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Avatar universal

more damage than good, why keep it up? wheres the humanity?

When are the people setting on thier fat wallets going to wake up and see the long term and acute damage from allowing this treastment to continue and put a stop to it. It seems to have done more damage than good and very few patients were successful or it took thier lives from them, many of us were lied to and during the tests and checkups during treatment most were never told the true results, this treatment nearly took my life and it has left me with many problems that I never had before, what the hell is wrong with a country that allows drugs so toxic to be used knowing the outcome to be worse than the problem? I will only hope to get my old self back, where is the fda?
20 Responses
3097131 tn?1357088481
Which treatment was you on?
Avatar universal
Sorry to hear of your problems with HCV treatment ,however many do not have these aftereffects and the therapies today are approx. 70 -80 % successful .which has helped many stave off ESLD and death.

Best of luck

Will
Avatar universal
Hi, Pegasys and copegasus {interferon alpha a} for the 6 month term, only made it to the 5th month and they wouldnt listen when I told them I felt like I was dying, High fevers up to 104.3 every day since third month into it. Hives and other rashes, I wont bore you with the rest, they did refuse to take me off  of it or lower dose. I ended up in hospital in near critical condition on surgery watch. I have genotype 2, I was hopeful.
Avatar universal
will, thank you but even though I knew that there were side affects that would be severe or could in some people I found out that all the test results were not correct, they fudged all the reports and tests and we found out later about that, I never even knew I had a problem until I went to the hospital weeks earlier and it was only low thyroid mimicing angina. I was given a copy of my test results etc., and thats when I read all these pages about hcv and possible chirosis (first stage), liver enzymes in the4 hundreds and distended gallblader with stones, distended spleen and pancreas, liver was normal in size, just some small scarring. plateslets were 40,000. I was sent to emory transplant clinic. I have not heard one positive intrferon treatment yet. thats my beef about it.
Avatar universal
I was put on interferon alpha a other wise known as pegasys and copegasus for the 6 month series.
3097131 tn?1357088481
So you were on Ribavirin and Peg INF? I was on it too with a inhibitor though..

How long ago was it that you treated?
1747881 tn?1546179478
"I have not heard one positive interferon treatment yet"

http://www.medhelp.org/forums/search/76?utf8=%26%23x2713%3B&query=SVR
3097131 tn?1357088481
I wish these Forums had a Like button! Thank you for that forum site.

Country
96938 tn?1189803458
"they did refuse to take me off  of it or lower dose".  Hey, you took the shots and swallowed the pills and got all the warnings packaged with the meds as required by the FDA.
Avatar universal
  If you had "just some scarring and platelets were 40,000", then it sounds like early cirrhosis, because of how low your platelets were.
  People with cirrhosis have worse side effects, during this Treatment, often times. Your Doctors were trying to rid you of Hep C, before it did you more damage, as in "decompensated cirrhosis" which presents with symptoms such as "ascites" (fluid in the abdomen, thatis supposed to be in the liver, but leaks out, beause the liver cant deal with filteringit, becuz of the scarring. These misplaced fluids can get easily infected, and this sis a serious and sometimes fatal condition. The other bad symptom of cirrhosis is "varices"...this is when the veins in your body have too much pressure (again, because the blood cant flow freely thru your liver/filter) and then these large veins burst, in the esophugus, or other places in the body.
   The Doctors have to weigh the out-comes. They felt it was better to take the risk, of the Interferon side effects, to prevent you from going thru decompensated cirrhosis.
  Did you get rid of the Hep C? If not, there is a new, Interferon Free Treatment, coming in the near future (2~5 yrs) he main thing now, is for you to avoid alcohol, and eat healthy diet, healthy life style, until the easier Treatment arrives. Also, all drugs are toxic to the liver, even Ibuprofen. Be careful what meds you use, always look up if they are toxic to the liver, etc
  
1815939 tn?1377995399
""ascites" (fluid in the abdomen, thatis supposed to be in the liver, but leaks out, beause the liver cant deal with filteringit, becuz of the scarring. "
-------------------------------------------------

Ascites does NOT come from fluid leaking out of the liver and into the abdomen.

How Does Liver Disease Cause Ascites?
"Ascites is caused by many diseases, including liver disease, congestive heart failure, nephritis, infection and cancer, to name some of the most common. One of the complications of cirrhosis, a disease caused by chronic hepatitis, is portal hypertension which is an increase of pressure in the portal vein system. One of the functions of the liver is to remove certain kinds of wastes from the body's blood supply which can pass through your liver every five minutes. The liver is supplied by blood from the heart through the hepatic artery and by blood from the gut (the digestive system) and pancreas through the portal vein. When cirrhosis develops, the portal vein system cannot filter effectively through the cirrhotic and nodular liver which results in increased pressure of the blood flowing from the digestive system. This increased pressure forces fluid (made up of water and proteins) out of the blood vessels which collects in the abdominal cavity."

http://hepatitis.about.com/od/complications/a/Ascites.htm
1815939 tn?1377995399
"The other bad symptom of cirrhosis is "varices"...this is when the veins in your body have too much pressure (again, because the blood cant flow freely thru your liver/filter) and then these large veins burst, in the esophugus, or other places in the body. "
---------------------------------------------------
The "varices," the enlarged veins which may burst, are located in the esophagus and upper stomach

Cirrhosis can cause many serious complications including:

"Variceal hemorrhage, severe bleeding from varices (enlarged veins in the esophagus and upper stomach)"

Altered Blood and Bile Flow. The changes in blood and bile flow have significant consequences, with both the liver and other organs responding to the altered flow: .....

    The small blood vessels and bile ducts in the liver itself, however, narrow (constrict). (Blood vessels in other organs, including the kidney, also narrow.)
    Blood flow coming from the intestine into the liver is slowed by the narrow blood vessels. It backs up through the portal vein and seeks other routes.
    Enlarged, abnormally twisted and swollen veins called varices form in the stomach and lower part of the esophagus in order to compensate for the backup blood.  ....."
1815939 tn?1377995399
Link to above data:

http://adam.about.net/reports/Cirrhosis.htm
163305 tn?1333672171
When I was diagnosed I had decompensated cirrhosis, End Stage Liver Disease.
I did the treatment, which was very difficult,  relapsed and needed a liver transplant.

Since the transplant doesn't get rid of the virus I did treatment again 2 1/2 years after my transplant.
After a transplant, cirrhosis can set in causing the need for another transplant within 5 years.
This time treatment worked. It was much easier than last time.
Like you, I was genotype 2 and guess what ?
I feel great !

Interferon treatment can be very hard, and is much harder when you already have cirrhosis, like you do.

However, as hep C now kills more people than AIDs, and is responsible for most liver cancer and liver transplants in the US, there is plenty of good reason to do the treatment.
446474 tn?1446351282
I am sorry you had a bad experience with treatment. All treatments have some level of risk. I am sorry you had such a bad experience with treatment. Everyone is unique and can respond to any drug or drugs differently and all medical interventions have some level of risk. It is up to the patient and the doctor to discuss the benefit vs. risk for any serious illness.

Apparently you are misinformed about hepatitis C and its treatment and how many lives it has saved and is saving every day. Unfortunately treatment still isn't a 100% cure for everyone. For many of those patients that can't be cured, their liver disease progresses and they can develop cirrhosis and eventually liver failure or liver cancer, both which are fatal diseases unless the person is able to get a life-saving liver transplant in time.

You say "It seems to have done more damage than good and very few patients were successful or it took thier lives from them"
Please post links of medical data that shows that more people die from treatment than from liver disease and liver cancer?

"Where was the FDA?"
Did you read the FDA warnings that come with the treatment drugs???

Cheers!
Hector
446474 tn?1446351282
IMPORTANT SAFETY INFORMATION - only some

Boxed WARNINGS

"PEGASYS, like other alpha interferons, may cause or make fatal or life-threatening problems worse (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In many patients, but not all, these conditions get better after they stop taking PEGASYS (see the Medication Guide for more information and Warnings).

COPEGUS can cause birth defects and/or death to an unborn baby. Female patients and the female partners of male patients should avoid getting pregnant. Ribavirin is known to cause anemia (low red blood cells), which can make heart disease worse (see the COPEGUS Medication Guide for more information and Warnings).

What is the most important information I should know about PEGASYS alone or in combination with ribavirin?

Ribavirin in combination with PEGASYS may cause birth defects or death of your unborn baby.

Mental health problems and suicide.

New or worsening autoimmune problems. Some people taking PEGASYS develop autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body), such as rheumatoid arthritis, lupus, and psoriasis.

Infections. Some people who take PEGASYS may get an infection.

PEGASYS alone or in combination with ribavirin can cause serious side effects. Some of these side effects may cause death. Tell your healthcare provider right away if you have any of these symptoms while taking."

Hector
2061362 tn?1353283118
I'm sorry you had a bad experience, but not sure where you're getting your info from. I'm not sure how you could have been lied to about sx and complications of treatment. It is in black and white all over the internet and in product pamplets. Also I'm not sure how anyone can force you into treatment or prevent you from discontinuing it. Most importantly, if there were no one cured, no one would treat, but as yo can see many people are in fact treating. This treatment has cured many and continues to do so; without it some would not be here to discuss it. Good luck to you.
1477908 tn?1349571310
I am sorry, too that you had such a bad experience. These aren't meds to take lightly and the complications are be very difficult, but there are many positive ( or negative, depending on how you look at it) responses, even with the dastardly interferon in the mix.

I went into tx a Stage 4 cirrhotic, did the long haul, had an extended recovery time (18 months tx/18 months recovery) but it got the job done! Two 1/2 years post treatment, life is awesome, and I am so glad I stuck it out.

My Dr. was very upfront about the side effects and potential dangers, but she also outlined the steps they'd take to manage them, including a transplant if my liver decomped from the stress of the meds. For every adverse event, there was a potential solution. So very scary going into it, reading all the literature that came with the meds, Interferon, Riba, Procrit - black box warnings and all. It's not a risk to be taken lightly, but I think it's one worth taking - with the right mindset and support. I for one, doubt I'd still be around today without tx - or life would be severely compromised by this point.

Just wanted to share a voice from the other side of the fence for balance......Peace, Pam

Avatar universal
hepatitis C has been reported to be at 6.5%.1 Portal hypertension is an important complication of cirrhosis and manifests as
ascites, edema, esophageal varices and rectal varices. Variceal
hemorrhage from esophagus is a life-threatening complication
of portal hypertension with 30% mortality in the first bleed
and with  early re-bleeding occurring in 30-50% of patients.2

  Just a quick reminder that, although less common, rectal varices can also present.  Bottem line (no pun intended) is any "bleeding out" experienced by a Hep patient with cirhossis, warrants a visit to the E.R.
     With cirrhosis, each symprom needs to be treated as it comes along~
    
163305 tn?1333672171
I'm not Pooh, who is a retired nurse and far more knowledgable than I am.

I'm just a post transplant patient who had decomepensated cirrhosis, portal hypertension and landed up with my portal vein being entirely occluded.
I never had varicies on either end, and only got edema on long airplane flights, lucky I guess.

What does this mean?
"hepatitis C has been reported to be at 6.5%.1 Portal hypertension is an important complication of cirrhosis and manifests as
ascites, edema, esophageal varices and rectal varices"

Yes, portal hypertension is a complication of cirrhosis but what do you mean it manifests as these other side effects of cirrhosis ? I don't understand.
Can you explain ?
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