Oh hi there!

[L4LSarahM]

Hi all

This is an introductory message from us as we've recently been given the opportunity to oversee this group from Health Unlocked (thanks Health Unlocked!)

A little bit about us, Hep C Positive has been borne out of a face-to-face support group, which started in Swindon a few years back. It has since become one of the most successful and long-standing groups in the country. We have experience of dealing with most problems associated with hepatitis C and are very happy to be able to get involved with this online forum.

If you would like to speak to anyone at any point, please contact our free helpline on 0800 074 3494. The helpline is run by Liver4Life who we work in association with (check out their Health Unlocked forum too!)

We look forward to getting to know you along the way.

Sarah, Richard, Phil, Kelvin and Anna

[navigatinglife]

Hi all. Welcome to our club 🙋 Much appreciated, especially to have an 0800 helpline too 😍

[Myob67]

Good to hear from you. Can you help me. Been free of virus for over a year but still seem to be tired a lot. Is this normal? Have other symptoms - joint pain etc - but also have osteo arthritis and a genetic heart condition so don't know what is causing what.

Lin

[L4LSarahM in reply to Myob67]

Hi Lin - I believe you can still remain tired despite clearing the virus. Equally aches and pains can remain. Do you know the health of your liver? Was it left damaged by the virus?

[Myob67 in reply to L4LSarahM]

Hi Sarah

Thanks for replying. It’s reassuring to know what others feel. My liver wasn’t too badly damaged and started to improve almost immediately. I can’t remember the numbers.

Lin

[Tess74 in reply to Myob67]

Hi myob67...I was also genotype 1a and have been cleared for just over a year now too and i can relate to how you're feeling. Just out of cutiousity What treatment did you take?? I had 6 months of the abbvie stuff (I'm not going to try and spell it Ha!) Plus riba. Have you been discharge from the hep clinic and referred to the liver clinic? All the best Tess x

[Myob67 in reply to Tess74]

Hi Tess

I was given 8 weeks of Harvoni. It was great no side effects and worked very quickly. I was monitored for approx 6 months after treatment and then discharged.

Not referred to the liver clinic as my liver wasn’t badly damaged. We’re you referred?

Hope you’re feeling well. I’m feeling a million times better than before my treatment but did wonder about my tiredness etc. Thanks for replying. It’s so good to share on this site. Wish I’d known about it sooner.

Stay well

Lin x

[Tess74 in reply to Myob67]

Hi lin...thats strange...I thought the min for SVR was 12 months...you were lucky to get harvoni without much/any liver damage, are you based th the UK? Yes I've been referred as my fibro scan read slightly higher post treatment so it's just a precaution (i hope ha) I've read that it's best to keep the liver monitored after clearing the virus with the new DAA drugs with them being new. If I was you I'd go and see my gp and discuss the tiredness and joint aches xx

[Myob67 in reply to Tess74]

Thanks Tess. I believe the reason I got treated when I did was because my liver was starting to show increased damage and it was caught before it got too bad -

will prob make a GP appointment soon if this particular tiredness continues.

Lin

[Tess74 in reply to Myob67]

Hi again lin...I was treated with the new drugs too because I was close to permanent damage (11kpa ish before treatment) ..at the end of treatment my fibro scan was better but at my 12 month post treatment it was higher hence refferel ...I would insist on another fibro scan if I was you...i have ZERO trust in doctors ...I've had hep c from a blood transfusion as a baby (my only risk factor) and had my bloods checked since the age of 7..all my adult life I was told I had high lfts but it's ok then I saw a different doc at the age of 44 and was told I had hep c....so I'm a bit weary of them lol at first i was told 11kpa was ok and just fibrosis then I was told it's cirrhosis (it's actually borderline) so it depends on who you speak to I suppose. People who have been treated by these new daa drugs should be having their liver monitored so I was actually happy to be referred...1st app is next week...and I'm really nervous about it ..I'm quite fed up with hospital visits lol..I'll let you know how it goes x

[Tess74]

Hi sarah, Im a little confused, I noticed you posted a poll earlier asking 'has your medical team broached 'end of life' care options with you since diagnosis which has now been deleted so I cant see you reply to my comment and now you've posted another poll asking 'how long did it take you from experiencing symptoms to getting diagnosed?' ..sorry but i cant help but wonder how much you actually know about hep c to be running a a forum such as this which comes up frequently on google when searching for hep c information...if i was newly diagnosed and came across your poll I would of panicked... for your information hep c isn't a death sentence....secondly, many of us find out we're hep c positive by accident after living a long healthy life being totally unaware we are carrying it with no symptoms whatsoever...often hep c is discovered by chance

[Lucien777 in reply to Tess74]

Yeah I was a bit taken aback by the end of life post 😎

[Lucien777 in reply to Lucien777]

I do however think she probably meant to post this on the other forum, maybe that's why it got deleted?

[L4LSarahM in reply to Lucien777]

I deleted to avoid offence, however on reflection I do believe it's an important subject to be addressed in liver disease generally, including hepatitis C. It may be relevant to people who have end-stage liver disease. Many thanks Lucien777.

[Myob67 in reply to Lucien777]

Me too. It was insensitive. When I was first diagnosed I thought it meant I would die from it. ( tbh my GP didn’t seem to know much about it so I think he scared me unnecessarily) but if I had then seen that post I would have been in a terrible mental state - and I’m not a person who scares easily.

Lin

[Hidden in reply to Myob67]

Dear sweet fairy’s breath, I would have been jumping in that bliddy weir with two bricks in my pockets if I’d seen it.

[L4LSarahM]

Hi Tess,

Many thanks for your message - I had responded to your reaction to the original poll to say that it is a subject area that is often left until the last minute in liver disease and so care is often inadequate. We attended an interesting meeting last week about 'end of life' care in liver disease and it was discussed 'when' the conversation should be had with patients and their families. This is an important subject area and many carers wished that their loved ones had access to support at the final stages of their life. Sadly in hepatology people don't currently get the same access to care - hence the poll. The subject is avoided at all costs. However, I appreciate the sensitivity.

As for my knowledge of hepatitis C, I have been working in the field since 2006 so I do understand that hep C is not a death sentence. In fact I have witnessed the step change in treatments now available. However, if cirrhosis has been diagnosed, which in some cases it may have been, then a conversation should be had about managing this condition and what the prognosis might be. The conversation should be broached in good time so preparations can be made. I understand that this does not apply to everyone with hepatitis C, however it depends on how damaged the liver might be upon diagnosis.

Many thanks

Sarah

[Tess74]

Hi Sarah and thanks for your reply and I'm sorry if I come across as abrupt. Personally I joined this forum as a place to share knowledge and experiences in regards to hep c and whilst I realise I don't have to stick around (and I haven't been terribly active lately) it does concern me that this site is ranked quite high on Google search so if someone new to hep c was to do come across the (now deleted) poll it could be pretty alarming for them. I also feel unsure about what benefit your more recent poll has bearing (sp) in mind that hep c doesn't always show any obvious symptoms until damage is done which is the sneakyness off it, personally I think the focus should be anyone or everyone should get tested...there's no tell tale signs with it. I maybe wrong but going by the last 2 polls from today this just feels like information mining and the questions have a negative undertone in my opinion.

[Lucien777]

I kind of see both the points made here, but I do think on this particular forum not many are having severely advanced liver disease, although I might be wrong. Here people are discussing treatment and how they feel in general, and maybe newly diagnosed members come on here with questions they might have. On the other forums though, I see people discussing much more advanced liver disease, e.g needing transplants etc and maybe the poll would have been more suitable for those forums? I personally was never approached by any medical professionals re. End of life care, during the last 22 years, but then I don't have cirrhosis. It's is a good thing that you are trying to get the message out there and to improve things for anyone needing help in this regard, but I think one of the other forums may have provided you with a better back drop for that particular poll, where you might have received valuable answers, as people are actually at a stage where this becomes and important issue.

[L4LSarahM]

Hi Tess, thanks for your comments and opinions. As you may know, liver disease, including hepatitis C, ranks pretty low in priorities in healthcare and although you’ve had a good experience of getting diagnosed and treated, many others have not. The purpose of the polls are to understand the current situation - which can then be used to inform our activities to improve awareness, prevention, treatment campaigns. if the group rather we didn’t run them, then I would be happy to stop.

[Lucien777 in reply to L4LSarahM]

I personally dont mind you running polls. It was just this one that I think would have been better placed in one of the other forums, also for your sake of probably getting more feedback there on that particular poll ☺️

[Lucien777 in reply to Lucien777]

I also think that a hep c test should be offered along with general blood tests to anyone, so that more can people get diagnosed in time. It seems that these tests are only done when there is a reason or suspicion that someone might have come into contact with hep c or because there are unexplained health problems. I think testing should be done much more widely.

[Tess74 in reply to L4LSarahM]

Maybe for these kind of sensitive & information gathering polls do it via emails to members like this site does and pay Amazon vouchers or whatever rather then have scary and misimformative polls. By the way....I did not have good treatment within the healthcare system

[Hidden]

I have cirrhosis and your posts are really frightening me !

[L4LSarahM in reply to Hidden]

Hi TotosOwner, if you have cirrhosis then you should be receiving regular follow ups with your liver team. The poll has been taken down to avoid any further sensitivity from group members. Can I ask what aspects of my posts are frightening you? Apologies if this is the case.

[Hidden]

Follow ups to what? I’ve seen the Liver Specialist once, he sent me for a blood test to see if I had Hepatitis?

[L4LSarahM in reply to Hidden]

If you have cirrhosis then your medical team should monitor the health of your liver either by blood tests or a Fibroscan.

[L4LSarahM in reply to L4LSarahM]

(There are other tests/scans too of course, however these are the most common)

[Hidden]

I’ve had a fibroscan, they did it as soon as the hepatitis test came back positive. I scored 21.5. They also did a CT scan which showed small varices. I have had monthly blood tests for liver function and am on week 13 of hepatitis treatment which has been successful at clearing the virus.

[Tess74 in reply to Hidden]

I insisted on fibro scans during treatment, end of treatment and 12 months post treatment...sometimes you have to be a pushy pain in the arse with them x

[Hidden]

Now as to why you are frightening me, if you can’t see it then let me spell it out. I am not at the end of my life, I’m not even sick apart from this sodding Ribavirin drug that the British taxpayer is digging deep to pay for. I’m not ready to face death yet, nor am I going to sit here and wait for it to come. I intend to live my life to the fullest, grateful for this gift of treatment, in fact I fully intend to see my grandchild, now 9, graduate from University !

[L4LSarahM in reply to Hidden]

Good to hear! I wish you well. Glad you’re being monitored well and you’re happy with your treatment. Sorry if I frightened you, this was never my intention.

[Hidden]

There are posts on here from newly diagnosed people who are very frightened indeed. Most of them have little or no liver damage. Those of us that do hope to halt or even reverse it _ there are new clinical trials that show this is possible and No I am not in denial either, just in case that’s crossing your mind! The NHS intend, with these new drugs, to eliminate HepC by 2025. Your poll was absolutely out of tune with that and so very negative. Newly diagnosed people need good information, not scaring shitless

[L4LSarahM in reply to Hidden]

Thank you TotosOwner. As I said this was never my intention and I have taken on board your, and other people’s, comments. As a result, no polls or posts will appear from me in the future.

[Hidden]

Thank you. Maybe you could point myself and another member in the way of some factual clear information about what it means when there is a low viral load. Can the virus return etc?

[Tess74 in reply to Hidden]

I can sense your riba rage in these replies...oh how I hated that stuff!! Are you asking that cos your viral load is lower on your treatment checks?? If so that'll be cos it's working...my viral load went low and then to zero..I'm now svr and I'm told it is highly unlikely for the virus to come back but it's important to finish the treatment even if you viral load reaches zero early on..

A bit like antibiotics I suppose. All the best and I feel your riba pain x

[Hidden in reply to Tess74]

Ah so no point me running a poll asking should I flog the rest of my meds on eBay to fund a bucket list then?

[Tess74 in reply to Hidden]

Haha

[Tess74 in reply to Hidden]

Ps for FACTUAL info it has to be the hep c trust folk x

[Hidden in reply to Tess74]

It’s for another member who’s coming in at a score of under 10

RIBA rage 🤫 oh dear me