Am I being held hostage by my viral load?

[xaver70]

Dear Forum Members,

i joined and stalked the forum for months now ever since I received my hep c diagnosis  in the summer of 2016. The reason I am writing is because I find myself at wits' end and I hope that a wise member might be able to give me some insight or, at the very least, a bit of hope.

Since my initial diagnosis my viral load took a nose dive. The first tested and highest viral load was 73469 (HCV RNA IU/mL). Four months later when I finally met with the chair of the GI department at my local university hospital, he said that I was borderline acute/chronic and could in theory start meds. I was tested yet again and my viral load was detected by lower than 15. The HVC genotype test was canceled due to insufficient viral load. The HCV log10 was canceled, too. He told me I should wait another 3 months before retesting. He made it sound like I seemed like a potential candidate to spontaneously clear the virus.

I was optimistic during the waiting. But then my latest results came back and my RNA-PCR came back with the virus once again detected, but the viral load (HCV RNA) was 33 IU/mL. It's been a week since I received the results without any follow-up from my doctor. After several phone calls to his nurse, she tells me however by just looking at the numbers: I'm in "the margin of error." So I'm waiting and worrying. I'm about 8 months in and officially chronic and feeling fairly hopeless.

I know that some if not many of you had or have been living with hep c for years and years. So I hope this doesn't come across as whiny and impatient. I'm terribly upset by the prospect that I might have to wait yet again, that my body is going to keep this thing at bay enough so that the necessary procedures for getting me on the right med for the right period of time will be thwarted indefinitely.

Might someone know: Am I destined to remain in this waiting game for a very long while? Can I expect my doctor to have an option for me if my viral load remains low? Are there ways I can increase my viral load in order to force this thing's hand?

Thanks for any feedback.

Sincerely,

Richard

[Mugwump]

Dealing with HCV before it has a chance to do liver damage is unfortunately not on the agenda of the bean counters. There are a great many clinicians who know better however and hopefully this situation will eventually change.

It seems that your immune system is dealing with the infection well so take comfort in this aspect of having the disease. All that being said we completely understand what you are going through and all here certainly do understand your need to see an end to feeling like a walking bio hazard, with a ticking time bomb inside that could at any time overwhelm your immune system and do liver damage.

Become proactive in keeping track of your liver enzymes. Your doctors should explain this aspect of being HCV active. Your viral load surprisingly has little to do with what your level of liver damage is. You can have a viral load that is all over the place and still not have detectable liver damage or elevated liver function test results.

It sounds as if your system is almost clearing the virus on its own which is a good thing. If you do manage to get treatment it should work very quickly and be short in duration for this reason. If there was a way for you to get generics I would explore this option if the bean counters continue to deny you treatment and your infection does not naturally clear. But the really good news is that you have a much easier road ahead than we did prior to DAA treatments.

Hopefully the nonsense of not treating all who are infected asap will finally be exposed for what it is and we can put enough pressure on governments to make the bean counters stop making the clinical decisions regarding treatments!

All the best
Eric

[gnatcatcher]

. . . I hope this doesn't come across as whiny and impatient. I'm terribly upset by the prospect that I might have to wait yet again, that my body is going to keep this thing at bay enough so that the necessary procedures for getting me on the right med for the right period of time will be thwarted indefinitely.

Might someone know: Am I destined to remain in this waiting game for a very long while? Can I expect my doctor to have an option for me if my viral load remains low? Are there ways I can increase my viral load in order to force this thing's hand? . . .

Richard, rest assured that you don't come across as whiny and impatient. Waiting in a state of medical limbo is right up there with prolonged sleep deprivation as a form of psychological torture. But the only ways I can think of that you can perhaps increase your viral load (which has a habit of jumping around inexplicably) are ways that would harm your liver and/or leave you unprotected from other pathogens, so I wouldn't recommend trying them.

I waited more than a decade between diagnosis and treatment because the earlier treatments were contraindicated in my case. The urge to get this thing outta here (which is also extremely strong with a cancer diagnosis, something I know first-hand) can be lessened. What helped me keep my sanity while waiting was to volunteer (working with people having hard times for different reasons) and to spend time in nature observing the birds and mammals going about their lives. YMMV.

You do seem to have a good chance of clearing this without treatment.

Gnatty

[northfork]

Richard, you can try taking Ahist that contains Chlorcyclizine which is being studied as an inhibitor. I was taking it as an allergy medicine while I was on placebo  in the Polaris 1 trial and my viral load went to half what it was and liver enzymes dropped into the 30's from the high 60's. That was before I got the real drug. I am not a doctor and you should check with yours before you consider taking it.

[xaver70]

Many thanks to those who responded so kindly to my inquiry.

I was in the car yesterday driving when my nurse called to tell me that my doctor recommends that I wait yet another 3 months before testing for my genotype. That'll make 11 months living with this monster.

A 46-year old man, I lost it on the phone and just started crying uncontrollably. This has taken me to the limit.

All of my questions I've posed to you resound even louder in my head now. Is there anything I can do to ensure im not waiting in vain? I will do research into some of your suggestions. Many thanks again. I'll probably have more questions soon.

[gnatcatcher]

Richard, you are mainly waiting to find out whether you do or don't have chronic Hep C. If it turns out you have cleared it, you're cured without treatment. If it turns out you still have it, you'll be cured with treatment.

Hep C does its damage slowly. I had Hep C for nearly 44 years by the time I started treatment. My hepatologist expects me to have a normal life span. You are not in danger while waiting another three months. Would getting a second opinion from a different hepatologist be worth the time and expense to you?

Yes, the waiting is difficult and emotional. People on treatment find it hard to wait for each set of test results during treatment, and then they find it hard to wait 12 weeks after the end of treatment (with the old treatments, it was 24 weeks after) to find out if they are cured. That's why we're called patients.

Wishing you peace,

Gnatty

[Mike]

Hang in there Richard. It sounds like you minimal disease, which is good news. You have the virus - but it's almost undetectable levels.

It's important to note that 20-25% of those exposed to HCV clear the virus without treatment.

Of those who have a chronic infection, 80% do not develop symptoms, do not have liver disease and there are no clinical indicators of infection other than the individual have tested positive to HCV.

Clinically speaking, this means that 80% of those infected do not need immediate treatment, and, in fact, may never need treatment.

These were the facts when I was diagnosed in 2000, and they are still the facts to this day.

The only difference is that, 90%+ of those who have HCV, can be cured. That wasn't the case a few years ago and, when I was diagnosed, the only 25% could expect a cure.

The point being: 80% of those infected with HCV do not develop symptoms or liver disease and never will.

If you do have problems, you can certainly be cured with the treatments available today! That's good news that wasn't around when many of us were diagnosed.

Best wishes, Mike