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Starting Sofosbuvir GS 5885
Hi, I tried Teleprevir last year and failed. The Institute called me last week to see if I wanted to be in this new study for Sofosbuvir GS 5885. I have not been able to get much info on the net except from the Drug Co.
They have one slot open and I need to be there tomorrow for my bloodwork and EKG. Is there anyone on Med Help that is in this trial or anyone with any info that would help me make this decision. I was so dis-hearted when I could not stay in the Teleprevir study. It is Phase 3, either 12 or 24 weeks and either with or w/o Riba.  It starts next week. Thanks for any info. Reen
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I dunno when I'll make time to look at mine.  My next draw is a 12 week EOT in about 4 weeks.  If I fail that I'll get notified.

I kinda doubt I will, as I have yet to meet a 12 week w/ riba tx failure, and I treated 21 weeks.  There may be more data released at the Gilead 3rd quarter meeting Oct 29, or at the AASLD early November.

Most of us 24 week treaters should have their 12 week EOT by around New Years and the 24 week PCR 12 weeks later.  The efficacy rates and safety will have long been established by then, so I don't know why Gilead cannot apply for an NDA by that date.  If they are only applying for 12 week treatments I also wonder if the 24 week TX is even relevant/required. : )

Willy
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And don't forget there are a few on these threads who are doing the 8 week tx.

I was told by my trial nurse that some data would be released at AASLD, with more to follow at the European biggie liver meeting in April.

In the UK, I will have my 12 week EOT results in around a week's time (12 week tx w riba - ION-1 trial for tx naive). Re the 4 week blood draw, one small indication, though not definitive is the liver function tests - my ALT was still low at 16.
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I was told the treatment would be 8 to 12 weeks -- there's no more 24 weeks.  I had my treatment at Northwestern Memorial Hospital in Chicago by the way.   Did 23.5 weeks with RBV!   I go for my four week end of treatment on this Tuesday.     I guess I won't know for another 3 months then!
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Good luck to you, I feel it will be good news. I am so amazed at people doing the 24wk, it was all I could do to get through 12. You deserve it.....as well as we all do!!
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(nobody wrote) "I was told the treatment would be 8 to 12 weeks -- there's no more 24 weeks."
===========

Yeah, I think that's a given.  If so, I kinda wonder why any 24 week data might be needed for a treatment they will not go with?  As long as some serious safety issue does not crop up.  Looking at it backwards.... if they only had started with 8 and 12 week treatments..... no 24 week TX...... couldn't they still apply for an NDA?

If that is all they are applying for, either 8 or 12 week, do the need the 24 week SVR-12  or 24 week to apply?

Understand also.... there is a humanitarian use aspect to this.
The sooner the drug treatment gets approved, the sooner many lives will be saved.

Is it possible that an NDA could be applied for early?

I am looking for a disclosure of interesting news at the Oct 29 Gilead quarterly meeting.

willy
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R.I.P. Lou Reed. Another victim. I'm gutted.

Willy - I don't think they can rush the NDA but not sure. They had to try the 24 weeks first as they really didn't know if 12 or 8 weeks would be enough. In the UK and Europe, they still don't know - as I said we're still on ION-1 with everyone finishing 24 wk tx about now. I guess  they'll do ION-2 soon and maybe they won't do 24 weeks, but I  think they will until they have definitive, long-term evidence.

These are small trials in each center and there is still no long-term data.  Who knows if 12 week tx people will still be clear after 1 year, 2 years, 3 years? We don't know, and neither do they, yet. Maybe (I hope I'm wrong) only the 24 weeks treatment will be sustainable over a few years...that's what they still need to check. These drugs are still so new.

Re the humanitarian aspect - it's the same for all trials for all illnesses - cancer etc. There's a pace and protocols they have to follow, not just for protocols' sake, but to ensure safety etc.

I wouldn't hold your breath re Oct 29 - I doubt if they'll release any info that we don't already know. I may be wrong.
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Is Sofosbuvir and 5816 No Rib going to be the cure for all Genos?
Looks promising
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I also don't know.... but I've heard of earlier 2014 approval; no longer 2015.
We will see.

I was also under the impression that they have been treating a SVR12 w/ DAA's as the same as SVR 24's, although there may be a difference so far as FDA NDA approval.  

Regarding the ION 24 week ...... I don't know the approval requirements if they will not be NDA filing using a using 24 week dosing regimen. (who knows; maybe they will for some group  )
All I know is that if they could apply 12 weeks earlier it will mean a huge opportunity to treat more people sooner.  I think we won't have long to wait for that info.

The pattern I have recently seen is that Gilead usually throws the shareholders some delicious tidbits.  Last year we went through EASL, but a few weeks later we were told about prelim data on Lonestar and the new expanded 8 and 12 week Ion trial.  Some of it timing, but check it out, it's always a good listen/read.

In the shareholders meeting we may hear where Gilead is going, in the liver conferences we hear where they have been.  : )

willy
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I also heard that new submission (all orals) is planned for Feb 2014.
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568322 tn?1370169040
"in spite of the huge number of people who will be cured of HCV..... the demand for livers will only continue to rise.....
Want to guess why?

NASH, and epidemic of fatty liver..... "
-----------

I think prebiotics will take care of NASH.  I hear they're presenting a paper at AASLD.

Co
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Nice to see you.

It is a huge issue and it is gaining steam.

http://www.npr.org/blogs/health/2012/11/16/165280637/this-is-how-diabetes-swept-the-nation
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Forgot to mention along with my 24 EOT they noticed I had not had an ultra sound for awhile, so they sent me to get that. Results are good and one bonus, they did my entire abdomen area, including spleen. My spleen was a little enlarged last ultra and now it has also shrank back to normal size. So good all the way around. I also signed up for the 3 year checks, which is optional. I figure why not? It's a blood draw once a year for three years by the trial doctors.
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1st follow up draw after EOT four weeks ago
blood work looks great enzymes low end of normal - hemo back to 15.1

I feel great!

next draw is in 60 days

no one in the UM studies has relapsed, got to spend some time hanging with the techs who I have gotten to know. They have been working in Center for may years going back to Interferon trials and they are very excited -


new trials in Miami are 8 & 10 weeks
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Just had a phone call from Trial nurse that there is a slot for a teleprevar fail person to go on a 12 week Sofosbuvi rplus one other unnamed drug  with or without riba. I am a 1a and have had hep c for over 30 years, my last biopsy was f2.  I am concerned that if I fail this I will ruin other chances in the future.  WAs only on the telepravir trial for 4 weeks before I was bumped..
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Just read the trial info.. these are the arms.  I am in Melbourne Australia.

1) SOF 400 mg + GS-5816 25 mg once daily for 12 weeks, or
2) SOF 400 mg + GS-5816 25 mg + RBV (1000 or 1200 mg/day in a divided daily dose) for
12 weeks, or
3) SOF 400 mg + GS-5816 100 mg once daily for 12 weeks, or
4) SOF 400 mg + GS-5816 100 mg+ RBV (1000 or 1200 mg/day in a divided daily dose) for 12
weeks.
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Which is the Best arm to Clear for good?
SOF 400 +GS-5816 100 MG  Plus RBV?
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Not sure, but you would think the one with the most drugs!...Unfortunately I do not get to choose which arm to go in!
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I would grab the chance with both arms  - there are several people on these posts who are telapravir failed - Gilead's drugs are said to be far superior and are proving to be the way forward.

Do you know the name of GS5816 or will you let us know when you do? I had heard from my hepatologist that Gilead has developed a drug better than ledipasvir so I am guessing this is it. If it is superior, then just maybe they will go for FDA and other countries' approval with this instead than ledipasvir?

Willy - For some reason, senior management at Gilead have been dumping stocks these past few months - more than six senior board members have sold shares - usually this means something's wrong with the company, but in this case, it kinda contradicts clinical evidence with their hep C drugs anyway. But when senior people sell shares, they do know something we don't know, which may only be apparent months or a year later. If one person sells, it could mean they are paying for a divorce or their kids' college fees, but six selling?

Watching out for news from AASLD...


Renee - good news about the spleen. I too am going for an ultrasound (from my gastro guy) soon, to see what's going on with my gut - supposed to have colonoscopy too, but dreading that one.
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If I understand this correctly, GS5816 is the next generation of ledipasvir type drugs and will be used for all genos.

http://www.natap.org/2013/EASL/EASL_34.htm

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Yes, that Telapravir experience was a bad one. It almost stopped me from doing this one.
The colonoscopy is a piece of cake. I had my first one not too long ago. When I woke up, I said are we ready to go? LoL didn't even know it was over!
I also, noticed the stock going down. We the little people are always the last to know. Let me know what you find out.
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(geshmit wrote) "Willy - For some reason, senior management at Gilead have been dumping stocks these past few months - more than six senior board members have sold shares."
==========================

They have to report insider selling, so we tend to see what has happened in our rear view mirror.  There was an article reporting it..... at the end of September.  Are we worried that the insiders know more than we do? The stock just hit 70 a few days ago..... that is fact.  OTOH...... if you go back 30 days before the article which I provide was written....the subject being insider trading, the stock was at 59 dollars.  I dunno..... that's a lot of money to leave on the table.

Here is the article..... but be sure to read the comments below the article.  I have no opinion, except that these people are smart, and have good advisors.  Some of it is that they are given stocks as pay and may need to sell or divest to keep assets safe.
(hahhahahah; maybe I am in denial.  : ) )

http://seekingalpha.com/article/1718942-insiders-are-selling-gilead-sciences

We will see and thanks for the heads up.

willy
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I followed these insider trading deals real time, I'm subscribed to Google alerts for all things Gilead - (they happened when Gilead was still optimistic about trials) but still don't know exactly why they took place....I can't see the end of this article unless I register for future emails and not sure if I want more junk in my inbox.

I don't think they sold cos the stock was going down - it's been up and down for a while - 70 is the all time high I believe - but it will continue to go up as long as the trials produce good results. Gilead stands to make a killing with Hep C, but they also have other new drugs for cancer and HIV. I think their scientists are the best.

Let's see what comes out of the AASLD meeting...
I just saw another forum on another website where people are doing the latest 5816 trials, so definitely the next generation from ledipasvir.  
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Well, another happy Gilead customer!

Just got my 12 week post tx results - and yes - I've beaten this disease (so far). Woo hoooo. My appointment for my 24 week blood draw is still in my diary for mid January...

Now to the gut issues, but at least I'm rid of the life-threatening one.

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Another big WHOO HOO. I know how happy you are...as my daughter would say: takes one to know one :)
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Gilead is a Goliath in big pharma, HVC drugs are only a piece of their biz.
I own the stock and read the reports.

if my memory serves me correctly they bought Sofosbuvir from Pharamset for 11b before it was fully developed and tested

On another note - I feel better every day lots of exercise - dropped 11 lbs in the past two months from 180 to 169 and getting stronger and leaner than I have been in recent memory

full reset at 61 yrs old.... :)
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I would also invest in Gilead stock if I could at the moment. Yes, HCV is only part of their biz, but a prominent part especially as their drugs do mark a revolution in hep C which was neglected for years as a disease.

A reset is exactly what I need at the moment - a gut and full system reboot! Back to the gym, I guess.
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Going to share some of the letter my trial doctor sent to my Gastro with a cy to me. It basically says that the HCV RNA was undetectable from week 6 to the end of treatment. A sustained viral response (SVR) with no HCV RNA detected at 24 weeks after discontinuation of meds. With an SVR there is 1% chance of return of the virus. The fibrotest on 1/4/13 indicated a likelihood of stage 4 fibrosis. My most recent liver biopsy was in 2010 with stage 2 fibrosis. These fibrotic changes may improve now that there is no HCV attacking the liver. Further monitoring of my liver status can be done annually for a couple of years by testing the viral count not the HCV antibody as it will usually remain positive for life. In addition, I should receive hepatocellular carcinoma screening every 6 months with a liver scan and AFP tumor marker blood test. Also, I had the option to enroll in a follow up study that will monitor the live serum tests and HCV RNA for 3 years. (I did enroll).
So, I have a 1% chance of relapsing....hopefully my liver will repair damage done (I am taking a lot of supplements to help it) and just keep an eye on everything yearly...with the tumor marker tests added. Remember the antibody will always be with us.
So this is pretty much the end of the chapter, I wanted to share with all of those coming up behind me, so you can get an idea of what to expect.
Going to make the most of my renewed life...the glass is half full.
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Renee going into these trials we had only hope and prayers. Now we have a Hepititas C free body, with a tiny chance that it might come back. I think we are some of the most four ate people who walk the earth!!!! Congrats to you! When Hector and I answerd this thread ( I think we were one and two) if memory serves me, I think we told you to run and get into the trial!!!! Who mould have ever thought ths thread would have continued this long. I have seen nothing but great information, kindness, compassion and a general sense of we will all get through this somehow ith everybody's adding their 2cents!!!!
I can only hope that Hector health improves quickly. He was such a tremendous help to so many including me. As I have said many times I really believed he was instrumental in getting me on the Gilead trial that has basically saved my life!!!! Hector if you read this my and many of us thoughts and prayers are with you.
Rene and all others who have achieved SVR good luck lead healthily and productive life's. Peace to all!
Jerry
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just read some info for us incivek experienced 1a "ers" from giliad's  q3  and q&a session........

http://seekingalpha.com/article/1785222-gilead-sciences-ceo-discusses-q3-2013-results-earnings-call-transcript?part=single

http://seekingalpha.com/currents/search?query=ledipasvir&source=email_rt_mc_body&app=n
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Hello MagTX,

I hope all is well and I wanted to start by wishing you a Happy New Year.
        First off let me start by apologizing for the delay in my response. The months have been busy and it took awhile for the results to make their way to me. The downside to this was, that my family physician wasn't the one who relayed the information to me, even though the information came in,  Dr.Cold didn't contact me. I,  just today, found out that I was exposed to Hepatitis C (the virus is inactive within me). Which is wonderful news!
The journey was not an easy one, the funny thing about how all this came to be was that the Doctor that tested me initially (let's call him Dr.Awesome) was the one that asked for my results, and not Dr.Cold who is my family Doctor (which was shocking to me, and I felt very offended for his lack of interest in his patient).
With all the good that came to be, I am not one to complain or even let it get to me. I feel very fortunate and to be honest I owe a lot of my strength to you MagTX. You gave me the courage to speak out and ask questions and also the willpower to further see into my case. I will be tested again in one year.
Today was the day I told my family and since I had good news, it was of course well received. I felt that it wasn't good to keep the information away from them, but better to not have them worry until I found the final result myself.
With the scare, my family is in line to get tested as well.
We will see the results.

Thank You,
Lost

P.S
I hope I can do for someone on this blog what you have done for me, this way I will remain as active as I possibly can be on the forum.
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142526 tn?1397094272
Hi lost, very happy to hear your great news! Also, thank you for coming back to let us know your turn of events and for wanting to help others on the forum, that's so kind. :)
So basically what I'm reading is that you only have the antibodies present and no viral load for HCV, wonderful! You were one of the lucky ones, only about 20% are able to fight off the virus after exposure and never have any problems except that your antibodies will always remain positive.  There is no problem at all with having pos. antibodies, as long as your second test showed no viral load, the PCR by RNA test...  I'm confused as to why you will get retested in one year, there's no need since you already have these results and nothing will change. Did someone in the health care community ask you to repeat this in one year? If so, I would question this advise. Hep C is not like Hep B, and there's nothing inactive about the hep c virus, you either have a viral load or you don't, and your own body fought it off naturally and it can't return unless someone infects with hep c again in the future,it's  gone and dead. You don't have any thing to worry about, and go ahead with testing your family just for a piece of mind knowing they are ok, but hep c is very hard to transmit unlike the hep b virus which is easier to contract. Also, if you and your family have never been exposed to hep b it is wise to get immunized for it. There is no immunization for hep c.
I'm glad we can all make a difference here for you and that you followed through with the advise, it's great to hear your story, and thanks again for posting! Happy New Year!
Mag
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I hope that all of us that went through this journey together are having a Happy New Year. I know I will never forget 2013. The year my life changed for the better. I decided to go for the year follow up because why not? That way I can stay on top of my blood work and if anything else is wrong it would show up. I'm not so much worrying about the 1% chance of return.
The nurse told me it is offered as a way to just have follow up results on people who cleared. She said they especially want to monitor people who had cirrhotic liver. I was a stage 4 fibrosis but that is close enough for me.
Anyway so far, so good. I go next week for my first yearly follow up exam.
Would like to hear from some of the people who cleared about the time I did, I think about you guys often.
Very happy new year to everyone.
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Hi Mag,
Thank you again for your advise. I will ask Mr.Cold why I have to repeat in one year.
I will also let you know about my family results.
PS:
My husband when he was a child (3 years old) had peritonitis and after the surgery he got Hepatitis B.  I know the doctor told me yesterday that there is no cure for Hepatitis B but there is treatment for Hepatitis C. I know just my husband  liver tests were always perfect. They never saw on his blood that he had Hepatitis B. How is this possible? He was tested before for A and B ( like me also, when they told me that I had hepatitis A some time in my life -which I have no clue when) but they said that he never had A or B how is this possible? and he should get the vaccine.

My in-laws kept him on a strict diet for 14 years. I have the book for that diet but unfortunately is not in English. It is a guide how to eat and cook the food for chronic liver disease. The book was printed in 1954. You might say it  is old and not up to date but what  I learned from this book it seems for me that  it is a healthy way of eating and more special how to cook the food on liver diseases. Really hard for people who don't have the time.
I don't know if it is important but my in laws told me that the food that they give to my husband when he was sick was never refrigerated nor re-heated.  His grand mother was cooking from scratch every meal following the recipes in this book I told you about. They gave him just organic meat and vegetables.
This was what I was trying to do  for me(as much as I could) from the time I found out about Hepatitis C . I didn't do it exactly the way they have done it (no time) but I tried my best. The hardest was no salt at all. Instead of salt I was using fresh organic lemon juice -just a little bit. It is the hardest diet I have ever tried to follow on my life. You get used to it but really hard.
Thank you again Mag.

Lost



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Hi,  I can try to answer your question, though there may never really be a good explanation about your husbands hep b status on his lab findings. If he was indeed exposed to hep b then he would still have those antibodies present, they will remain positive for life. It's hard to answer why he doesn't have these antibodies present now with testing as they are neg. Maybe there was a lab error, which sometimes can and does happen through contamination or by getting another patients results as your own results, in error. Somewhere there was a mistake, that's all i can think of. If it were me I would retest and if these results show neg, antibodies to both hep A and hep B then I would start scheduling for immunizations for both A and B. Also, since you tested neg. for hep b maybe you both can start the immunizations together and get them out of the way. Hep b is a series of 3 injections , it will take 6 months to achieve full immunity, but some immunity begins to show up after the first injection, so that is good. :) you won't need to have the hep a vaccine, you have natural immunity for that one too! You're very lucky, you have nothing to worry about as long as you didn't have a viral load on the hep c PCR by RNA test and only showed pos. antibodies, you're good to go, congratulations!
I have no idea what Dr. Cold was talking about in wanting to re check your HCV status again in one year.... Let us know what he says if you don't mind. All I can think of is that sometimes doctors make mistakes or they are just not knowledgable enough about HCV.    Thanks:)
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A happy and healthy new year to all.

Re diets - I think there are newer schools of thought than 1950s ones about keeping the liver healthy. Our general diet has deteriorated since those years with the advent of processed foods, junk food and corn syrup. I've tried different diets to keep my liver and gut reasonably healthy - macrobiotic, not mixing protein and carbs, no fried foods etc, but I never heard of not eating refrigerated foods. But then again, refrigerators were not as commonplace in the 50s..these days I don't do anything extreme.

In this millennium, I think that cutting out processed and junk foods, eating whole grains and fresh fruit and veg with not much red meat is pretty good for keeping healthy. Milk thistle is also a good supplement for the liver.

Hep B antibodies always show if you've had the disease and cleared it - I don't know if you can have a vaccine if you've already had it? And if you're not travelling to exotic places or having promiscuous, unprotected sex there's no reason to contract Hep B, but different countries have different policies regarding the vaccine. People with Hep C should have the Hep A vaccine - this I know, because if you get Hep A while you have Hep C, it can kill you.

Great news about the 24 week SVR, Renee. I have my 24 week EOT test in a couple of weeks. I'm not sure if they do the follow up observations in the UK, but if they do, I too will take part (that is, as long as I am SVR!).

all the best



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EOT results 12 weeks SVR :)
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You will be :)). I think supplementing is the reason I am healthy. I keep my immune system built up and eat healthy too. Milk Thistle is good to keep the liver healthy and there are other supplements too that really help the liver. I think resolutions have to turn into habits to work.
Let me know how it goes.
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Hi Mag ,
I will let know for sure.
Thank you again for all your support.
I would also be here all the time following all the postings.
You guys are my best friends(I don't know to use another word here because I feel you all so close), advisor and a place where I could be opened at the time that I couldn't tell anybody how I was.
I even didn't tell my sister,nor my brother because I didn't want to spoil anybodies holidays.
You are my close friends:)
I will let you know when I will have any news
Lost
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Hi all.  I have a dumb question.   Unless I dreamed it, it seems like when I was on here a couple of days ago, somewhere on the Medhelp site, that I read a link to some foundation that helped with high medication co-pays?  Someone posted it, but I can't seem to find it.  Did anybody else see the link that I'm talking about and if so, can you either send it to me by PM or repost it?  I seriously don't think I dreamed it?

Susan400
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1815939 tn?1377995399
Here's a link to a post that Can-do-man made concerning financial assistance for the new drugs:

http://www.medhelp.org/posts/Hepatitis-C/US-Patient-Assistance-Program-/show/2058689#post_9746446
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Hi all

I just received my 24 week EOT results and I'm still SVR, which is great news.

Reminder: treatment naive, 12 week sofosbuvir+ledapisvir with ribavirin - G1b.
Hep C - 30 years

Signed up for 3 year follow up study - checked out every 6 months.

Would recommend these trials/drugs if you can get them.

best to all
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CONGRATULATIONS...  I go for my 24 week eot March 14...definitely feeling better than i have felt in years, more energy, etc...

Enjoy your life now being SVR!!  We all were so lucky!
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thank you. I'm sure you will be fine too. As far as I can make out, relapses are occurring at an earlier stage - 4 week EOT, so it's looking good for you and 95.4% or so of everyone else!.

Yes, we were so lucky, especially now that sofosbuvir alone will cost $1 a pill. In the UK, it is available now if you have a spare $55k to pay privately for a 3 month course of treatment. The health service and various authorities (our system is different to yours - public health services free because we pay taxes for that) will probably fast track it for use in cases where it's life or death. It certainly won't be available for everyone for some time. And given the silent nature of hep C patients here, I doubt if they will fight for it. Very much a stigma here and for every ten diagnosed hep C sufferers, there is an estimated 5 who are still undiagnosed.

I'm not feeling a massive difference yet in well-being but I guess that will happen over time. After living with a virus for 30 years, it seems to be taking time to recover fully. I had expected to feel like a new woman, but that hasn't happened - yet.

all the very best to you

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Just want to say I was the same. I did not immediately feel like a new woman either and I was clear of the virus but my numbers were not normal at the end of treatment. My enzymes were still a bit high but way lower than when I had hepc and my platelets were still a bit low also. But each check up they are better and better. So you are right, it is not an immediate noticeable effect. But to feel better I eat healthy, take supplements for my liver and immune system and exercise (yoga and walking do it for me.)
So glad to hear everyone is doing so well and we are lucky to have been able to participate in this trial. May you all have a healthy, happy life after hepc.
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thanks Renee.

My enzyme numbers have been normal since week 4 of tx  - my gut is still not back to normal but has improved since we last communicated.

Yes, it's all gradual.

Keep in touch with your progress.

G x

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Hi Renee ,

What supplements do you take for the liver?  Glad to see everyone doing so well here now and that we are done and moving forward.  Sometimes I drink warm lemon water too for my liver, although it is supposed to be first thing in the morning, I don't do it that way, I need my coffee first thing!

Stay well,

Patty
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Hi all, I just received my 'undetected' at 12 weeks post treatment email. so happy. I am a 1a, stage 2. I was in the  SOF 400 mg + GS-5816 25 mg + RBV (1000 or 1200 mg/day in a divided daily dose) trial.
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180992 tn?1383377657
Such great news for you!! Congrats.
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Congratulations.
Welcome to the club!
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hi Renee543,
My mother have hepatitis C , b1 genotype.
and now she is 63 years old , she live in cambodia in asia.
She want to treat that disease, may u tell me which country should she fly to and what drug will be use with her ?
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