Hepatitis C Community
13.4k Members
1814148 tn?1332485798

When to start treatment

I'm genotype 1 and have been living with chronic HCV over 15 years. The past 6 months have been rough...lethargy, depression, nausea, liver pain. My LFT's have only ever been slightly elevated and ultrasounds have been unremarkable. My PCP doesn't think I should have treatment until I'm really sick and is reluctant to refer my back to the specialist as "it's a waste of time". I'm having difficulty understanding why I would not want to try to clear the virus asap. I understand my genotype is not favorable for remission. The goverment compensation program that I am part of does not cover tx until your LFT's are 3X's normal limits. I'm not to trusting of following guidelines based on the mighty dollar. The government's thoughtless action of knowingly infecting innocent people with life-threatening viruses doesn't nurture trust either. Does anyone suggest having tx versus waiting? Any experiences and comments are appreciated. Thanks so much :o)
13 Responses
163305 tn?1333668571
LFT do not always tell the true story about the condition of your liver.

The only way to know the amount of damage to your liver is with a biopsy.
I'm trying very hard not to say mean nasty things about your PCP's comment.
Seeing a specialist is never a waste of time, if only to put your mind at ease!

Generally speaking the side  effects of treatment are much easier if you have less liver damage.
But if you have little damage, you might want to wait as better, less problematic treatments should be available within the a few years.

Good luck,
1833444 tn?1325557062
I don't know if this can help in any way
I wish you all the best....

1814148 tn?1332485798
Thanks for the quick responses :o)

Awaiting more effective treatments with less side effects sounds like an option. If I was to insist on tx now then I will likely be compromising my body`s ability to respond to a future treatment.

I am a registered nurse and am surrounded by liver induced death. It`s hard to be hopeful. I guess my line of work does not see the success stories lol. And I will also mention that a majority of my patients have treated themselves so poorly. Anyhow, sometimes I feel anxious about my disease and it`s this anxiety that makes me want to do all I can NOW.

The article on new drugs does give me promise for a healthier future. I have an awesome husband and 2 boys ages 15 and 6. I know is no way of predicting the quantity of life for anyone but recently I have struggled with the quality part. I will advocate for that referral and gather all the information needed to make an informed decision. Well wishes and peace to all.

Avatar universal
It is easy to misinterpret and mishear our docs when we are feeling low and, of course, it is difficult to wait when all we want is action.  However, action is not always a good thing.  It really depends on your own personal condition.  I don't have ADHD but I do get fairly anxious when it comes to things related to my physical condition and this can cause problems in communication as well.  In your case Mangel, you write of a cocaine addiction that you are wrestling with and you have been drug free less than a month.   Do you think these symptoms may be a result of the depression that is surfacing after some years of it being suppressed through drug use?  Taking the time to familiarize yourself with who you are underneath the drugs might be very helpful esp. as you begin to process and regulate the emotions that have been hard to tolerate in the past.  If you could wait on treatment for HepC for awhile that might work in your favor.  
Avatar universal
Our posts crossed in the mail.  Yes, it appears there are some powerful but benign treatments that are on the horizon and are in trial now.  
1814148 tn?1332485798
hey there..
The depression is most definitely the result of my relapse. I am a seratonin depleted mess at the moment. I'm dealing with the aftermath of a 3 month relaspe that nearly took my life. I guess I should be grateful to still be alive but I'm struggling to feel anything positive. The past 2 days have been alot better though. At least I have a sense of hope. I have a long way to go and trust that each day will get better. This is my first time posting in the hep community so that's a step in the right direction I guess. I have read alot on the upcoming treatments which has renewed my spirit with hope. Thanks again for your response. Peace.

1491755 tn?1333201362
There is no "remission" either you have the virus or you don't . Either the treatment works by eliminating the virus or it doesn't.

Not sure what the government conspiracy theories have to do with HCV. But the newest treatments seem to be very effective. Skip the PCP, and go to a GI, or better yet a Hepatologyst.  

Do you know what geno-type you are? You also need a biopsy as OH said this is the way to assess the condition of your liver not LFT's.
1814148 tn?1332485798
I seen a GI many years ago when I was initially diagnosed. I am genotype 1..not sure if it's a or b. I will be returning to the GI in the new year and a biopsy is imminent.

The Krever Report is commonly known a Canada's tainted blood tragedy. Ten's of thousands of innocent people (majority hemophiliacs) were knowingly infected with HCV and HIV through blood transfusions. It became the largest class action lawsuit in Canadian history and desicrated the public's trust for our Blood System. The Canadian Red Cross is now known as Canadian Blood Services an now have a regulatory body that holds them accountable. Anyhow it doesn't change the fact that I have to battle this disease and no amount of money that I was compensated can ensure a cure.

Avatar universal
Just want to apologize for seeing the rn as an m.  My eyesight is not so good.  Still reinforcing the idea of wrestling with the inner demons, which is the real battle, as opposed to the outer ones (the doc, the government, etc.)

As Caesar said to Brutus:  "It is not in our stars but in ourselves dear Brutus, that we are underlings".  
Avatar universal
Hi rnangel,
Welcome to the Hep C forum.  I am glad that you took the step to post on this forum.  Keep posting and asking questions here.  Being here will help you get the information you need so that you and your liver doc can make good decisions.  Keep working on your addictions and the root cause of your addictions as this will be vital in terms of keeping your liver healthy and treating your Hep C.  We're here to support you.
408795 tn?1324935675
It's unfortunate that your Gov't compensation program has such guidelines especially if you're concerned and you really want to tx.  That said, you may not have to tx just yet.  As stated above, get a liver biopsy.  The Gov't compensation guidelines should not have a problem with that request at all.  That will tell you the real damage and the real need to tx now or not.  I remember years ago hearing that some doctors in my area were going with the belief that HepC patients did not have to tx until they were stage 3.  Of course, later they realized that was not true.  At any rate that's what they told many people and that's what many of us went with.  You could also see about getting into a clinical trial and that way bypass all the Gov't compensation BS.  good luck

1814148 tn?1332485798
Thanks so much for the information and words of encouragement. It's a long wait to see my PCP. I do not want to see another Dr. at the clinic because I am a nurse at the local hospital and my colleagues are not aware of my status. I understand that new treatments are coming out in the next year or so. My GI is a leader in the field of HCV and I am blessed to have him. I was just researching his new clinic and research studies. Unfortunately, they are not recruiting for genotype 1 for most studies. I'm not too intrested in a double blind placebo-controlled study. While I may be instumental in the progeression of treatment technology, I find it somewhat unethical to be given a placebo when I am battling for my life. What do you guys think?

Yes I will follow up with a biopsy and look forward to hearing his recommendations for treatment. I will certainly keep you posted.

As for the relapse that I'm dealing with...it was a chain of events that compounded feelings of sorrow and grief. Death, health-illness, personal and workplace stressors. There is no excuse for self-medicating to the point of causing harm to oneself but I guess that is the ugly face of addiction. I am sober 21 days after a 3 months relapse. I'm generally an active and funloving mom with disciplined health practices. I know that I desperately need to avoid all toxins and practice optimal self-care prior to any treatment. I'm well on my way to a successful recovery. Addressing my HCV is something I have not done before. I have pushed it to the back of my mind for years I now realize it has been the focal point of my addiction struggle. Until now I truly believed that there is no cure for my genotype. I never focused on beating this virus and maintained a deep sense of hopelessness.

Now things are different. Things have certainly changed over the past 15 years. People are clearing the virus and living healthy lives. Even living with chronic HCV looks different than a decade ago. I'm so happy to have found this forum and w
1814148 tn?1332485798

I'm here to stay. I choose life and happiness. I will make the best of this situation. I will fight this virus courageously and informatively. Again, I thank you all from the bottom of my heart. Each and everyone of you...survivors, soldiers and angels, give me a peace that I have never felt before. It gonna be ok. I feel it for the first time in my life.
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473358451
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.