Hep C Discussion Forum

liverish · Member

RE: It's back!

liverish · Member

You sound like how I feel about our wonderful NHS....better out than in lol, a good moan and a rant lets all the neg out my friend at least you are now on your

way to full recovery keep focusing on that...I have left a message with the med team admin lets see if they get back to me...I fought for tx over 2013/2015

it was poss only for people who were on transplant waiting list...then all that change over by NICE to people with cirrhosis followed by hooha from NHS about costs

then told it hadn't arrived yet and the meds were stuck in some werehouse in California I kid you not I felt i was in some nightmare farce....I just want get sof /vel tx

can't do harvoni anymore as now immune to ledipasvir according to NHS...will carry on the fight as there is no other option at the mo apart from nutritional and alternative

stuff which slows down the little darlins from multiplying one hopes! be well Pablito...

Sydhanrahan · Guru

Not long winded at all Pablito. congratulations on surviving the interferon and riba I was too scared to take and for having the courage and determination to keep on badgering them.

I suppose when something is killing you, you expect the medical profession to care. Finding out you're just a number they have to totally detach themselves from emotionally in order to get on with their lives, is a rude awakening. And I agree, some seem to do it with callous ease.

Hopefully Pablo's story will help you too Sade. For what it's worth I thought about you all night.

Take care,

Sys

Pablito · Senior Member

liverish wrote:
my trust level with med system, right or wrong, is a bit low at present

Don't even get me started about healthcare systems and trust. Mine is exceptionally low, especially for hepatalogy services in the UK. I contracted HCV in 1996. I can tie it down to a specific 3 month period as I had two tests (the first negative, the second positive) in between 2 stints in rehab that year. But despite being referred to services very early I was told that the risks of treatment - back then it was just interferon - far out-weighed the potential benefit. The success rates were low to be fair, but we now know that early treatment is likely to be more successful as the VL is lower and the virus has had less time to make bad (and treatment resistant) copies of itself.

A subsequent 10 year battle ensued wherein I asked for treatment at every outpatient only to be told 'no' each time, that the local 'guidelines' were not to treat people with "mild hepatitis c". Then in 2008 the National Institute of Clinical Excellence came into being and recommended that everyone with HCV should be treated with interferon/ribavirin regardless of fibrosis staging (mine at that point was still F0). The hospital were forced to offer me treatment when I asked, which they ultimately did but went about it in such a reluctant way - putting me on an endless waiting list wherein I was told at the end of each week mine was being postponed - it was so anxiety-provking. It was only after I made a complaint that I actually got the treatment (which didn't work).

Defeated and dispirited - like you feel now - I then buried my head in the sand for another few years and forgot about treatment. I had moved house at this point and was seeing a different doctor each time at my annual appointment at the new hospital. There was no human contact there and I was just another number.

By 2015 I had rebuilt my enthusiasm for treatment. The DAAs were around now but not approved yet by NHS so it was super-frustrating knowing there was a successful treatment available that I couldn't have. I registered for trials, but I instinctively knew that they wouldn't come through...my hepatologist wrote to my GP saying "I will try and get patient x into a trial, if I can find the time to do the paperwork". Really, I kid you not! Fine, doctors are busy and tired and may have lazy thoughts but most are smart enough not to allow their unconscious mind spill out into a letter to another colleague.

By 2016 I really had the bit between my teeth. It took 6 months of chasing but I finally got referred to see one of the professors who runs the the Polaris trial and who has an interest in people with addiction and HCV. As soon as I saw him things started to happen. Finally, there was some who actually saw me as someone who deserved treatment and not just as another number. I was told that NICE were about to approve DAAs for all and was told to keep calling them int the run in to the 1st of March, which I did and - lo and behold - on the very day the guidelines went live I got offered treatment. I got in so quick, NHS England hadn't had time to rain on the parade and place a monthly cap on the cost of the NICE guidelines at that point.

In fact I got offered two treatments: NHS Harvoni and the Polaris trial. Now, I could quibble and say the only reason they offered me the trial was because they would have struggled to justify treating an F0 with DAAs when they have patients with cirrhosis to treat first, but I won't. I took the trial. As an aside, in doing so I found out that they had had the wrong number for me all this time and even if they had have offered me a trial earlier the may not have been able to get in touch with me.

Very long-winded, but what I am trying to say is that you need to keep your spirits high and have to fight for the treatment you deserve. If you wait around for the NHS tanker to turn it may be too late. For me, I've got in in the nick of time. As part of the trial I had a fibroscan - my first - and it transpires that I am F3 and not F0 like my last biopsy suggested. Well, maybe I was F0 then but this disease can progress quite quickly once the ball has started to roll. My recommendation is that you lick your wounds and get back on the horse as soon as possible. I had a back-up plan, as indicated in my previous post, if the NHS/trial didn't come through but I won't articulate it again as I've learned that it's against the forum rules.

Don't give up: there is real hope yet. You just need to find the energy to seek it and to find the right people to offer it to you.

Pablo

liverish · Member

Thanks Pabilto Yes it was the polaris 1 sofo/vel trial, I am going to call my consultant and see if are treating people who were on the placebo arm and if I can

get on trial at this stage ...I feel a lot braver listening to Heppers as my trust level with med system wrong or right is a bit low at presant...I'll search the forum

to find someone on this trial and see how they are doing....thanks again for suggestion I see you're also from London:)

Pablito · Senior Member

Hi Sade

It does sound like you are exhausted both physically and emotionally and feeling defeated, which is totally understandable.

I don't want to make any more suggestions for fear it might make things worse. Gather your strength and take a break if needed, but please don't leave it too too long, as there are options per people's suggestions below.

It sounds like you were offered the Polaris 1 trial, which indeed does have a placebo arm. There is a deferred treatment arm though, which I assume is for people who received placebo in the initial part of the trial. If you could gather the strength to find out if all people who received placebo will get into the deferred treatment arm; or perhaps someone on this trial could tell you...if it's everyone in the placebo arm then this trial is certainly something to consider for re-treatment. The side-effects are super-minimal and nothing like ribavirin; and the results very impressive...

...the one downside being that because it's a trial there is no flexibility to extend treatment to 24 weeks, if that's what you needed. The other option is putting pressure on the NHS - given your fibrosis score - for 24 weeks re-treament.

But, most of all, my sympathies are with you at tho point, as are everyone else's. Don't give up hope!

Pablo

liverish · Member

thanks Syd...I hope you will have continued SVR no one deserves this evil virus in their blood stream ..to be fair they did offer me a trial but I was so knocked out by

the harvoni/riba tx not to mention scared and confused I just wanted a break..yes NHS were thinking of cost and threw Riba with harvoni disregarding the fact high count

cirrhosis would have been better served with 24 wks..they did say if they were concerned with current tests they will call me in, right now its best not to get too upset or stressed

or it goes right to the liver besides I'm worn out by riba rage I had during tx..will make emends to family and friends when i get my juju back :) I will look into buying somewhere else

but just the stress of researching the right product and buying then finding med team to monitor during self tx fill me with horror. Not too bad right now went for nine mile hike

last sunday:-0 biking somedays other days well I wont go there..the good news is I have still got my gallbladder which they wanted to yank out when I complained of liver pains

riba rage kicked in told them to take a long stroll off a short plank, pans out other patients complained of same problem it was the Meds!! It was a NHS teaching hospital so what do

you expect...lol rant finished.

Sydhanrahan · Guru

Hi Sade,

so sorry to hear the virus has returned. RIBA is certainly something that it would take a while to revisit.

i suppose I am writing this because I really do hope you can push for alternatives. I too sat politely, visiting my specialist every six months and it wasn't until my liver got to decompensated mode that I realised I had to be more proactive about my own health.

I was diagnosed with decompensation in October last year, the drugs i took are now on the PBS in Australia as of March 1. I'm not sorry I paid to get the drugs from India four months earlier than I could have got them by waiting because I dont think my body had much more waiting in it. At a visit to the liver transplant hospital in my city the doctor urged me to fight for another 12 weeks of treatment as cirrhosis in his experience often leads to unsuccessful treatment. I got the further 12 weeks but was too depressed to stay on RIBA which has probably lowered my chances of survival. Everyone here has a story and so many have tackled this disease with so much courage and determination. I have been a cry for my mom type too, but hearing how others tackle their journey really helps.

Please try to get on a viable alternative - it makes me sad to hear how stingy the UK are being with treatments. Everyone has to go through Riba hell when in the US there are more and more alternatives becoming available. Or am I getting my info mixed up?

Do you think the doctor ( or the politicians who decide on the price of our lives ) who told you to come back in October would have been happy to have his/her mother, wife/ child wait that long???

Don't wait for them to care, if there is an alternative, take it.

Syd

liverish · Member

Thanks LL that means a lot!

Loopy Lisa · Guru

liverish wrote:
thanks lisa ....somedays a dragon slayer warrior some days i just want Mommy who has long gone..I see you had the hardcore tx intferon/riba
you are one brave heart..they did offer me this very often since i was diagnosed 1995 but always wimped out...I will look out for your post regarding
your impending Tx.. wish you all the best.

I can understand how you feel on that level. I remember when I was first diagnosed I was so worried and confused I too wanted my mom, she too has departed. Anytime you need a shoulder we are all here for you. Any bad days just say and we will be a stand in, maybe not as good, but you're not alone! You're always a warrior to us! x

liverish · Member

thanks lisa ....somedays a dragon slayer warrior some days i just want Mommy who has long gone..I see you had the hardcore tx intferon/riba

you are one brave heart..they did offer me this very often since i was diagnosed 1995 but always wimped out...I will look out for your post regarding

your impending Tx.. wish you all the best.

Loopy Lisa · Guru

Oh crap, I hope you are coping ok? :(

liverish · Member

Too late for that Robert that train has left the station:(...yes I do get the blues and have not yet told my family as they live in the US and were so happy when the virus was gone in the 4th week

I'm sure something will come up...my fibroscan was 36 pre tx it is now 22 so that is a small blessing...lol

liverish · Member

I think you were on the one they offered me but it did have a placebo arm I have a appt with consultant but not till oct maybe i should request somthing sooner

and see what trials are available your info was helpful thanks...

Pablito · Senior Member

Hi there

I've just finished the sof/vel/GS-9857 trial and can attest to the fact that it's safe. I don't think there's a placebo arm. There are various Polaris trials in play but I'm pretty sure they are all open-label phase 3 studies at this stage (i.e. no placebo). There will be a comparison arm, but that will contain active treatment but not the experimental drug (GS-9857). If you look at the studies the data are very impressive for re-treatments.

The other option you have is to use FixHepC. More information can be found here on the forum: HERE.

Pablo

-- Edited by Tig56 on Monday 6th of June 2016 05:14:52 PM

robertsamx · Guru

HI Sade-- Talk about being stuck between a rock and a hard spot! I understand your not wanting to rush back into the flaming fire. RIBA is no fun.When I failed the first time I wanted to re treat right away, but I ended up waiting 18 months . The treatment failing me put me into a depression , so a quick retreat would have been nice. My fibroscan is 36.

With your fibroscan so high you really need to keep up on your MRI"S. As you know there are great new drugs coming out that attack the virus at two to three spots, and they have good SVR statistics . IMO you should consider the trial offer. RC

liverish · Member

Thanks all, yes it has effected more than i'm admitting agree, with you Gracie it should have been 24 weeks on Harvoni but I'm in the UK and NHS can't or won't pay for 24 wks?
Its 12 wk/s on Harvoni and that very toxic riba (for me anyway) or nothing.

They did offer me a place on the clinical trial with sofobuvir/velpatasvirand NS3 protease inhibitor from giliad (Polaris 1) but as the study was placebo controlled and no clear safty regarding these
drugs I declined.. if I had been offered this in the first place I would have gone for it...but mind and body needs healing before braving another tx...they say it will be approved by NICE end of year
and NHS should start this tx by 2017.

I will keep an eye out for posts by people who are on this trial thanks very much again Gracie, TG56 got it with the signature ta for that also Cheddy,K8,Linuxter and Pablito I hope with the signature
things are clearer..lol the ole grey matter throws a hissy periodically and goes walkies...bye for now

Gracie · Guru

IMO anybody who is cirrhotic should have been given 24 weeks of harvoni. I'm sure it's the cost that dissuades doctors from prescribing it. There are new triple therapies coming out that should do the trick. Take a little time, do some research, talk to your doctor and prepare to reload. There is a successful treatment out there for you. It took three treatments for me to clear.

Tig · Admin

Hi Sade,

Welcome to the forum! I read your story and wonder if you can provide a few items to your signature line? Use the red link in my signature to obtain instructions. If you could be more specific regarding your genotype, viral load, lab tests like your ALT/AST and if you ever treated before would be helpful in providing an opinion. You can see what many of us have in ours and get an idea.

You mentioned your Fibroscan being 29/36 and now 22. Even at 22, you are definitely cirrhotic and if I were in the position to get started on treatment again with one of the new treatments, I would do so quickly. If your fibrosis score is that high, you don't want to allow yourself to decompensate. That's never a good thing, nor is waiting too long as a compensated cirrhotic. You need to get an accurate fibrosis staging and determine exactly where you stand.

Do you know what trial was offered to you? There are some excellent studies underway and you might benefit greatly. Let us know if you remember. If you can get one without Riba, you won't have the same exhausting effects during treatment. If your fibrosis was that high before treatment, clearly a 24 week course of treatment was needed. I'm sorry you relapsed, but the options available are increasing all the time and you'll succeed. I'm sure of it! Good luck, don't give up! smile

AASLD Retreatment Guidelines

Cheddy · Moderator

Oh sh*t!!! That must be a terrible feeling. I'm pretty sure I would have to take a break and recover from treatment, especially psychologically. There are so many trials in the pipeline and I would hope to avoid another round of Ribavirin issues. Still, you really need to decide this with your medical professionals, taking all of your health issues into account, and listening deeply to yourself. Just don't give up! We're on our way out of the dark tunnel of this disease. Please let us know what you figure out.

K8 · Member

I understand the disappointment of the virus not being gone. I took the INT/RIBA 7 years ago and was undetectable but 6 month laters, virus was there, viral load lower and I know the treatment did a lot to help retard the HEP C. But I was devastated. I had lost my hair, energy, enthusiasm.
It took a while to but I am back in treatment with Solvadi & Riba again. 1/2 way through the Treatment.
This site helps a lot. I am sending you healing thoughts and energy.
K8

Linuxter · Guru

Hi Liverish,

Welcome to the forum, glad you're here!

Can you tell us a little about the trial you were offered, we have lots of people on trials and the cure rates are incredible.

Most if not all of the trials have been presenting few if any side effects as well.

With a diagnosis of cirrhosis you should definitely talk to your doctor again and consider getting another treatment.

Others will soon chime in but you've come to a great place, the people and resources here are wonderful.

Talk again soon,

Dave

Pablito · Senior Member

Hi there

So, so sorry to hear that. You must be devastated.

And I can totally relate to wanting to let your body heal and lick your psychological wounds: after I failed interferon/ribavirin (or better put: it failed me) some years ago it took me a few years to gather the strength to go through the process again.

So it sounds like you need 24 weeks of treatment, or one of the new triple therapy DAAs. The good news is that there are loads of options available and you just need to find the right combo of DAAs to work for you.

Which country do you live in by the way?

Pablo

liverish · Member

I started my tx sept 4th last year on harvoni and riba 12weeks EOT November Dec I went for 4/wk post tx and they said it was back...I'm one of the low % that the virus has come back,

They did offer me retreatment but it was a trial with many ifs and buts..I have declined tx for now as my body is feeling battered I have read all the post tx aches and pains people are having

as am I, mine is around the kidneys and under the ribs..my blood work is better than its been for a while my fibroscan which was 29/36 is now 22 so the cirrosis is def better unless there was

misdiagnosis previous to tx..they worried about a lesion on my liver scared the hell out of me by yelling cancer (maybe), I wanted to wait till after tx to investigate and stuck to my guns and it pans out that the lesion has disappeared.. So overall the harvoni was positive hated the riba I should have had 24 wks of H with my high count cirrosis....waiting to see the results of trials that went on this year...then will make my mind up as to next move...

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