Still debating

[Enoughisenogh]

A couple years ago I kicked methadone cold turkey...it was a gruelling 3months of exhaustion and pain. I'm 8 mos sober now and looking to start interferon treatment ( I've been diagnosed with hep c for 10 years now) and I'm so afraid after researching the side effects that it's going to be a year of the same. Can anyone shed some light on this?

[Idyllic]

I would take all the questions the others provided to your doctor's visit with you. In a way I think it is healthy to have a certain amount of distrust of the medical community when it comes to Hepatitis C. HCV C is the kind of condition where it helps to learn enough to become your own advocate since even in medicine there are people who do not understand HCV. It will amaze you.

If it were me I would want a biopsy. I was diagnosed in 2003 and this is my second time treating. I have 15 years clean and sober and I am Stage 1 fibrosis. If I did not know that I would be freaking out and assuming my fibrosis was way more advanced than it actually is.

I agree with the others and would not worry or wonder about your viral load. Unfortunately viral load can fluctuate like crazy and one's actual viral load is not really much of a prognosticator of fibrosis or even how you will respond to treatment. Rather it is more of an indicator as to how you are responding to actual treatment itself :)

I encourage you to hang around and read posts and participate in the forum. You aren't alone!!

[jerialice]

double yes on all the above- you will be able to make informed decisions once you gather your facts. that takes time but meanwhile you can learn what you need to know to participate in your choices.
my VL fluctuates too, and i have read here, that is no marker of liver health. wish i understood that one better!
but i am trying to wait unless i find out i am in danger in the near future. feeling ok right now, so hard to tell. i'm at the biopsy (bx) stage right now, then i can see what's next. that is a lot of it- waiting.
you will learn to wait!
best of health to you and success with your sobriety.
i have 21 years!!! yee haw

[orphanedhawk]

Viral loads fluctuate naturally.

I put together a list of questions for newbies to ask their doctors which I copied and pasted for you below:


It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.

Questions for the doctor:

How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?

http://www.medhelp.org/posts/Hepatitis-C/Going-back-in/show/1785793#post_8220897
Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?

[pooh55811]

Congratulations on kicking drugs and being sober for 8 months. That is a great accomplishment. It shows you have great strength and determination. Those assets do come in handy when doing Hep C treatment.

I have never used Methadone so I obviously have never withdrawn from Methadone. However, I have worked extensively with people who have withdrawn from Methadone. From my observation (and I know it was only observation accompanied by what the people were telling me), Methadone withdrawal is far more painful and grueling than Hep C treatment. My observation and understanding is that methadone withdrawal produces severe symptoms of withdrawal which last for months. (nausea, vomiting, severe abdominal cramping, bone pain, general body pain, total exhaustion, tremors, perspiration, fever, severe runny nose to name a few).

I had some pretty uncomfortable and problematic side effects from Hep C treatment (Interferon, Ribavirin, and Incivek) (severe internal rectal pain, rash, nausea, and some systemic problems related to the nausea and rash, and severe fatigue and generally feeling terrible). Others get severe anemia, and other problems. And, of course, there can be very dangerous side effects from Hep C treatment. However, generally speaking, I do not think Hep C treatment side effects are anywhere near as severe as Methadone withdrawal. Granted, there are differences and they are difficult to compare. But overall, I think I would take Hep C treatment over taking Methadone withdrawal if I had the option.  But then, I have never withdrawn from Methadone so my observations and conclusions may not be correct.

On thing about Hep C side effects is that the most severe side effects can usually be treated and controlled with prescription medications. If the side effects are kept under control, treatment is not nearly as bad as it the side effects are ignored. Plus, with Hep C treatment, the side effects come and go and change weekly. Plus the severity of the side effects vary from day to day and week to week and from person to person. Some people do not get bad side effects. Others get more problematic side effects.

Hep C treatment is no picnic, but it is doable. And the worst side effects can be treated. It is my opinion that if you have made it through months of Methadone withdrawal, you can make it through Hep C treatment (and treatment may very well not be as bad as you anticipate ).

As far as the all oral treatments, several are being studied in trials now. It may be 3-5 years before they come on the market for general use.

You should be evaluated and have a liver biopsy done so you will know exactly what your liver damage consists of. If you are at a lower stage with minimal liver damage, you may be able to wait for the all orals. If you have a lot of liver damage, you may not have time to wait for the new oral treatments.

There are some threads on the forum that deal with some of the trials. Here are some links:

http://www.medhelp.org/posts/Hepatitis-C/Clinical-trial-GS-7977-and-BMS-790052/show/1696575

http://www.medhelp.org/posts/Hepatitis-C/GS7977-Study-Patients-Here/show/1769198

http://www.medhelp.org/posts/Hepatitis-C/results-of-12-Week-Interferon-Free-Regimen--riba/show/1794796

http://www.medhelp.org/posts/Hepatitis-C/Gilead-clinical-trial/show/1633742


Best of luck.

[Enoughisenogh]

Can you elaborate on the oral treatment?

[Enoughisenogh]

Thank you, I agree. I'm currently compiling a list of questions for my hepatologist whom I'm seeing sept 18. I've been diagnosed for ten years, 4 years ago I was recommended for treatment, at that time my viral load was 7.7 million, genotype one ( a or b?). Strangely, my viral load is currently only 3500, although it was 1500 only 3 months ago. I am hesitant to trust the medical community which is why I'm on this forum.

[Dee1956]

Congratulations, I am sure it had to be very hard to go through 3 months of withdrawal.  You are strong.
Figuy is right, you need to be evaluated to see if you need to treat now or can wait for the new all oral tx which I have read should be approved in the next 3 to 5 years
Good luck to you

[Advocate1955]

Congratulations on 8 months of sobriety!  Interferon is not easy.  It causes fatigue and flu like symptoms that range from mild to severe.  In my husband's case, they were mostly mild.  Along with Interferon you would probably be taking Ribavirin (a pill), which also causes some side effects including upset stomach, possibly a rash, and adds to the fatigue.  Again, side effects vary from person to person.  In my husband's case, he had some slight nausea that was easily managed with another prescription and a mild rash that was easily managed with a prescription.  Interferon and Ribavirin together are the old standard of care treatment for Hep C.  The new standard of care treatment adds a third medication called a protease inhibitor (either Victrellis or Incivek).  Would you be taking one of these two medications as part of your treatment?
Advocate1955

[FlGuy]

Before deciding on treatment or not you should have your HCV situaion fully evaluated. That is : current lab values, condition of your liver and determination if you are a candidate for treatment in the first place.