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CatD
@cldreif330

Posts: 6
Joined: May 31, 2015

Beware! Harvoni for Adolescents - Hep C

Posted by @cldreif330, Apr 9, 2017

The FDA has recently approved Harvoni for Adolescents. I personally believe this is a horrible move. Harvoni has injured many as outlined in the FDA’s own adverse events reports. The FDA is not reporting this and doctors seem to be very uninformed. This direct acting antiviral can change a person’s DNA and does with unknown consequences. There are many adults who are now bedridden, in constant pain (me), have swollen and painful joints, have lost hair (me), have liver cancer, have died, are suicidal, have rashes, have tinnitus (me), constant headache(me), breathing issues(me), heart problems, just to name a few. I know this as I am an advocate for those who have taken Harvoni and have lost their quality of life as a result and have spoken directly to these patients. Giving Harvoni to a developing young adult is absolutely ridiculous. Parents, do your homework BEFORE you even think about providing this drug to your child. It is possible you may be condemning them to a long and painful life. Hep C is NOT an automatic death sentence!!! I had it for 40 years with very little liver damage and excellent bloodwork. I was talked into taking it by my GI who told me it was absolutely safe. After two visits to the ER and now two years post treatment and in constant pain, apparently it is not safe for all. And this drug was rushed into approval with very little testing.

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REPLY

Hi Cat,
This sounds like a horrible outcome of treatment. What led to your getting treatment after 40 years of living with Hep C? Were symptoms increasing?

We took your message to a Mayo Clinic pharmacist and she offered this information.

“Harvoni is not for every patient with HCV infection and is only indicated in certain adolescent patients. Nearly 1/3 of patients do experience weakness or lack of energy. Other common side effects were headache 29%, muscle aches 9%, irritability 8%, nausea/diarrhea 3-9%, dizziness and cough 5%, dyspnea 3%. Less than 5% of patient experience depression (more common in patients with pre-existing psychiatric illness). Suicidal ideation and suicide occurred in less than 1% of subjects treated with sofosbuvir and ribavirin in other clinical trials. The major cardiac issue is the risk of slowed heart rate in patients also taking amiodarone which is not recommended except under certain careful monitoring conditions.

American Association for the Study of Liver Diseases strongly recommends treatment for nearly all HCV-infected patients. Patients with cirrhosis who no longer have the hep c virus after treatment have increased survival compared with patients with cirrhosis who are untreated or in whom treatment fails. They may still be at some risk for liver cancer and should continue to undergo regular surveillance despite the lowered risk that results after treatment. Removing the virus typically stops progression of liver injury with improvement in fibrosis most but not all treated patients. Patients who are virus-free after treatment who have another potential cause of liver disease (like excess alcohol use) remain at risk for progression of fibrosis. Other benefits of treatment include reduced liver inflammation, improvement of portal hypertension and splenomegaly and in nearly half of patients resolution of cirrhosis. Treatment of HCV infection may improve or prevent complications outside of the liver, including diabetes, cardiovascular disease, kidney disease, and B-cell non-Hodgkins lymphoma. Treatment that eliminated hepatitis C virus from the body also prevents transmission of the virus.

Of course, infection with the hepatitis C virus can cause tiredness, upset stomach and joint pain before it results in liver disease, liver failure, liver cancer, etc. Everyone with hepatitis C virus infection should be considered for treatment because what we know now is that for most patients the benefits outweigh the risks. You can find more information at http://www.mayoclinic.org/diseases-conditions/hepatitis-c/home/ovc-20207365.”

Cat,
I simply cannot imagine living with the ongoing side effects that you manage daily. How do you manage your pain, headaches and breathing issues?

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