Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Questions questions questions

Brian1412 · Guru

I just finished with the Dr. I am undetectable , he said all labs were excellent. He also said that there is no need at this time to do the liver biopsy as he is certain any damage to liver is minimal and would recover. That was fine with me today !!

He also fixed it so he will be my Dr. for another year which is a huge relief for me as I don't want to be in the clinic I was in before. This Dr is excellent and I am glad I am staying.

I have 9 pills left until I am done with treatment . My next appointment is in 3 months

I'll take it for now ! I feel pretty decent . I even gained 5 pounds !!

Brian

Brian1412 · Guru

Thank you for the excellent post. I found it odd that my healthcare. Facilty doesnt have one being they tout being the 8th largest in usa (whatever. That means) the only thing my dr said was i have. Some damage. I have 12 or so pills left to eot so i am going to request biopsi..the np's already calling me about appointments so its coming. I see specialist. Wed. My alt and ast have been high for some years now until treatment with harvoni. Again no history of drinking or drugs. As much as i have issues with gastro and somtime pain in my liver area. I need to find out while i have the specialist. Thank you for the great information

mallani · Guru

I don't mean to cause doubt about Fibroscan.

I just have doubts about my specific readings. My initial Fibroscan was done in 2008, and my doc had just purchased the first Echosens Machine in Queensland. I remember the procedure well I was his 20th patient and all of his previous patients had a biopsy in the previous 5 years. I had not had a biopsy since 2001- at that biopsy I was F3-4 with a moderate fatty liver. We did 12 readings with <10% discrepancy, and my average was 30.1 .At the time, my ALT was 155, which was higher than my usual range of 80-120. This makes me think I has an episode of acute flare going on. It is well recognised that fatty liver and acute inflammation will raise the Fibroscan reading. I was undoubtedly cirrhotic, but a true reading would have been maybe 20-25.

At my 18 month follow-up after EOT (and SVR), I had lost 10kg and was a more respectful 78kg. My ALT was 31. The 8.8 kPa result would have made me a F2, which is extremely unlikely. From the feel of my liver, it is more likely to be in the 10-14 range. My doc agrees. He now has had much more experience using Fibroscan, and has the latest Echosens machine. We do a lot more biopsies than in the USA, so he now has a vast range of correlations. He uses a reading of 14 kPa as the lowest limit for cirrhosis.

Fibroscan is only one tool for liver assessment. It is pretty good but biopsy remains the gold standard as far as I'm concerned.

Just a final word about followup after SVR. The subject of fibrosis regression is obviously very important to cirrhotics. A large survey published early this year looked at several hundred post-SVR cirrhotics, at least 2 years post SVR. The figures quoted were: 55% showed improvement by at least one stage (on the Metavir scale), 35% showed no change and 10% showed worsening of cirrhosis. More work is being done to look at the factors that influence this. I can't find the article at present- I have dropped several subscriptions and may not be able to access it. However, there is a problem. Patients (and Hepatologists) are reluctant to have followup biopsies after SVR. We are finding that a lot of followups are based on Fibroscan and FibroTest (FibroSure). I really have doubts about FibroTest- the reading uses the GGT, total bilirubin and ALT. After SVR, these readings will mostly be normal (even low normal) and give falsely low FibroTest scores. Let's wait for the researchers to come up with more info.

boostm3 · Member

mallani wrote:
Gracie,
As Jill said, this is Brian's thread, so I'll be brief.
Yes, I still consider myself cirrhotic. My doc and I don't believe the Fibroscan result. There will be still a lot of activity in my liver. The fibrosis needs to be absorbed, the useless nodules need to be broken down, and hopefully new functional lobules can be formed. There is still a risk of HCC when there is so much cell regeneration, so 6 monthly Ultrasounds are a must. I'll wait until my liver feels softer before I get another biopsy. Then I'll know for sure.
My faith in Fibroscan has taken a hit- I believe my initial reading was incorrect as well. I'm doing some part-time work at Greenslopes Hospital and will be able to get a better idea of fibroscan. Cheers.

Mal,

That sucks about your Fibroscan inaccuracy. I have always read that its main risk of inaccuracy occurred in the F2 and F3 ranges, and in the F0-1 and F4 ranges is where it was most useful due to highest accuracy. I was thinking about getting a Fibroscan after my SVR24 test in July, but the last thing Id want is an inaccurate reading higher than what my last biopsy 2 yrs ago reported which was F0-1. So, unless I decide to do another biopsy, which I probably wont, Ill have to use that last biopsy, which was 1.5 yrs prior to treatment, stand.

-- Edited by boostm3 on Monday 1st of June 2015 04:47:21 AM

Brian1412 · Guru

You know every poece of paper they have. The words 8th largest healthcare in the usa. I dont believe it and i always so to them bigger doesnt mean better......

Brian1412 · Guru

They keep telling me its our states policy. And i called bs again.cant be sunshine law. So i dont know.its on the drs list to answer . Maybe lawers? I dont know

Tig · Admin

Hey Rob,

How about I send you a copy of a VL report with "undetected" prominently listed? That way you can show them how the rest of the labs do it! Ha, ha! I just can't figure that one out...

Brian1412 · Guru

Yes mall: i acually called the labs and asked again. Why they dont /wont put undectectable on my labs. Talked to. Suits and he said The same thing. I am glad for my specialist. But i would. I fully expect on completion of. Med.being sent back to np and the clinic for anything thst my case calls for all treatment as they want to vut my costs. Off yheir books.my specialist. Will fight them but they will win...i am trying tobe informed as much as possible with at least the right. Questions :i hsve to get this biopsi before they cut me out off. By the feel of my liver.i know it isnt right

Gracie · Guru

Should start a fibroscan thread for informational purposes. People treat it like a biopsy and it may not be that accurate After all.

Sorry Brian for butting in... :)

mallani · Guru

Gracie,

As Jill said, this is Brian's thread, so I'll be brief.

Yes, I still consider myself cirrhotic. My doc and I don't believe the Fibroscan result. There will be still a lot of activity in my liver. The fibrosis needs to be absorbed, the useless nodules need to be broken down, and hopefully new functional lobules can be formed. There is still a risk of HCC when there is so much cell regeneration, so 6 monthly Ultrasounds are a must. I'll wait until my liver feels softer before I get another biopsy. Then I'll know for sure.

My faith in Fibroscan has taken a hit- I believe my initial reading was incorrect as well. I'm doing some part-time work at Greenslopes Hospital and will be able to get a better idea of fibroscan. Cheers.

Gracie · Guru

mallani wrote:
MALLANI...
Since you have regenerated back to an F2, are you still considered cirrhotic? Do you have regular blood tests and ultrasounds? What statistically is your chance of getting HCC now that you've had such a successful outcome? Do you expect to keep improving as time goes by?

......................
As far as liver regeneration is concerned, I'm a good example. I am cirrhotic (Fibroscan F4-30.1kPa before treatment). My liver was slightly enlarged and firm, but with essentially normal Ultrasound and MRI. My ALT was always between 60-150.
Since SVR 2.4 years ago, my Fibroscan score has decreased to 8.8, my liver is smaller and much softer (but still not normal) and my ALT is below 40. All of my cirrhosis markers have improved. This can only be put down to fibrosis regression, with improved liver function.
...............

Cinnamon Girl · Guru

Hi Mona, welcome to the forum, I`m glad you found us.

Yes nausea is a normal side effect with that combo and is most likely caused by the ribavirin. Quite often people find that the side effects are worse during the first few days and then settle down as your system adjusts to the strong drugs.

I wonder if you`d mind introducing yourself in the New Members Area, please? This is an ongoing thread dealing with Brian`s questions so it would be better if you could start off a new conversation. Just click on `Start a New Topic`.

Thanks, and best of luck!

Mona · Member

Hi I am on my 5th day of Viekera pak and ribaviron. Having nausea now. Wondered if that was normal and will change as therapy continues?

Femapples · Veteran Member

I'm on Viekira Pak and Ribaviron. I'm my doctor's first patient on this as he previously treated about 30 patients with Harvoni. All of his patients cleared the virus but about 5 of them relapsed. That's significantly more than 1%. I don't like those odds and I don't know why the relapse rate would be so high. My completely unscientific theory is that since Ribaviron boosts the effectiveness of the main drug, in my case Viekira Pak, maybe if all of his Harvoni patients had used it, the virus would still be undetectable.

Thoughts?

FemA.

Brian1412 · Guru

Thank you Mal. I am going to ask for a biopsy. Of the liver and my specialist will do it. Although grant extended for another. Year i am pretty. Certain. At eot,they will switch me to a. New dr. As a cost issue cnsidering the response of the meds. Just in cases. That happens. I want him to order biopsi and anything else like thst. I do need to know. Status. At eot clock will start ticking. For the bean counters.to get me to a lower tier dr or np Thanks alot.much appreciated

mallani · Guru

Hi Brian,

You're right- it's BS to say putting Undetected on a Lab Report is illegal.

If I were you, I'd want to know my liver status. Ultrasound, CT and MRI often do not give the full picture. I'd want a biopsy. This makes a big difference to followup. If you're less than F3, there's no need to do the 6 monthly imaging post-SVR, as HCC is extremely uncommon. Also the chances of relapse decrease even further.

As far as liver regeneration is concerned, I'm a good example. I am cirrhotic (Fibroscan F4-30.1kPa before treatment). My liver was slightly enlarged and firm, but with essentially normal Ultrasound and MRI. My ALT was always between 60-150.

Since SVR 2.4 years ago, my Fibroscan score has decreased to 8.8, my liver is smaller and much softer (but still not normal) and my ALT is below 40. All of my cirrhosis markers have improved. This can only be put down to fibrosis regression, with improved liver function.

I now eat what I like but try to limit sugar, as pre-diabetes is still present. Mild peripheral neuropathy also persists, but I can live with that.

We don't have followup on SVR's treated with the DAA's. It may be that the virus is totally eliminated from our bodies, but we don't have that data yet. The followup so far only relates to SVR after Interferon +/- Ribavirin- in those cases, virus remains in the body for an unknown number of years, with a relapse chance of <1%.

Brian1412 · Guru

Im not worried, i am just trying to get everything answered. For my appointment as it wont be long after eot. That i will probably be switched to np . So this will be. The time i appeciate the response

Cinnamon Girl · Guru

Hi there Brian,

I`ll try and reply to some of your questions as best I can.

- I have no idea why your heathcare system are telling you they`re not allowed to put `undetected` on your viral load test result, I have never come across that before.

- Personally I`m not sure whether you would need a biopsy at this stage, although I think you should be guided by your doctor.

- Once you have achieved SVR you will no longer have an active Hep C infection, and yes the liver does have an amazing capacity to heal and recover, according to the extent of liver damage.

- After SVR you won`t have the virus swimming around in your body but there`s a very small chance that some of the virus remains, although at such a low level that your immune system is able to keep it at bay and prevent it from becoming an active infection again. Basically once you`ve reached SVR you can consider yourself as good as `cured`.

- Whether to have an occasional drink or two is a personal choice but it`s not that easy to make the virus become an active infection again, and relapse post SVR is extremely rare, it`s just that anything that puts a strain on your liver isn`t advisable.

- It`s sensible to carry on taking care of your liver once tx is over but there`s no need for it to rule your life, you should be able to move on and be happy. A healthy, liver friendly diet is sensible for any of us to try and follow but with most things in life I believe moderation is the key!

- Yes it is a good idea to have your Hep B vaccination renewed.

Hope that helps. I`m tired tonight but I just wanted to give you a reply and try to put your mind at rest about some of these issues.

I do think it`s a good idea to discuss your concerns with your doctor and I should write down a list of questions beforehand, if you haven`t already done that.

Try not to worry but do keep asking your questions, that`s what we`re here for. smile

Brian1412 · Guru

My Dr and I have a date Monday morning, and I am trying to use this opportunity to clear a lot of things for ME as I get to eot here shortly.

1) Why does my Healthcare system tell me they are not allowed by law to say undetected on my undetected viral test? Probably more BS from them, but they still said it. I will talk to the dr, but even he said Undetected.

2)Should I have a liver biopsy? My Dr. said I have "some damage" which I believe because of my history of high alts, ast's I have had a great ultrasound by the same guy who has done them forever and he said everything looks good. I also had a pretty good and extensive CT, and MRI which both had the same conclusions by Drs who have been watching me for years from my Cancer surveillance .Speaking to the cancer aspect of my history the BEP protocol is brutal for some ( I was in that club) so that and a zillion ct scans all with contrast couldn't be nice on my liver for sure. The facility does not have a fibro scan so it is probably not an option at this time.

I was never a heavy drinker, no drugs etc and have no plans to do any of them but reading in the can I drink threads, I learned that even after Harvoni which I think it is safe to say in my case has been stellar response, that even after this, I will have Hep C swimming around in me . Does this mean that I will always have this virus in my body forever, and I will have to eat couscous for the rest of my life? "If a drink or 2 " of alcohol can return the virus to active what will a Butterfinger candy bar do? A potato chip or God forbid steak do? Is it peanut butter for life? I am having a VERY difficult time holding my weight. Why is that if the virus is " gone" ? How do I get weight back if the virus continues to be " active"

I was told at the beginning by a very good Dr. friend that I should also renew my hep B vaccine. When do I do that or is that even true ? If he said it's true , but haven't seen that once on the forum, so I have to ask.

I was always told over the years that the liver was a magical organ in the fact that it had a fantastic ability to recover. I have heard that in many different places, yet here I don't believe I have ever heard it ( I could easily missed it if it was) so I am a little confused.

I am sure there other things I can't think of now, but I am trying to get as many answers as possible from the Dr. and I trust you all to help me with the right questions.

Thank you

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