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Avatar universal

Long term side effects of interferon

Dear all,

My wife was treated for her HCV in 2001 with interferon plus ribavirin. She was like a guinea pig and now, 8 years after, she is living with side effects that have never gone : hypotension (around 8), fainding every day, unbearable headaches, kidney pyelonephritis every months, and an exhausting fatigue that keep her in her bed sometimes several days, where she can hardly eat alone. Before that, she was so full of life, making car races, flying planes, being a model for photographes, and photographer herself. All the physicians and experts that she met told her that it was impossible to be due to the Interferon treatment, but before the treatment, all went well. She is so exhausted that she can't fight no more against medical community in order to admit the origin of her symptoms and to push them to try to find a beginnning of solution.
Is there any progress in the comprehension of the cause of these symptoms ? Are there some new treatments that appeared recently to counteract exhaustion and pains ? Do people group themselves in associations to better fight against this disaster ? Would you have some testimonies, books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ?
Any information will really be of great help,
With my best regards.
553 Responses
Avatar universal
I have completed my treatment and have tsted neg for Hep C for 10 years.I feel great and have no liver damage. You can choose to trust a handful of people with negative comments to scare you, or you can do as I did, and continue to do in everything in my life....TRUST IN GOD
Avatar universal
That's great!

I'm not sure it means that the benefits to those 2 or 3 out of 100 people saved by interferon is not outweighed by the damage it does (ie - 1 in 5 thyroids fried, %? w/ lasting arthritis, % w/ lasting psoriasis, %? w/ lasting brain fog, %? who commit suicide).  

If one believes that the research (such as that cited by the UCLA doc and the Pegasys rep) has not been skewed by BigPharma's money, one is naive.

At least the FDA is finally requiring drug companies to report payments to doctors.    
Avatar universal

Abstract of study from Poland re: cognitive impairments arising from interferon.
163305 tn?1333672171
Please show where you got the statistics of 2-3 people out of 100.

Avatar universal
That is during treatment, that is also on the info pamphlet for Peg, so no new news there, but you are talking about post treatment, aren't you?  Is there a study that you have seen on that?
Avatar universal
No.  Only calls for them from a few members of the medical community, and anecdotes on MedHelp  of some physicians requiring congnitive assessment  before treatment.  
179856 tn?1333550962
2 or 3 out of 100?  No,please dont report things that certainly are NOT true and are NOT educated intelligent statistics for which you know nothing about. With the new drugs and a 75-80% cure rate for even geno 1, 2 and 3 - can you do the math? How many out of 100 people would that mean were / will be cured?

179856 tn?1333550962
and who said one in 5 thyroids 'fried'?  Where on earth do you get this BS from?
Avatar universal
J Hepatol. 2011 Oct 23. [Epub ahead of print]

Effects of anti-viral therapy and HCV clearance on cerebral metabolism and cognition.

Department of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, United States.

Chronic hepatitis C virus (HCV) infection is associated with altered cerebral metabolism and cognitive dysfunction. We aimed to evaluate the effect of pegylated interferon/ribavirin (PIFN/R) and HCV clearance on cerebral metabolism, and neuropsychological performance.

Fifteen non-cirrhotic HCV positive subjects underwent (1)H MR spectroscopy (MRS) before, during, and after treatment with PIFN/R. The metabolites of interest namely, N-acetylaspartate (NAA), choline (Cho), myo-inositol (MI), and the control metabolite creatine (Cr), were acquired from 3 different brain regions; left basal ganglia, left frontal cortex, and left dorso-lateral pre-frontal cortex. Coinciding with this, subjects also underwent a battery of neuropsychological tests to evaluate the domains of verbal learning, memory, attention, language, executive functioning, and motor skills. Seven HCV positive controls (not receiving anti-viral therapy) underwent MRS and neuropsychological testing at two time points, 12weeks apart, to examine for variation in cerebral metabolites over time and the practice effect of repeat neuropsychological testing.

Significant reductions in basal ganglia Cho/Cr (p=0.03) and basal ganglia MI/Cr (p=0.03) were observed in sustained virological responders (SVRs, n=8), but not non-responders/relapsers (NR/R, n=6), indicative of reduced cerebral infection and/or immune activation in those who cleared virus. SVRs demonstrated significant improvements in verbal learning, memory, and visuo-spatial memory. A small but significant improvement in neurocognitive function secondary to the practice effect was seen in both HCV controls and HCV subjects during treatment.

HCV eradication has a beneficial effect on cerebral metabolism and selective aspects of neurocognitive function and is an important factor when contemplating anti-viral therapy in HCV, especially in those with mild disease.

Avatar universal
Orphanedhawk kindly asked   4 days ago  to please post where you got the stats for  2 -3 % of HCV therapy patients  were SVR?

As well as posting the clinical studies on that ,could you please post the studies that show  " 1 in 5 thyroids fried"  and also all the studiy data on  % of suicides from INF. therapy.


Avatar universal
That arises from CDC's "Information for Physicians," which states that 1% to 5% of people who have Hep C will die from it.  


So as we have a cure rate of 50% to 70%, I guesstimate (validly, if CDC is correct) that treatment saves only 2 or 3 out of 100, at best.  

20 of the 100 will devbelop thyroid disease, I think, based on the recent drug insert warnings.  

Who knows how many of the 100 will suffer permanent or long lasting brain fog / brain injury, psoriasis, arthritis, and other autoimmune disorders?  That is the million dollar question that the FDA has not required BigPharma to answer.  
Avatar universal
You know, I spoke with the help nurse at Roche last week and cited my 50% to 70% figure to her, and sher said, "That's right, depending on genotype."
163305 tn?1333672171
If a cure rate is 50-70% than 50-75 people out of 100 are cured. Simple.

I was told being genotype 2, the cure rate was 80%.
Meaning 80 out of 100 people are cured.

Math isn't my best subject but this is simple.
Please don't scare people with such huge inaccuracies.
Avatar universal
Thank you for the 1 link...

Here is a more up to date one.  I personally  always had slightly more confidence in Medscape than the Gov"t sites.



Cirrhosis develops in 20-50% of patients with chronic hepatitis C infection. Liver failure and hepatocellular carcinoma can eventually result. Hepatocellular carcinoma occurred in 11-19% of patients. The risk of cirrhosis and hepatocellular carcinoma doubles in patients who have undergone transfusion.[6]

Two studies of compensated cirrhosis in the United States and Europe showed that decompensation occurred in 20% of patients and that hepatocellular carcinoma occurred in approximately 10% of patients.[7, 8] The survival rate at 5 and 10 years was 89% and 79%, respectively. The onset of chronic hepatitis C infection early in life often leads to less serious consequences.[9, 10] Hepatitis B virus (HBV) infection, iron overload, and alpha 1-antitrypsin deficiency may play a role in the progression of chronic hepatitis C infection to HCV-related cirrhosis.[11, 12]

Chronic hepatitis C infection and its major sequelae (cirrhosis and hepatoma) are responsible for 8,000-10,000 deaths a year.

Avatar universal
I am sorry, I still don't get your math....

so 1% to 5% will die from Hep c...that means 1-5 out of 100 people will die from Hep C...

50%-70% will be cured with treatment...that means 50-70 out of 100 people will be cured with treatment.

Are you talking about the 1-5% that will die from Hep C?  so if there is a group of 100 people that will die from Hep C, you are saying that treatment will only save a few of those?  which i still don't get the math if that's the case, but maybe it's just over my head....
Avatar universal
95 out of 100 would never have died from the disease and probably didn't need treatment anyway.  2 or 3 at worse out of 100 would have died from the disease after failed treatment.  2 or 3 who would have died were saved.

Why expose the 95 out of 100 to terrible side effects?

“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.


Avatar universal
You know, I spoke with the help nurse at Roche last week and cited my 50% to 70% figure to her, and sher said, "That's right, depending on genotype."

Again..I like Medscape.. Pubmed and Clinical Care Options  for siting data personally...  
179856 tn?1333550962
If you treat with triple therapy a geno1 has a 75% - 80% chance of success rate. That simply means 75 or 80 out of 100. And geno 2 and 3 have always been about 80% cure rate that again means 80 out of 100 people.

Will, I guess they dont figure HCC or Decompenstaed Cirrhosis to be as bad as any possible lingering of interferon (including the fried green thyroids that is).

Hawk my math is TERRIBLE but even I can manage to do this equation ;)

Avatar universal
i would think that the 1-5% that will die from Hep C would be a much higher number if they didn't treat...I think the stats are with people treating or trying to treat...
Avatar universal
Interesting....... about 50 % of people over the age of 50 have a green fried thyroid anyway  irrespective of HCV .so if only 20 % of people on treatment get it I guess treatment is good for the thyroid......if we are doing math like the poster above..
Avatar universal
It's really not known how many people die from HCV. The estimate is that less than 50% of people infected with HCV are diagnosed.
Avatar universal
It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences.

So is it 8,000 - 10,000 deaths per year in the 2.7 million (0.3%) that have it in the US or the 170 million (0.05%) that have it in the world?
Avatar universal
I generally presume that facts admitted by the person for whom the facts are not so good have some special validity.  
Avatar universal
wrong cite on Dr. Koretz.  Should have been:

Avatar universal
So we are talking about the whole population of known Hep C patients with our stats, you are taking about the projected 1-5% that would die from Hep C...we are talking about 2 different things...who knows how many of those that treated and have been cured would have died from the disease...or at the least had their life drastically altered by the disease...there is no way to know cause you can't take the treatment back to see...for me, I rather treat and not take the risk...
Avatar universal
Mike .. I have read many articles that cite that aslo ..actually some estimate as many as 65%.however I guess no one knows the exact number .
So that would mean  given there are at estimate approx. 180 mill known infected there  most likely is approx.117 mill..that don't even know they have it.

If the scientific data that med scape quotes that approx. 20  -50 % of people will develop cirrhosis in their lifetime and therapy cures approx 75 % of these folks then my math says approx. 30 mill people could stave off having a chirrotic liver  because of treatment .
more awareness is needed surely...so more can treat...

Avatar universal
Thank you, Mr. Simon, member since 2002.   I see you have today posted two recently articles published articles that peripherally counter the assertion that interferon treatment causes cognitive deficit.

Do you know who funded the studies?

As to the study above, what "significant" cognitive functions were improved?

Avatar universal
It's a free country.
Avatar universal
Amen to that!
Avatar universal
"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences."


Ramble.....Your above quote may be true but the bottom line is when you actually find out you have Hep C.  If I knew 30 yrs ago, I probably wouldn't be on this forum today.  

179856 tn?1333550962
LOL someone questioning the validity of MIkeSimon's articles and studies....if that dont beat all I'll eat that fried green thyroid.

Dear Big Pharma, please stop trying to make new drugs to cure hepatitis C. We dont need them nor want them because we will live forever, we all have beautiful shiny healthy livers and can't risk The Davil Intafaron.
Avatar universal
Are your posts that of a pharmaceutical rep?

My posts are of a person who suffers arthritis, disfiguring psoriasis, 3 years+ brain fog, gradually decreasing, and a disturbing deal of suicidal ideation never experienced prior to treatment.

None of these symptoms (with the exception of some degree of brain fog) began until one to two months AFTER cessation of thereapy,m which in my mind mnakes teh studies about side effects during therapy somewhat irrelevant and misleading.  

Perhaps I am in the minority.  Perhaps I am very unlucky.  

On the other hand, perhaps there are enough like me that the 2 or 3 out of 100 saved are not worth the [who knows how many?] badly injured by the drugs.

We do not know the answer.  We do know that there are a "significant" number of long term injuries, though.

Why has there been no long term study?   Why no study of people 12 months afterwards, except from Australia with a national Health Service?  (a study which called for more research and cited a number of patients, some with SVR, who questioned the benefit of treatment)
179856 tn?1333550962
PS Ramble if you ever watched ANYONE die of end stage liver disease or valiantly fight to get a liver transplant that will save their lives - you would know how ludicrous your posts are.

Avatar universal
I was diagnosed in 1992.  Hep C was newly discovered and poorly treated.  The CDC said 5% then. My present math presumes 5%.

I hope this is not an "inane rambling."

I know I am posting a lot.  Forgive me.
Avatar universal
Fair enough to call "BS."  

I cannot find the drug warning in which i saw the 20% number.  

The following says 2.5% to 20%.


A current Pegasys warning says 4% during treatment.


Research shows that interefron triggers failure, and failure takes some time to develop, per the following .pdf


My own thyroid failure did not begin to occur until some few months after cessation of treatment.

163305 tn?1333672171
Mikesimon had a transplant from hep C, did tx 3 times and finally rid himself of the virus. He is great at digging up research information for all kinds of things hep C, related on many sides of the spectrum.
To call him a rep is ludicrous.
We are lucky he still takes the time to post.

I'm sure I got hep C in my late teens. Nevertheless I landed up with decompensated cirrhosis.
Did tx, relapsed, had a transplant and am doing currently doing tx.
Of course I wish there was something else for me to use other than interferon but you know what? I'm not bitter.

Life is what it is.
Nobody forces anyone to do treatment it is our choice.

Please check facts before passing them as truth.

Avatar universal
Thank you.
707563 tn?1553635552
Hi everyone -

Please do not disrupt the forum with personal insults and fighting. Either ignore what you don't like, or report it.


Avatar universal
Whoever flagged and had removed my last post did a disservice to the community.  

That speech which most needs to be protected is often that which one dislikes.  Some tried to stifle Copernicus when he said the sun was the center of the solar system.  Some laughed at Columbus when he said the world was round.

I questioned the motives of a poster with 8293 posts in less than 10 years who belittles the notion of long term side effects and who posts a lot of "ra ra" interferon materials.  

A person on this board for 10 years should know that long term side effects happen.  Belittling them (or me as he did above) is off base, IMO.

Perhaps I am completely and utterly wrong, but  my point had some factual support whether you liked it or not, and it would have been better addressed by reply than removal.  

Avatar universal
It sure wasn't taken down because of anything I did.
I don't mind you writing what you want.
Your problem is that I really have no ax to grind. I didn't enjoy interferon and ribavirin treatment and I did over 3.5 years of the stuff. But Rambleon I finally cleared the virus which I believe was critical to the fact that I'm alive now and in the health that I'm in. I could not have waited till now to start treatment. That's a fact.
Some people have to take interferon and ribavirin and I am always searching for the truth about this disease and its treatment(s).
I have no present stake in the new drugs. I did have a stock position but I'm out now so I have no conflict of interest.
I really wasn't saying that you were inane. I did feel that some of your comments were and I posted what I thought.
I am well aware of the side effects of treatment. I'm also aware of the side effects of having HCV. And they too can be serious.
Do you really think that I haven't heard all of this long before you arrived? I simply have what I believe to be a broader perspective. Like I said Rambleon - some people have no choice but to treat with the SOC and they weigh the risks against the likelihood of success and the benefits to SVR and they make their decision.

Avatar universal
A well stated reply.  

And from my side, I get a message here and there thanking me for saying what I say.  

My perspective is from one who has been grievously injured and felt effects that I never could have imagined before, when I was healthy and strong.  Your perspective is from one who has been wondrously cured.  Perhaps the truth lies somewhere in between.

Thank you,

Avatar universal
Yes Jeff, truth usually does lie somewhere in the middle.
And I really do feel for your situation. I know that people have suffered as the result of treatment. And people have suffered as the result of not treating.

Take care Jeff and I wish you good luck.

419309 tn?1326506891
rambleon40 said:
"I questioned the motives of a poster with 8293 posts in less than 10 years"
Personally I'd be more inclined to question the motives of a poster with 70 posts who has been here less than a year, but in the end, scientific data, research, and discussion should be the debate, not who thinks what of whom and what their intent or ideology might be.

"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences. Perhaps I'm very unlucky..."
Perspective is in the eye of the beholder, rambleon; my husband was rather young, probably 18 or 19 when he got it but is suffering serious consequences.  Your opinion has merit just as much as anyone else's but I question what your agenda is; my husband would gladly have acquired any of the permanent side effects you are experiencing if only he had been successful in clearing his hcv -- you wanna trade anytime, give me a holler.
707563 tn?1553635552
Please get back on topic, and again, if you have something personal with someone, either ignore it, take it to PM or report it.

Avatar universal
And people have suffered and died after trying TX three
times as well . He was only 26 .

The newer PI's were what we hoped to wait for
I continue to hope and pray with my friends
for  cure for everyone
with it will come horrific sides, terrible and some lasting sides for some

OK , I don't mean to sound mean, I'm not ( you are alive) thankfully.

Avatar universal
What has "how many posts and in what length of time"(by anyone) have to do with anything ...??
I must have missed the significance...
Avatar universal
I am alive without having cleared the virus.  I have never come closer to death than the two times I put a loaded  gun to my head during bouts of terrible despair brought on by what I am sure is organic brain injury from interferon.  I am embarrassed from being so dramatic, but these things are true.  

A side effect of treating my psoriasis and psoriatic arthritis with careful eating is that my liver enzymes have, for the first time in 20 years (and just last month and 3 years after my last bout of treatment), gone within normal limits.  

I do not question whether one should treat Hep C.  I question whether the Big Pharma remedy is the only or even the best way.  I do not believe "best" has been proven as there has been no study quantifying and qualifying long term side effects and then doing a proper cost-benefit analysis.

I just had introduction to a river boat pilot in Louisville on Friday.  52 years old.  Loved his job.  Brain now so addled that he can't do it. Arthritis also.  Depression.  Applying for disability.  

That's a horrible (indeed tortuous) situation, and it counterbalances at least one of the 2 or 3 out of 100 that are saved by interferon combination therapy.  

Remember the other 95 out of 100 would not have died anyway without treatment.  

Living like that is daily torture, many times a day.  
Avatar universal
Many of those 95% are cured by current methods, so no they won't die from liver disease....also many will not suffer long lasting side effects, there will be some i am sure such as your self, but there are many here who say they are ok, and i also personally know people who are ok after treatment...what ever percentage you are in is the most important percentage wether it's 1% or 95%...
707563 tn?1553635552
Hi there -

This thread is now closed.  While it is important to know what the side effects of any treatment are, and to hear differing views in order to make the most informed decision for you, it is also important to note that for some, current standard treatment is the only option they may have.

We have members who need(ed) treatment in order to stay alive, and "big pharma" saved their lives.  We also have current members who have lost family members to hep C, or who are very close to death as we speak, and others who have tried everything, and failed. We have members who haven't treated, and are doing fine, and others who are using what could be called alternative treatments.

It's important to note this for new members who may need the treatment and are scared, realizing it's their only option.  

Some have to deal with lingering side effects from interferon, others don't.  It's not a one-size-fits-all situation, unfortunately.


**********************   CLOSED THREAD   *******************************
                       NO MORE POSTS, PLEASE

707563 tn?1553635552
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