Viral

[StashedOne]

I finally got my Viral Load & Geno Loads taken. My doctor says they are 3 & 2 Million (& then some). Should I be concerned about this?

[risquesweety]

I was diagnosed with hep C after 2 years of odd swellings and rashes.  The way I was diagnosed was due to a visual blood test from the rhuemotoligists office staff.  this was in 1995.  He wanted to put me on cancer control meds, but I insisted on a second opinion. He called a liver specialist he knew and found out about a new RNA test which could identify hep C.  He did the test, found out that cryogloblenemia was an identifying factor of hep C.  Took interferon for 18 months (first protocal was 6 mos, then 12 mos, then 18 mos) which was considered by insurance "experimental" which I disputed and won.  ICK.  Was so sick all I could do was work, eat and sleep.  But....now I am disease free (in complete remission).

[litecloud]

Like I said this morning hope your feeling better soon, am glad you have someone there with you and you got to talk to your DR.
My prayers are with you "Little Buddy"
I have a comment on the blood pressure as some of you know am not in treatment yet. But I have noticed since I have been diagnose, my blood pressure keeps on playing games with me.
Does any one know where I can get off the internet, a blood pressure checker, but not a wrist one there not very accurate.

[raheem]

Thank you for your prompt response.  I suppose I disagree with your assertion that "you will not die without treatment or if treatment does not succeed." Tell that to the surviving families of the 8,000-10,000 folks that died last year from HCV complications. You'd be going to 27 funerals a day.  Along with many others, I have stumbled along with treatment for months, making great personal, social and financial sacrifices in order to regain my health.  I just find it somewhat repugnant that someone is categorically dismissive of interferon/ribavirin tx and tells me "it would be a good idea to come to grips with reality that this community deserves better than what is available now and not to settle on this as a cure."  Interferon/ribavirin is all we have right now and by no means do I deem it the magic bullet.  I could relapse shortly after I finish tx. Perhaps for you, saving humanity from HCV is your mission and I applaud you for that.  For me, right now, saving raheem is my goal and my reality.....and not to the exclusion of others.  I think we are all cognizant that tx doesn't work for everyone and it could be better and will be better.  I basically come here for facts and data not for hugs and kisses, but I simply thought you had a glib response to a complex question.  In no way am I starting an on line food fight and I DO enjoy 99% of your comments.  Keep up the good work.

[DH Bill]

What's up with the ear itch thing? I had it in my rt ear and I scratched it raw. My normally low bp is all over the place since tx. I have had so many weird pains like you are talking about and have psyched myself out at times which made my bp go even higher. Things have always gone away but watch yourself.

[Indiana]

I never had that particular side, but I have seen others complain of it. As with Cuteus, it seemed to just "go away after a few days or so. So just lay back, light some candles, put on the soft music, and sink into "somewhere else". Anything to calm down. Put your son in charge of putting out the candles though. I had many problems with FIRE on my tx. It is NOT our friend on the meds.
Run the problem by your doc tomorrow.
Maybe you just need an "Oil Change"?
Come on up to "Indys' Garage and Badger Store" and we'll fix you right up! Get on I-69 north out of Indianapolis and we'll flag you down when you go by..........The Gatorades always on tap!

[LvdByGod]

you are in my prayers. i think if i was in your shoes i would call my physician and let him decide if you should go to the emergency room or not. are you at home with someone? someone should keep an eye on you tonight. you need to get ahold of your dr. or the one on call tonight. just in case it's something serious. i'm praying for you right now.

[cuteus]

Back in another post I mentioned that my normal 118/78 had gradually increased to 160/100. I thought I was heading for a stroke, especially with the headache.  You can't rule out a real problem until you are seen and properly tested.  maybe not er, but call your dr and ask for his input. now girl.

[cuteus]

lvg; you are right on girl.  That same proclamation got to me.

chevy; that is the strangest thing, about two months into tx, as anemia was taking hold of me, I developed such a horrible pain in the head! i never have headaches, so i went for a scan thinking aneurysm.  my pcp was puzzled. It was on the left side, making the left ear canal itch and ache,and with such pressure against the frontal sinuses! I would wake up in the middle of the night with it.  It subsided after 2 wks. and no one can say what it was.  An mri showed no nerve damage in the neck and the scan was normal.    I hope you feel better.
ps: nice subtle message to scott in the other post :-}

[mll]

I just found the mail and my new lab results were there.
My WBC is 2.5 (3.5-10.4), abs neut 0.9 , Hgb 11.8 (11.9-14.8), hct 35.7 (37.1-45.8), Gran 35 (44-74) all of those are in the below normal range. My lymph is high, 52 normal is 18-43. My WBC's were 2.9 then 3.1, now 2.5. ALso doesanyone know of berries or vitamins that you can take to help with these numbers?

[oldhippiechick67]

I too am facing a dr's appt on Wed, (not my reg liver doc but his stand in) who wants me to stop tx since I missed my Pegasys shot for 13 days.  But I am not quitting tx and not even sure I want to go see this jerk.  But anyhow, I want to reassure you Michelle, that your blood counts arent any worse than mine were at 4 weeks into tx.  My ANC was .8 or 800, WBC were 2.8, and my doc didnt stop tx or change anything.  They even came up by week 6 so I hope you can tell him to not change anything.  He is the boss but hopefully if you show you are determined to continue tx he will work with you on it!  Some docs are more aggressive, more experimental, and some are cautious.  If yours is "too cautious" you can always get a second opinion.
Oh, by the way, I did end up going on Neupogen at week 16.

[LvdByGod]

INDI, if i tol you once i tol you a thousan times,..quit hangin aroun those "drung companies trails"....NO DOUBT LOOKING FOR OTTERS OR SOMETHING...

OK, we know you can drink now... so quit rubbin it in...:O)


STASHEDONE, i'm 3a and i have early cirrhosis, mine did like indi said, and progressed fast... you really need treatment...even if you don't get a biopsy.  there are "trials" that people can go on by the drug companies... and they cover expences...and if you"re really a 3 gyno type, then i believe it is not even "required" that you have a biopsy in order to start treatment.

although that is what you are going to WANT eventually, anyway to determin how close you are to needing a transplant or if you can wait...etc...you've gotta find out what shape your liver is in, and a biopsy is the only way to be sure about that...blood tests and ct scans... can only tell you a little bit...

if you truly have no insurance then you need some advice on how to go about this...i believe that, depending on where you live, they can not deny you of needed health care if you go through the right channels. the question is what are they? does anyone here know? where do you live???

THIS IS YOUR LIFE, AND I WOULDN'T LET THE DR.S DECIDE THE OUTCOME... YOU NEED TO BE FORCEFUL ABOUT GETTING THESE THINGS TAKEN CARE OF. ESP... IF YOU HAVE NO INSURANCE... THIS DOESN'T EXACTLY MOTIVATE THE DR.S TO DO RIGHT BY YOU...UNFORTUNATLY... YOUR FUTURE IS IN YOUR HANDS...YOU MUST MAKE SURE YOU GET THE NEEDED TREATMENT ASAP AND FIND OUT HOW TO DO THAT...or you could be facing end stage liver disease before you know it...

won't your dr/or healthcare system work with you? this is a life or death situation... it sounds like you have the symptoms of serious liver problems that can get bad fast. you do not have time to wait arround... perhaps some do, but not if your liver is haveing those symptoms...bloating can be a sign of liver failure...i don't mean to scare you but, yes, you should be concerned...

i pray that you will recieve the help you need soon. let us know what you find out... keep coming back here for support... we do care...

[britgirl]

I  the UK they have decided to stop giving biopsies to genotype 2s and 3s bsfore tx. The thinking is that they have such a good chance of clearing that you should do it whatever damge you have.
As for 1s, since the odds are so much lower, they will continue to biopsy.

[n2cats15]

Hi everyone! I am 11 1/2 weeks into the 48 weeker.  I am a 1a stage 2.

I saw my liver dude on Monday.  Had my viral load rechecked.  I had been told all along that because I am a 1a that I needed to do the full 48 weeks - regardless of whether I cleared the virus or not.  The reasoning being that it stopped and perhaps reversed the fibrosis.  By my hepatolgist - who is nationally known for his work with Hep C patients - said that if I haven't cleared the virus he will stop treatment.  He says there has been evidence that nothing changes if we don't clear the virus.

Have any of you heard this?  I was mentally prepared to do the 48 weeks. Is there research out there to support one side of the other?

Help!

[britgirl]

I think you have to weigh up whether 24 weeks of interferon and the side effects it might cause (some permanent) are worth a possibly slight and temporary improvement in fibrosis. The hospital I used to go (also world famous for liver care) stop all genotype 1s who have not responded at 24 weeks.

[Indiana]

WHEW!!!   Thats a whole lotta questions packed into 1 thread here.
NO WAY I would stop just because my ANC was below 1000. Hell, most all of us went below THAT. 750 is the point where they almost have to "think" about altering tx. I would DEMAND neupogen, a second opinion, or at the very worst...a "temporary" peg reduction for 3 weeks and then a recheck. To stop now would be to throw away your best chance at beating this.

Yes its true that type 2's and 3's have the best odds st beating this. It has also be shown in studies that type 3's have the worst rates of progression. That is why it's so important for them to pay close attention to testing and tx. I can go look up the studies if anyone really want them and can't find them on their own.

The perspective on biopsies is changing. Biopsies are an "invasive" proceedure and are not without risks. Little things like knicking a pancreas, or a bowl, or bleeding to death...."little" things like that can happen. These "little" things can cause permanent damages of their own....or even death. Although these problems are rare now, the dangers are still there. The docs now are shying away from biopsies unless there is a compelling reason to do one. If you are going to treat anyways then there really isn't any BIG reason to have one. I didn't. If you are still sitting on "The Fence", or having some MAJOR symptoms, then by all means get one done. It does provide the last bit on information you need to make a decision on tx. It can also aid in decision making if you have complications on tx and need to make some tx decisions on how agressive to be. But it is NOT a "requirement" by any means. Weigh the pros and cons before you get one.

Hey Litecloud....I hope you got bOTH the hep A & B vaccines. You don't want to get either disease with Hcv.

Hmmmm...I never thought about them Otters. Do ya think they might be in Cahoots with The Badger too? They look Soooo cute.....what a disguise! I will have to set up a patrol to keep an eye on them varmints to check this one out.

[Indiana]

hahahahahahahahaha
Since girls NEVER fart, I suppose ya gotta blame it on "something". VERY good move...."baby Dragon breath". But soon you will need to come up with something else to blame it on after you clear the Dragon.
Most girls I know blame the closest Man or Dog in the area. Thought I'd pass this along as a public service.

[madbyron]

I understand how emotionally charged these situations can be while you're still trying to adjust to the effects of tx on your mind and body. But your doctor should take a deep breath and not over-react to those numbers. Sure, they are a little low, but that's normal on tx. Many people would love to have those numbers at week 4. Before you discuss the situation with him, read the <a HREF="http://www.rocheusa.com/products/pegasys/pi.pdf">Pegasys product guide re: Adverse Reactions/dose reduction for low anc</a>. Calmly lay it out to him that you do not want to quit and you need his help to keep you on track.

If your doctor wants to stop you for an anc below 1000, he evidently is not very experienced and you may need a new doctor. Since he is unwilling to use Neupogen (and I don't think it's warranted yet), ask him to simply allow you to follow the Roche's recommendations, which most people seem to feel are very conservative.

I know of know supplements to boost white cells, but you can try folic acid for hemoglobin and RBC. Good luck.

[litecloud]

Thanks, I had a hep A vaccine done around 91/92 and when I was tested for hepc it was still working, just need the B vaccine, which I would like before treatment starts. Otters/Badgers, Am thinking if yah can't find them, maybe they all went to the loo !!

[thanbey]

Since viral load is not the optimum for assessing liver disease or status of the liver's condition, a biopsy is the gold standard for making that determination.

Viral load has never been associated with the health of the liver, not in any independently funded study.

And, since interferon therapy does NOT turn back the clock on the health of the liver, any damage that is seen on biopsy needs to be under a doctor's care, regardless of treatment outcome. For this reason, it is folly to think alcohol consumption, smoking or exposure to liver toxic substances is just fine after a course of successful treatment. These substances can further damage the liver regardless of the viral status. Unless you have had a post treatment biopsy and know for a fact that your liver is "healed," it is a mistake to assume this is so based on studies of other people.

Research into a cure for hepatitis C is now directed at anti-fibrotic agents for just this reason. Eradicating the virus MAY stop progression, but there is no guarantee of that. Studies have shown that those who sustain a response do better over the two year post treament than those who do not, no doubt, but this is not 100% and it is still only a two year window. Caveat emptor.  

Without a biopsy, you will not have a "snapshot" of the condition of your liver at the point in time PRIOR to interferon therapy. It may be important to know at some point whether the interferon did you any good from a histological perspective. In fact, it could be critical information that is lost if a biopsy is not done.

NO genotype is associated with worsening progression. There is no bad genotype other than those that expose a patient to a higher rate of potential adverse events. Genotyping is a matter of determining what the length of treatment will be for those who need to treat and that is all.

And lastly, your doctor is the expert on you, not anyone on the internet. The only thing that is worth demanding, in my opinion,is the biopsy.  Your doctor has your medical chart and has the experience to treat you and assess where the level of risk BASED ON YOUR MEDICAL CIRCUMSTANCES lies for you. If you are not satisfied, discuss you dissatisfaction with your doctor. Getting into a confrontation with your doctor isn't in your best interest.

You will not die without treatment or if treatment does not succeed. Please do not fall into this melodrama of the "dragon eating your liver." Gather your relevant facts, your support system, and discuss all of the potential benefits and costs with your doctor.

Make decisions at strategic points. But continuuing treatment is not worth any risk/cost unless you decide it is and if your doctor agrees.  There are only a few cases where that would be true. Very few. And that decision should be a medical one, not one based on internet superstitions about liver eating dragons and interferon in shining armour.


If the interferon succeeds and you realize an SVR, you are not off the hook in caring for yourself and maintaining good health and liver friendly habits. Alcohol ( and smoking) abstenance is prudent for anyone who has ever had liver disease. Alcohol isn't good for anyone's liver.

If treatment fails you, you are not doomed. There is reason, and  lots of it, for hope and the promise of new, less toxic, and more effective treatments in the relatively near future. The United States is not the only place, or even the best place, where good research is taking place. Australia, Canada and France, Germany, even Italy have committed many more resources to basic research and services to patients than the USA currently is committing. Patients in those countries have demanded it.

I hope this helps,

thanbey

<a href="http://www.hcop.org">Hepatitis C Outreach Project</a>

[LvdByGod]

comment above by thanbey,..."you will NOT die without treatment or if treatment does not succeed..."

please give me THE STUDY TO BACK UP THis STATEMENT...if you do not increase your chance of morbidity by keeping the virus, than why go on interferon at all????? common sence here....

if alchohol increases your liver damage rate than you can bet hep c does too. why do we need further testing beyond 2 years for this? this is common sense!!!  if we can kill the virus we should...

JUST AS I CAN NOT TELL SOMEONE THAT THEY WILL DIE OF HCV YOU CAN NOT TELL THEM THEY WILL NOT...

[cuteus]

Wow, it amazes me how anyone can make a definitive statement as to whether we are going to live or die, almost sounding like gospel, based on their opinion.
Do your own research to reputable sites and the ultimate decission lies with YOU with the assistance of a provider to monitor the progress.  Find one that will work WITH you and for you, but he is not the absolute last word on anything about hep c, NO ONE is.

[thanbey]

Morbidity and mortality studies support the statements made above.

Everyone is going to die. But very few die of hepatitis C.

Those who do are generally those who were diagnosed too late to be treated with interferon therapy or to make significant changes to lifestyle. That is what the studies tell us.

best,

thanbey

[cuteus]

I believe those are studies on liver disease/failure related to hcv.  Given.
Some studies found cryoglobulins present in various tissues in our hcv infected body. Who can really say if this presence is not contributing to the deterioration/failure of this organ and our possible demise in the future?  Stats won't show that illness to be contributed to by chronic hcv and liver related.  
NO one really knows, we should take most information on hcv as an educated scientific guess based on limited data.
WE (in tx) are the data of the future retrospect studies.  Some of us might not be around to see them.
I believe the unknowns of hcv to be significantly higher than the present stats show.  That is why I would never dare to present a statement on hcv as the ultimate truth.

[thanbey]

Cuteous,

Fair enough. But why assume, in the face of so much evidence to the contrary (50 years of data, by the way), that people are going to die without being treated or if the treatment fails them?

It seems to me that it is less likely anyone will die of cryoglobunemia (has anyone ever died of cryo?) or hepatitis C whether treated or not.

Until we do know more,and I certainly agree we need to, why in the world assume the worst and keep believing that the sky is falling? Why dash hope for so many people who cannot treat for various reasons or for whom the treatment has made things worse, not better, or for whom it has had little effect at all? Only a small percentage of those with hepatitis C have the choice to treat, can tolerate it, or realize a rsult from it.

There is simply no generalizable  scientific basis  for the treat or die point of view. None.

thanbey