Viral load

[kenneltech]

My viral load last month was around 17 million.  I was told that the viral load count doesn't matter, they only watch the enzyme count.  Then I don't understand why they even do a viral load test?  I am stage 1, type 1A.  Can anyone help me with this?  As I wrote once before, I just feel my doctor isn't that aware about HepC.

Thanks,  kenneltech

[goldyn]

I went from 1million viral load to 15,000,000 viral load in 3 yrs time thats when i decided it was time to fight , i also went from stage 1 to stage 2 in that time period, my starting tx viral load was 15,000,000 1a i am  now  over 1yr post tx and SVR...The depression for me was slight, but my anxiety level went up I used ativan the whole time and made it through.....                    

                                             Blessing
                                                       Goldyn

[merryBe]

My whole post just got lost. ARgh!!
OK, in trying to help you I read your former posts…
Which really helped me get to know you better.
I see from other threads you don’t want meds right now.
You have resisted meds for most of your adult life right?
A lot of bi-polar people feel the same. I work with bi-polar girls right now.

OK, so here it is:

This is a serious thing. My mom, on no meds, killed herself and my grandma.
Bi-polar means the brain chemicals fluctuate wildly.
It’s been 40 years for you in this state, and since then meds have improved greatly.
I see you tried even shock…but when did you last try and RX….there has been
An improvement in the tx….and you may find yourself having far more better days…
Of course you will have to be willing to give up those manic episodes…
A lot of folks say they love their mania too much to go on meds…it’s true.
The thing is, some docs are even using combos of hormones in conjuction with regular meds….and so some of the new regimes don’t “flat line” people, like old meds did.

The thing is….one has to have resolve like “an elephant’s faithful 100%”
To get through this HCV treatment.

Yet even though you describe yourself in a severe state you also said you refused pharmaceuticals. So let’s talk turkey:

In this HCV tx. You will take things that make you not feel well, so unwell you may have to take other things for anxiety such as Ativan…and sleep aides which I see you do take,
And maybe a couple of more…and still you may have extremely hard days…...each individual is unique. Not everyone reacts this way, yet depression and mood swings is the top side effect and number one reason people discontinue treatment…so one must be prepared and ready to deal with things.

I have never needed tranquilizers until this tx….this TX  is “meds that reduced grown men to pools of tears, that never before cried once” to quote my NP. Now I know why she said that….this is the hardest stuff I’ve ever had to take. Not everyone has as bad a time as that, some sail through, for some it’s worse than I’m describing.
I never had a blue day in 20 yrs (well nothing like this)….and now each afternoon it feels like my skin wants to jump off my body…or like I should sit on the rug and hold on for dear life….while screaming.

So if you have this other thing…and are not willing to see what it’s doing to you now, AND take steps to minimize that…then your chances of successfully treating for a year are very slim here, not to mention dangerous to you!!!

So KNOWING now a fuller picture, your doctor is right.
I think you need to first get a handle on your regular meds to stop the mania and depression cycle.
THEN lets talk about taking a very challenging chemotherapy.
BUT FIRST you need to have some control of helping your brain to not crash and leave you with no serotonins, no reserves….the HCV tx will do some of that brain crashing all on it’s own…and the RIBA portion will lead to jitters and/or mania as well., so if you are not willing to medicate for the highs and lows you have NOW, you almost certainly will end up on a rollercoaster ride you may literally jump to get off of…and we don’t want to see that!

Don’t want to see you do something rash, so you need to get a handle on the highs and lows first, with meds for your bi-polar…give some of the new meds a chance at least,,,and then think treatment….or if your biopsy is good, wait for the newest drugs to be available, but even there, chances are there may still be some components of current standard care…and so even then, you will need to be already caring for your mental health with resolve.

Meanwhile, do not do underestimate the need you will have for total commitment to some meds you will not like for a whole year…
if you are already acting on or fantasizing a lot about suicide,
giving you this tx could be like handing you a loaded gun with a hair trigger…
knowing you have the jitters really bad….
and no good doctor would do that!!….
We want to see you here and cured….
not see  the cure be your undoing.
Keeping it real.for your sake,.OK?
Best to you,
MAryB

[merryBe]

see, I told ya there'd be other view points.

f course, it helps to know you are bipolar as it explains your docs hesitancy.
However, a year ago I was reading protease inhibitors were being fast tracked and 1-2 years off....now I'm hearing 4-5 years maybe.

In any event, you have to know your own propensity for suicidal thought and/or actions as the SOC now does bring that out even in those not priorly given t such, and with no existing depression.
You describe yourself as weary....no wonder, between the virus AND no real answers anyone would be worn out.
start with a biopsy to really know the extent of damage.
then, either make sure you are on enough meds to cope with your bi-polar, or make sure and adjust them to mre liver friendly meds before starting treatment, so you and your doc can safely up their level if and when that is indicated.
If yu want to wait another few years for safer drugs, at least get the biopsy and start on the antifibrotics that HepatitisResearcher recommends,
you could also consider a trial, but there is n guarantee in a double blind trial whether you will get the newer trial drugs, and you will almost certainly get  the current drugs at least, but you will not know if it is a full or reduced dose you've been given until the study is over. So, it might end well for you, or with you having even more side effects, which you don't need.
Obviously doctors are trying to cure patients, not kill them....so the question becomes is the cure more likely to cut short a life than the disease one carries.
You did say at first, but now that you have, which is good, I'd have to say if you have acted on those suicidal things in the past, unless we are talking very distant past, like 20-30 years ago.....that I'd agree with your doctor.
If you are strong willed and not prone to act upon your thought, then you could gingerly try therapy with the knowledge that if it gets too bad, and adjusting your meds, adding ativan and the like does not keep you relatively sane,  (I say relatively because many still get teary every day at some point).....then you need t be absolute in your resolve to throw in the towel before you act that out.
For all you know (minus biopsy) you may have a liver that can go another 20 years with good care taken of it.....you wouldn't want to jeopardize many good years for something that might be too much for you withut having a good liver doctor and a psychiatrist onboard for the duration and closely monitoring you.
If you are not at all prone to act, but only do think thoughts, then I would not offer the fact that thought have increased up right away while on treatment, only because one jangled day does not a suicide make, yet legally docs are duty bound to discontiue treatment once you make cartain statements. I would however call if you have more than a couple rough days, and tell them your depression and anxiety have increased so they will adjust yours meds ASAP.
I guess the question is are you going to be able to articulate your stress level to get the meds you need, and to ride out the rough spots. If you have a support system, family a such you can call on, you may be alright, if you are pretty much alone most of the time, then things can get hard for many.  It's a tough call for sure.

Do you comply with your current RX's for bi-polar...do you skip doses?
Truly, it's hard to dose yourself with something making you sick each day, so you need to answer yourself honestly here. The treatment is no cake walk to be sure.
thanks for disclosing the bi=polar....I would hate to steer anyone the wrong way.
http://www.medhelp.org/posts/show/346752
maryB

[neptune235]

I know there is a large body of thought that says, basically, if you have mild liver damage, you may want to wait to treat until there is something better on the market -- the current SOC is only at best 40-50% effective, etc, etc.

But lately, I've come to think that a person that is younger, with less liver damage and lower viral load, has the best chance for success.  New PIs and small molecule therapies have "been on the horizon" for most of the last decade--and in all liklihood, will still be several years off.

Based on all of that, I would recommend to anyone newly diagnosed, treat now--it may be your best shot at success.

[Bill1954]

*Very* well worded and thought through response to kennletech :o)

Bill

[Trish77]

It doesn't hurt to have a second opinion and with your situation, being bipolar, I would suggest that you seek out an experienced hepatologist who is aware of all the treatment options and can explain them to you.  If your bipolar is under control and your medication, if you are on any, is working for you then perhaps a more experienced doctor will be more confident.

There are new drugs in development at the moment and there is a drug trial coming up for Telaprevir that you might want to talk to your doctor about.  IF there is a treatment arm in that trial that only goes 24 weeks, that would be less time for you.  

I am not suggesting that you treat now.  Nor am I suggesting that you treat later.  What I'm suggesting is that you find yourself a good experienced hepatologist, clearly understand all your treatment options, how it will impact your life and  .. and then make a decision that is good for YOU.

You have the biopsy, you know your VL, you know your genotype.  I would suggest your next step is the second opinion with a very good hepatologist and discuss treatment options with him/her.

I wish you good luck.

Trish

[kenneltech]

I had a biopsy about 1 year ago, he said to come back in five years for another one.  I'm the one with the 17 million viral load, stage 1, genotyple 1A.  One of the reasons he said not to worry about it is because he said that due to my viral load and my genotype, I would not respond to treatment and doesn't want to do it.  Also, he said that, because I am bipolar (with depressive tendancies), he is afraid to treat, due to the suicidal side effects.  

That's why I'm on this forum, and damn glad I am, because I'm finding things out I never even knew, like finding a new DOCTOR.

[zazza]

Forgot to ask - which genotype are you?

[koala68]

Don't worry too much about the viral load. It can fluctuate a lot over time. What is important to monitor is liver enzyme activity which indicate how much the liver is inflammed. The reason they do the viral load in the first place is to identify what is causing your hepatitis. After all Hep C is only one of many possible reason for hepatitis! Later on, viral load is mainly monitored to see how well people respond to treatment. Good luck too!

[zazza]

"but I would not wait to treat even at stage 1 with a high VL"

I am reluctant to tell anybody to wait with treating. It is such a personal choice. But if I was stage 1 with a high VL, I would certainly consider waiting for the protease inhibitors which hopefully are due in a couple of years. The benefit with these seem to be that they get viral loads down to UND quickly.

[zazza]

Low viral load, below 400'000 IU/ml, gives higher rate of success with treatment.
High viral load gives lower rate of success with treatment.

Low viral load gives greater probability of becoming UND by week 4. But there are those with low viral load who never respond to treatment, and there are those with high viral load who are UND by week 4. The virus does not obey any rules.

When it comes to damaging your liver, I believe your doctor is correct, viral load does not matter.

[mar148]

There is no correlation between viral load and liver damage or potential liver damage.  It is only relevant when measuring treatment success and people with starting pre treatment viral loads that are high have a lower percentage chance of clearing.  Many people do clear with high starting viral loads though.  Also note viral loads change a great deal, mine was 600,000 in March and 9 million in August.  I have mild liver damage.  Please do not overreact to this information.  A liver biopsy is the most precise way of knowing how much liver damage you have.  Good luck.

[merryBe]

I know they say that viral load doesn't effect grade or stage.....but it does mean you've developed a very healthy quantitiy of viral cells.....you can be stage one, and treat in now and get to go on to a healthy liver and life, but having a VL that high has research showing that progression rate can be effected negatively by VL. It all depends on your bodies rate of repair.
Obviously someone with 1700 viral calls per ml is going to have less symptoms and damage than someone with VL of 17,000,000 per ml.
In fact my liver doctor said even treating and never reaching UND or SRV can still give a person an extra year or two just because knocking most of the virus out helps give mre repair a chance to occur.....your immune system gets a break and your body tries to regain health minus such a constant fight... so, it all depends on which study you read here...there's tons of stuff saying no....and yes.....use your own logic....
you may be a strong strapping guy, but eventually a swarm of any nasty bug can unravel the strongest.  I wouldn't worry about it....but they say the less the viral load the better chance to knock it out...but I think this can be overcme by strict adherance to the treatment....missing no meds, and no drinking/smoking/drugging.  Often people with high VL lose millions per week when they do comply.....but I would not wait to treat even at stage 1 with a high VL......just my opinion......somebody will probably disagree.
best wishes whatever you decide to do.
maryB