Cirrhosis /FIBROSIS

[ballie52]

Can anyone tell me what the difference is between saying I have grade 4/5 fibrosis

Is there a difference between this and actual cirrhosis. .just curious as I'm not to sure if this stage is cirrhosis as I just have low platelets and slightly elevated ALT plus elevated alkaline phosphate

I was told that I would recive Harvoni but not heard a peep as yet..could this mean I'm not really at the high risk stage or not although I was told even after treatment I would need scans every 6mths. .feeling just a wee bit confused right now about all of this!

[Bolly]

Have the docs used Ishak or Knodell or Metavir and has it been done via biopsy or Fibroscan.

[ballie52 in reply to Bolly]

It was done by biopsy 2 samples taken..when I went for the follow up the doctor said from mild inflammation at last biopsy to stage 4/5 fibrosis. .then said I need regular 6mths scans..I came away rather confused as my nurse said I have elevated alkaline phosphate..I think only slightly at 178 and ALT only 95 at last bloods..platelets not too bad 83..although I get constant nose bleeds and brusing. .starting to wonder if things are not as bad as I thought as I am still waiting for Harvoni when others are being treated!

[ballie52 in reply to ballie52]

Thanks Bolly I don't know how they done the scoring for the biopsy just said 4 going on 5..so I am asumming maybe very first stage cirrhosis because of the regular scans..only I small varices found in the stomach 3yrs ago!

[Bolly]

I'm not as up to date as others on Harvoni but I had a feeling it was initially developed for Genotyoe 1 and you are Genotype 3.?

It does sound as though your liver damage is progressing, looking at earlier posts i think you were F3/4 and now you are F4/5.

What are the treatment criteria your doctors are constrained by, or is it the budget of your NHS trust only stretching so far?

[ballie52]

No Bolly genotype 4..they said I'm on the list but don't give a definite date

I have been reading that they are now treating the general population right now..maybe because the list is long..I'm just getting tired of waiting while things are not getting any better.

I think I'm just feeling a little sorry for myself right now..been through a lot with my husbands cancer and 3 liver transplants. .just want an end to all of this the sooner the better..rant over Lol

[dizzime]

Hi there--Not sure what the criteria is now but I was Hep C Geno 3 and my fibro scan was 12. I think at first before the Harvoni was fully rolled out you had to have a fibroscan score over 10 (dont quote me on that) but this could have lowered now. Have you got someone you can phone to ask what the score has to be? Hope this helps and you get it soon. keep positive x

[art4949]

hepatitiscnewdrugresearch.c...

I use this link to help,me understand the Fibroscan readings..keep reading the entire article as it explains a lot. You'll have to ask your specialist what your biopsy readings mean. Hage you ever had a Fibroscan?

If you have Fibroscan Score of 11.5 with HCV it is on the border of F2/F3 ...F3 is a Fibroscan score of 12 or higher...Once your liver stiffness on your Fibroscan score goes above 14 then you would be definitely diagnosed with cirrhosis...and probably would be presenting symptoms of decompensation, such as varices and portal hypertension. We are all different...some people can have extensive fibrosis/scarring and stil have few symptoms.

But with HCV once your Fibroscore is 11.5 or higher...even though 12 or higher is actually considered cirrhotic..(the NHS have done this to allow for margins of errors in the readings from diagnostic tools such as thenFibroscan and liver biopsy))the NHS should be treating you now, this year with Harvoni. This is for genotype 1a/b, 4, 5,6 ...

Ask your liver specialist nurse where are you on the waiting list, and when they think your treatment will begin. They should have some idea...they have been treating patients with HCV /cirrhosis since June 2015 with these new drugs, so will have idea how many patients they can treat each week.

When you get treated is it down to funding and staff levels. The NHS should really be communicating to all of us when our treatment is beginning even if they anticipate a long wait..an estimate would even be nice...I think at first they just didn't know...waiting for final guidelines from NICE to be published,,while treating the sickest first...but these drugs have been on market since October 2014.

It is a case of being well informed about the treatment and writing down all your questions for the next time you see consultant/nurse...or call them. I have done both and was upset they could not give me a date in November last year. I felt like I was going to fall apart waiting. It is a poor way to treat a patient. You will get treated...

I think the framework and follow up for treating people with HCV is changing fast in the NHS. Things are going to speed up and even those people with HCV who do not have cirrhosis will begin to be treated this year. The NICE guidelines are a good source of info too.

Hope this helps, ballie...good luck...let me know when they do start your treatment!

I start treatment on 22 January with Harvoni only, as you may know already from some of my other posts! They will probably have to treat me for ulcers afterwards for the stress of not knowing when I would be treated....just kidding, I think!...While waiting all of 2015 it was the fear of getting worse, and the treatment coming too late that was doing my head in...

I am going to be positive and say that I think all of us on this forum with HCV will be treated in 2016 by the NHS.

[ballie52]

Thanks Art I have never been offered a Fibro scan..I got diagnosed with a biopsy. .I think you could be right about getting the treatment this year. .hoping it will be early in the year. .I'm just actually looking forward to the treatment as we know now its an end of hep c for good!