Treatment or not ?

[hero4u]

Hello everyone. I am a 54 year old male that in 1987 tested positive for hepatits C. Since that time I never did anything regarding any treatment ect. Recently I had a colonoscopy and asked my gastro Doc if I should be doing anything about it? My liver enzymes have always been fine and I also have been in recovery from alcohol and drugs for a little over 10 years. Well my Gastro Doctor sent me to have a CT scan of my lower abdomen and sent me to find out what geno type I was and how my viral load was. I saw him today and he said my liver looked normal on catscan and I am a type A1 geno type and that my viral load was over a million and the norm was 45 I beleive. He said I needed treatment and refered me to an ifectious disease specilist.. I made the appointment butI am reading all the horror stories and people on you tube who struggle with the side effects of interfuron. I am wanting to do NOTHING. I am not sick and do not want to get sick. I do not want to unlesh the disease of addiction because I am in pain or cannot sleep or have flu like symptoms and do not want to have some Doctor perscribing my controlled meds because I feel quite sure that the disease of drug abuse will kill me alot quicker than the hepatits C will. I was into opiod drugs and on and off methadone for 15 years. I never want to go back to that lifestyle. It almost killed me several times in the past and consider myself gratefull I am still even alive and kicking. I am not one who can endure much pain or distress in my life and feel by being on interfuron that - that could possibly lead to relapse and would like to aviod that at all cost. Any advice from anyone who has went thru the interfuron treatment would be appreicated. Thanks  Hero

[1oftheclub222]

" It's true you do not get symtoms until it's too late. "
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that may have come from my comment, what I meant about that is sometimes people don't realize they are sick until symptoms of decompensated chirrosis shows up, that may be their first sign something is wrong,  in which case it will probably be too late to treat and a liver transplant may be your only option.  If you have chirrosis and you are compensated then treatment is still an option, but will most likely be harder.

[bjack59]

yes, I do - i did not mean it was too late for treatment, just in my personal case, I already had cirrohiss!  I am sorry about that - "brain fog" - thanks for pointing this out.

[hero4u]

Thanks everyone for the prompt feedback. I have an appointment with an infectious disease Doctor in a few weeks. We have no " Hepatologists"near  me, I would have to go 50 miles to Miami and there are only 3 listed in network with my insurance. We'll see what the infectious disease Doctor says. I think a liver biop is in order just to know. As far as the interfuron. I am hoping NO.... Since January of this year I started exercising and eating well and so far have lost 44 lbs. Another 10 or so and I am at where I should be for my height. Something else I wouldnt want to jepordize. Thanks again everyone, Hero

[belle19]

welcome to the forum.  i had hep c for about 37 years with no symptons.  i've always been active in cardio classes and surfing.  i had a routine blood panel done in 2010.  it showed i had hep c.  i had to wait 6 months for treatment and was accepted into a clinical trial.  best thing i ever did.  i am monitored very closely and everything is free.  i have one of the top liver transplant doctors here in san diego.  i have 10 more days until EOT.  i worked part time and worked out 3x/weekly.  i started treatment at 61.  i only had mild sx, a bit of a rash, anemia, hgb is 10.5 and a little achy 2 days after my shot.  you need to get a liver biopsy.  i was stage 2/ grade 2.  do what you think is best for you.  hep c can be very unkind if left alone for too long.  best wishes.  belle

[uncledudeness]

" It's true you do not get symtoms until it's too late. "

bjack59,

maybe you might want to clarify that statement....i got symptoms from HCV quite a few years ago, and i did nothing about it. it progressed to a point where treatment is now complicated for me. so it's not too late for anyone to treat.......................... for many of us, symptoms show up early on and there is a lot we can do about it......i wouldn't want anyone to read that statement and think it's too late for them.....it's not

[babs824]

welcome to the forum and i hear your dilemma. you have gotten very good advice here and i assume that utube may not give a balanced perspective. u need to find a good hepatologist if your gastro doc is not well versed in hep treatment. a liver biopsy will tell u how fast u better move as it gives a clearer indication of damage. if worst case scenario and your stage shows alot of damage and doc wants u to treat soon u still have some time to get ready. pls read more info on this site. the old timers will give the best advice. this is where i became informed and am so grateful for the support and info. after that you will want to get life in order to treat. for u this may mean finding a good addiction therapist and possibly meetings for good support. there may be a hep c support group too but i suggest narcotics anon. at ten years of abstinence i believe if u follow good judgement and have a good support system of family friends and medical u should do fine. most of the addicts i know did not use to alleviate pain. your doc may want to put u on an antidepressant before u begin treatment to minimize the negative emotional/mental side effects. i took effexor and it helped me as i am prone to anxiety. pls dont let the info u see on the web scare u off. this is a good time to treat as the new drugs have improved the success rate. take your time to get your life in order. u may want to take a leave from work altho many work throughout treatment. u certainly want to get in good physical shape and have the bloodwork suggested to see that u are not prediabetic or have any underlying health issues. get diet and exercise in order for a few months if possible as it will make treatment easier. wishing u the best and congratulations on your winning the addiction battle one day at a time and realizing that it is important. at the same time this disease can kill and sooner is usually better. all the best, babs

[bjack59]

I started with a CT at my GP office.  He said it looked okay.  I started having some pain, fatigue, small things that show liver damage, such as color of urine, nails changed - I went to a gastro who had me get an MRI which showed I was already in stage 2 Cirrohsis, so please do not go just by a CT.  It's true you do not get symtoms until it's too late.  Good luck with your decision - i just got off treatment 4 weeks ago and it was like you read about, the worst thing i have ever gone through.  But i know people that have been able to work on it.  I have been off six months and still can't work.

[willbb]

Hi hero..

When To treat is always a very personal decision ,one that should be discussed in depth with a knowlegable doctor that has experince treating HCV.

Many infectious disease specialists have this experince ,however some not so much ,therefore it would be best to enquire this of him/her.

That is good the CT detected no abnormalities in the structure of the liver ,however to know how much damage(fibrosis) the virus has done the gold standard to ascertain this is a biopsy,or sometimes whats called a fibroscan(if available in conjuction with certain blood markers(fibrosure)

You say "I am not sick and don't want to get sick"    

You currently are sick with hepatitis C. There are  most often no symptoms to this disease until the liver basically begins to stop working (cirrhosis ) and then often it is very difficult to treat ,if at all.

The treatments today are approx. 70 _80% succesful and often done for 24 weeks(depending on many factors)

The side effects of treating for many are mild and sporadic and for some somewhat more severe( again ..depending on many factors),,however the side effects to the therapy is much less  than what one experiences with ESLD (  that happens to some)

Good luck and welcome to  the group..
Feel free to ask any questions you have as there are many good folks here willing to help..
Best ..Will

[1oftheclub222]

You should find out about getting a liver biopsy, this will tell what shape your liver is really in.  There are 4 stages with 4 being chirosis.  I believe CT scans will tell if you have chirrosis already, but they don't really tell you anything about the stages prior to chirrosis.  Most people won't have any side effects due the hep C until it's too late.

If you are at say a stage 3, you will want to treat sooner rather than later...Once you have chirrosis it is harder to treat.

if you are at maybe a stage 1, very minimal damage, you may want to wait unitl some of the new teatments come out in a few years, they sould like they are less harsh then the current treatments.

That being said, not everyone gets bad side effects, there are a majority of the people that don't very bad sides at all and can function jsut fine.  You will see alot of posts on those that have sides cause they are looking for help.  the ones that don't have such bad sides don't usually have the need to post, so you won't see many posts on the people that feel ok.

[uncledudeness]

welcome to the forum. it's a hard question to answer. all i could offer is that it was the only option for me. i've had it for over 40 years and it's now catching up to me with a vengeance. as far as the side effects go, each of us handle them differently. i will tell you that the standard treatment has changed and that you may (depending on your stage? do you know what stage you are?) only have to treat for 24 weeks. you will have to discuss that with your doctor. i did 48 weeks and i got thru it ok. sure i felt lousy at times, but you deal with it as it comes. don't think that everyone who undergoes treatment has a really difficult time. this forum is great for getting help with the side effects that could be serious at times. what you don't read about is the hundreds of people that treat and have minimal side effects. so i guess you should sit back and read a bunch of topics and ask questions.....the members here are very supportive and will help you thru it all.....i hope that helps a bit...good luck