Hep C Discussion Forum

mallani · Guru

RE: For those taking Ribavirin

movebo · Member

Well, this info certainly improves my mood.
Could you give the citation for this paper? (No problem with access on my side.)
I also realize (now) that I have taken over the discussion you intended. I am new to this kind of discussion board, so I do not know how to rectify this. Just start another topic?
My hepatologist said in August he guessed early f3f4, when I said 6/6 does not sound early at all to me he replied "that is just what the pathologist sees". Maybe it is more like psychology.
Cheers

mallani · Guru

There is still a lot of research to do on resolution of cirrhosis after SVR.

The largest study showed 50% showed resolution of 1-2 stages, 2 years post-EOT. 40% showed no change and 10% showed some worsening of the histological picture.

There is difficulty in getting SVR patients back for repeat biopsies. In my case I'm having one next year at EOT + 4years. My Fibroscan showed improvement from 30.1kPa to 8.9, but I don't believe it. Certainly my liver is softer and smaller and my spleen is also smaller. This is confirmed on Ultrasound and the liver echotexture is less coarse.

Now there are many more SVR patients, it is hoped we'll get an update on this important topic. Whether a liver can revert to 'non-cirrhotic' mostly depends on the thickness of the fibrous bands, Cheers.

movebo · Member

One more tjing, I just saw your March 1st post on cirrhosis staging, helpful reading.
Seems there is a chance to not progress or even reverse to some lower F.
Would that still be called cirrhosis then? This is not a nice word at all. Not that it matters ..
Cheers

movebo · Member

Dear Mallani,

OK, that is pretty much what I figured. Thanks.

Cheers

mallani · Guru

Hi movebo,

Sorry to ramble on but interpretation of liver biopsies is something I devoted 15 years to before I retired.

Firstly, you are cirrhotic. Nodule formation is the hallmark of cirrhosis and is not seen in 'early F3-4'.

Your Pathologist is using the Modified Ishak scoring system. This is a complex system and the better Metavir system is more widely accepted and is reproducible.

The Pathologist reports 'moderate' inflammation and mild piecemeal necrosis. Even using Ishak, this is automatically 6+/18. Using Metavir, you would be A2,F4.

Also, an Ultrasound report of 'irregular margins' means nodules on the surface of the liver. This is definite cirrhosis.

It doesn't matter but it may make some difference to your follow-up after SVR. Cheers.

movebo · Member

Hi Mallani and Tig,

thanks for looking ... Even the RIBA does not make me cry after the money too much ...

Cheers

Below the text from the biopsy report (few weeks before at SOT, made me finally move):

MICROSCOPY
Sections of liver show fibrosis in portal tracts, with portal-portal bridging and nodule
formation. There is a moderate infiltrate or chronic Inflammatory cells in portal tracts. Interface
hepatitis (piecemeal necrosis) is mild and focal. There is no define evidence of confluent necrosis
or spotty necrosis. Fatty change is not a feature. No dysplasia or malignancy Is Identified.
The appearances are consistent with cirrhosis associated with chronic hepatitis C viral
infection. Modified Histological Activity Index is 4 out of 18 for necroinflammatory score
and 6 out of 6 for fibrosis/cirrhosis score.
DIAGNOSIS
Specimen labelled as "liver tissue":-
Features consistent with cirrhosis associated with hepatitis C viral infection.

here the last Ultrasound (around SOT)

CLINICAL DIAGNOSIS :
ULTRASOUND SCAN ABDOMEN
The liver demonstrates a mildly coarsened echotexture and irregular margin in keeping with cirrhosis.
No focal hepatic lesion is seen. The portal veins and the hepatic veins are patent and demonstrate normal
Doppler waveforms. No dilatation of the intrahepatic bile ducts.
The gallbladder demonstrates several polyps or adherent soft stones measuring up to 0.5 cm in size.
Normal common bile duct, spleen and visualised portion of the pancreas. The pancreatic tail is obscured
by overlying bowel gas.
No free fluid in the upper abdomen
Both kidneys are normal in size and echotexture. The right kidney measures 11.4 cm. The left kidney masures 11.9 cm.
Conclusion:
The liver demonstrates a mildly coarsened echotexture with an irregular edge, suggestive of cirrhosis. No focal hepatic lesion
is seen.

mallani · Guru

Hi movebo,

There's something odd about your liver biopsy report. Your pathologist is obviously using the Modified Ishak HAI. A fibrosis score of 6/6 is cirrhosis- full stop. A necroinflammatory activity of 4/18 doesn't happen in cirrhosis- this is only mild inflammation and is not seen with a fibrosis score of 6/6. Can you publish the report?

Could you also include the size of your spleen? Portal hypertension usually shows itself as mild splenic enlargement. The doppler studies of the portal vein are useless at this stage as the velocities and wave-forms stay normal until the portal hypertension becomes more severe . Varices and portal hypertensive gastropathy indicate fairly severe portal hypertension.

MRI TE is very new and I wouldn't take too much notice of it. Biopsy and Fibroscan are much more reliable.

Anyhow, whether you're cirrhotic or not doesn't matter at this stage. !2 weeks of Harvoni/Riba is excellent for cirrhotics who are Rx-naive. Paying for it yourself will put a hole in your bank account. Cheers.

movebo · Member

Dear Tig, thanks for the patient explanations.

movebo · Member

Just checking if the sig is there ....

Tig · Admin

Portal Hypertension (PH) is diagnosed a number of ways. The portal vein in the liver is imaged during an abdominal ultrasound, or other testing procedures and measurements of the vessel size, blood flow velocity, and size of the spleen, are some of the indicators. The endoscopy can show the presence of varices (enlarged veins) in the esophagus, as can CT and MRI. Cirrhosis causes resistance to normal blood flow through the liver, which causes everything behind it to enlarge, essentially the result of back pressure. The platelet level can drop because of spleen enlargement. There are many symptoms that accompany these issues, some patients with cirrhosis will experience ascites or excess fluid in the abdominal cavity that in some cases must be aspirated to reduce it's volume. From your description, you are experiencing none of these issues or presenting any symptoms. Just my opinion of course.

Since you're already approved for treatment, the need for an immediate reevaluation of your fibrosis level isn't necessary, but the fact that this summer, the MRI indicated F0-F1 and your recent ultrasound mentions the possibility of F3-F4 levels, seems to show a level of uncertainty to me. Apparently your doctor isn't concerned at this stage of your treatment. Should you require or desire an accurate staging at some point in the future, I would request a Fibroscan, MRI or a biopsy done by a qualified provider to determine the accurate fibrosis level.

If you would care to add some of your statistics to your signature line, it will help when replying to your posts in the future. It's easier to have quick reference to your history, etc. Here's the instructions for setting that up if you're interested: Signature Line

movebo · Member

Hi Tig,

thanks, very much appreciated, and I apologize for the somewhat flippant framing of the question regarding diagnosis. I am pretty scared after seeing
rather unequivocal 6 out of 6 fibrosis/cirrhosis and 4 out of 18 necroinflammatory scores in the histology report.
I had an endoscopy after the biopsy, nothing there. From ultrasound, spleen and portal/hepatic veins patent, with normal Doppler waveforms. I never had any portal hypertension diagnosed (how?). My hepatologist mentioned "early" F3/F4, and that all will be fine, and during the daytime I am quite optimistic.

Cheers,
Movebo

Tig · Admin

The incidence of sampling error is discussed often, but there are rates of error in all methods of diagnosis. The pathologist/radiologist doing or reading the results are different as well. It's important if possible to have all tests done and read by the same individual. This includes the technologist performing the Fibroscan if possible. Biopsy has always been considered the gold standard of determining fibrosis stage. The biopsy technique comes into play, things such as technique and specimen quality are very important. The attention paid to the actual procedure makes a big difference. A single strand biopsy might not be as accurate as a multi strand specimen and the length of the core also helps determine accuracy. Like many things in medicine, the competency of the physician, technologist and lab are important. Until recently Fibroscan and MRI methods of determination were in their infancy, but no longer. I think we'll be seeing a lot more non invasive fibrosis staging in the near future. Actually, we already are. I'm not a fan of the blood marker testing yet (Fibrosure), there's too much room for error at the high and low end of the staging. It relies on an algorithm that can be affected by disease and medication, yet we're seeing the use of it more and more. Likely due to the cost versus the other procedures.

Your blood tests don't strike me as those coming from someone with cirrhosis. Have you had an endoscopy recently? Have you ever been diagnosed with spleen enlargement or portal hypertension? These are all factors that have to be considered when determining cirrhosis and liver health. If you're going to have another ultrasound, be certain if your desire is to determine a fibrosis stage, that it's a Fibroscan, not a standard abdominal ultrasound. I'm not sure what your question is regarding a post mortem determination to confirm diagnosis. There are research studies, Malcolm has spoke on them before, that even those that have achieved SVR, have been found to still carry the virus on post mortem studies. SVR is our immune system's ability to maintain an undetectable viral load. I haven't seen any documentation that indicates SVR as complete or total elimination of the virus in all tissues in the body. SVR is considered a sustained undetectable viral response at EOT +12 and +24. Once achieved the rates of relapse are <1%. Doctors are now considering this a "cure" and likely is. The risk of relapse is so rare, many medical professionals place it's consideration very low on their list of possibilities.

movebo · Member

Hi Tig & Mallani,

thanks for the info. RBC at week 0 and at week 8: 5.7 E12/L, pretty much in the middle of the range of my lab.

Never thought I would read up on hepatology, of all things, but I have done little else for many weeks now. This is
clearly not my field. So may I ask, would it be silly to argue that definite diagnosis is essentially post-mortem only?
(I could have started 10 month earlier, had I done a biopsy last year, maybe have better histology now. But then I
read about sampling error in biopsies, seems there is a large margin).

Anyways, I think Michael Sofia should get a call from Stockholm soon, and I am completely schizophrenic about what
to do about Gilead.

Cheers,
Movebo
(Sig soon)

mallani · Guru

Hi Movebo,

The only thing that matters is that you're Undetected and your enzymes are great. As you're probably aware, Riba is just 'insurance' and the Geno 1a's get it but not the 1b's.

In your case, forget the Hb. Cheers.

Tig · Admin

Hi Movebo,

Welcome to the group, I'm glad you introduced yourself. Since you've been lurking for a year, you probably don't need too much introduction to the forum. But it would be helpful if you entered your statistics into a signature line entry. Similar to what most of us have entered at the bottom of our posts. You can find that info here SIGNATURE LINE.

To me it looks like your treatment is going along quite well. If your medication wasn't doing it's job, you wouldn't be undetected and you wouldn't be witnessing the corrections in your ALT and AST. Your Hgb isn't dropping as we normally see, but you don't mention what your red blood cell count is (RBC). Do you have that. We normally see that drop while we're on Ribavirin too, which generally is why the Hgb drops too. But the rest of your results are good and indicate a good response to treatment. You were undetected by week 4, again at week 8, so I wouldn't spend a lot of time right now worrying. Ask your doctor for another CBC and check your results again. Don't worry about treatment failure, not with those results.

If you're getting teary eyed when you watch drama's, and usually don't, the Riba's probably doing it's job!! Hang in there and keep us informed of your progress. Looks pretty promising to me! Good luck...

movebo · Member

Dear Mallani and All,

this worries me somewhat ...

I am a new here, M, 58, have been lurking for a year, this forum has been very helpful for my sanity, thanks to all of you.

Some background: I was diagnosed in Juli 14, after some news piece that boomers should go get tested, and because my LFTs were somewhat high since the end of the seventies. I was an ambulance driver in those days, before AIDS and all that, so blood was not considered quite as dangerous as nowadays. So yes, VL 4 million, GT 1a.
Got an ultrasound (slightly coarse echotexture) and MRI TE (mean 4.4 kPa, range 3.8 to 4.4), "suggesting" F0-2. After the initial shock that sounded rather good, and my hepatologist and myself agreed to wait a little for this Harvoni stuff that was going to be approved soon, no hurry. I started an entertaining email exchange with my health insurance people, and in July 15 we were planning to start soon, so first do another ultrasound, but no MRI this time. Came back with the exact same wording (slightly coarse echotexture), but "suggested" cirrhosis now (would be interesting to do another MRI). So biopsy, histology not nice (n-word), so I stopped messing around with the insurance and paid for 12 weeks Harvoni and (1200mg) Riba.
I am now at week 10. I was undetected (Roche COBAS, <15) after day 28 and the 8 weeks bloodwork [0 week in brackets]: ALT 21 [55] , AST 20 [37] , GGT 25 [71], APT 116 [136], Haemoglobin 16.6 [16.3], Platelets 226 [197].
Looks kind of ok, but the Hb went up during the Riba intake? I never have preceived any symptoms from cHepC, neither any side effects from the treatment, so I was wondering for many weeks what all the talk about Riba was about. (OK, if I see "Out of Africa" again, I may cry a little, but this could be old age as well ... )
So is there a way to find out if the Riba is "doing its job"?

Cheers,
Movebo

mallani · Guru

Hi all,

Ribavirin has been around forever, and has been part of HCV treatments since 1996. Many of has have been on it several times, and it is worth re-emphasing some facts.

Firstly, Ribavirin has a long half-life, so dosage schedules are pretty loose. You just need to take it twice daily in whatever dose you have been prescribed. The usual dose in an average male is 1,200 mg/day in two divided doses. For average females, the dose is 1,000 mg/day. This can be tailored up or down, depending on weight.

There is no need to take the pills 12 hours apart. I chose to take my 1,200mg at 7am and 7pm to fit with my other medications. Others chose 7am and 2pm, particularly if they had trouble sleeping.

Ribavirin causes a haemolytic anaemia, so your Hb will drop, usually after a few weeks. If your Hb doesn't drop by at least 2, you may not be absorbing the Riba properly.

Riba has no effect on the bone marrow so the WCC and platelet count shouldn't be affected.

The side effects have been well documented. Here's a list:

http://www.webmd.com/drugs/2/drug-21961-1279/ribavirin-oral/ribavirintablet-oral/details/list-sideeffects

Cheers.

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