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Avatar universal

SHOULD I BEGIN TREATMENT FOR HEP c-HELP PLEASE

I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day.

I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.

I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which  showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
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I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
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After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.

So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.

When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?

HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.

Sincerely
WK LAW
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Avatar universal
i have had hep c for 8 years not as long as some people. i have been hospitalizes a few times and the docs say i should start my treatment i am trying to apply for ssd and to just find a way of income to take care of my and my 5 year old any thing woulod help at this piont i am scared and if anyone knows of a program pls write back
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163305 tn?1333668571
This is a very old post.
Many of the posters no longer come to this forum.
Please try beginning your own thread with any questions you have.
And please, turn off your cap lock key. Using all caps is called shouting.
It's hard to read.
Thanks and welcome to the forum.
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Avatar universal
  Jasper, I'm with you re: WKLAW  ...Has anyone heard about him, what he decided?  How his treatment  went?     I AM IN NEED OF SOME ADVICE TO, LIKE ON AVERAGE, IF SOMEONE IS OLDER, CAN THEY OUTLIVE THE VIRUS?  WILL MY LIVER HOLD UP?  HAVEN'T SEEM MANY PEOPLE MENTION AGE.  
JUST FOUND OUT AND WAS READY FOR THE TREATMENT BUT THANKS TO THIS SITE, I FEEL I MIGHT BE WISE TO WAIT FOR NEWER LESS "BRUTAL" DRUG.  WE NEED TO HEAR FROM WKLAW AND IF HE'S STILL ON OMEGA 3'S,ETC.  I HAVENT HAD BIOPSY, FEARFUL OF LONG NEEDLE GOING INTO MY SIDE PLUS TRAUMA TO LIVER BUT FEEL I SHOULD.  IS IT TERRIBLY PAINFUL?  I'M NOT FEARFUL OF PRESENT TREATMENT JUST NEW HEALTH  PROBLEMS THAT MIGHT OCCUR. JASPER TELL ME WHATS UP WITH YOU PRESENTLY.   THIS IS JUNE2012   AND I WANT TO BE PART OF THIS FORUM, IT'S GREAT.    WINDDANCER
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Avatar universal
What ever happen to this guy/? He blows in gives a brief history and Poof, gone in 60 seconds. Whats up with that!

jasper
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Avatar universal
Hi and Happy New Year, Wklaw.

I just re-read your original post and the question I have is whether you've had a biopsy since 2-5-2006.

A biopsy is the most valuable medical procedure on which to base a treatment decision and monitor your situation. I'm surprised your doctor didn't arrange for a current one. The viral load  test and LFT's can fluctuate and are insufficient to make an informed and rational decision.

I find your doctor's optimism puzzling, unless your exceptionally low viral load signifies a special case. Your viral load is low and you're slim, but I believe your being  Genotype 1, male and  'older' are predictive factors not in your favor.

I was told by my nurse that my low viral load, early stage, gender and healthy weight favored my outcome, but my age did not; nonetheless, I didn't clear at magic week four and still remember how shocked the nurse was - stunned, really. By contrast, my hepatologist wasn't at all surprised. I'm a 1A  and frankly, the protocol is a work in progress, according to him.  He even speculated that my low viral load (despite more than four decades of having HCV) may even make me LESS likely to SVR! Hope he was joking.

It was his sincere opinion that my body had found its own way of keeping the virus in check and that, with a healthy lifestyle, many people do. Some sources claim that eighty percent of people with HCV do not ever develop serious problems from HCV, and only a portion of the remaining twenty percent develop liver cancer. Of course, the conundrum remains that we don't know what our individual fate will be.  

Like you, I had no side effects from HCV, was diagnosed almost twenty years ago and may have had it for up to fifty years.

With all respect, the greatest health risk for a male like yourself in his fifties is CVD, not HCV. If you look at mortality rates, death caused by liver cancer or HCV is minuscule compared to heart disease.

My view is you're in a perfectly sound position to await approved new drugs to be added to the cocktail. Higher success rates and shorter treatment times may not seem like a big deal to you from where you stand now but once on board, every extra chance  at success and every moment less on treatment means something substantial. This, for me, is the winning argument for the case.

With a demanding legal career in which others depend on you, why not opt to wait for shorter, approved treatments with better odds? If I were in your situation, I'd get an up-to-date biopsy before ever committing to treatment, unless your life circumstances play a major role in moving on this "file" asap.

As a stage one, your time horizon is generally long and with close monitoring, you really have the luxury of waiting.
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Avatar universal
...hm...that posted all on it's own...perhaps serendipity telling me to be more concise! :)  As others around here are already aware, brevity is not my strong point!  But I'll try to wrap it up here....

anyway...support system...I figured that people would be well meaning but might not be able to deliver and if I could only get through treatment by counting on other people, I would be dead in the water.  You'll figure out what supports you feel you need and determine if that exists for you.

As for health issues....that's wise to consider.  Honestly, I was a bit too naive and/or optimistic on that score.  I thought I was very well prepared going into treatment but only really understood that the treatment drugs could potentially cause me permanent health issues as I was going through treatment and starting having thyroid issues.  I entered treatment in your shape....absolutely no health issues of any kind, very healthy and reasonably fit ... ran 10kms the weekend after my first injection on treatment.  Last time I went running too since starting treatment last Feb. 29th ...at first to give my body all the energy it needed to fight the virus but doubt I could have later on in treatment anyway due to the fatigue and low hemoglobin.  It's a bit of a crapshoot.  You can develop health issues as a result of the virus remaining in your body and you can develop health issues from the impact of the drugs.  I would spend a bit of time investigating each of these.  I do think most people recover from the impact of the drugs however it can take awhile for some people.  And after treatment, as I've found out, a number of us experience a form of depression that can last awhile.  I didn't need AD's while on treatment... I'm on them now after treatment.  Go figure.  So...the other thing to take into account is that there will be a recovery period AFTER treatment and at this point, you don't know how long that will be.  I finished treatment two months ago and I'm starting to feel like I'm ready to start running again...just had my appendix out so perhaps that would have come sooner than 2 months if not for that little sidestep...who knows...the depression persists however it's lifting with some hard work and the benefit of all my children being home for the holidays.and reminding me who the real me is instead of the distorted version of me that I see through the dark glasses the depression had given me... I'm used to being feistier and more of a realist-optimist.  :)

I started treatment as Stage 1 and with no apparent health issues like you.  For me, my decision was based on the fact that my career was at a crossroads and I was working a contract job that wasn't intended to be permanent.  I could accommodate a job loss now.if the demands of treatment were severe however if I started a "real" job and my condition worsened over the next five or ten years demanding that I be forced to do treatment, I wasn't sure that I would be able to accommodate that quite so well later on...I had benefits now that covered 80% of my drugs..maybe later I wouldn't have any...I felt mentally and physically fit to undergo what I knew of the rigours of treatment and my responsibilities to others in my life were at a level that I could take on treatment with minimal disruption to others...my kids all live away from home.  I had one in university still but felt we could manage it. I'm a sole parent, so admittedly, that was still a risk even with young adult kids because you still have responsibilities to them and I knew that even though they could absorb the impact if I couldn't work, it was still highly undesirable.  I did end up working all through my 34 weeks of treatment, only missing 2-1/2 days of work due to side effects, other than the doc appts. I would describe my work as computer systems support and I'm problem-solving all day so I had to mentally sharp..and I managed to do pretty well on the cognizance thing but I was certainly not on top of my game that whole time and it was not easy to work but also a bonus as I could focus on work and not on how I was feeling. (I'm geno 1 but was in a Phase II clinical trial and my treatment was cut short at 34 weeks due to the overall impact on my immune system - others on my trial were in the same situation.  I'm still clear of the virus at my 4 week post test however.)

People can go into treatment with exactly the same variables and yet it will hit each person differently.  You won't know until you are in the thick of it.  There are plenty of strategies to mitigate things .. and experienced people here will only be too happy to share their techniques and strategies...however you need to understand that you won't know how it's going to hit YOU until it happens.  

The last thing I want to add (bet I'll think of plenty of addendums later though!) is that it's really really important to have a knowledgable and communicative care team.  Your doctor being over optimistic about your chances at clearing at 4 weeks is a bit of a red flag to me...makes me want to ask you to find out how experienced he is at treating people with HCV, if he's a hepatologist or a gastroenterologist, at what intervals he plans on testing your viral load throughout your treatment and what his response will be if you have not cleared the virus at those intervals for starters.  You want to make sure if you're going to embark on treatment, whenever that is, that your doctor knows what he's doing.

If you decide to start treatment now after weighing out all YOUR variables, consider if you're willing to go to 48 weeks if you're not clear at 4 weeks and if you're willing to go to 72 weeks if you're not clear at 12 weeks.  

If you decide to wait for treatment, please make sure that you get yourself checked regularly, I'd suggest a liver biopsy every two years, in my personal opinion...because of your age and the length of time you think you've had HCV.  You want to stay on top of any sudden progression in liver damage so that you can respond in a timely fashion.

That's my peanut gallery comments...I hope it helped and I'm sorry it's so long.  
Good luck...and welcome to the forum.

Trish
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Avatar universal
Just to caveat on what you said
"In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted.  So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions.    And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others.  Certainly treatment falls for  me into that area of reasonableness - not only for my own well being but for the well being of others."

If the infected person has very little liver damage they should not feel obligated to treat  because there is the chance of transmission to others.  The current drugs are brutal as you well know.  Not everyone has to treat immediately.  Many can wait years or wait for better drugs.  First and foremost a person should treat because it is the right time for them to do so given liver stage, insurance coverage, finanacial obligations, family support, not because it's their obligation to prevent others from becoming infected.  When a person becomes virus free -  SVR - their liver disease will no longer progress.  Not being contagious is an added bonus.  They must live their life using reasonable caution around others even then.  But until the day comes or maybe that day will never come when someone decides to treat, a person with hepc must be comfortable in their own skin and not constantly worry about passing it on to others.
I think we both see things similarly only my perception of why we should treat regarding infecting others is not as primary to the cause as yours.  Liver health first, everything else is a plus.
Trinity
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Avatar universal
You're getting alot of responses and I'm sure you can sift through all the "evidence" and come up with the verdict that fits for you.

Some comments of my own to add to the mix.......

Your doctor's comment that you have an excellent chance of clearing at 4 weeks is an odd one, in light of the fact that clearing at 4 weeks gives geno 1's closer to a 90% chance of clearing the virus, yet geno 1's in general have an overall success rate of around 45%.  How does your doctor figure YOU in particular have an excellent chance of clearing at 4 weeks?  I agree with many of the others that his optimism is not based on fact.

It would be more realistic and wiser for you to plan for 48 weeks of treatment.  24 weeks of treatment can be done for geno 1's who clear at 4 weeks but there are many of us who would go the 48 anyway to be absolutely sure until there has been more conclusive data ... such as more substantial numbers of geno 1's who have done 24 weeks of treatment after a 4 week RVR and the subsequent SVR numbers back up 24 weeks of treatment as credible.

On top of that....if you end up not clearing at 12 weeks, then your chances are better if you go to 72 weeks of treatment.  At your stage of liver damage, I wouldn't.  I would either make your decision at the 4 week or 12 week mark and call it there.

As for your work responsibilities....there is more to take into account on these drugs than taking Fridays off to cover your side effects from a shot day of Thursday evening.  I wish these drugs were that predictable.  You might find that you're just fine on Fridays and it's other days that you're impacted.  There are other potential side effects to take into account as well.  The other potential side effects from the drugs are diminished cognizance (known as brain fog around here :), mood alterations that may cause you to be irrationally and uncontrollably irritable with those you encounter daily and mental impacts from mild to extremely severe depression....then there is the fatigue that seems to be ever present.  All of this will potentially impact your ability to do your job as well as you are required to.  You will need to determine if you can afford that if it comes to that....if you can fit this potential impact into your life right now.

You also need to realize it will impact your relationships with your friends and your family.  As hard as they try....even the best intentioned friends and family will have a hard time understanding your needs during this time.  I would suggest you take a look at your support system and determine if you are mentally and attitudinally "fit" to really be your own primary support system and determine how much support you should realistically expect from those around you.  I was surprised at those who were there for me and also surprised at those who ended up NOT being there for me during treatment.  When I started treatment, that was the way I approached it....and put a counsellor in place that I was free to talk to so that I wouldn't be dependent on only family and friends for support, went looking for online resources and found this forum and I found an HCV support group in my city.  You know yourself best and what kinds of supports you feel you'll re
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Avatar universal
What you are saying is true but there is a very low probability of passing the virus to family members under normal living conditions.  Monogamous couples are advised not to change their sexual habits.  Transmission does happen, but the frequency is rare.  IV use, dental procedures are another thing.  Not knowing I had the disease I took no extra precautions with my family.  I think once we become aware of our infection of course it's everyone's obligation to ensure they are extra careful.  I am UND right now and even if I were SVR I would still not allow anyone to use my personal items.  It's become part of who I am now because of my heightened awareness.  However, I don't feel dirty or contaminated or think I'm a potential threat to others.  I use common sense and caution and that won't change whether I have the active virus or not.  Having this disease doesn't make me feel like I'm a threat to anyone.   I am aware of the hazards and take the necessary steps not to infect others.  That will never change so I don't struggle with that concept.  Yes, I want to be rid of this beast of burden which is why I'm treating but if that doesn't happen I will always feel good about myself regardless and carry no guilt because I am infected.
Trinity
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Avatar universal
My focus is equally on my personal health and my responsibility to others.  I am very glad that you have not passed on this disease to other family members.  Unfortunately a simple search on this forum for the word "child" shows this is not always the case.

I do look at it as follows:  HCV is not a disease like rabies which we get from an animal. HCV  is not a  disease like staph infection which we get  from germs already in the air and environment.  We can only get HCV from another infected person.

We don't get HCV from needles and drug use.  Needles do not inherently  contain the HCV virus.  We get HCV from an infected person who used that needle before us.  We don't  get HcV from dental work.  We get HcV from the infected person before us who contaminated the instruments.  We don't get HcV from toothbrushes.   We get HCV from the infected person who used the toothbrush before us.  And I personally did not get HCV from having sex.  I got it from the awful person who chose pretend to me that they were not infected (as well as my own foolishness for not taking precautions anyway).

In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted.  So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions.    And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others.  Certainly treatment falls for  me into that area of reasonableness - not only for my own well being but for the well being of others.

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Avatar universal
I wish i would have been a little less harsh in my post to you as that is not my style. Being cirrhotic i might look at things a different way then non-cirrhotic people.

I know first hand how one feels when you first find out and don't know anything about cirrhosis. i have a very good doctor at a tp center, have talked with tp coordinators, have had consults with other tp Doctors and yes i have seen first hand ESLD. For the most part i am not a very serious person in life but this i do take serious.

My hepatolgist told me sites like this can be very good and have a wealth of info but its comments like that give them second thoughts on their worth and recomending them to their patients.

Happy new year and truly wishing you the best

cando
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Avatar universal
I've never dwelled on the potential infection to others thing.  I've been married, not married, sexually active, kids, nail clippers, toothbrushes, cuts, scrapes and so on and so forth.  Probably had hepc for 30+ years with absolutely NO symptoms.  No family member has hepc except me.  My concern is my liver and not preoccupied with transmitting the virus to everyone I come in contact with as you seem to be.
Trinity
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Avatar universal
A thought : You will see a lot of people saying that HCV will not necessarily make you die of liver cancer.  And this is true - in much the same way that smokers in denial claim that smoking will not necessarily cause you to die of lung cancer.  

You will not necessarily die of HCV related complications if you have HCV.  You could be hit by a train before you are 50 just as a smoker  could fall under a bus or die of pneumonia before they die of lung cancer or heart disease.

HCV has been proven to damage the liver.  100% of the time.  If you have the virus your liver is being damaged to some degree.  Period.  Furthermore HCV has been proven to interfere in glucose metabolism (increasing your odds of diabetes) as well as being implicated in various neurological disorders (HCV virus has been found in the brain) as well as being suspect in various auto-immune disorders.

If you have HCV you will be sicker in life then without it. Much sicker.   Your health will deteriorate to various degrees.  The vast majority of people will suffer HVC related complications and  most will die of such complications.  Your life will be shortened.  

If you have sex, then you present a risk (even a small one) to your partner.  Should you cut yourself you present a risk to anyone who may contact your blood.  If your child  uses your nail clippers then he is at risk.  If your partner accidentally uses your toothbrush then they are at risk.

Your odds for fixing all this up vary (currently)  from 45% up to 85%  and the time it will take to go through the process is from 6 months to a year depending on the type of HCV virus that you have.  So at the very WORST you have a one out of two chance of a cure.  I

took those odds to live a normal and healthy rest of my life life and to not be a potential infection risk to others.

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Avatar universal
The bottom line for me is constantly adjusting how I do things.  It's been like that since starting treatment.  You can't put the cart before the horse as they say.  A person can prepare themselves to better deal with the side effects prior to tx but things change constantly once you start treating.  Until you actually treat you will not know how you will be effected.  I'm still working everyday and plan to continue throughout the duration  if my body will tolerate it.  I have a higher degree of skill, enthusiasm and aptitude in the morning and sometimes early afternoon so I schedule the majority of my work and meetings during those hours.  If that changes as treatment progresses, I will adjust accordingly.  It's hasn't been easy and there are days I want to throw the covers over my head and stay there but once I get going I'm usually ok.  
It's different with everyone and if you decide to treat only you will know what works best for you.  
Trinity
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720604 tn?1230849879
I understand how frightened you must be. I was diagnosed only 4 years ago, I am now 49. I have probably had Hep C  half my life though becaue that is when I indulged in very risky behaviour.
   In any case I can only tell you my experience with peginterferon. I had heard of all the horrible side effects-loose of hair, nausea, depression, etc. I can hardly remember them all. I am now and at the time on lexapro, an antidepressant. But even with that I was most afraid of sinking into a deep depression because that makes dealing with any physical illness 100 times worse. Anyway I went through with it. My doctor showed me how to give myself a shot and I took the first shot in her office. The shot was once a week and pill 2x a day like you said. Peg-interferon (pegasys). My doctor gave me all little "parting gifts" a pill holder, a bunch of phamplets, a daily journal, a water bottle with the pegasys logo a little flyiong Pegasus horse (!!) and a small insulated pouch to keep things cold ( I guess the injectables) also with the Pegasus horse emblazened on it! It made me laugh because the last thing I'd want to do was whip out one of these little items and invite conversation on why I had a flying horse on my water bottle and what is PEGASYS?? Yikes!
   Anyway I stayed on the treatment for 3 months..my liver enzymes went way down but my viral load never did. My doctor told me that after 3 months they can tell that if the viral load does not go down that it is not working for me. She said I could contine taking the meds I had left (aabout another months worth) because at least I could "give my liver a rest"..but she said to continue the full treatment knowing it will not cure me could do more harm than good. She didn't come out and say it but this stuff is not the best thing to be putting in your body.
   the GOOD part is..I had NO side effects from the treatment AT ALL..ZERO>>NONE and my doctor was amazed and wouls ask me each visit if I felt any the worse. I was so happy I was not sick. When the doctor discovered it was not working for me though, ie. killing the viral load, she did tell me that tey are not sure but it seems that the longer you have had the Hep C the less of a chance that the treatment would work. Like I mentioned earlier I belive I had had my hep C for over 20 years and didn't know!
   Now, what I think is if I knew of another possible cure and there was a strong possibility that I could be ill from the side effects for the six or nine months I had to be on it..I would chance it..Yes I would. The only HARD part is the fact that I  would have to go to work every day and this is the only part that would scare me off..I could deal with being sick when I could rest and take it easy but rushing to work and dealing with a job while being very ill is a whole 'nother can of beans. If I do get this chance I would try to find out if there was a way to get extended sick leave. But that being said I think, it is well worth the risk..just think of the possibilty of your doctor saying you no longer have active Hep C!! How wonderful would that be. I too am healthy now but I am afraid that someday my liver will suffer the consequences..my life may not be much to the observer but I love my life and my husband and am very happy. I want to be around as long as I can.
   The final decision is up to you, whatever you decide is the right decision for you..I wish you luck. Be well.
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9648 tn?1290091207
>>but there is a 100% chance of liver failure without treatment<<

This isn't true.

Many people will not progress to liver failure. Many people live long lives with hepatitis C. Others do not. The problem is, there's no way of predicting who can live with the virus without having it affect their QOL and who can't. There's also no way of predicting who will clear, or who will end up with long term effects that are worse than the way they felt before treatment.
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Avatar universal
MB: Once stage 3/4 is reached there is no more comfort. there is constant itching and abdominal swelling and worse.
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PLEASE stop this ****, i was dx almost 4 years ago as stage 4 grade 2 and believe me i didn't just become that the day i was dx.

Your not scaring me because i know better and know you havn't a CLUE what your talking about. But new people read that and i can imagine what they think. I have NO itching, NO swelling and i BET YOU i am much more active then you are.

You ever heard that old saying sometimes its best to just keep your mouth shut then open it and remove all doult???

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Avatar universal
MB: Once stage 3/4 is reached there is no more comfort. there is constant itching and abdominal swelling and worse.
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In all due respect, this is an outrageous statement to make. It's catergorically false and hopefully something you read or heard as opposed to scaring people intentionally.

-- Jim
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Avatar universal
I agree with most of what you are saying.  The only thing I question is "Once stage 3/4 is reached there is no more comfort. there is constant itching and abdominal swelling and worse."  I am stage 3 and never had any symptoms unless you meant stage 3/4 of cirrhosis if that's how it's graded.   If I had not developed PCT, I would have never known I had HCV.  
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233616 tn?1312787196
I know where you are coming from Frank, and it's hard to be one who has had a rough time afterwards. You have everyright to say what you think, but you must realize your exceptional reactions, which are not the norm, have effected your perceptions...they can't help but do that.

The medical literature all states the rates for occurances of serious side effects and should be read and considered by all who want to treat.

Yet we need to keep odds in mind. For instance, there may be a 1-2% chance of liver failure caused by the treatment drugs especially when given in late stages...but there is a 100% chance of liver failure without treatment.

If we were a society afraid to try new drugs, then 90% of childhood cancers would not now be curable, and countless other diseases would have taken millions in their toll. Think of diebetes and heart disease alone, subtract insulin and heart meds...what do you get?
So what needs weighing in every equation is the risk relative to the benefit.
There is no perfect answer, only calculated risk values exist.

Yes there will be cases where people feel worse, or develop autoimmune problems.
In our fifties and sixties these things happen in the general public as well, so there is no guarantee some of us wouldn'[t have developed these anyway.

My personal opinion is the lack of pituitary hormones which HCV people are commonly low in has a lot to do with whether they recover or continue a steady decline. Of course this is controversial and most doctors won't treat for pituitary dysfunction even though is it well known this is why the body stops repairing tissue.

I think everyone weighs into their decision the odds, their family, their need to work, their other health issues, and a whole host of emotional and spiritual concerns as well.

The issue at the end of the day is how long does one want to live comfortably.
Once stage 3/4 is reached there is no more comfort. there is constant itching and abdominal swelling and worse. As HCV goes to endstage it is a gruesome thing to read about, much less witness, and I have witnessed it.

To me, WKlaw sounds like he's taken good care of himself, but he is still up against a very long window of exposure.  I would liken this to an HIV patient not wanting to take the meds that may well extend his life 30 years, knowing full blown Aids could hit him in another year or two and take him down really fast.

Fifty plus years is a long time to carry this virus, I'm not sure I'd want to risk any more time waiting for some perfect med to come along. (which BTW teleprevir is far from perfect itself).  Either way, it's going to be a tough call, and one I don't envy him having to make. It would be interesting to see his biopsy report and labs.

mb
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Avatar universal
were you on riba and peg only?
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253566 tn?1219679699
I treated 72 weeks. It was hell. I "cured". Yippie, Yi F'n Yeah!

Two years off treatment and I have never felt more ill in my life. Was declared disabled last year... the liver gurus fail to recognize that their meds created the horrors going thru my body. The nurses and assistants see and know much more than the liver gurus but they have little power to bring reality to them.

My local docs are amazing. One had two liver transplants and treated with an early interferon. He is fine. His wife, a nurse, got C and treated same as me. She "cured" as well but now five years off treatment continues to suffer neurological damage. This incredibly knowledgeable doc keeps referring to his wife, then a couple other newer "cured" patients of his and how they are all suffering AFTER treatment more than with C.

I finally got it... he cant help his wife, what can he do for me... The gurus send us off the the endos, the psychs, the ______ and will do nothing for us after treatment "cures" but leaves sides for decades...

good luck in your choice, gather as much info as you can... get many opinions if you are able to... and again, best of luck
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233616 tn?1312787196
you've had so much good advice where to add.

well for starters it sounds like you know 55 years is a time when the stages could start into a more escalated progression...otherwise why even consider.

I agree with all above, you could get lucky at 24, or not and need to go 72...that quite a spread.

for my money I would only treat now if you could convince your doctor to pretreat you with Alinia and antideppressants etc. AND if he would do the rescue drugs for low blood  as sson as possible.
you can PM me for the research on Alinia (adding 10% at least chances), which added to the 80-90% cure rate already for 1b should give you as good a chance a teleprevir.

decide if you can afford to take a lesser role and delegate more. That will be needful whether you treat now or in 2 years. It's just a bump in the road to stop a virus from chewing up your liver.
If I had had the virus as long as you, I'd give considerable weight to treating sooner simply because even at low VL the virus still pools in spots in the liver and this is how and where the liver cancer gets started, the continual exposure to virus and effects of fibrosis finally turning tissue necrotic. This is the big concern as liver cancer is now the fifth largest killer of men in the USA. Even if it meant hiring more staff or taking on a smaller case load, I'd want the virus gone before it could give the HCC a chance to get going.  
Hard choices we all know, but weighing the pros and cons objectively, as if maybe for one of your clients, might help you come to the safest course of action to get a full reprive.

mb

mb
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232778 tn?1217447111
I treated, and have not regretted it. I think even just starting this thread indicates you are going to treat - you will forever wonder if you don't, it will eat you up.

I am a chartered accountant. I treated twice (as in acute stage)- the first time without Riba, and just Pegasys. I found the symptoms on that fine. The second time (after mono failed), with Riba, knocked me around a bit. I was able to work, but it was hard, and towards the end, I was making mistakes. I decided to stop work with about 3 months remaining of treatment.

As a trial lawyer, I think you will need to be careful - and get the support of your employer, and colleagues (if they know about your condition). You need to keep open the option of taking some leave if you need it. Hopefully you won't, mentally it is better to keep working. But, some of the potential side effects (especially iratibility, tiredness and brainfog), if you get them, may make it a wiser decision at some point to stop work, rather than make a mistake.

Just my 2 cents. Good luck on your journey.
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