however, it is definitely worth it so far! I am at the beginning, just had my 2nd shot about 3 hours ago, and I am fine. It is your choice to make, but, I would weigh your options for sure, and definitely DON'T BELIEVE ALL THAT YOU READ! :) Welcome to the Community!!!!
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Avatar_m_tn
Few things,

I would not trust only a fibroscan result for my fibrosis stage, especially the middle 2 & 3 stages. A biopsy will give a better idea of your stage.

Dont believe everything you read about how bad this treatment is, it is bad for some, yes. But many more people do just fine, even with depression.

Here in the states geno 1's are treating 6 months with the triple dose of drugs. Unless stage 4 cirrhosis.

Personally I would treat now before cirrhosis. If you are a stage 3 and advance to stage 4 then everything changes. The disease can progress much faster, increases chance for liver cancer, harder to treat, etc.

best of luck whatever you decide to do.
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1815939_tn?1377995399
Welcome to the forum.

First, Genotype 1 is curable. The triple medication regimen is about 75% effective depending on several factors. That is actually a very good cure rate.

When you say the doctors want to give you the new drug with 3 drugs in it, is he/she talking about triple medication treatment? Interferon (an injection), Ribavirin, and a Protease Inhibitor? That is the standard of care now for Genotype 1.

Second, if you are at Stage 3 fibrosis, then you really need to treat as soon as possible. You do not want to wait until you progress to Stage 4 (Cirrhosis). It is more difficult to treat those with advanced fibrosis. The cure rate is not as high and people with advanced fibrosis tend to have more complications while on treatment. Also, as one ages, the fibrosis tends to pick up speed and progress faster. So you really need to treat sooner rather than later. While you still can.

As I stated above, the triple medication regimen is very effective. No, it is not 100%, but it is still very effective and about 75% of people who treat attain a cure.

The side effects vary from person to person. Some people have few side effects and others have more side effects. Most of the major side effects are treatable if you do get them. In other words, most of the major side effects, if you do get them, can be treated with drugs. There are also some remedies for some of the other side effects. I did not find treatment a picnic, but it is definitely doable.

If you already have depression and are on medications, your psychiatrist can monitor your mental status, adjust the medications if necessary, and see you through treatment. I have a history of major depression and I was already on antidepressants prior to treatment. I just kept taking them and I had zero problems with depression while on treatment. In fact, i had no problems with my mood at all during treatment.

The fatigue you feel may be from the Hepatitis C itself. One of the most common manifestations of Hep C is fatigue. I was extremely fatigued prior to treatment. I treated for 48 weeks with Interferon, Riobavirin, and Incivek, and I feel great now. I feel better than I have in 20 years and all of my fatigue is completely gone. I never get tired anymore. So perhaps if you treat, your fatigue will lessen. (To be fair, I was very tired on treatment, but as soon as I got off of treatment, my energy level and stamina improved dramatically, and I just don't get tired anymore.)

It is 48 weeks of treatment, not 12 months. Some people can do 24 weeks of treatment but it depends on how fast the virus becomes undetectable. Also, at Stage 3, the doctors may want you to do 48 weeks to give you a better chance for cure. People at Stage 4 need to do 48 weeks of treatment. Some doctors also want their Stage 3 patients to do 48 weeks. Maybe they feel you are close to Cirrhosis.

The majority of the people on this forum are Genotype 1. The majority of those of us with Genotype 1 who have treated with triple med treatment have attained a cure (sustained virologic response or SVR). I am one of them. I treated 48 weeks and am now cured.

Again, due to your being at Stage 3, you should treat sooner rather than later. Don't wait until you have progressed to Stage 4 (Cirrhosis). Treat now while you still can.

This forum is great for support and there are many very knowledgeable people on it. Please post and ask questions as often as you need to. We will respond and help if we can.

Best of luck.
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4950316_tn?1394188185
Hello. Welcome to the forum. Glad you found us.
I'm currently in FNQ (by accident), and treating for 48 weeks with Incivo, Interferon and Ribavirin.
HCV, unless spontaneously cleared by the body (in 20% of cases), continues to replicate, and as we get older, speed up the damage on our livers etc.
It's time to treat. It will be at least 2 years, I reckon, before any other drugs are made available in Australia that lessons sideffects.
I had a biopsy to see where my liver was at, and I was Stage 3-4.
Yes, all that Pooh has said is so true.
GOOD NEWS? Treatment can be harsh. But End Stage Liver Disease is worse.
I had a rough time for the first few months. I can tell you about in a personal message if you want, but I have cleared the virus, and am over half way in a 48 week regime.
I know I will win. I will have a chance at a HepC free life.
And I would rather that than ANYTHING.
I have lost my husband, my health and my hair, but I count that as very little in my journey to eradicate this incidious virus.
We got a nasty virus. It doesn't end well for some of us.
But, these Protease Inhibitors (Telaprovir and Boceprivir) have given us a great chance to finally get well.
Please send me a message if you want to talk about treatment options in Australia, and continue to post questions about anything you want to know more about. There are some very wise, clear and helpful people here.
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766573_tn?1365170066
The side effects can be debilitating but it is more than possible to make it through the whole 48 weeks. The only  reluctance I would have for treating HCV with triple therapy in the UK, Australia or New Zealand to name a few places is the apparent reluctance to use rescue meds when it comes to managing side effects such as anemia or neutropenia. Even though initially dose reduction is considered SOC. Lots of people in those regions have successfully treated without rescue meds and my hat is off to them.

Things may be different where you are however I would encourage you to ask about this prior to treatment. Ask what will happen should you develop:
skin irritation
low platelets
anemia
low ANC (absolute neutrophil count)

It is important to know how these possible side effects will be managed before you get them and they snowball.



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Avatar_f_tn
I finished triple therapy after 28 weeks with genotype 1a and so far (since week 12) my results have been good. I still have the horrible side effects.
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Avatar_f_tn
  Everybody is different, with the Psychiatric Side Effects, so it may make your depression worse, considering you already have the pre-existing condition of (depression) , so there is a chance that you would need to raise your dosage a bit, with your A.D.
   The Interferon caused me to feel sentimental, many tears I had, when hearing a sad song, etc, but I didn't get depressed during Tx, but I dont suffer from strong depression, ordinarily.
  It caused me to get very ANGRY a couple times, where I yelled very loud, but I learned how to control that reaction, but nt over-doing it, in terms of my activities. I avoide goingout at night, and hung out on here alot, and I attended a weekly Hep C Support Group, which helped me immensely.
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Avatar_m_tn
Hi, I'm in the same position, biopsy in july showed stage 3 with fibrosis. I am having monthly blood tests and if my ALT & AST, etc. don't surge  dr. said I could wait until approvsal of sofosbuvir on Dec. 7th, i think. Then geno 1 would only have to treat 12 weeks with interferon, riba & sofo. If my enzymes go higher then will treat sooner and longer. I am also very afraid of side effects, widow with 2 kids still at home.
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Avatar_f_tn
Asle, thank you so very much for your honest but positive comments. I will get in touch with you again soon, only just checked the site again and found there are other 'real" people out there that, can help me and hopefully I can do the same for others, sometime. What a wonderful way of meeting others who you can relate to and know they "do understand".
I'm sure I have a lot to learn.
Be back soon,
thanks again,
Cheers eninaj
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Avatar_f_tn
Hi there,
thank you everyone for all your helpful and encouraging information and advice.You have all given me more insight than I had. I appreciate it so very much. I am married but otherwise I have no-one else to talk about it to, I haven't told anyone else of my HCV, I don't have much family that I am in contact with other than our son, but don't want to tell him as it means filling him on how I got HCV, so I feel very alone at times. I went back to the Doctor yesterday and it seems I am bordering on Cirrohsis, the liver is very stiff and the right lobe particularly bad scarring, also viral load over 3 million. This was only the GP reporting back on the copy of my results he received, and he admitted a lot was over his head, so I still won't know what the Specialists consider best for me until the 25th of this month, only another 14 days to go.
I can't stand all this waiting between tests to find out exactly where I'm at and what is the best treatment option.
I just want to get it sorted and hopefully get on with my life. I've just found out my daughter in law is pregnant with our first Grandchild, and I want to be around to watch the little darling grow up.I'm a bit down at the moment as I'm thinking a lot about my mortality and who knows how much time I have left? I'm usually a very positive person despite suffering Depression. The worst of it is I have no-one to blame but myself! Thanks again for all your comments, I will continue to check in regularly, now that I have found you, I didn't know this site existed. It's great to be able to be honest about how I'm feeling and get support. Good luck to you all too!
All the best eninaj
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Avatar_f_tn
Hi there , I am in Australia also and am doing triple therapy ! I have finished 12 weeks of telaprevir ( incivek ) thank goodness - worst time of my life but I have been undetected of the virus since week 4 ( first VL test ) and still remain UD - I only have to do 24 weeks so I finish before Xmas . I am genotype 1a. The triple therapy drugs are only for gen 1 ! They are having great success with them . If I was you , I would treat now before your fibrosis turns to cirrhosis . I belong to a very informative Australian site where nearly everyone is doing triple therapy . If you need any more information , please send me a private message .
Good luck with whatever you decide to do ..
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766573_tn?1365170066
Just thought I would resuscitate this old thread to see if you found out what stage of fibrosis you are. I thought I recalled it was toward the end of Sept that you might have more info. Hope all is well :)
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317787_tn?1373214989
Hi I just saw this, I was a geno 1A, I have been cured for 19 months.  The first 12 weeks were the worst, better after
Saying that, it seems that the more damage there is the harder the tx.  Of course that is my story.  My doctor told me that I wa shaving more trouble due to the damage to my liver.

I am now cured and very glad I treated before I got any worse.

Take Care
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