failrure to address or admit damage

do you suppose anyone will ever own up to the devastation of treatment for hep c.  i am a nurse was treated with peg intron in 02.  got toxic was able to work briefly after i learned to talk again then in 03 04 got sicker and sicker - continue to have progressive frontal lobe damage autoimmune nightmare has destroyed my family cant work short term memory shot - yet ask any hepatologist and it didn't happen. now there are  black box issues coming out of the wordwork - when did doctors, nurses or anyone altruistic leave medicine.  i cannot even  use a stove because if forget it.  answer from all but one hepatologistg was never heard of it.  they really should read and study the meds they are going to use even if they ignore it and continue to fill their pockets./  i am not the only one this happened to but we will be denied and ignored because basically hep c is a bad person disease and who cares.  wish i had en ergyh to get active but i don't and didnt seem to matter anyway  i have a wonderful doc now who i used to work for so she knows first hand what has happened to me so i get treated well.  but i cannot tell you how many weird things i have had or what feeling good is.  least i dont zombie sleep for days at the time anymore and sometimes i am not nauseated and in total fog - but now am having so many falls and potentially dan gerous things.  i can;'t remember where i put things if anyon e inturrupts me dont really have any concept of time. or anything.  they all know what they did and for alll you others affected hang in there and this nurse believes - remember to laugh even if no one else understands the joke. i miss my work, my brother doesnt let me see his kids, my son treats me like i dedliberately did this to affect his life,  afterall disability and nursing salary are way different - but cant keep up with money anyway have been know not to check mail for a month or two.  probably will never see this post because none of this ever happened or so i have been told.  God bless all those affected and han g in there.

[mike716]

It´s shocking to read about your effects from Tx. You´re not the only one who has posted this sort of thing here, far from it. It´s what keeps me from Tx-ing, even though I´m F2 and progressing rapidly. At 65, and with gastro problems and lots of dental work, I´m scared s**t to Tx, especially with SOC, which for me at 65 with geno 1 and a high viral load, is probably around a 25% chance of SVR.

I´m really sorry for you and don´t know what to tell you. Yes, most MDs don´t know, don´t want to know, and don´t care anyway. So long as they get their cut and a pat on the head (or a check) from the big pharmas, they´re happy.

I´ve said it before, but I´ll say it again: this HCV epidemic was created by the health "profession", and it is a godsend to them. Never has so much money flowed into their coffers. We patients are their victims, and there are so many of us that we´re just numbers to them.

I´ll stop before my blood pressure goes through the roof.

What we hepatitics need is a worldwide organization like the HIVers have, and a good set of lawyers to file suits against the docs and drug companies who have conspired to use us for their own ends. And it is a conspiracy, don´t kid yourself. No money is going into vaccines or antifibrotics, the two best ways of fighting HCV. Just therapy, hugely expensive and destructive therapy, for the millions and millions of victims of this man-made epidemic.

Mike

[orphanedhawk]

nursebetty,
What I first read about tx on the internet scared me so much I refused to think about it for a full year. The information about how horrible tx can be is out there but your doctor won't tell you.

Mike: I agree about us needing organization  and exposure such as HIV has. There is a small thrift store near me which raises money for AIDs research. In the window in neon letters it says, Free HIV testing.
I see adverts for HIV/AIDS runs, fund raising celebrites etc.
AIDS overcame the view of it only being a druggie/junkie disease.

Why can't we do the same?
Why are we the dirty little secret? I think its more than just the health care industry. Is the Vets going to admit to how many servicemen they infected with their airgun vaccines ? Would they pay for all of those infected and the people they infected?

OH

[Frank J. Perrotta]

Of course you already know that you are NOT alone... and it does seem that the only ones that do not know about what this poison does to some are the liver gurus - but even their nurses and staff know what this does to some. One actually apologized for destroying my life... and she kept saying it. On one hand I was so appreciative of her admitting fault but then I didnt want to accept that my life was destroyed... and it is destroyed... but I will keep laughing, smiling and playing the game of life.

Best of luck all

[Fmulder]

The doctors  really push their treatments, They have posters on my  bus with people with mutilated faces (for hepatitis c) and the caption reads, "If you knew you looked like this on the inside, Wouldn't you treat"!, Im an F1, Had this for over 35 years, Been tested (liver biopsy) twice in 10 years, Still an F1, They still want me to inject their rat poison!, I think if I had it this long and it's staying the same, I'll take my chances until they come up with something better (If ever)?, Perhaps if I was an F3 or more I might feel different?, This is just my opinion.

[Teufelhunden]

I've experienced alot of pain and anguish in my lifetime but never on the scale of my 48 weeks spent on Interferon/Ribavirin and the three years after. My golden years have lost their glow. Most of my life is gone now and I wonder if I'm doomed to spend what I have left feeling the lingering side effects of something that was for nothing (I relapsed three months after my treatment ended).  This poem I found kinda sums it up.

Special Poem for the Golden Years

A row of bottles on my shelf
Caused me to analyze myself.
One yellow pill I have to pop
Goes to my heart so it won't stop.

A little white one that I take
Goes to my hands so they won't shake.

The blue ones that I use a lot
Tell me I'm happy when I'm not.

The purple pill goes to my brain
And tells me that I have no pain.

The capsules tell me not to wheeze
Or cough or choke or even sneeze.

The red ones, smallest of them all
Go to my blood so I won't fall.

The orange ones, very big and bright
Prevent my leg cramps in the night.

Such an array of brilliant pills
Helping to cure all kinds of ills.
But what I'd really like to know...........
Is what tells each one where to go!

There's always a lot to be thankful for if
you take time to look for it. For example
I am sitting here thinking how nice it is
that wrinkles don't hurt...

[GoofyDad]

That little blue one is the only goodie
Thirty minutes and I have a woodie  

[child24angel]

LOL,
how long does the woodie last
with the blue goodie?

Nursebetty, Teuf, all:
Very sorry to read all of these problems from TX
I wish you all welll
Hugs
Elaine

[jdwithhcv]

If it lasts more than four hours, first brag to all your friends, then seek medical help.

[GoofyDad]

What about resuscitating your partner?

[jdwithhcv]

that too

[newleaf09]

I think that treatment for chronic HCV will get away from interferon within the next 10 years and then we'll hear about all the damage done by tampering with the human immune system.  I think at this point in time, physicians have convinced themselves that they are saving our lives and the potential harm from interferon is just necessary collateral damage.  

I visited an old historic bathhouse in Hot Springs, Arkansas and saw the chamber where they lowered patients down into a bath of mercury as treatment for syphilis.  Same deal.  Certainly seems insane now but was an accepted practice at the time.

[nygirl7]

AS always it is our responsibility to fully explore the potential side effects of any drug that we might decide to take.  My doctor didn't tell me about the chance my thyroid would be damaged but when it was I really didn't blame him as the information was out there I just never thought it would apply to me.

Even aspirin has side effects but doctors don't go around talking about them either.

I just refuse to be antibigpharma as I realize there are cons but there also certainly are pros.

Just ask Goofy and his little blue pills.......they must have done alot of testing back in the day to get them to market!

[GoofyDad]

There are risks with interferon. There are risks with not treating. On both sides of the equation, the risks are different for each person. Few people would pass on treating based on a remote chance of thyroid issues. But then if you happen to be one of the people affected, it comes down to a question how much did you have to gain by treating. One must also factor in the likelyhood of success into the balance.

I ended up with thyroid cancer. Caused by interferon? Probably not... but who knows? Still, on balance, with advanced liver damage treating was the right thing. For me.      

[R Glass]

Evidence of Trepanation (drilling a hole in the skull) has been found in prehistoric human remains from Neolithic times onwards. Cave paintings indicate that people believed the practice would cure epileptic seizures, migraines, and mental disorders.

I am sure, oneday people will look at what we went through the same way that we look at  Trepanation.

[Trish77]

If that woodie lasts four hours I volunteer to be resuscitated.

[Trish77]

"Evidence of Trepanation (drilling a hole in the skull) has been found in prehistoric human remains from Neolithic times onwards. Cave paintings indicate that people believed the practice would cure epileptic seizures, migraines, and mental disorders.

I am sure, oneday people will look at what we went through the same way that we look at  Trepanation. "

Maybe someday they'll be saying "I need interferon like I need a hole in the head"

[GoofyDad]

Maybe it was self-drilled by the cave woman whose Neanderthal husband was sporting the four hour woodies. In other words, she was so fed up with him drilling her, that she went and drilled herself.

BTW, I think I recall from my Red Cross lifesaving that the first step in resuscitation is using something to clear the back of the throat. Woodie to the rescue!

  

[Trish77]

"Maybe it was self-drilled by the cave woman whose Neanderthal husband was sporting the four hour woodies. In other words, she was so fed up with him drilling her, that she went and drilled herself."

An unlikely scenario.

[Trish77]

Back to the subject at hand .... We're all rather fond of saying there is no known cure other than interferon and ribavirin so where exactly is the conspiracy?  If someone had an alternative cure that worked, they'd make tons of money from it - look how Lloyd Wright does by touting a phony "cure".  Alot of us knew the risk factors going in and knew that there were extremes that could happen.  I feel very badly for those that drew the very short straw.  I'm still not seeing the conspiracy.

If there's anything that concerns me, it's the lack of knowledge right on up to the downright incompetence on the part of some doctors treating people with Hep C.  I feel badly for those people who are NOT told the risks when they start treatment and don't have their options fully explained to them.  Not everybody has the ability to research all their options and become their own physician.  

These are such serious drugs and the side effects so potentially harmful that it seems to me there should be some regulation in place as to who is allowed to treat people with Hep C and what credentials they should have.  I would like to see more than just a gastroenterologist credential required to treat someone with Hep C or at the very least, that gastroenterologists be required to follow a treatment protocol that is determined by a body of hepatologists.  

[Lady Lauri]

I am in total agreement on Trish's post, well said! (both of them :)

Especially in the area of I was told NOTHING by my excellent (and he is!) Dr., nor my NP in a trial, nor any medical personal about the seriousness, long term possibilities, of these drugs. I learned it all here, before tx!  And I treated with one of the best, in one of the best hospitals. I believe in my case (many) he and his co-workers are so involved in research, cures, that they do their 'job' and your done there. I do believe my Dr. is 100% about curing his patients, having went out of guidelines for the trial (legally!) saying "the hell with the trial, at this point you can't continue their guidelines, dosing, this is about 'curing' you". I do believe he is one of the most dedicated Dr.s in curing us, finding easier tx's, ending hep C. BUT....as with many, it stops there, which I do have a hard time with. He is powerful enough, head of research to put together an after tx study, long term effects. Even him, they, dismissed my issues, sending me to a neurologist (no insurance, haven't gone) and saying I must have had an underlying issues. Which is odd, considering in a trial they screen for these things! All I heard was you'll have 'sides', nausea, hair loss, fatigue. Never a mention of long term. It was my responsibility to do my research in my own tx, decision, which I did and decided to take the risk. I don't regret my decision, tho I am paying a price. I also feel they -someone- needs to make better regulations, as Trish said, in informing anyone starting any tx (even cancer chemo) of the risk of long term damage. Sadly, there are too many that don't know to research the drugs they are about to do. I research EVERY prescription I am handed, even antibiotics!  One I was given was very dangerous, and not to be taken with liver damage! Yes, they knew I had Hep C and damage when they gave it to me.

The fact is that these are the only drugs to 'cure' us at this time. Many of us could be dead with out tx. Many of us could be living with cirrhosis, far more horrific then what I am dealing with now . I was 'half way' to cirrhosis even being an occasional drinker, no drugs. I'd have been in full blown cirrhosis in '5-7 yrs' , even with NO drinking (as I quit all immediately upon dx). I have post tx issues, my life has changed, but where would I be in a couple yrs, now, without tx and, thankfully, SVR? I caught it and tx'd in time, it DID save my life in my opinion. I am 51, was looking at cirrhosis by 57. How many years has this tx 'bought' me? I live daily with pain, but not cirrhosis! Issues or not, my life is better because I did it. Myself, many others, would have been far worse off without it. Bear in mind, I am very drug phobic, take very little meds and decided to do this 'rat poison' because for me, it was my better-or only- option. I drew the medium straw, post tx issues but livable, others got no post issues, others got far worse. I am always sad to see any with post issues, I often do post about my own, but I also see they may have been worse off without it.

I am in no way saying all should do tx! I see many that I feel should wait, no liver damage, better meds soon, etc. It IS a serious, hard decision for each person. Nearly every drug there is has risk and sides, from BP meds to Viagra to pain meds. My father nearly died on Celebrex, many are helped by it. Yes, these are 'rat poison' and very damaging, but so is cancer chemo, many others. The 'conspiracy' to me is not informing patients enough and not doing any follow up to try and help the many left damaged. At this point, where would many of us be without these drugs, much as we hate them!?

[Lady Lauri]

I am sure, oneday people will look at what we went through the same way that we look at  Trepanation............

Agree.
I look at my sisters cancer tx for near 11 yrs, at times, I could not believe her Dr.s did not stop, draw the line at 'cruel and inhumane' in her insistance on not stopping chemo, keep fighting. At some point, her mental state from damage and her fight, could have been questioned. I believe, her Dr.s knowing she had no odds for cure, let her keep doing it for her own wishes. When one faces death, or a terrible illness, it is amazing what they will try, go thru. I have seen few that gave in, ready to die.

Look at early trials of these drugs!  A member here had e-mailed me his early trials years ago, OMIGOD, the dosing, people that died, was unbelievable. And that wasn't too long ago!

[mikesimon]

I gotta say - nursebetty is the only person I ever heard say what she said about results from TX.
I've been here a while and I cannot remember anyone with those types of issues resulting from TX - progressive frontal lobe damage, short term memory shot, sometimes i am not nauseated and in total fog - but now am having so many falls and potentially dan gerous things.  i can;'t remember where i put things if anyon e inturrupts me dont really have any concept of time. or anything.  

I simply haven't seen, read or heard about anything like this from treatment.

Mikr

[nygirl7]

No I have not either but was hesitant to say so because I thought perhaps I missed something along the way. It doesn't sound normal to me at all - it is much much more advanced than anything I have ever heard of related to interferon.  I would seriously find the money to go to a neurologist or neuropsychologist immediately.

It sounds much more like with I had TBI  from a severe car accident than anything IFN related and it should be checked out.

[tashka]

Most people who come to the doctors are not very well informed, and many are not very educated. It is a job of the doctor to educate and to explain, especially in case of such serious therapy as the one for hepatitis C.

When my husband had a biopsy, physician assistant took the time to explain ALL side effects possible. And she said that, as with any surgical procedure, there is the risk of serious bleeding, infection, or death. After this we gave our consent to proceed with it. But I felt that we were free to decide not to have it, if these side effects were unacceptable to us.

I believe that the same thing should be done when interferon therapy is considered. Doctor should take his time and to explain everything that might happen, no matter how scary it is to the patient, including the possibility of long term damage. It is in the package insert for interferon, and the patient has the right to know-and to know before he starts treatment, not when the sides appear. Most people will not read the package insert-it is too long, and written in a tiny print. And many are not good readers to begin with.

After that, the patient should make his decision. And yes, many people, probably, will chose not to have this therapy. Others will decide that the risks are worth it.  But it would be a fair and honest approach.

[medicmommy]

Hi Betty,
I took the gamble also, and though I did not come through completely unscathed, I am functional and can carry on with life and work. My biggest worry before treatment was that I had an underlying disease process that I didn't know about and that treatment would it bring out. -I figured at worst, it would send me into menopause so I took the leap....I had a friend -a fellow paramedic, who was diagnosed with Hep C in the late 90's and went through all sorts of treatment regimens. After the peg trial (there may have been something else as well) he developed liver cancer and died. Needless to say, I was horrified when I was diagnosed because all I could think of was my friend, Dave, and what he fruitlessly went through.
I am so grateful for all of the people like yourself who went through the treatment before I did, and gave the folks more data to work with. I'm so sorry it has disabled you so badly...My prayers go to you for health, clarity and strength, and to the other human lab rats who are suffering as well. ((((((((((((((((((HUGZ)))))))))))))))~MM

[Trish77]

"Even him, they, dismissed my issues, sending me to a neurologist (no insurance, haven't gone) and saying I must have had an underlying issues. Which is odd, considering in a trial they screen for these things!"

I'm not sure that they screen for everything in a trial, they screen for the pertinent things.  I don't recall being screened for thyroid before I started the trial and I now think they should screen everybody.  I think they'd find that some are more prone to thyroid issues than others if they did and therefore more susceptible to additional autoimmune diseases.  

I think that as they go along, more is becoming known.  I feel badly for people who were treated some years back where less was known and the drugs were not as good as the INF and riba that we have now.  I wonder if the people to come who will have telaprevir and boceprevir et al as a normal part of their therapy and who will eventually have shortened therapy from 48 weeks to 24 will look back at us the same way and feel bad for those who endured 48 weeks of INF and riba only to relapse or not respond and have to do it all over again.

HCV is a relatively new disease, the drugs are evolving and what is known about them is evolving.  They are just nasty drugs to combine with a lack of experience or knowledge on the part of a treating physician.

[newleaf09]

I don't know if brain disorders (and there have been other posts besides betty's) are related to interferon or not.  Shortened TX will not stop a patient from developing auto-immune issues either.  You will either be one of those unlucky ones who is genetically susceptible to becoming auto-immune or you won't be.  Reading the label and reading the risks of the drugs is also useless.  Faced with death by liver failure and the loss of thyroid function, I'll opt for taking synthroid for the rest of my days any time.  At least I'll have more days.

When accepting a chemo drug that can, on the one hand, save your life and on the other, decrease the quality of the remainder of your life, you move away from practical decision and into the realm of philosophical decision.  I don't know anyone who has been able to make the treatment decision in a completely intelligent manner when faced with the fear brought on by the threat of death by liver failure.

[mikesimon]

Well newleaf, I made my decision in a completely intelligent manner. It was quite simple for me - I had no choice. I could either treat or lose my transplanted liver. And I know others who made their decisions in a completely intelligent manner. You can be sacred and still make intelligent decisions.

What strikes me is that I see several brand new members starting threads complaining about side effects from treatment. And, their only post is the post that started the thread - they don't appear again in the thread thereafter.

Mike

.

[Bill1028]

Mike, I think you are right, there seems to be a higher rate of trolling going around here lately.

[nygirl7]

Me thinks both Michael and Bill are spot on and SEVERAL others are discussing this phenomenon too - even other hep forums have now noticed it and contacted me.  Anti-Big Anti-IFN Club seems to have established itself here.

It's a good thing though that although they are all brand new since January 2010 and say relatively the same things we can see who they are. Plus the fact that they never post again after their initial post.......when we all know just how much we wait to see when we first post if anybody will respond you know? But NONE of these new people seem to care at all.  Hum........Hinky ;)

[jdwithhcv]

I have to agree with Mike - I made my treatment decision in an intelligent manner.  Experiencing fear does not preclude intelligence, and anxiety does not obviate ones ability to apply ones' intellect to the decision at hand..

I also agree with Bill, there does appear to be a high rate of troll activity in the past week or two.

[jdwithhcv]

I have to agree with Mike - I made my treatment decision in an intelligent manner.  Experiencing fear does not preclude intelligence, and anxiety does not obviate ones ability to apply ones' intellect to the decision at hand..

I also agree with Bill, there does appear to be a high rate of troll activity in the past week or two.

[nygirl7]

HOnestly I thought my decision to treat was pretty intelligent too.  Considering all the hours and hours or research I did beforehand (of course after the crying poor me poor me I don't want to die stuff after watching a friend die of the disease just beforehand I was pretty frantic) and now I am cured.

Fear can be an awfully good thing sometimes and I didn't want to die so it encouraged me to treat as hard as I possibly could!

[Willy50]

(Mike Simon wrote)
"What strikes me is that I see several brand new members starting threads complaining about side effects from treatment. And, their only post is the post that started the thread - they don't appear again in the thread thereafter. "
---------------------------------------
(Bill 1028 wrote)
"Mike, I think you are right, there seems to be a higher rate of trolling going around here lately.
------------------------------------------
(JD wrote)
"I also agree with Bill, there does appear to be a high rate of troll activity in the past week or two."
-----------------------------------------
I think you answer your own question, why people don't stick around?  It is made clear that they are not welcome.  They are not even "real" people with real symptoms.

Well........I disagree.

There is a huge list of people who have TX'ed and who have had post TX issues.

Probably one of the most prolific and most admired was Jmjm.  He had over 10,000 posts here and after TX he had to resort to voice recognition software due to the severe tendenitis.  Jim also cataloged an area within Medhelp where threads and symptoms such as these were archived.   Jim got his SVR but it was not without a price.

Lauri also got her SVR and she has also some post TX issues.  Keep in mind; as a genotype 2 she did lower dose and a shorter treatment time. (I'm thinking that it was around 21 weeks and with further reduced dosing at times)

There is a long laundry list of black box warnings that come with the drugs that we must use for treatment.  IMHO there are also a long list of other problems that may remain unproven (and therefore not on the black box list) but that are still VERY real.  Those with these symptoms are often left to fend for themselves.  There is very little research or post help for those with these symptoms.  Indeed, they are often blamed on a preexisting condition, or the effects of HCV (it *couldn't* be TX!!!), or the whinings of a malingerer.(your scores look fine; you are therefore fine).

It seems to me that if this were a pro TX thread...... and someone appeared to run down TX....well, that might be an example of trolling; showing up in a thread with the intention of causing a fight.  I wonder....... if a person shows up to write about their post TX experience and is attacked for doing so by pro TX membership..... is that no less disruptive?

Many people who show up with no idea about HCV deserve help.  They deserve to have their options laid out for them, and be given balanced information about HCV and about TX.  The same is true for that segment of the population who who either fail TX..... or have the issue where TX fails them....and they are left with long term post TX related issues.  It appears that discussion of such is discouraged here.

So often they are cut loose by their doctors to fend for themselves.  When they show up here they are labeled and invited to leave.  

Yes, I *wonder* why they don't stay.

I think it would be a great service if they were given some support instead of being labeled and shown the door.  (but not before they are mocked)  

I wish that members would honor the spirit of a thread and not hijack the topic.
These people deserve your respect or compassion...... and if lacking that.....your silence.

best,
Willy

[mikesimon]

What does that have to do with brand new members each posting only once to start a thread about the horror of treatment? They never post to that thread again and it's not because they were mocked - they never intended to.
I know people who didn't have horrible side effects but if several brand new members started threads saying how wonderful SVR was and that treatment wasn't bad at all you'd be suspicious. You betcha
What does it matter that Jim had side effects. Jim also double dosed both treatment drugs and got pretty sick pretty quickly and extended treatment. At that point he was following a Swiss or Swedish protocol which advocated mega doses of ribavirin and Peg and he pushed that approach vigorously. I know of one person who followed his advice and wound up hospitalized for severe anemia.
I admired and liked Jim. However, I think he overreached when giving advice and I told him so on numerous occasions. First he encouraged people to take mega doses and then he adopted his "watch and wait" approach and advocated strongly not treating continually telling people they could wait until stage 3. Recent studies have debunked that approach but since you've chosen to adopt it you remain convinced and love seeing evidence that you've made the right decision. I wish you well regardless of what you decide - if you ever do decide.
I treated for 3.5 years and I suffered bad anemia but I have no autoimmune disorders, no hematological issues, no fibromyalgia or joint pains and NO HCV. But, I never advocate treating unless pushed to answer. And I never have because I am not a doctor.......and I know it.
Mike

[Trish77]

"When accepting a chemo drug that can, on the one hand, save your life and on the other, decrease the quality of the remainder of your life, you move away from practical decision and into the realm of philosophical decision.  I don't know anyone who has been able to make the treatment decision in a completely intelligent manner when faced with the fear brought on by the threat of death by liver failure. "

I only have time for a short response at the moment (which is probably a blessing :) but I just had to respond to this part when I saw it.  

I don't think I had the luxury of anything other than a practical decision.  I owed that to my children to make the best decision possible ALL things considered.  I agonized over all the bits and pieces and thought it to death from all perspectives.  

I can't say that I was overwhelmed with fear regarding liver failure to the point of making an unintelligent decision.  I knew that liver failure is really only for the small minority of persons with Hep C.  What I took into account though is how my own situation moved me closer to that possibility if I delayed treatment and for how long ... along with other VERY practical considerations as to how it would impact my job, if I'd be able to support my son who was still in university, starting now on a contract job vs later on a permanent job, etc etc....all VERY practical considerations.

The difference is that I was early stage.  If I was late stage...I think there would still be practical considerations.  

There are, admittedly, some people who rush into this with great fear although I think in too many of those cases the fear is misplaced.  It has bothered me to see people rushing into treatment because a doctor has given them the impression that they have to start treatment right away INSTILLING fear into those people (why else must they need to rush into treatment asap after all if they are not at immediate risk??  Argh!!), they end up on this forum and from their dialogue you can tell they know practically nothing about their health condition, their staging or their options.  

Fear can be managed and practical intelligent decisions are essential.  While, granted, some people make the decision for treatment out of fear, I gently beg to differ with you that it is the norm for people to make these decisions out of fear.  I think, rather, it's the exception and that the norm is that this is a difficult decision for people to make and it's carefully considered based on the realities for that person.

Trish

[Willy50]

Mike, I mentioned Jim because he was emblematic of a long term "real" member and who also had longer term post TX issues and who claimed to have been in great shape prior to TX.

I mention Lauri since she was clearly another "real" member.  Not only was she on the lower dose shorter term Geno 2 TX, but her dosing was reduced as well as her duration.  She may have done 1/3 or 1/4 of the IFN or riba that some high dose extended TX people here do and yet she reports having lingering post TX effects which make it difficult to do what she used to do.  Damaging effects can happen to anyone, even at reduced dosages or duration.

If one reads this thread or other like it one finds many long term members with residual effects.  This thread was responded to earnestly by many members who have random odd effects.  They are trying to catalog those effects, compare notes and see if any member or their doctor has come up with a solution for a few of their issues.  It may seem negative to some but gathering types of data on the damage is the first step.  Likewise when the posting of such information is discouraged it hurts the database of reported symptoms or issues which could possible be treated.  It sends a message not to post further, that this type of discussion will net be permitted by members, and it provides the "proof"; no discussion, no cataloging of symptoms means that nobody had ever heard of such symptoms; ie, they must not be "real".

What would the originating poster do that would have validated her post?  I'm glad that Frank J Perrotta (and members like him) stayed on, continued to post and didn't leave.  These people may need each other as much or more as the newly diagnosed need the boards.  They are people either with HCV or who have suffered thru the treatment of HCV.  They still have those vestiges of the virus or it's TX and are as fully qualified as any other member here.
  
Anybody who thinks that they have means of discerning who is real and who isn't I would like to have them explain that in a different thread (and on the community side, of course.  ; ) ).
I would like to hear the *science* behind that.  : )

Willy

[mikesimon]

I'm sure you would like the science - wouldn't we all?

HOW LONG AFTER TREATMENT DO THE SIDE EFFECTS STOP
by olivia68, member since Jan 2010

Long-term effects of Pegasys/Ribavirin
by melinsday member since Dec 2009

Side effects of the chemo shots
by KellySue2010,  member since Jan 2010

failrure to address or admit damage
by bettyrnurse member since Jan 2010

Interferon and paripheral neuropathy
by Cindi0663, member since Jan 2010

True severity of side effects
by lola member since 2010

Post Treatment Trouble
by Amber1430 member since Dec 2009

[Willy50]

I have to go to work.... but....

Your criteria separating the real from the false seems to be if they are recent members and if they write a post which may have negative connotations for TX.  

Given the long list of black box warnings which come with IFN and RBV it may be more of a miracle that there are not fewer reports.

I think this discussion is off topic from the originating topic.  I jumped in when people were either getting labeled or insinuated as trolls.  Ours is a good discussion; it just doesn't belong in this thread.

Willy

[GoofyDad]

You guys have me wondering. Am I real? Or am I a figment of my own imagination? If I can imagine, must not I then be real? Or maybe I live in someone else's dream? If it were my dream it would probably be messier.  

[mikesimon]

You're real alright Goofy and I have the science to back it up.
Mike

[mikesimon]

You said:"Your criteria separating the real from the false seems to be if they are recent members and if they write a post which may have negative connotations for TX. "

I don't recall saying that people or posters or members weren't "real". That is your word and not mine, I think. Perhaps I'm wrong and, if so, please direct me to the post in which I said anyone was not real.

I did say: "What strikes me is that I see several brand new members starting threads complaining about side effects from treatment. And, their only post is the post that started the thread - they don't appear again in the thread thereafter. "

Mike

[nygirl7]

Frank has been around for quite awhile and has posted well more than once before just disappearing the same day without even responding.  

If you read the posts you can notice that people were decent, respectful and kind in their responses. Yet none of these new members had anything to say other than the 'interferon is bad' comment.  No "what can I do about the itch', 'will my hair all fall out', 'why are my eyelashes so long' - NOTHING.  

They did not post when they started treatment, during treatment - they did not post until years afterwards when all of a sudden they all posted the same exact sentiments in only a few days.

It seems not only to me but members of other hep forums who have reached out to us at MH about this that there is a group who is intent on letting everyone know "the horrors of interferon".  Funny though that it doesn't say if this person, for example, was even cured of the disease that they took peg interferon for in 2002 - one of the first things one usually would post.

I guess that is not relevent right?

If you believe that one I have that bridge to sell you (or a juicer take your pick).

[IAmTheWalrus]

There seems to be an uptick in the Anti-IFN sentiments, particularly concerning long term effects. I haven't really taken these complaints too seriously before but I have to say that Nurse Betty's comment about the "zombie sleep" struck a nerve. It comes and goes for me, but sometimes I am a zombie for days. I was never like that before.

I can't really say that it is the TX that makes me that way; I have been through quite a bit with the ESLD and transplant followed by 84 weeks of the nasty stuff. It could be more related to psych or emotional things rather than some chemical effect of the drugs.

I am sure we are all looking forward to the day when IFN joins trepanation on the trash heap of medical history. Still, you have to use the technology you have rather than what you wish you had, so I believe I did the right thing and would not do differently.

NYGirl.  Remember "Llama Lashes"?! LOL! I forgot about those ... gone now.

[Trish77]

While I do get annoyed at the tendency of some people to see a troll or an imposter every time someone posts here in a way that they don't understand or doesn't fit their own pre-conceived notion of how people should be, I gotta admit, that's an interesting list you have there, Mike.  Could be a coincidence.  Might not.  Regardless, I think a bunch of people who post once and disappear can be handled well enough by the ones who remain.  Hopefully when someone does a "Google search" for this stuff, they get the whole thread.

Frank J. Perotta, I'm very sorry for what has happened to you.  Thankfully, you seem to be the exception rather than the rule. I don't know how I would feel if I were in your shoes.  I just hope you can find some measure of peace that allows you to cope with your challenges in a way that gives your life some kind of meaning to you. For all the people that have gone through these forums in the short time that I've been here, yours seems to be about one of the worst cases.  It seems that with various therapies there is the worst-case scenario that happens to a very small minority of people and I'm sorry that it seems to be that you are one of those that has gotten the very short straw.

Seems few of us come through this treatment completely unscathed but many of us would do it again all things considered - I've reviewed my own decision over and over in my head and I would do it again.  In some ways, it seems like we're all part of one big ongoing clinical drug trial with this interferon and ribavirin treatment - the more time goes by, the more that's learned - about what influences the success of treatment and how to improve chances of success.  Even the experiences people have shared here have taught me many things about what these drugs are capable of - R Glass's experience with low testosterone post-treatment come to mind, the experiences of treaters with post-tx depression, etc. etc. and the interesting juxtaposition of those who have post-thyroid issues and corresponding RA or joint pain.  I had a terrific treatment team, very progressive (as much as you can be in Canada) with even a psychiatrist on staff who specializes in the mental health issues of those with Hep C and undergoing treatment.  Even they continue to learn and adapt their therapies and I can imagine that what they did five years ago is not what they're doing now.  

It's the way life goes, I guess, in not just this but in anything.  You do the best you can with what you know and what information is available to you at the time.  Hindsight is a wonderful thing but at least the hindsight helps others who come along and sometimes that's the best we get.

I'm looking forward to the better treatments coming along.  I'm happy to know that there are possibilities in the future for shorter treatments and higher success rates.  The possibilities to replace INF and riba seem few at this point and a vaccine is still elusive but ... who knows.  Maybe in another 10 years that will be different also.  Here's hoping.

Trish

[nygirl7]

NYGirl.  Remember "Llama Lashes"?! LOL! I forgot about those ... gone now.

OH to think we used to complain about them hitting our glasses and stuff........man I'd love to have them back again for a little while I sure would.

A definite upside to treating!

[debnevada]

Mayo Clinic believes in "post interferon syndrome"....just got back from my second trip there.

[Frank J. Perrotta]

WoW, I am not sure what is really going on here?

nygirl7 said:
Frank has been around for quite awhile and has posted well more than once before just disappearing the same day without even responding.  

Is this true? "just disappeared"? If it has happened I apologize. My life is pretty much ****** now and I better try to pay more attention. I do have one small excuse - without the amphetamine keeping me awake I would only have about 3 hours before crashing. Thank you big pharma for the amphetamines that keep me going for a total of 7 hours now before crashing a horrible daily death like sleep!

Willy, I cant really explain my mental state on this rollercoaster of life. I want to find meaning in it all and try my best to stay positive and be thankful for what I have. I also want those who come here to know that they are not alone. I cant tell you the feeling I had when I first posted and learned that I was not the only one to have these lingering sides. TBH, it is a double sided sword… one wants to know the truth about how bad it is but then you want to keep the faith that things will get better. Unfortunately I keep getting the first part and not the second.

Trish, thank you too for your kind words. I never considered myself in the "worst case" envelope when I read Jim and the many others that responded to my first post. I do know that there are many many many out there suffering much more than me and it must be a pure hell.

Going back to that double sided sword: I have one GP (the two GPs I see say that the liver gurus and liver centers almost always drop the ball on post studies/effects and the local GPs see way too many "cures" plus a side of hell) who had two liver transplants and treated on the version of interferon a couple years before my version… he came out just fine. HIs wife is/was a nurse. She got C and treated about the same time as me. She has the lingering neurological damage and there is nothing her husband/my doc can do. I finally got the message and it is now difficult to see this GP.

Anyways, nygirl7, if there is anything I skipped/disappeared on that had you scratching your head please ask away.

sincerely

[Frank J. Perrotta]

Care to elaborate on the Mayo and their beliefs and your trips???

thanks

[child24angel]

Congratulations on your two year SVR !!

I'd be interested to know what the Mayo clinic is doing
for you also

Hugs
Elaine

[nygirl7]

Is this true? "just disappeared"? If it has happened I apologize"

I'm sorry Frank you read it backwards (I wrote it backwards) what I was trying to say that you DID NOT disappear - you've been around here a long time and there is no question in anybody's mind that you are nothing but 100% legitimate.  You may not post like a crazy lunatic every hour on the hour but you never just posted one time and then left the forum as seems to be happening with some of the posters now. I hope I made that clear this time!

Sorry sometimes my words come out backwards when I'm typing fast at work.  Even when I'm trying to be complimentary it seems I can say the wrong thing. I've always had that knack unfortunately. Foot in mouth disease is possible even on the internet it seems.

My apologies.

Deb

[Bill1028]

These people might be able to help with these extreme undiagnosed problems.

http://www.newscientist.com/article/mg20026862.900-meet-dr-houses-caring-alter-ego-.html

[nygirl7]

That was a really good article (but I still like House anyway ;)
Thanks!

[Frank J. Perrotta]

Oh, now I can read it properly... it is funny how I read that over and over again making sure I was NOT reading it wrong but still...

I did go back and check on some of those who are just posting once and it is really weird. But this C and also the treatment can do funny things to your brain.

Even me, being the most optimistic person ever, had suicidal tendencies on my second month. That was really weird.

Glad we got that straightened out.

[debnevada]

I have had a ton of post tx problems, joint issues, gastric issues, kidney issues. After doing every test known to man, mayo has diagnosed me with "post interferon syndrome".  There are abnormalities on blood work, EGD's, etc., and also a renal artery problem, but they put it into the "bucket" of PIS (haha...how appropriate).  One of the docs there stated..."It is well documented, but hard to "prove"."

What they do is treat symptomatically. I take an AD, omeprazole (acid reducer to deal with the ulcerations), pain med, urso, vitamin D, calcium, vitamin e, some other stuff.

Mayo also has an opinion about occult Hep C vs. circulating, reproducing virions. In other words, is it "really" gone?  The good news is that mine doesn't reproduce.  I have had LFTs in the single digits at times.

I am still on the fence about whether i should have treated or not.  Because of my acute status, I felt it was the best chance. however.....

[Frank J. Perrotta]

Thanks so much deb.

Sounds like the Mayo has really come thru for you (and maybe us).

Wonder if your docs would talk to my docs?

but what a breakthru to hear this from such a well established "real" group, lol.

thanks for posting and best of luck with your symptomatic treatments. I am pretty much in the same boat.

[guyhumphreys]

i am 2 yrs removed from tx and i am still hep c free. i do have lots of post tx issues simular to what debnevda has just not as worse. i have been reading this post as i have others looking for answers to my problems. i geuss looking for others like me, people who were above average before going through the tx but now can barely hang on day to day. before tx i was healthy no problems what so ever mine was discovered in a reagular physical by a new dc i started seeing. since the tx i have actually gone crazy for awhile did come back somewhat have a hard time seeing now, cant concentrate, have short and long term memory loss, personality changes every couple of months, anger issues easily frustrated have been dia. with fibromyalga (fibromyalgia), had heart problems, severe leg cramps, insomnia, depression, migrane (migraine) headaches, nausia, cordination problems fatigue, i am now suicidal, parinoid, needy with childlike tendicies, chronic pain, anxiety attacks daily, i got lost on a regular basis, forget what i,m doing, have comprehension problems, on the verge of losing my job of 23 yrs., have almost totally ruined my relationship with my fiancee, 3 months after moving in together i found out i had hep c. before tx i was perfectly healthy none of these issues, i had an IQ in the high 130s, 6'-2'' tall 210 strong, confident, easy going, physically fit 45 yr old man. now 3 yrs later here i am a shell of myself and wondering if it was all worth it now. to be honest i dont think it was. i was never warned of any of these possible problems even asked about long term issues and was told there was none just that it was an 80/20 chance of being cured. when i went back 6 months after tx was told there was no way that it had done this to me and that the drugs were gone from my system a week after i stoped and did do a 46 wk program. now as to people posting on these things and never coming back and reposting, there are 2 possible reasons for that 1 they forget where they were, the other is that just like me are looking for answers and you get frustrated by being told its not the drugs that did this to you when you know it is the only answer to your problems. so if i dont find my way back here or i forget about coming here you can contact me at guy_humphreys2001***@**** with any information you might have on anything that might help improvre my situation. any and all help will be appreciated

[Diamond_Lil]

Depression can cause many of the symptoms you have described such as insomnia, suicidal, paranoid, easily frustrated, needy with childlike tendencies, loss of concentration, confusion, daily anxiety attacks.  Those problems can usually be manged with antidepressants, counselling or perhaps a type of psychotropic medication.

People with Fibromyalgia can also be prescribed medications like Cymbalta which help with leg pain, insomnia, headaches and other symptoms associated with Fibromyalgia.

There are physicians out there who can treat your physical and psychological problems if you're willing to seek them out and go through the process of trying to eliminate or lessen the problems that are diminishing your quality of life.  It may be a lengthy trial and error process but if you're willing to spend the time and some money, you may very well find relief.  You had the determination to finish treatment and that took a lot of resolve.  You are now cured of hepatitis c so use that same determination to find the best possible solution in getting yourself back on track.

Good luck and I hope things will eventually turn around for you.

Diamond_Lil

[guyhumphreys]

so far none of the anti deppressants have worked, cymbalta didnt work i have tried numerous things and they have not helped. so far the only thing that has giving me some form of relief was getting in pain management with morh. sulf. i am in the proccess of trying to get into a neuroligists to see if he can find out anything because something has happened to me and the drugs dont work some help for maybe a month and thats it i am on my 4th sleep aid most of it i can manage but the mental probs i am having are to much

[guyhumphreys]

oh thanks for the advice

[merryBe]

I'm sure you are sincere in your beliefs, and it's sad when anyone has long term side effects from any medical course of action. Yet I just have to say this.

were you nursing when surgery was being practice? Did you not see thousands of folks walk around and live after life saving surgeries?

OR do you know that 170,000,000   that's 170 million people worldwide have this disease....yet half of them will treat and cure, and go on to live out a normal life.

So are you saying that 100 million people who will benefit should give up on the idea because a few will suffer long term side effects?

Should the millions of cured cancer patients not have treated because some didn't make it??  Because some didn't do well with the drugs?
Should they have died rather than try?

The way I look at it, it's an individuals choice to treat or not, and there are risks.
Certainly there are risks.
Yet we know what the result will be without treatment...it is a certainty. Left untreated,
absent some other accident or disease getting you first, a hepatitis patient can look forward to dying a long painful death of liver disease AND the memory and energy all go downhill in that painful process as well.
The only way to possibly avert that outcome is to treat.

You did not say whether you SVR'd or not. Might I ask?

What do you think of all the cancer patients treated with interferon who made it?
What about the MS patients who stayed out of wheelchairs for an extra 10 years or more? Should all these people just stop because something bad may happen?
We might as well not drive to work each day then, because bad things happen to a few everyday we do that as well.

mb

[guyhumphreys]

its not the fact the treatment should be not given to people, the docs need to admit what it can do to you and tell you this up front. i was told there were no long term affects of this tx and also was told that it was out of my system in a week of ending it. well its all a lie cause its been over 2 yrs since i ended my tx and i still am not the same as i was before and may never be again. yes i am svr but was it worth what i go through now, that is something i am not sure about. all i want is for them to admit that this happened and stop denying what it did to me.

[merryBe]

GUY=I agree, doc should admit it does happen. There is a huge disconnect there.

I actually had to take my docs to task for not knowing that the endocrine system is affected by the disease as well. Research prove that.

I'd suggest everyone get checked for endocrine dysfunction. Long before a person becomes decompensated one can develop a huge number of ailments due to any one of our glands not working.

Fatigue and memory problems occur (and inflammatory responses etc) the moment any one of the glands is affected.

Unfortunately, they only test for thyroid (and parathyroid with calcium level) but those don't tell the whole tale. They do NOT test in this country for diebetes (diabetes) correctly.
The HOMA is a much more accurate tool for making sure the pancreas, a gland, is working.
The IGF-1 will tell if the pituitary has been compromised (many HCV people have very low pit. function).

Until the medical community realize these connections there will continue to be people that fall through the cracks not knowing that proper endocrine function is crucial to mental process, metabolism, energy, heartbeat, etc etc. etc.

I have a thread on HGH if you are interested.

BETTY= sorry if I was at alll harsh above, not meaning to be. I think the operative thing is we must be careful, especially medical professionals, not to discourage folks from treating when indeed it may save their lives, allow them to return to work, allow them to not worry about infecting others, etc etc. etc.
It's not that we should not discuss the issues that do come up...but that we need to balance how we word things in order not to discourage others who might succeed, and recover completely...but who are too afraid to treat after reading a horror story.

I also have stove problems etc. and did not SVR. I would suggest you try seeing an endo, getting a sleep study, getting off of any prescriptions that can effect the mind or immune system, and taking a more holistic approach to recovery. Example: Coq10 and many other vitamins and herbs could help you to recover as well.
There is a whole regime recommended for liver patients to do this.

what stage is your LD at?  You do realize some of what you describe is common in stage 4 LD right? Even if you SVR at that stage, you may not ever regain full metabolic processes.

feel free to PM me if you want a list of helpful substances.
mb

[moahunter]

I'm surprised many people weren't told of the risks. Maybe that has to do with when they treated? I was informed of the thyroid risk, and told of the moods and other symptoms of treatment. I think there are so many possible long term side effects that "could" happen from any significant treatment, be it chemo for cancer, or interferon for this, or MS, that doctors can't list them all, for many are so remote in probability. I don't think it is going to change anytime soon, the new drugs while promising shorter treatment and better % outcomes, may just bring new problems.

I feel like I made an informed decision. It was a good one, I am cured, and aside from some minor nerve damage in fingers (which doesn't really bug me much), my health is 100%. I feel interferon and ribavirin has saved my life, or at least, my lifestyle. It's sad others aren't so lucky, but that is the way with medicine, it isn't the fault of doctors that we picked up something very nasty that there isn't a better cure for yet.

[mike716]

Interferon and ribavirin are dangerous drugs. I don't think anyone would argue with that. A crime (I don't use that word lightly) is being committed if no valid therapies are being funded, supported, and eventually approved that do not include these drugs, and that seems to be the present case, undoubtedly because of collusion between government and the corporations that produce and sell these drugs. In short, corruption. Crime against humanity would not be too strong an expression to use, considering the number of infected people.

I believe that some day there will be a huge international scandal when the truth about the collusion between supposedly public officials and private drug companies becomes known, even if that collusion is only to the extent of shares in these companies owned by those officials. However, I don't believe that is the extent of the corruption. No, it goes much further.

It is a fact that trials of drugs that can combat HCV independently of SOC are not being funded, and the manufacturers of these drugs are afraid even to propose a trial that does not include SOC. This is obvious from the trials information websites. The funding and support going to new medications is going to those, like the viral gene inhibitors, Alinia, et cetera, that are testing the new medications together with interferon and ribavirin. Those that are not, like the anti-HV vaccine (which is not only preventative but curative), cannot find public funding and are not being supported by the larger medical institutions. What are they afraid of?

Is the prejudice for SOC and against anything else just because doctors and hospitals receive money for prescribing SOC? I think not. The corruption is more far-reaching. It goes all the way back to the AMA and the ways in which medical personnel are chosen for public office in regulatory and other public health agencies, and to the undisclosed pecuniary interests of politicians in supporting those companies whose stock they own, and their interest in defeating alternatives that could lower the value of their shares.

There is an enormous globalized corruption that has set in everywhere, and the terrible problem of treatment for hepatitis is part of it. Make no mistake about that.

[newleaf09]

it seems hard to keep this thread on topic.

Funding for trials comes from the pharmaceutical companies themselves.  There was an early level trial called Inform that used 2 polymerase inhibitors.  It was short,it's purpose was to see if patients could tolerate the PI's and the results for the short time frame were phenomenal.  Now that they are moving forward into more advanced  trials, they have split the 2 PI's into 2 trials, each with SOC.  As I understand the reasoning for the design change from 2 PI's together to 1 PI + SOC, is that the FDA will not approve a trial enrolling large numbers of people (phase 2 & expecially 3's, which can enroll thousands) to exclude the standard regimen.  They consider it inhumane to treat a serious disease with experimental drugs only and require the inclusion of a proven cure.  

I don't see collusion or corruption, just regulation and the restrictions that come with it.

[nygirl7]

I don't see collusion or corruption, just regulation and the restrictions that come with it. "

I have to agree whole heartidly with newleaf.  Had you been around this forum even five years ago you would have seen that all the drugs in trial did not pan out.  It was not the fact that they were not trying, they just did not come to fruition.

Now, these days you see the miracles of PIs shortening the term of treatment and also increasing the odds of succes and it is literally to me miraculous.  Watch an "Andiamo" who has treated 90 times win the battle!  Wow.

I thank God that there are guidelines and restrictions that come along with this tedious work otherwise God knows what people would willingly subject themselves to in the vain attempt to be healed with things that were not legitimate.

A crime?  I just don't see how any educated person can believe that we've come this far already in a few short years because big pharma is out to get us. Rather how far we have succeeded in closing the door to failure.

Business IS business after all and investors do expect to see profits in all aspects of the world - otherwise there is no push to get it done.  One little scientist with a good heart sitting in a lab is going to get this done.

[nygirl7]

One little scientist with a good heart sitting in a lab is going to get this done. "

Correction >>> Is NOT going to get this done.

[Willy50]

Mike, I have to possibly disagree with a few things said.  Like you I am also impatient.  I am a little frustrated that these things move so slowly but I also understand why.  There is little doubt that early approval of some of these compounds would save lives and it is tempting to look at the numbers and rationalize that is what should drive the approval process.  Even so, I understand that the FDA has to strike a balance..... I mean they have to attempt to satisfy both sides; the greatest speed and yet maintaining standards so that the drugs we end up taking are both safe and effective.

You may not be aware of it but Vertex DID attempt a trial (Prove 2) in which in 1 arm NO RIBA was attempted.  What happened was a 40% SVR rate.  That means that 60% were not cured and have possibly produced Telaprevir resistant virii that could resist further attempt to be treated with any PI's such as Telaprevir or Boceprevir.  
So you can understand that being to willing to try potentially weak or ineffective solutions to a cure may not really be doing people a favor..  I "get" your impatience but I want you to understand there are a few members of this forum who failed in that trial and they are not happy campers; they now can't get into other trials.  I know another member here whose trial shut down due to causing low neuts.  The drug compound WAS effective just not as safe as it should be.  Would you be the person who would approve it?  It's tempting but if one goes down that road too easily we could end up with a lot of borderline safe drugs.  My own father was a Vioxx patient that died a few years before the recall.  We didn't know at the time that it probably caused his death.

I write just to expose a few issues with being to proactive in approving drugs.

One thing that I would really like to see the FDA do for further HCV trials is allow the selected use of EOT-12 week PCR's  as equivalent to the official 24 week EOT PCR's.  For people on Telaprevir and Boceprevir I don't believe that there is significant difference between the  2 results, but they do end up further slowing the approval process.

By the way...... this is important to consider.  In one of the Berkson threads there was a link.  I Think it came from Berkson himself in an interview.  He asked the interviewer if the knew what it cost to get a drug approved nowadays?  The answer was 1 billion dollars.  I want to point out that anything that gets done needs money in a HUGE way.  Even early failures are immensely expensive.  Pushing forward without caution can cause an even worse result.  Take a look at the recall that Toyota is now engaged in.  There is no easy way.

best,
Willy

[jdwithhcv]

Crime against humanity?  Not so.  You are not entitled to demand that anybody invest in developing a medication simply because you do not want to try the available cure.  As for public funding, don't you live in Argentina?  How about approaching that government to fund the research you are demanding.  

[frespirit57]

Thank you, Willy, some of these people finally fond there place in life, the pro's and con's of this terrible treatment, i have Tx'ed,success, 4yrs clearled, there is a support group for Hep C people, but , i don't hear the truth, there just like here, they think their;  CEO's running a fortune 500 co. instead of thinking of the poor people who have had to make that fearful decision and hopeing they don't get all the side effects that the NP said,  maybe,perhaps,some, not most, but, you know ? I think they need to find another way to get rid of this Hep C. My life has been a mess ever since i treated, i'am homeless now, i hurt my shoulders coming off treatment, NOBODY, told me coming off treatment would be this bad, i lost 35 pds in 30 days, i went in to a deep depression, i was thinking of suicide, that's what i told the NP on the phone, she said; i should'nt of said that, they locked me up at the V.A. hospital for a couple of days gave me paxel, it didn't work , just made things worse, now i'am on disablity and living in a motel, i had money saved and a good job that is gone now, and i didn't make this up to sale another cure or sale my product which i don't have. you know, its bad enough that you have to take this drug and then you have to listen to the nut jobs too, i'am sorry i ever took this drug, Frespirit57