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Yaahhoooooooo !!!!!!!
Congratulations man, what a wonderful news, hey !?
Enjoy the life free of HCV !!!
RHF
In case it helps in making a time estimation for this translation work: translating it in the Romanian language was something that I made across 8 days, 1 hour during the morning coffee and 1-1.5 hours during the evening tea. It was a pleasant way to start and end the day
. I started first without the transcript and I was quite slow, but afterwards it went much faster when I was having the transcript.
A headset might help, especially when cross checking the translation at the end.Cheers,
RHF
I’ve been trying to find whether there are any news about this topic today, no luck so far …..
Hi Meg,
CONGRATULATIONS! That’s an excellent news!
I guess now it is the right time for a Samba
Cheers,
RHF
”James-Freeman-facebook” wrote:So you’ve taken the pills and the last one is down the hatch.
You now enter the stressful time when we have to wait and see if the response is durable – SVR
Over the first few days the medications rapidly wash out of your system (except Riba which is slow). Sofosbuvir’s active metabolite – GS-331007 – has a half life of 24 hours, for daclatasvir it is 12 hours, and for Ledipasvir it is 48 hours. The half life is the time taken for your body to get rid of 1/2 the current quantity it contains.
Across days 1-7 the levels of the active Sofosbuvir metabolite GS-331007 reduce by half every day so you have 1/2, 1/4, 1/8, 1/16, 1/32, 1/64, 1/128 etc
So by the end of 7 days off treatment you have 1/128th as much (~ 1%) as you did at EOT. For daclatasvir you reach that point in 3.5 days and for ledipasvir 14 days due the difference in wash out rates (1/2 life).
Most medications have side effects of some description so it’s reasonable to assume these will dissipate. Mental side effects can range from high to low – consider alcohol – it can be pretty good while taking it and pretty bad after. Anyway over time we get to the point where there is effectively no medication left in your system and therefore no side effects relating to it being there.
Within a couple of weeks at the most there will not be enough medication left in your system to suppress viral replication so the virus will grow back. The incubation period for a new infection is 2 weeks to 6 months with 6-9 weeks being average, thus the use of SVR12 – 3 weeks washout, 9 weeks to grow.
That said the experience from trials like:
http://www.ncbi.nlm.nih.gov/pubmed/25314116
http://www.natap.org/2013/AASLD/AASLD_26.htmindicate the the vast majority of patients with SVR4 (~98%) will also go on to SVR12 and SVR24 (we are seeing this as well)
So the shortest wait time is 4 weeks post treatment to get a good idea about ultimate cure.
PCR is expensive and if you were in the vast majority with elevated ALT at baseline relapse will show up as an out of range elevated ALT days before the PCR is availabke so the “poor man’s SVR4” is just to do an ALT and save the PCR for 12 weeks.
Being anxious during this period is normal. Checking your ALT (remember it’s OUT OF RANGE not a tiny blip up) may help, but then again a tiny blip up (normal) may worry you for no reason. There are a few people at SVR who worried about the usual wandering up and down of ALT.
Anyway here’s the sunscreen song…..
[video]https://www.youtube.com/watch?v=MQlJ3vOp6nI[/video]
Oh men, another good post that I missed to read when the time was right for me to know this
….
”James-Freeman-facebook” wrote:I received this message:
Hello James, I have received my medications but why am i afraid to start them?
I’m posting this because it is actually quite common.
I had one patient’s family ring me. He was in hospital having had ascites drained. They had the medications to hand but had been delaying giving them. I insisted they go to the hospital and give them. The patient in question, some 2 weeks ago had a MELD score indicating a 20% 3 month mortality. Things have got better and this risk is now reduced to 6%. Still not great but much better.
For this patient the future looked like a game of Russian roulette with 5 bullets and 1 empty chamber. On treatment it looks like 1 bullet and 5 empty chambers.
I know which game I would prefer.
Fear of the unknown is an instinctive response designed to keep us safe. This website exists in part to help reduce that fear that bad things will happen taking generics. We don’t censor anything other than spam, so what you’re reading is everything everyone is saying.
These medications do have risks with an approximate 1:5000 death rate on treatment, and a 1:100 rate of significant side effects.
The off treatment death rate is 1:10 and the chronic HCV effects are well known and impact > 1:2 – fatigue, brain fog, depression, loss of hope, fear of infecting others….
I know which set of odds I would prefer.
There is a phenomenon called Stockholm Syndrome where hostages start to feel empathy for their captors. Like it or not HCV has become part of your identity and for some people there will curiously be a sense of loss when they get cured.
The treatment experience is usually nothing short of miraculous with 3 days of feeling slightly under the weather (like a hangover or the beginning of influenza) and then within a week feeling better than in 20 years.
These medicines are possibly the best development since penicillin where people who were going to die miraculously got better.
If you have your medications but are afraid to start consider this. Brave you of several weeks ago decided to take a leap of faith. Scared you today is second guessing brave you.
Listen to brave you. He or she knew best.
Get a glass of water, open the bottles, and take the medicine.
The only thing standing between you and a better life is fear.
Don’t let it.
I missed to read this thread before starting my treatment
illy:' />. It does answer to so many questions I had at that time.
The only thing I can say now is: “Better later than never”
Hi Gaj & Splitdog,
reading your posts, I see things are a little bit mixed… Perhaps we should look on the mission a company has on the market.
I struggle my head to find the proper English word for a person who wins a battle, collect the laurels, but is not winning the war (neither willing to fight that war)…. So, Gilead through a smart acquisition some years ago bought the company who invented Sofosbuvir and now holds the patent which is a cash machine.
Having drug combinations (SOF+LED, SOF+VEL) that are effective against HCV means that G. has won a battle [HCV can be defeated]. BUT they did not won the war against HCV….. To really win this war against the hepatitis C virus, you need to have “soldiers” (patients, doctors, etc) equipped with efficient weapons (e.g. Sofosbuvir based treatments) deployed on ALL battlefields where the enemy is (all over the world where HCV patients exists).
But, if you look at Gilead’s company description, you will see that winning the war against HCV is not their focus:
“Advancing Therapeutics, Improving Lives
Gilead Sciences, Inc. is a research-based biopharmaceutical company that discovers, develops and commercializes innovative medicines in areas of unmet medical need. We strive to transform and simplify care for people with life-threatening illnesses around the world. Gilead’s portfolio of products and pipeline of investigational drugs includes treatments for HIV/AIDS, liver diseases, cancer, inflammatory and respiratory diseases, and cardiovascular conditions.Our portfolio of marketed products includes a number of category firsts, including complete treatment regimens for HIV infection available in a once-daily single pill and the first oral antiretroviral pill available to reduce the risk of acquiring HIV infection in certain high-risk adults.
Strength Through PartnershipCollaborations of all kinds – with partners in science, academia, business and local communities – are central to our work. Partnerships enhance our ability to develop innovative medicines and deliver them to people as efficiently as possible.
Growing Worldwide Reach
Gilead was founded in 1987 in Foster City, California. Since then, we have grown to become one of the world’s largest biopharmaceutical companies, with 8,000 employees across six continents.”So, in my English, this sounds like : I want to make “weapons” against life-threatening illnesses and let others fight the war (see “Strengh through partnerships”
, especially that the drugs can be replicated. And because of the patent laws, one can add “…. when I made already enough money out of it”.
And this is a purely business (or better say profit based) approach, which does not necessarily require neither imply passion or vision to see the sick patients all over the world being cured. Just inventing an effective medicine, being proud of this, making money, then moving to a next medicine which should produce further money, and so on…By compare, the mission of Natco company is “Making specialty medicines accessible to all”. Or Cipla’s goal “to ensure that no patient shall be denied access to high quality & affordable medicine and support.” and the list could continue.
By this compare one can better see the difference between Gilead and generic drugs manufacturers. We might even call it paradox. Also to be mentioned here is the questionable aspect related to the usage of public knowledge.And this is why we saw recently the Sofosbuvir patent challenge being made by Doctors of the World , I-Mak, etc. as the current settlements for protecting and stimulating R&D leads to such situations of paradox that in the end …. leaves people die.
P.S. I do agree that my view is excluding perhaps other relevant data about Gilead and that it may be biased, however not seeing the mass treatment of HCV patients being worldwide deployed … well I believe my opinion stands.
Cheers,
RHF
Hi Wair,
firstly, welcome to the forum
.
And congratulations for having taken the very good decision to get treated.
As you already experienced, the side effects are minimal, so do not worry about the slight insomnia. (if allowed a small joke: you have more time to read a good book, see a nice movie )
You will see that 12 weeks will pass very fast (and if it will be the case for another 12, it will pass also fast).wair wrote:Hi guys,
greetings from Estonia.
…..
I think the hardest part now is trying to keep my excitement to myself. For many reasons there are very very few people who know about my disease at all, so therefore the treatment has to be similar secret, at least for now.So thank you to all the people in this forum – even if you are not aware, then there are those silent “lurkers” here who take courage when reading about your paths!
Without you I would not be where I am now.Here you will find the proper place to share as much happiness you wish
Have a nice journey till the finish line (SVR12) !
Cheers,
RHF
Hi Gaj,
I have to admit I felt a little bit puzzled after reading it.
The first thought that came into my mind was
Are they kidding me? So many studies just to say that “healthy people feel better than sick sick people”????
ick:' /> The second thought however made me realise that perhaps by getting treated this year and not next year or the next 2-10-20 years, I might have gained some weeks, months or perhaps years more to live than if I would not have treated me. And the studies may sustain this thought.
I believe this research should be forwarded to many doctors who still advise patients to wait instead of showing them the opportunity to get treated now with generics.
Thank you for sharing it,
Cheers,
RHF
