Simeprevir deaths?

[Sarah1949]

Have you all heard about the three deaths in Japan attributed to Simeprevir Sodium? Do you think this is the same as the Simeprevir (Olysio) here in the States?

"According to the Ministry of Health, Labor and Welfare, taking the drug will increase "bilirubin" by decomposing hemoglobin in the blood and may aggravate dysfunction of the liver and kidney."

http://www.globalpost.com/dispatch/news/kyodo-news-international/141024/3-die-after-being-administered-hepatitis-c-drug

[HopeInPA]

scottie24, but have you tried fasting? I believe, fasting 24-36h once a week, every week if possible, will help a post-treatment syndrome like you have been experiencing. This situation has to do with epigenetic changes that strong drugs like interferon and rivavirin can induce, especially if they are taken long term --- and for the rest of us, on the newer SOC, it's worth remembering that, even though they significantly cut the length of treatment, drugs like Sovaldi or Olysio are known to mess up mitochondria; and mitochondria toxicity can leave an array of lingering problems of its own.

After adopting this sort of weekly 24-36h fasts and becoming comfortable with them, one can try a longer fast. Long-term fasting, when done right, will reboot the immune system, get rid of autoimmune issues, clean up the cells from junk, fix mitochondria -- in short, rejuvenate.

However, those who have not yet achieved their SVR should NOT fast more than 24-36h once weekly, because HCV exploits the cell repair mechanisms that are activated during a long-term fast for its own replication (this leads to increase in viral load).


Now that I have completed the treatment and got my SVR 12 weeks EOT,  I'm planning to fast to get rid of the lingering issues left by the treatment. You may want to consider doing it, too. If so, make sure to start with once-weekly short fasts and proceed very slowly.  

[Sarah1949]

Scott, actually I was only speaking for myself. I've had hcv for around 40 years and cirrhosis for a few, at least 2-3. I never seriously considered tx until this year. I never have, and still don't, trust these drugs but I'm out of waiting time.

[hepcandme]

Well, that depends on how sick you are Scott

Most of us Did live with HCV for many years - decades even. And then HCV took over our health and our lives

We are here because we are sick and some are quite ill. It's not like thinking about getting a nose job. For us, it really is a matter of life and death.

Many of us feel sick all the time. HCV has affected our lives immeasurably and for those whose livers have been severely damaged by Hep C, there are no options but a liver transplant

And for those lucky enough to receive a transplant, unless they are also cleared of HCV, the virus attacks their new livers!

http://www.liverfoundation.org/patients/organdonor/about/

So, for those whose lives and the lives of those who love us, this is critical and we feel overjoyed that finally there are treatments that will cure us

We're not gullible, we are looking for a cure

[scottie24]

"…  to me unless I get rid of the hcv then I will die from the hcv."

The corporate marketing teams get an A+!!!!


In reality, the odds of dying from untreated Hep C are very low, especially if you maintain proper body weight and live a healthy lifestyle.   Read even the marketing materials for Sovaldi - they now disclose CDC estimates of 1 - 5% max death rate. Other retrospective studies disclose less than 4% rates of cirrhosis in normal body mass index women 35 years after exposure, about 24% in obese women.  These are women who never knew they had it, who drank, partied, etc.  for 35 years.

Cirrhosis does not instantly mean death.  If you're 70 when you finally get cirrhotic, so what?  It doesn't mean your liver is dead. 10 - 15 year life expectancy.  Diabetes or stroke or heart attack or Alzheimers or car wreck or something else gets you first.

I had Hep C and was never scared of it.  Was strong as an ox, healthy, living life, full of stamina.  Got the (now proven false) 70% cure rate pitch for INF / RVN for Genotype 2, and "six months of fatigue."  Pressure fro family. Treated.

I have literally been fighting for my life ever since treatment.  My platelets were 150,000 3 months before treatment.  They have been below 100,000 since, and usually around 80,000.  I have been in the hospital twice and wracked up $125,000 in hospital bills from bizarre septic infections (platelets at 20,000 then - blood oozing from my mouth).  I have had one autoimmune disorder after another, and the latest one (vasculitis) appears that it will either take my leg or my life.  I am praying for remission.  It is terrifying.  All the while trying to keep shelter over my head and food in my belly and not getting despondent.  And I omit a whole slew of terrible other things that I went through between then and now.

I don't where people get this idea that HCV means death.  It's simply not  true  I know you prefaced it with "to me,"  but the statement that "Hep C means death" is used to convince people to treat and it is simply not a true statement and should not ever be taken at face value.

You know, you can go look at Genentech and their job postings and they seek PhD psychologists to help them create marketing campaigns for their drugs.  They have legions of really smart, talented people figuring out how to scare us, and the doctors.

[scottie24]

From the amicus curie brief of former FDA Commissioners Dr. Donald Kennedy and Dr. David Kessler, in the 2013 US Supreme Court case of Mutual Pharmaceutical v. Bartlett:

"In recent years, study after study has documented severe limitations in FDA’s ability to ensure drug safety, as this Court recognized in Wyeth v. Levine, 555 U.S. 555, 578 n.11 (2009). The studies include:

• The Institute of Medicine of the National Academies, Ethical and Scientific Issues in Studying the Safety of Approved Drugs (May 2012);

• Institute of Medicine of the National Academies, The Future of Drug Safety: Promoting and Protecting, the Health of the Public (2007) (“IOM 2007 Report”);

• FDA Science Board, FDA Science and Mission at Risk: A Report of the Subcommittee on Science and Technology (2007) (“FDA Science and Mission at Risk”);

• GAO, Drug Safety: Improvement Needed in FDA’s Postmarket Decision-making and Oversight Process 5 (GAO–06–402, 2006), http:// www. gao. gov/ new. items/ d 06402. Pdf."

[dontworry_behappy1]

In your search did run accross that eastern Asians require a different medication because thier body requires a different treatment of the same thing?   It has to be different because they don't have the same chemical make up.   Just like 40% have a intolerance for alcohol.   Unlike thier western brothers.