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Author Topic: Newly dianosed, Just got results of HCV RNA PCR Qualitative & Quantitative  (Read 31870 times)

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Offline libracats

  • Member
  • Posts: 14
Hi, I decided to wait to post until I was sure, but it appears I have an active hepatitis c virus. No idea how long Ive had this, or how or when I got it. And yes, I did experiment with IV drug use in my teens and early 20's. I was a heavy drinker for many years. But I quit drinking completely almost 10 years ago.

HCV RNA PCR Qualitative - Positive
HCV RNA PCR Quantitative - 175,415 IU/mL (ref. 0-<12)

My regular blood tests came back normal, liver values normal. Abdominal ultrasound states I have fatty liver, but otherwise normal.

My Dr. is not recommending any treatment but wants to do blood tests every 4 months and and ultrasound every 6 months. She told me to stay away from Tylenol, Vit A and Alcohol.

I am a 57 year old female. I eat well, am 5'6" 128lbs, so a normal weight, and walk frequently and try to maintain a good weight. I actually feel healthier now than I did 20 years ago. I really have no health issues at all, except that I do have asthma, which is also under control.

btw, this all started when I decided to give blood a little less than a month ago.

Im not freaked out about this, just a little confused. Ok so what do I do now? I appreciate any input. Thanks.

Jo




Offline jberlin

  • Global Moderator
  • Member
  • Posts: 308
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Hello,

You have likely had this disease all this time.  I carried Hep C for 36 years and was also one of the luckier ones as the disease had progressed very slowly.

What would I do? Well, I did it, at age 57 by the way.  I decided I did not want to have the disease decide to advance and perhaps not be as strong to be treated, and I surely didn't want the prospect of a liver transplant or worse.  So, I chose a to wait for my child's graduation, then do the 24 week treatment.  Now the treatments can be even shorter and easier, so in my mind there is no reason to roll the dice with this disease.

Lots of factors that I may not know, that you and your MD should discuss - but I would make sure to have an MD that was an expert with Hep C advise you.

Hope this helps,
jack

Offline libracats

  • Member
  • Posts: 14
Thanks Jack, well this is one reason I decided to come here was to find out what others did, about treatment, or lack of. My Dr. is very nice, but hardly a hep c specialist. And since I have no ins. and she treats a lot of patients without ins. she often quotes costs of everything. She keeps telling me the treatment costs $85,000 and it has horrible side effects. That news would turn anyone off.

Jo

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 308
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Well, like I said, many factors I may not know about.  While I hope everyone will find a way to get insurance coverage, there are also plenty of ways to get treated without it I think.  As to the horrible side effects, compared to the folks in this forum like myself that went through 72 plus weeks of the old treatments, the current stuff is a walk in the park! Kidding aside, no treatment is risk-free and side-effects can vary, but treatment times and harshness of the average treatment has been greatly improved. Try to find an expert in your area if you can, and that MD should be willing to refer you. Or, there is always google!  Good hunting, and let us know.  -jack

Offline Mike

  • Member
  • Posts: 999
Hi Libracats,

Your doc might want to research the new treatments - they are very tolerable and short.

If you can get rid of this disease (it is a chronic illness and can shave 15 years off the life course), why wouldn't you want to get treated?

There are plenty of programs that can offset the cost.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline libracats

  • Member
  • Posts: 14
Thanks Mike. Im looking into finding another more experienced Dr. in my area to talk to about this. So far I found one that does research studies that might be good, since that wont cost anything and it says they don't use placebo's. Everyone in the study gets medication. I am obviously going to discuss my situation with a Dr. first. I really would like to get rid of this if I can, and before it gets worse or damages something. So far it looks like it hasn't, except for the fatty liver.

Jo

Offline Mike

  • Member
  • Posts: 999
Hi Jo,

That sounds like an excellent plan!

Also, open enrollment for Obamacare starts in October and you might want to check the health insurance options you might qualify for.

I always try to run an A & a B plan.

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Hi Jo,
All have given good suggestions, and you have a good attitude about this. you will do yourself great good with good diet, exercise....etc. All that aside, I took a fibrosure blood test after I took a ultrasound. The ultrasound showed minor fatty tissue, the fibrosure showed stage 3  fibrosis bridging.  I took ultrasounds for years and felt good about it, but the fibrosure is more detailed and finds what an ultrasound cannot see. Ask your Dr. about it, cause that can determine your treatment decision.   You have no symptoms it seems, and I lived for 43 years till I discovered the fibrosis. The disease progresses slowly and behaves in different manners. A low viral load as yours seems like a positive thing, but this virus does advance itself in the liver no matter what the count is.
I think you have time to make good decisions as suggested, but error on the side of caution can be a good action here.

Offline tebrlovesherpets

  • Member
  • Posts: 16
Hi, have you seen a Hepatologist and received a Liver Biopsy?

Offline libracats

  • Member
  • Posts: 14
Thank you for your responses. I have only been to my regular Dr. who did the tests mentioned in the first post. Blood test (CBC and Chemistry panel), Hepatitis panel, (A, B and C), and the HCV RNA PCR Quantitative & Qualitative, plus an abdominal ultrasound. I will ask about the other tests.


Rainbowray, did you receive treatment for the fribrosis and/or hep c?

tebrlovesherpets, I have not had a liver biopsy. Would that tell me more details about the fatty liver, which is all they seem to have found, or something else?

Jo

Offline libracats

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  • Posts: 14
I just had a very productive phone call with someone at the clinical trial office who explained more about hep c and tests and such. In order to sign up for clinical trials, I need a fibroscan and a test for genotype. After giving her all my results and some medical history and eating and exercise regimen, she said I probably have some time before I would really need treatment and didn't think with a viral load that low that I would have too much fibrosis, but of course, she is just guessing, I understand that. There can be a waiting list on some of the trials. She did still recommend getting these two tests done tho.  She really put my mind at ease.

Jo

Offline Mike

  • Member
  • Posts: 999
Hi Jo,

A liver biopsy is the best way to gauge liver disease, because, unlike a scan, actual liver cells are viewed under a microscope by a pathologist trained in cellular damage and disease.

However, it is invasive.

A fibroscan, which is a new device not readily available in the US, is a good alternative to a biopsy, and, arguably, just as accurate in grading certain types of liver diseases/damage (i.e., fatty liver, fibrosis, inflammation and cirrhosis).

An ultrasound can also detect fatty liver and fibrosis; but not to the degree of a biopsy or fibroscan.

Regarding treatment for fibrosis (which I have), there is no treatment, other then stopping the pathogen causing it. In the case of Hep-C, that means ridding the body of the virus.

This is why treatment is so important. If you can stop the progression/damage to the liver which is caused by Hep-C, the liver, in many cases can rejuvenate to some degree.

Once the progression/disease hits a certain point (i.e., cirrhosis or cancer), there is no turning back the clock.

Once the doctor knows the degree of progression, there is really no need to go any further, unless the liver disease is advanced or there are other clinical markers.

This is because there is no real way to treat minor or moderately sever liver disease/damage, other then stopping the cause of the disease (which stops the damage and/or progression). In sever cases, the only treatment is a liver transplant. There is nothing in between these two points.

The way I look at it, everyone with Hep-C should be treated - especially given the effectiveness of new treatment drugs. If you stop the virus, you stop the progression of liver disease.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B


Rainbowray, did you receive treatment for the fribrosis and/or hep c?

Jo

Hi Jo,
I saw your question to me, My  treatment is to rid the virus , to stop any further damage the virus needs to be eradicated from the body. If the liver ends up with non-permanent damage such as non-bridging cirrhosis then it will heal itself. The liver is the only organ that can regenerate, unless there is permanent scarring. That is why I did not wait for the better treatments, I was at Stage 3, letting it go to stage 4 is not
my idea of getting healed. I always refused biopsy's because they have more risk than the other fibroscan or fibrosure tests. I have read that all tests have chance of errors in the procedures, so I choose the noninvasive. I had one over 35 years ago by the head Liver Doctor at UCSF Medical Center and it was not
a pleasant experience. If I were you, I would get the test they are asking for asap, and get on that waiting list. It is worth it.

Offline tebrlovesherpets

  • Member
  • Posts: 16
Hi Jo, it it Tebrlovesherpets

I would most definitely seek out the professional advice of a Hepatologist.

My Liver Biopsy was like a pin-prick, but I have had far more invasive things in my 60 years, so that may be just my opinion.

It is best to seek out the best, and get questions and answers from them as to:

further testing, etc. etc.

All the best to you,

Tebrlovesherpets

Offline libracats

  • Member
  • Posts: 14
Thanks everyone, I really appreciate the responses and your experiences. I will most definitely have the fibroscan done. The place near me (about 15 miles away but close enough) does Fibroscans for $350 cash for patients without insurance. Its the same place that does the clinical trials. I don't know if I can get one more local yet. I have put a call into my Dr. I also plan to try and get on that clinical trial waiting list. I just have to find out what genotype I am first.

I certainly know a lot more now than I did a week ago, so thanks again.

Jo

Offline Bucky

  • Member
  • Posts: 341
Hello Jo,   I am glad that they will accept a fibroscan and $350 is a deal. My copay and deductible for my last biopsy were much more than that and I have pretty good insurance. I must say that the biopsy was not a big deal (they took two samples) but I was high as hell on IV medication.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline libracats

  • Member
  • Posts: 14
haha Bucky, good to know. Thanks.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Just for info,
My understanding is a  biopsy cost thousands of dollars. My fibroscan would have cost me $200.00 if insurance did not pick up the tab. You get the results in 5 minutes.  I also believe the drugs given during a biopsy is tough on the liver. Do what you have to do though, and I am glad things are working out.

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

Offline libracats

  • Member
  • Posts: 14
Rainbowray, I cant access that link, but yeah, the lady I talked to told me the biopsy would be really expensive and that I really didn't need to do it if I got a flbroscan.

Jo

Offline tebrlovesherpets

  • Member
  • Posts: 16
Hi Jo,

Since found out you guys are in the U.S.A., so I am from a different Country.  So where we are all the tests are paid for by the government, so the Hepatoligists do all tests necessary to form the conclusion of your status, type, etc., etc.

If a hepatologist states a liver biopsy is recommended / necessary .... listen to him .... if you have a good feeling / trust him.  They are the experts .... no offence, but we victims are not the experts. 

The amount of prescription drugs I have had to take in my life .... my liver should be shot .... let alone; alcholol....before I KNEW I had Hep C. 

Listen to your Hepatologist. 


Offline tebrlovesherpets

  • Member
  • Posts: 16
Hi Jo,

Perhaps I'm mistaken, but I think I can recollect that Hepatologist did a Fibroscan AND Liver Biopsy to determine what Genotype I am. 

Apologize if I'm wrong. 

Is your GP ordering these tests? 

Once again, I cannot stress enough, you need to see a Specialist..... meaning a  HEPATOLOGIST.  THEY are the experts.

Remember this is your body ..... your life.  When you are in the hands of the experts, you have to rely on their expertise and the Lord above.  There is nothing else.  Trust me .... I know .... I have already beat AML - Accute Myloid Leukemia ( the worst Leukemia ) and I BEAT IT!!!  I am a 31 year Survivor from that!!! 

Tebrlovesherpets

Offline libracats

  • Member
  • Posts: 14
I do not have a Hepatologist at the moment, but I do plan to speak with one hopfully.  I haven't scheduled any tests yet, Im just starting to talk to people. I was told by the woman I talked to at the clinical trial office that the genotype result was from a blood test. The fibroscan is a separate test to measure the extent of fibrosis (if I understood her correctly). Thanks for all the info!

Jo

Offline tebrlovesherpets

  • Member
  • Posts: 16
Hi Jo,

You have to be referred to a Hepatologist by your GP.

Genotype is NOT determined by a blood test, otherwise you would already know what genotype you are or if you have anything besides a fatty liver!

Take Care!!!

Offline libracats

  • Member
  • Posts: 14
Im only stating what the girl told me. She said it wouldn't have been on a regular blood test, but you have to do a blood draw to determine genotype. I guess I will figure it all out at some point. ;)

Jo

Offline Mike

  • Member
  • Posts: 999
Just to clarify:

The specific genotype is learned through an analyst of the Hep-C virus present in the blood. It is one of the three most commonly ordered blood tests for Hep-C infections.

Here's an article that explains each of these blood tests:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=9&cad=rja&uact=8&ved=0CHkQFjAI&url=http%3A%2F%2Fhepatitis.about.com%2Fod%2Fdiagnosis%2Fa%2FHCVtests.htm&ei=7XD-U5SdEdCyogSl9YCIBQ&usg=AFQjCNGxLQqj7nTSulLYzVaIwUgVnNtYhA


Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline tebrlovesherpets

  • Member
  • Posts: 16
Ok, well.... the girl told me ?????

Hepatologists are the experts .... if you don't want to know everything about your disease then ask whomever. 

No offence, but sounds like you do not want to know everything that is possible to be obtained about your specific case.  But that is your choice.  Anyways good luck and I'm done talking!!!  People can say anything .... experts dish you the goods!!!

I realize you are confused and probably worried ... but listening to everyone and anyone does not get you the answers you need. 

HEPATOLIGIST !!!

Take care.

Offline Mike

  • Member
  • Posts: 999
Hi Jo,

 There are 3 types of physicians who may specialize in Hep-C treatment:

•   Gastroenterologist: Gastroenterology is a sub-specialty of internal medicine. These physicians specialize in internal medicine, with specific knowledge of the digestive system and the organs that are part of this system. The liver is a critical part of the digestive system, as it aids in metabolism and digestion. Because of this, gastroenterologist are very knowledgeable  regarding liver function, liver disorders and treating Hep-C

•   Infectious Disease Specialists: An infectious disease physician treats illness caused by all types of microorganisms, which include viruses and bacteria. Infectious disease physicians are trained to treat diseases caused by the hepatotrophic viruses, such hepatitis A, B and C viruses, as well as heptic diseases caused by bacteria. However, infectious disease physicians are not trained to treat caused by alcohol, which are treated by other types of specialists.

•   Hepatologist: A hepatologist is a gastroenterologist who receives additional training in treating liver diseases. These physicians are sub-specialists and are experts in all the diseases that affect the liver, including hepatitis.

Any of these specialist can treat and manage viral hepatitis, including Hep-C.


Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline tebrlovesherpets

  • Member
  • Posts: 16
It does not really matter at this point if it is an Alcoholic Hepatitis C origin.   It is Hep C   ....  period!!!  You cannot go backwards .... you can only move forward and deal with whatever life throws your way.  Sucks for lotsa' people .... but that's life!!!

Most of us know to some point where we think we may have contracted Hep C .... that is insignificant once you know you have Hep C.  Unless you are in the category who received tainted blood 1992 and prior and have a claim for compensation...then apply for compensation.  This involves people who have had blood transfusions 1992 prior and the blood was likely tainted.  Drs. who have a long-term relationship with their patients have to make a very educated guess, based on their patients lifestyle, surgerys, previous diseases, etc., etc.   The latter being more defined, the other two options .... mainly at the patients being honest with their GP, and I'm sure some diagnosis are just ????

Why would you go to a farmer to fix your car?

Get referred to a Hepatologist and go from there ..... forward, dealing with Hep C .... hopefully like we all wish .... Cured!! and go on with your life and it's pleasures.


Offline tebrlovesherpets

  • Member
  • Posts: 16
I meant not misdiagnosis .... I meant the  SOURCE  of the infection may not be able to be determined by the GP.  He has to make a very educated guesstimate, based on your history etc. 

However irrevelant once Hep C has been confirmed positive.

Deal with the fact that it may progress and treatment will be needed. 

Get the facts .... move forward .... get well !!!  Simple as that!  Once you have a disease it only is eridacated without some sort of treatment .... by MIRACLE. 

Best wishes to all Hep C victims!!!

Offline libracats

  • Member
  • Posts: 14
Hi Mike, Thank you so much for all your info. You have been very helpful!! I just have one question ( at the moment) Under the infectious Disease Dr. this was mentioned "However, infectious disease physicians are not trained to treat caused by alcohol, which are treated by other types of specialists." Are you saying you can get Hep C from drinking alcohol? My understanding was that it was only transmitted thru blood. I have so much more to learn.

And tebrlovesherpets, be kind, I just found out, Ive barely talked to anyone yet, give me a chance. The person I was speaking to works in the research dept of the clinical trials facility. All the the Dr.s there are infectious disease specialists. Im sure what she was telling me was quite basic. Im not going to take just "anyone word for it" I am fairly intelligent. Im just trying to gather facts so I can make some decisions. The fact that Im healthy with no apparent damage so far, is letting me feel comfortable enough to not rush into anything without knowing what Im getting into. I am absorbing everything said here and like I said before am so appreciative of all the info. So thank you.

Jo
« Last Edit: August 27, 2014, 09:35:48 pm by libracats »

Offline tebrlovesherpets

  • Member
  • Posts: 16
Jo .... good  luck to you.

Offline Mike

  • Member
  • Posts: 999
Hi Jo,

No. You can't get Hep-C from drinking alcohol.

What I meant is that Infectious Disease Specialists only treat diseases caused by viral or bacterial infections. Since Hep-C is a virus, they are well qualified to treat the infection.

Stated differently, you would not refer a person who had liver issues caused by alcohol, or for that matter, liver damage caused by an automobile accident to a Infectious Disease Specialist.

In those instances, a Gastroenterologist or Hepatologist would be consulted.

Regarding Hep-C, 80% of those infected with the virus never develop liver damage or disease. In other words, a person can be infected with Hep-C for decades and not have any signs, symptoms or damage caused by the virus.

Since the liver damage caused by Hep-C cannot be "fixed" by a specialist, the only treatment option is ridding the body of the virus. That's is why treatment is so critical for those with advanced liver damage/disease caused by the virus; and why there are a variety of qualified medical specialist who treat and manage Hep-C.

That is also why these new drugs are miracles and so exciting for those who have had Hep-C for years and have progressive liver disease. Not only are these drugs curing Hep-C; they are literally saving lives!

Amen!

Best wishes, Mike






« Last Edit: August 27, 2014, 10:42:50 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline libracats

  • Member
  • Posts: 14
Oh ok, that makes sense. duh. I was trying to read your very informative posts but kept getting distracted by the other ones. I probably should have been able to work that out, lol. The infectious disease Dr's are not the liver specialists, got it.  Thank you. I also have been doing some reading and the person I spoke to also told me that hep c is a very slow virus. I just read tonight where a Dr. said more people die with hep c than they die of it. I bet there are many that go their entire life without ever knowing they had it. I certainly wouldn't never have known if I hadn't attempted to give blood. I did get the impression that I wouldn't be top priority in a trial, but Im going to sign up anyway and keep searching for other options. Thank you Mike!

Jo

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Rainbowray, I cant access that link, but yeah, the lady I talked to told me the biopsy would be really expensive and that I really didn't need to do it if I got a flbroscan.

Jo

Jo
Copy and past the whole line, as the hyperlink itself will not work.
http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

Also just for info, I am being treated by a Hepatologist at Univ. of Pacific in San Francisco. He agreed with me if I can avoid a Biopsy then do so. The way to please the insurance is get both a fibrosure blood draw and a fibroscan which is what I did. My insurance paid for both, but if I had to the $200 for the fibroscan was not going to stop me. In the past to qualify for treatment of Hepc the protocol was a biopsy as prerequisite to satisfy the payer of the drugs, (insurance)
The fibrosure and fibroscan can satisfy that protocol now. I never wanted any of the past (harsh) treatments, so I always refuse the first line of FDA protocol, hence the biopsy. ----Take Care, I am sure you will get a good end result. Enjoy Life.
Ray

Offline tebrlovesherpets

  • Member
  • Posts: 16
Jo ... get referred to a SPECIALIST.  It will aleviate distractions of any source!   :)












Offline libracats

  • Member
  • Posts: 14
Thank you Ray. That's a very informative link! I feel confident now I am on the right track.

Jo

Offline tebrlovesherpets

  • Member
  • Posts: 16
 ::)       :)

 


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