Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Turning down treatment

Angel67 · Senior Member

CSNY are like a family, squabbles etc. They made some beautiful music back in the day.

Cinnamon Girl · Guru

Yes, Angel, you`re right about David Crosby and his life was saved by having a liver transplant some years ago, and he`s still writing and recording great music. No longer Neil Young`s friend though since he made insulting remarks in the media about his new girlfriend!! Neil Young responded by saying there will never be another CSNY tour! (Excuse my digression, it`s late at night here in the UK!)

Angel67 · Senior Member

Dzdayscomin wrote:
If I can say one thing from my heart.....You don't want Cirrhosis and HCV causes it........ HCV if you can treat it, then by all means or whatever means treat it.
I absolutely wish I was not staring at the possibility of more HCC or the transplant procedure in the next year and a half.
I want to feel normal again not like I do today, and my tomorrows until Transplant are not that bright ........and even then there are no guarantees.

Cirrhosis is bad news and I have known of a alcoholic who died choking on his own blood in the street as his varices burst in his throat ...horrible, just horrible. The Fibroscan will do for me at the moment, while I know it's not 100% accurate , it tends to be accurate when measuring a liver that is stiffer,ie, much worse condition. With all the tests that were done on me I feel quite confident that I am in reasonable health liver wise...of course this is subject to change! I have talked seriously with my wife & if decent drugs are not here within 18 months or so I would take the old Interferon/Ribavirin and just roll with the side effects. To be honest with you I am not particularly frightened by the side effects, no it's the efficacy of the treatment....I don't want to spend the best part of a year on a toxic treatment only to find it has not worked...that would be just soul destroying, and I expect many of you people know this first hand. There is all kinds of financial trouble here in England with regards to our health service and just today Europe has demand the England pays them another £1.7 Billion! This won't help things at all. I am not sure if Gilead are shooting themselves in the foot with their pricing as Hep C is never going to be popular with the general public and most western countries are saying it costs too much. I don't know if they can make their money back from their third world deals? Maybe they just want to humiliate the richer countries into submission? I wonder how long the patent lasts on the drug or even if it will be superseded by a cure for all genotype drug soon? So many questions so little answers! Now I have Neil Young in my head! Hey, his friend David Crosby was a Hepper too!

Dzdayscomin · Senior Member

Look at it this way tx is a hard task to undertake like cleaning an old barn, it is best to take on the worst part of the task first while you are more motivated and stronger, then after a couple of weeks and your still going at it just finishing up the easier parts you'll be more inclined to finish the task.

I look at this disease the same way............ if you take on the hardest part early on you will benefit when you are older,weaker and less motivated from the ravages of the disease.

Cinnamon Girl · Guru

To be honest it could be quite a wait before an all-oral treatment becomes available for all Hep C sufferers in the UK apart from for those in the most urgent need, although of course we don`t know that for certain. But given the current financial situation and the predicted NHS budget shortfall for the next 5 years it looks likely that funding for new drugs will continue to be restricted, unless the prices are much more affordable than Sovaldi and Olysio. It`s all down to costs so we can but hope!

A biopsy would probably be a good idea, I agree Isiscat, and it would certainly help Angel67 to make a more informed decision.

The Peg/Riba treatment is certainly do-able, as Huey said earlier, and many members of this forum have successfully gone through that combo in the past, although the side effects of course can be quite difficult to cope with. And not just the physical but also the emotional and psychological sx which can be even more troubling. When I decided it was time I finally got myself treated, 4 years ago, there wasn`t any other choice even on the horizon for Gen 3 so I just got on with it and I`m glad I did, but it was no walk in the park at my age in my early `60`s as I was then. But I`ve seen people sail through it with minimal side effects, so it does vary.

Isiscat2011 · Guru

LC wrote:
True, no one wants cirrhosis, but if he can afford to wait... it's so close.

I agree. I'm not sure how close it is in the UK, though. I'd guess that some all oral combo will be available for everyone in the UK within the next 2-3 years but it could certainly be much sooner. Jill probably has a better idea of that since she is in the UK and well informed on all HCV matters there.

Having said that, another thing to consider Angel67, is having a liver biopsy. I understand you have had a firbroscan but having both should give you the most accurate assessment possible. If it turns out your liver damage is more advanced you may be able to qualify for tx sooner. If not then you have the added peace of mind that your liver damage is not severe. Given the length of time you have had HCV I would want to be as certain as possible about how my liver was doing before making a decision.

LC · Senior Member

True, no one wants cirrhosis, but if he can afford to wait... it's so close.

Dzdayscomin · Senior Member

If I can say one thing from my heart.....You don't want Cirrhosis and HCV causes it........ HCV if you can treat it, then by all means or whatever means treat it.

I absolutely wish I was not staring at the possibility of more HCC or the transplant procedure in the next year and a half.

I want to feel normal again not like I do today, and my tomorrows until Transplant are not that bright ........and even then there are no guarantees.

Angel67 · Senior Member

Yes back when I was using I didn't care if I lived or died...actually I wanted to die more than I wanted to live, but whatever I did I just wouldn't die...I once provoked someone into smashing my skull...it hospitalized me but didn't kill me. I took massive overdoses which stopped me breathing ( I was sort of dead for about 15 minutes) but I am still here! Now all that has changed and I make the most of every second of our short life, it's just frustrating ,yet I know everyone on here has felt the same fear, anger & similar feelings to me. It's anyones guess as to how many people in the UK have Hep C...I did read the figure 220,000, but most people are undiagnosed. Actually hardly anyone actually presents for treatment, 6000 or so people, but the government add all the possible patients to their theoretical bill...so when they say Sovaldi would break the bank this is sort of skewed facts. Most addicts are not concerned with being diagnosed let alone cured as they are too busy chasing the next fix. We have many, many migrants here these days and lots of them will have picked up this bug back home. That's funny really as they can now get the premium treatment cheaply in the third world but not here!

LC · Senior Member

It's the same for many of us, a part of our past we thought we were done with catches up to us. cry I was going through a bad phase about 30 years ago where I didn't much care about myself, but I straightened up and I certainly care now. My immediate family only knows I used IV drugs because about 18 years ago I was going through a divorce and the soon to be ex threatened to tell them. I decided to tell them myself rather than let him use that as a blackmail tool. So I doubt they would be surprised about the HCV, but I've chosen to tell only my sons about the HCV because I likely had it while pregnant with them and I wanted them tested.

It sounds like you've done your due diligence, and expressed your intense desire to avoid Interferon treatment and willingness to do a trial if need be. It's alright to take a break from thinking and worrying about it. Treatment will come to you. I had to wait 2 years to get into a trial. I really doubt if yours will be that long, maybe a few more months. I read somewhere that they estimate 200,000 to 500,000 people in England have HCV and only 45% have genotype 1. The pharmaceutical companies really do want their piece of the pie for your treatment. I think most of us know that feeling of being in limbo waiting, and we hate it too. Hang in there and play your guitar.

Angel67 · Senior Member

I have only told my wife & kids, one sister & a few people on the internet about the virus( somehow it seemed easier telling "Facebook Friends").It's certainly brought back the past to haunt me and a long gone situation that was a distant memory (addiction) ..well I now have to explain myself to people, for me this is harder than saying I have HCV. So far the trial have ignored my e-mails....I have come to expect obstacles,ignorance & a wall of silence from authorities. My consultant doctor seems pretty elusive too....she doesn't seem to have an e-mail address so out came the "Quill &Vellum" to contact her...no reply from her either! There is a part of me that genuinely believes I could get through life without any treatment. I would love to tell all the doctors to just go & "F++k themselves and to stick their stupid overpriced medicine where the sun doesn't shine. I want to believe that not all of us need their drugs & I have a feeling that many of us could live out the rest of our lives just fine without Sovaldi, Interferon etc.....but then I get a reality check...I have HCV, it will give a third of us Cirrhosis....it would be a high stake gamble to completely turn down treatment, but a liberating gamble....to not feel anguish everyday about whether the NHS will allow Sovaldi or will your insurance company pay up. I think (according to the rules here) if Sovaldi gets through, I won't be eligible for it anyway! NICE say type three's have to have had treatment & failed or have Cirrhosis! Plus they still insist n giving Interferon along with the new drugs! My elusive consultant tells me Interferon wouldn't be good for my mental health, so does this mean I am in a pharmaceutical no-mans land and shouldn't take anything? Oh well, it is what it is and I am to tired to get depressed, I think I'll plug in a guitar and have some fun instead...does anyone remember what fun is?

LC · Senior Member

It does have a bit of a stigma, mainly because of how most of us got it. People feel free to make fun of AIDS and Hepatitis in a way you aren't ever going to see them talk about cancer or diabetes. I don't tell people in my everyday life. I don't need to deal with extra drama.

Some pharmaceutical companies are setting up ways to help people who don't have insurance and make under a certain amount a year. I read something someone on here said about Gilead doing that, and I imagine others have similar charitable programs set up. They want to bilk the insurance companies for as much as possible while still being cast in a somewhat favorable light to the public.

When you think about it, those companies have to answer to their stockholders who want a maximum return on their investment.

Did you talk to/hear from anyone at the Dr about that trial yet? Fingers crossed for you.

Angel67 · Senior Member

A 38 on the Fibroscan is very high....my first scan malfunctioned and came in a 36....I knew it couldn't be right, so they got the XL probes out and I was just under 8. Once Cirrhosis sets in it's harder to cure this vile illness, so people shouldn't have to wait an eternity for decent treatment. While I applaud the 91 third world countries that are getting these drugs for the price of peanuts, I can't help but think how is it that most western nations are stalling & even many Americans will miss out, even though the drug is made in their country!

Angel67 · Senior Member

I guess Hep c will always have stigma attached to it...which may make it a not so popular cause ?

robertsamx · Guru

Hi Angel67 I understand your dilemma, Do I take the blue pill or the red pill. Inf/Riba is a hard pill to swallow, I was offered that treatment 10 to 15 years ago, when Riba/Peg became the new wonder drug that cured more people with the use of Peg/Inf/Riba. I also turned it down, at that time DAA's were not in the pipeline. Now with the DAA's everyone has a chance of SVR.I have had type 3 for about 35 years, my fibro scan was 38.I have a stiff liver,F4. I was luckey to make a trial early this year and did 16 weeks of sovl 400mg / Riba 1200 mg daily! The Sovl was no big deal , but the Riba kicked my BUTT. Its been 5 months off riba and i'm still not the same person, and can't sleep. The Solv I feel has no side effects. But the Riba is a different story. Anyway, My point is that the Solv/Riba did NOT get me to SVR, 4 weeks post treatment my V/load was 18 million. And the point is that cirrhotic type 3 is hard to cure, and I am like you waiting for a triple DAA that will work. Hang in there and keep pestering the trial people, your day wiill come. It cost Gilead 11 Billion dollars to buy sofosbuvir from a small pharm. company and then they did all the trials, so they ( Gilead) I feel made the higher cure rate happen. Type 3 stiffies just need to be patient, I dont beleave the pharm companys are not working on a cure rate of 100% for us type 3 folks. Think about it, if the cure for type 1 is about 97% with the use of 2 to 3 DAA's, then toss in competition between a couple pharm companys and the price comes down on all DAA's. The next logical thing is for them to move on to a higher cure rate for us type 3"s thats where the money will be. We are the hardest to cure. Keep your chin up mate!! RC.

Isiscat2011 · Guru

Angel67 wrote:
It's crazy how you have to be really ill to be treated & I know this happens here to people with eyesight problems...like you don't get treatment till you go blind! But Hep c responds better the earlier they zap it....the mind boggles (hanks for your advice & kind words).

It really does boggle the mind, Angel67. As you mentioned in another post governments can find the money to finance wars but can't seem to figure out how to ensure equal access to health care for all. We are reduced to rationing resources that need not be scarce at all. The costs have become unsustainable here as well; something has to give.

HCV tx may become more accessible sooner than it appears at the moment in the UK as well. Take good care of yourself and continue to monitor your liver. Things will work out.

Angel67 · Senior Member

It's crazy how you have to be really ill to be treated & I know this happens here to people with eyesight problems...like you don't get treatment till you go blind! But Hep c responds better the earlier they zap it....the mind boggles (hanks for your advice & kind words).

Isiscat2011 · Guru

Angel67 wrote:

___________________________________________________________________________________________________

I am live in London, so things run a little differently over here. I think we are just cattle to our government & they are happy to see lame cattle put down...I know that sounds cynical, but it feels that way.

______________________________________________________________________________________________________________

Hi Angel67:

The UK is not as different from the USA as you may think, but more on that later. You are experiencing what everyone all over the world has been experiencing for many years in the world of HCV. You were recently diagnosed and your tx options are still limited. Better drugs are now becoming available, but they are being distributed for the most part, to the sickest patients first. Fortunately, you are not one of the sickest. Unfortunately, you don't have access to the all oral DAAs.

I was in your situation 3 1/2 years ago; some people here have been in it for decades. My only tx option at the time was an Interferon combo with Riba and Incivek. It didn't work out for me but knowing what I knew then, which wasn't much, I would probably make the same choice to risk the tx. Knowing what I know now about that particular tx I would not make the same choice but the information available at that time was incomplete and, as it turned out, very misleading. We live and learn.

You have the opportunity to try the Interferon/Riba combo now or you can wait for an all oral tx. Another alternative is clinical trials but they are few and far between. The information about Interferon/Riba is more reliable now than it has ever been. What you don't know is how it will work for you specifically. You also don't know how soon the all orals will become available. It seems safe to assume that this will happen within the next few years.

It is a difficult decision and the pressure is intense. We have all felt it. You wrote about feeling empowered by deciding not to tx. The feeling of uncertainty can be very uncomfortable to live with so it makes sense that a decision would make you feel better. The problem is that the decision not to tx can still leave you with feelings of uncertainty unless you can absolutely come to terms with the decision to delay tx and have a fairly definite plan on how to proceed next.

If you are not ready to formulate a long term plan yet this is what I would encourage you to do: table the question for 3- 6 months and then consider all the available information at that time (there will most certainly be more information in 6 months). Give yourself a chance to live with the new diagnosis and see how it feels: Can you deal well emotionally with delaying tx for perhaps a few years or do you feel a need to tx now? How you are feeling psychologically will most assuredly impact your health and everything else in your life so it is an important question to ask yourself.

With respect to how nations are handling the HCV epidemic there are problems everywhere. In the USA the sickest will be treated first (just like in the UK) and for everyone else it will be a crap shoot that depends on the doctor they select, the payer, perhaps the state they reside in, etc. Naturally, the rich do not have this problem in the USA, just as they don't anywhere. Nations are not that much different when it comes to some things because human nature is the same.

I wish you the best with your decision. :)

Angel67 · Senior Member

Huey wrote:
On Treatment you if you are working, get on FMLA , Family Medical Leave Act. You will need to take off now and then but not always. Your employer must adhere to this,

I am live in London, so things run a little differently over here. I think we are just cattle to our government & they are happy to see lame cattle put down...I know that sounds cynical, but it feels that way.

Huey · Guru

On Treatment you if you are working, get on FMLA , Family Medical Leave Act. You will need to take off now and then but not always. Your employer must adhere to this,

Angel67 · Senior Member

LC wrote:
There you go then! Who doesn't love a good pocket rocket? I know I do! I think they are starting to screen in some locations. Best of luck on getting in, and I hope you keep us updated.

And the very best of luck to you too!

LC · Senior Member

There you go then!

Who doesn't love a good pocket rocket? I know I do! I think they are starting to screen in some locations. Best of luck on getting in, and I hope you keep us updated.

Angel67 · Senior Member

LC wrote:
Angel67 wrote:
LC wrote:
I saw this - HCV Genotype 3 -- The New Treatment Challenge and started to see what you mean. Maybe if you tell your doctor you have to work to provide for your family and you are afraid that with the side effects, you won't be able to work and see if you can get enrolled in this:
Comparison of Sofosbuvir/GS-5816 Fixed Dose Combination for 12 Weeks With Sofosbuvir and Ribavirin for 24 Weeks in Adults With Chronic Genotype 3 HCV Infection - recruiting, links to http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT02201953
It's none of my business and I know you will choose what is best for you, but I hate to see someone sign up for Interferon.
HCV New Drug Research: UK Recommends Covering ... - I think it's going to break open in the UK soon. You know Gilead wants all the money they can get, including yours.
Interestingly I think my consultant is hoping I can get on a trial of Sovaldi+Rib. I e-mailed a place today to see if there is a space, I don't expect there will be. This consultant of mine thinks I should avoid Interferon as I have a history of....problems of the mind! But that's all good in theory but in practice it may leave a person with zero treatment options. Well maybe I can get them to throw in a strait jacket with the Interferon!
Call the doctor, bug the nurse. You British are too polite. Learn to be pushy like your b*stard American children.

Ha,ha...I take my wife along for assertive behaviour. She is my pocket rocket and just gets things done!

LC · Senior Member

Angel67 wrote:
LC wrote:
I saw this - HCV Genotype 3 -- The New Treatment Challenge and started to see what you mean. Maybe if you tell your doctor you have to work to provide for your family and you are afraid that with the side effects, you won't be able to work and see if you can get enrolled in this:
Comparison of Sofosbuvir/GS-5816 Fixed Dose Combination for 12 Weeks With Sofosbuvir and Ribavirin for 24 Weeks in Adults With Chronic Genotype 3 HCV Infection - recruiting, links to http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT02201953
It's none of my business and I know you will choose what is best for you, but I hate to see someone sign up for Interferon.
HCV New Drug Research: UK Recommends Covering ... - I think it's going to break open in the UK soon. You know Gilead wants all the money they can get, including yours.
Interestingly I think my consultant is hoping I can get on a trial of Sovaldi+Rib. I e-mailed a place today to see if there is a space, I don't expect there will be. This consultant of mine thinks I should avoid Interferon as I have a history of....problems of the mind! But that's all good in theory but in practice it may leave a person with zero treatment options. Well maybe I can get them to throw in a strait jacket with the Interferon!

Call the doctor, bug the nurse. You British are too polite. Learn to be pushy like your b*stard American children. biggrin

Angel67 · Senior Member

LC wrote:
I saw this - HCV Genotype 3 -- The New Treatment Challenge and started to see what you mean. Maybe if you tell your doctor you have to work to provide for your family and you are afraid that with the side effects, you won't be able to work and see if you can get enrolled in this:
Comparison of Sofosbuvir/GS-5816 Fixed Dose Combination for 12 Weeks With Sofosbuvir and Ribavirin for 24 Weeks in Adults With Chronic Genotype 3 HCV Infection - recruiting, links to http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT02201953
It's none of my business and I know you will choose what is best for you, but I hate to see someone sign up for Interferon.
HCV New Drug Research: UK Recommends Covering ... - I think it's going to break open in the UK soon. You know Gilead wants all the money they can get, including yours.

Interestingly I think my consultant is hoping I can get on a trial of Sovaldi+Rib. I e-mailed a place today to see if there is a space, I don't expect there will be. This consultant of mine thinks I should avoid Interferon as I have a history of....problems of the mind! But that's all good in theory but in practice it may leave a person with zero treatment options. Well maybe I can get them to throw in a strait jacket with the Interferon!

LC · Senior Member

I saw this - HCV Genotype 3 -- The New Treatment Challenge and started to see what you mean. Maybe if you tell your doctor you have to work to provide for your family and you are afraid that with the side effects, you won't be able to work and see if you can get enrolled in this:

Comparison of Sofosbuvir/GS-5816 Fixed Dose Combination for 12 Weeks With Sofosbuvir and Ribavirin for 24 Weeks in Adults With Chronic Genotype 3 HCV Infection - recruiting, links to http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT02201953

It's none of my business and I know you will choose what is best for you, but I hate to see someone sign up for Interferon. cry

HCV New Drug Research: UK Recommends Covering ... - I think it's going to break open in the UK soon. You know Gilead wants all the money they can get, including yours.

Angel67 · Senior Member

Thanks for all your advice & replies. Doubts over my decision have been pestering me all night, bit I think I will just review the situation periodically & keep an open mind. Type 3 does seem to be a neglected genotype and funnily enough, the old peg/rib combo seems to work with about a 65% cure rate. Still there are 54,000,000 type 3's in the world, so this all means money to a drug company...perhaps one will step up for this subgroup? Interestingly I have been reading about the company,Pharmasset, who developed Sovaldi. They invented this at a university using public funds, also they estimated the price would be 36,000 dollars...enter Gilead,who did nothing to develop this drug and the price shoots up to a whopping 85,000! Money does make this world go aroundð

Scruffy · Guru

Hiya Angel

That inter/riba seems to be the treatment for geno3. The first time I was on that was in 2004. I was treatment naive and it wasn't all that bad, I never missed a day of work. I am or was (i hope) geno 1a and it didn't work so well. Fast forward to 2013 I was on the same combo plus Incivek. It was a lot harder nine years later. If you do it now it could work for you and if not you will have another bullet in your gun as far as a reason for them to give you the new med's when they can. Its a roll of the dice, just my 2 cents. In the end the choice is yours and what ever you decide will be right for you.

Best wishes for you

Huey · Guru

I am a geno type 3 and I took it for 24 weeks, It is do able. I don't recomend trying to work throughout treatment. The new DAA's are not working on Geno-3's . You can wait but understand this may not change. Gilead is not concerned with geno 3's , only a few in USA and that is where they are making the money. A cure for all genotypes will be out before they put out any new DAA's for the 3's , Ten years or more.

Milliganus · Senior Member

Angel67,

I'm sure you know about ClinicalTrials.gov here in the US, however if you don't, here is a link to all clinical trials being done in UK currently. I just finished a trial here in U.S. with the newer drugs, and it cost me $0.00.

http://clinicaltrials.gov/ct2/results?term=%22Hepatitis+C%22+AND+%22United+Kingdom%22&pg=3

good luck!

LC · Senior Member

Angel67 wrote:

My consultant doctor mentioned trials and I am on a list . But of course it's a hit and miss affair. We have some very big teaching hospitals here and they treat people from all over the country. You must visit again soon!

I am glad you are on the list for those. I would keep an eye on them and not be afraid to ask when you saw one that you think would be a good fit for you, unless there is a queue and you can't jump your place. I waited for 2 years for St Louis to call, then once I had given up and started pestering a city 6 hours away, St Louis finally called. I had to take a break from worrying about it while I was waiting too. I think you are making a wise decision to wait. I'm so glad I didn't do interferon treatment. I am praying your time comes soon.

I hope I can see London again before I die. I worked for an international company then, and so I went over to work and help fill in while coworkers were on holiday, but I had nights and weekends free to explore.

Angel67 · Senior Member

beingsassy wrote:
Angel,
i also refused to take interferon. I had the disease for at 30 years before I was offered and took Sovaldi and ribavirin. My tests showed a fatty liver but all else was good. So, like you, I decided to wait until an easier tx became available. Unless your liver disease gets worse, I wouldn't do it either. My first hep doctor told me I'd probably die of old age before the disease killed me because it was progressing so slowly. I hope you get offered a different tx soon. Keep up working with ur insurance company. It's too bad that the pharmacuetical companies are asking such high prices instead of caring about saving lives. Ditto for the insurance companies that won't pay for the meds so many of us need. It's a disgrace. Keep up with the positive attitude, you have time to wait. Praying for you
Gigi

Positive is better than being scared...I'm tired of being scared and some time away from thinking is what's needed....trashy TV will do the job!

Angel67 · Senior Member

LC wrote:
Hi Angel, I was at the same place you were a couple of years ago when they were offering me a Interferon based triple therapy, and I decided to wait. I'm happy that I did. After 2 years, I got into a AbbVie clinical trial. It does have Ribavirin, but that isn't causing me much in the way of side effects so far. Turns out, it's the most effective treatment for my genotype anyway, and that information came from the Gilead people. You might consider a clinical trial if you think it's going to be awhile before the interferon free meds are available over there. There are a couple of other big pharmaceutical companies that are also coming out with interferon free meds. I bet London is a good place to get treatment. I got to spend 6 weeks there one summer, and I loved it there.
https://clinicaltrials.gov/ct2/show/NCT01716585?term=%22Hepatitis+c%22+AND+%22London%22&rank=50 - this looks like what I'm on.

My consultant doctor mentioned trials and I am on a list . But of course it's a hit and miss affair. We have some very big teaching hospitals here and they treat people from all over the country. You must visit again soon!

Angel67 · Senior Member

Tig56 wrote:
AASLD recommends Sov/RIBA for GT 3's for 24 weeks or Sov/RIBA/IFN for 12. No PI's for GT3's. Will have to see what EASL's position is. I'm sure the NHS hesitation remains a financial one.
http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection-patients-starting-treatment
Tig

It's all money money money....okay, they have a point, this stuff doesn't come cheap, yet money is still found for wars...what strange governments we have!

LC · Senior Member

Hi Angel, I was at the same place you were a couple of years ago when they were offering me a Interferon based triple therapy, and I decided to wait. I'm happy that I did. After 2 years, I got into a AbbVie clinical trial. It does have Ribavirin, but that isn't causing me much in the way of side effects so far. Turns out, it's the most effective treatment for my genotype anyway, and that information came from the Gilead people. You might consider a clinical trial if you think it's going to be awhile before the interferon free meds are available over there. There are a couple of other big pharmaceutical companies that are also coming out with interferon free meds. I bet London is a good place to get treatment. I got to spend 6 weeks there one summer, and I loved it there.

https://clinicaltrials.gov/ct2/show/NCT01716585?term=%22Hepatitis+c%22+AND+%22London%22&rank=50 - this looks like what I'm on.

Angel67 · Senior Member

Cinnamon Girl wrote:
Hi Angel, sorry to hear that but unfortunately that remains the position for tx naive Genotype 3`s without cirrhosis in the UK at the moment, as far as Sovaldi is concerned.
Here are the draft treatment guidelines issued by NICE in August and if you scroll down to the last paragraph you`ll see where that it states that..
http://www.hepctrust.org.uk/News_Resources/news/2014/August/NICE+draft+recommendation+for+Sofosbuvir+key+points
And yes, it is all about the cost.
So in your case the only currently available option is the peg/rib tx for 24 weeks, and quite honestly I think you`ve made the best decision to put it on hold for now. You`re being monitored regularly by the hospital and have time to wait. We don`t know what the situation will be in the future as more DAA`s are approved but I`m sure at some point there`ll be a better tx option for you and you`ll finally be able to clear the virus.
I know what you mean about having a break from worrying about having Hep C and I think that sometimes it`s empowering to realise that you`re not going to let it rule your life.
Keep in touch and hold on to your positive attitude!

Thanks for everything. It's not that I have given up, it's just giving yourself a break so to speak...a break from constantly googling things and trying to find a way to get the best treatment....I expect I'll be back at it soon enough!

Angel67 · Senior Member

hrsetrdr wrote:
Hi Angel,

I'm surprised that they offered only the Interferon and Riba treatment, and not(at least) one of the triple treatments, Interferon and Riba plus either telaprevir or boceprevir, which has twice the success rate as interferon and ribavirin alone.

I hope that you can persuade the tight fisted bean counters to be foward thinking and afford you a decent treatment regimen.
Cheers, Tim

Yes it's all budgets and money Tim!

Cinnamon Girl · Guru

Hi Angel, sorry to hear that but unfortunately that remains the position for tx naive Genotype 3`s without cirrhosis in the UK at the moment, as far as Sovaldi is concerned.

Here are the draft treatment guidelines issued by NICE in August and if you scroll down to the last paragraph you`ll see where that it states that..

http://www.hepctrust.org.uk/News_Resources/news/2014/August/NICE+draft+recommendation+for+Sofosbuvir+key+points

And yes, it is all about the cost.

So in your case the only currently available option is the peg/rib tx for 24 weeks, and quite honestly I think you`ve made the best decision to put it on hold for now. You`re being monitored regularly by the hospital and have time to wait. We don`t know what the situation will be in the future as more DAA`s are approved but I`m sure at some point there`ll be a better tx option for you and you`ll finally be able to clear the virus.

I know what you mean about having a break from worrying about having Hep C and I think that sometimes it`s empowering to realise that you`re not going to let it rule your life.

Keep in touch and hold on to your positive attitude!

beingsassy · Senior Member

Angel,

i also refused to take interferon. I had the disease for at 30 years before I was offered and took Sovaldi and ribavirin. My tests showed a fatty liver but all else was good. So, like you, I decided to wait until an easier tx became available. Unless your liver disease gets worse, I wouldn't do it either. My first hep doctor told me I'd probably die of old age before the disease killed me because it was progressing so slowly. I hope you get offered a different tx soon. Keep up working with ur insurance company. It's too bad that the pharmacuetical companies are asking such high prices instead of caring about saving lives. Ditto for the insurance companies that won't pay for the meds so many of us need. It's a disgrace. Keep up with the positive attitude, you have time to wait. Praying for you

Gigi

Tig · Admin

AASLD recommends Sov/RIBA for GT 3's for 24 weeks or Sov/RIBA/IFN for 12. No PI's for GT3's. Will have to see what EASL's position is. I'm sure the NHS hesitation remains a financial one.

http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection-patients-starting-treatment

Tig

hrsetrdr · Guru

Hi Angel,

I'm surprised that they offered only the Interferon and Riba treatment, and not(at least) one of the triple treatments, Interferon and Riba plus either telaprevir or boceprevir, which has twice the success rate as interferon and ribavirin alone.

I hope that you can persuade the tight fisted bean counters to be foward thinking and afford you a decent treatment regimen.

Cheers, Tim

Angel67 · Senior Member

Fireman Rob wrote:
Hi Angel,
Interferon and Riba weren't something I was interested in either. The bottom line is I have a family to provide for and those meds likely wouldn't allow me to function at work like I need to. Hopefully the new generation meds will become available to you soon as the Sovaldi/Olysio combo was more than I had hoped for. I would take those meds again in a heartbeat!
Luckily it sounds like you have time but keep an eye on your AST/ALT and platelets. Have you had a biopsy or fibroscan to verify your liver status? Anyway, here's to good health but don't forget about your HCV illness because when you start having troubles, the damage is there and will prove to be problematic in the long term.
On the other hand, I wish I could have more if your mindset in me as it's hard not to stress about SVR and what comes next with this virus ( ; I really admire that in you.
Keep in touch and keep us posted on the progression of new treatment options in London.
Best,
Rob

Hi Rob, over here the hospitals in London are giving Fibroscans and a follow up ultrasound. My first Fibroscan gave me a hideously high score...35! I knew it had to be wrong and subsequent scans came in at a nice 7.6...moderate fibrosis. This illness has made me re-think everything in my life...even kissing my wife ( I have bleeding gums at the moment so I can't kiss her or share a fork!). I suppose as a newbie to this thing, I have been utterly overwhelmed and dominated for the past few weeks, now I have just had enough of it....it feels like a giant bully has been pushing me around and I have finally said," Come on then, let's take it outside"! A rest from worrying will do good and I am one of the lucky ones inasmuch that I can wait things out for a good few years till better treatment arrives.

Angel67 · Senior Member

Hi Tig, in a way (and I know it sounds strange) turning down the treatment is a way of me taking control . These past few weeks I have felt like I am falling and I have to answer to Hep C...well I feel like I have regained some mental strength and by saying no, I psychologically feel like I am master of my destiny. I know it sounds weird and maybe foolish, but all I am is a collection of thoughts trapped in this broken body. Now if those thoughts are negative what use is a perfect body...I feel more in control, and it might be an illusion, but I feel better than I have done since I found out! In my short time here I am seeing the new members full of terror and looking at any solution to get this virus out of their body....taking a step back and a deep breath is required. We shouldn't panic and think it's the end of the world...the end comes for all of us and sure, we want to put it off for as long as possible, but this doesn't kill us overnight and there is time to look at the options.

Fireman Rob · Senior Member

Hi Angel,

Interferon and Riba weren't something I was interested in either. The bottom line is I have a family to provide for and those meds likely wouldn't allow me to function at work like I need to. Hopefully the new generation meds will become available to you soon as the Sovaldi/Olysio combo was more than I had hoped for. I would take those meds again in a heartbeat!

Luckily it sounds like you have time but keep an eye on your AST/ALT and platelets. Have you had a biopsy or fibroscan to verify your liver status? Anyway, here's to good health but don't forget about your HCV illness because when you start having troubles, the damage is there and will prove to be problematic in the long term.

On the other hand, I wish I could have more if your mindset in me as it's hard not to stress about SVR and what comes next with this virus ( ; I really admire that in you.

Keep in touch and keep us posted on the progression of new treatment options in London.

Best,

Rob

Tig · Admin

Hi Angel,

Sorry you got that bit of information, I know you were hopeful for the Sovaldi treatment. The good news is you've received some good information regarding the current health of your liver. Fortunately you'll be able to wait until such time allows you to receive the new oral protocols and I don't think it will be long before the opportunity presents itself.

I hope you stay around and while educating yourself on the future availability of these medications, you will be a great help for the new members with genotype 3. Do your best to stay positive, your day is coming!

Tig

Angel67 · Senior Member

Today I went to the hospital to find out where I stand with this illness. Well I am genotype 3, have moderate fibrosis and a fatty liver. I had an ultrasound scan two days ago, everything was checked and nothing is unusual....this made me happy as I was more worried about what might show up on the inside. So I was offered treatment to start today, Interferon and Rib...I thought for about fifteen seconds and decided to turn this stuff down. My reasons being that I have had this thing inside me for twenty eight years and I am not dead yet...I don't want to spend six months feeling like death warmed up. There's much talk about the new generation of miracle drugs for Hep c....well they ain't on offer at this time ! Perhaps they will be in a few years? I don't have that much confidence in that happening as the drug companies want so much money for their product...not just Sovaldi, the other products will be equally extortionate and I can't see our health service ever paying for this stuff. I find it curious that if I lived in a third world country I could receive Sovaldi, but not if I live in London, Sydney etc! I am actually quite happy now as I was really worried about what state my liver was in...now I know it's in fair shape I am not so worried about Hep c or the miracle treatments that are unavailable to westernised nations! So here's to life, with or without Hep c....I'm done worrying about this thing. The old drugs can be stuck where the sun don't shine and not in my arm...and as for the new stuff, well I'd take it if it was on offer...but I ain't going to sweat it! I'm going to lose some weight, eat better and get fit. Yes I hope we all get Sovaldi(like the third worlders...good luck to them) but if not, well "It ain't over to the fat lady sings"!

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