What Emilio said www.hepatitisc.uw.edu/pdf/treatment-infe...e-1/core-concept/all

Hi Jo

This is the right treatment for you, some are opting out of the riba. However, based on what I know and in relation to your fibrosis and tx experience, this is spot on for you. I've heard others say this and believe there are so old outdated recommendations floating about. 3 weeks in hey, I'm thinking you'd be clear or there abouts. Good luck and relax hey. Em

Yes Lynne, what Joy says is correct. Sof/led has a larger trial base. These are the recommendations from the last EASL conference for treatments for the various genotypes (note the document may not render properly on tablets):

www.easl.eu/medias/cpg/HEPC-2015/Summary.pdf

I'm also 1b and on Sof/dac/Ribavirin. RIBA because of borderline cirrhosis and dac because led wasn't available when I started and I was able to get dac under compassionate access. Frankly, I'd have been perfectly happy with any of the 4 options recommended for 1b. We are now the easiest genotype to cure. The results for both dac and led for 1b's are so close to 100% we really shouldn't waste any energy stressing about the risk of failure (but of course we all do any way!) The fact your disease has not advanced too far gives you even more reason to be extremely confident that at the end of treatment you will be cured.

Hi Lynne,

Welcome to the club, how exciting that you've made the decision to go ahead. I'm genotype 1b as well, and taking Sof/Dac. Sof/Led is also used for our genotype and from memory has had a larger trial base. More info under 'Getting Treated' above - 'Genotype Specific Requirements'.

All the best with your treatment. Keep us posted.

Hi Lynne
, I'm HCV 3. No fibrosis so i'm Sof/Dac for 12 weeks. I can't speak for Ledipasvir.
I was very anxious when I started treatment. It was hard to believe it was real. But it is, and you will be feeling more confident as the days follow on and especially when you get your next round of test results.
All the best.

Hello everyone

I will start my treatment this Friday (have arranged a week off work next week to see how it all goes)! I have noticed that mostly people on the Forum speak of taking Sof/Dac. I will be taking Sof/Ledipasvir. Is it because of the genotype you are and if there is liver damage etc. that the other combination is prescribed for me? I'm sure it is right, because of course Dr Freeman prescribed it for me however I was just wondering if anyone knew what the different meds were. My liver function, and fibroscan were both good news and I am genotype 1b with viral load of 3.13 million. These tests were done back in February and April respectively.

Trepidation and excitement are setting in today....I have taken Joan's advice and am just rolling with the feelings at the moment.

Lynne

In that case, we all should continue being monitored while on the treatment to note any possible side effects.
Drug companies store away a lot of money for pay outs of undisclosed side effects once they start treating the masses. there are records of many court cases of such events.
At my last visit to the Geelong Liver clinic the registrar said, it was impossible to really know of any life threatening side effects until millions of people were taking these new drugs. I thought she was a bit of a kill joy, but she had a point.

Exactly how I felt Jolie.

So this is really interesting:

news.sciencemag.org/health/2015/10/study...eek-hepatitis-c-cure

But it throws the notion of patient selection for trial entry into stark relief. See LB-23 here:

www.aasld.org/sites/default/files/TLM-20...reakingAbstracts.pdf

26 subjects with GT 1b (the easiest to treat) started, then the 18 with exceptional RVR were put into the trial.

It makes for a great headline, but it's worth noting that 8/26 were excluded and just did usual treatment length treatment.

When reading trial data it's important to read the fine print before deciding if the treatment population was a good match for your genetics and genotype.

Jolie wrote: from the article:

"Sovaldi was found to abnormally reduce heart rate in three out of 415 patients treated in the hospital last year.
All three patients had to be given a pacemaker within a week of treatment to keep their heart rates normal.
In March, Gilead issued an advisory warning against the use of Sovaldi with another anti-viral drug and amiodarone.
Gilead spokeswoman Cara Miller said in a statement: “It is important to note that sofosbuvir alone is not associated with cardiac conduction abnormalities.” She further pointed out that no complications were noted in patients taking Sovaldi in combination with ribavirin, a famous aging HCV drug."

anyone here on tx noticed any heart beat abnormalities?? & or is being monitored for heart problems by their doctors ?

Thats a very low sample size to make that recommendation and no info on how old or sick the any of the 3 were. They seem to be blaming the Daclatasfir not the Sofosbuvir so the article is misleading I think. The FDA sheds more light on the subject www.fda.gov/Drugs/DrugSafety/ucm439484.htm and it appears that amiodarone is the culprit. This is a drug taken to regulate heart rhythm and the warning is to not take this drug with Sof and Dac.

If Gilead could knock BMS out of the game they could potentially make more profit. No where in the FDA article did it apportion any blame on Daclatasfir (bms) yet that inference was drawn by Gilead spokesman.

cheers

All of those symptoms sound like the 'usual' viral symptoms one gets with a flu. I also believe they are like a poisoning in the body. Whether it is the virus or the drug who knows but something major is going on.

On day 7 or so of my Sof/Dac treatment I developed severe joint pain and could barely walk or even sit up. That all passed after about 4 days, and since that time just one knee has remained active (on week 9 now) I have had no joint pain in my body to speak of up till then.

Enkel wrote: I think with riba and ledipasvir is safe

how do you know that?
Doc James said: "There is no such thing as a 100% safe medical treatment".
Not even the meds we can buy over the counter are 100% safe.
It is always the question of what is more riskier living with HCV ? or treating with new DAA\s that only been around for a few months.
The statistics say living with HCV is more riskier then treating it with risky new meds, so personally am going to take the risk & treat it.

from the article:
"Given that Gilead’s most successful hepatitis C product, Harvoni, is a nuanced version of Sovaldi itself, it is safe to assume that the toxicity risks apply to it as well. "

I think with riba and ledipasvir is safe

from the article:

"Sovaldi was found to abnormally reduce heart rate in three out of 415 patients treated in the hospital last year.
All three patients had to be given a pacemaker within a week of treatment to keep their heart rates normal.
In March, Gilead issued an advisory warning against the use of Sovaldi with another anti-viral drug and amiodarone.
Gilead spokeswoman Cara Miller said in a statement: “It is important to note that sofosbuvir alone is not associated with cardiac conduction abnormalities.” She further pointed out that no complications were noted in patients taking Sovaldi in combination with ribavirin, a famous aging HCV drug."

anyone here on tx noticed any heart beat abnormalities?? & or is being monitored for heart problems by their doctors ?

Interesting about the virus talking longer to eradicate from the brain. I have been reading about the Ebola nurse who is in the Royal Free in London. They eradicated the virus, she went back to her usual life then became ill again and readmitted to the Royal Free, Yesterday I read, that the Ebola isn't back, but she has contracted Meningitis. Their theory is that a few stray Ebola virus' remaining in her brain caused this. Thankfully, she is on the mend again now , although the Drs say she sill be with them for a long time yet before she is well again.