This forum is for questions about medical issues and research aspects of
Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new
Hepatitis Social/Living with Hepatitis forum
I'm especially interested in the mystical goat nads. Do you know where I can get some?
I think this is the first step in many...but I feel so much better finally getting this off my chest.
HAAAAAAAAAAAAAAAAAAAAAA!
Willow
I was first introduced to interferon by some friends I met here. Although I was scared at first, and a little skeptical, I really have come to believe in this stuff. At the beginning I kep thinking "Does this cr@p really work? Will it help ME?"
I had nothing left to lose, so I thought I'd give it a chance.
In the beginning it was hard giving up my old ways, I denied I had a problem with hep C. As reality set in, I realized that I needed to do something. I started taking it one day at a time, until I got 16 weeks under my belt.
I'm living testimony that interferon really worked for me. I hope and pray (sincerely) that others will be helped by this drug, or something even better.
So I've lost a few brains cells.....I've regained a liver.
Where do I find these? Might be some kinda fun Houston....
I've never met anyone who kicked a cat
NO
or threw tomatoes at cars
Maybe - you won't tell the cops will you?
or stopped brushing their teeth
Once or twice
or farted in church
OH Gawd, you're not the one sitting behind me in the "pew" are you?
Yours in truth,
Mr Liver
Go away and post somewhere else. Interferon sucks, yes, but it beats the hell out of the alternative. And it did me some good, even without SVR. I think it will be eventually proved that IFN changes the virus enough to slow down the destruction...making the whole nine yards of **** worth the trouble.
This link will tell you that 3% will die form HCV.
http://www.iwannaknow.org/basics2/hepc.html
it might be true …depends what system you would like to consider.
And how many parameters you would like to include in your model.
Lets simplify our estimate …
Usually you would like to include:
1. life expectancy = current world average = 67 y.
http://en.wikipedia.org/wiki/Life_expectancy
2. Number of Liver donors who would like to donate liver and is taking good care of it.
+ you would like to consider you blood type and so on, so you could wait a little longer.
What is current waiting list?
3. Most of the people will develop end stage of LD after 30-40 years with HCV
There are some tricks though:
4. How you would like to count border condition when you will develop different health problems in different body organs because of HCV ? and your life expectancy will go down because of other organs.(your body is a system one organ does not work all other organs have to compensate if they can)
Now let us move life expectancy to 90y. lets count that you have HCV from 18 y.o.
And let us count that poor liver function will contribute to different problems with your health and that we get less liver donors or number of HCV infected people will grow.
...percentage of people who die from HCV will grow tremendously.
Are you really improving quality of life when you will delay your treatment?
HCC almost exclusively forms when the liver is cirrhotic. Only 20 % of those with HCV will ever progress to that stage. And then, only a small minority of that 20% will ever develop HCC. And out of that small percent a certain number will be cured of their HCC through tx or transplant. So, you see the fear of HCC is overblown in your post.
There are appx 5 million Americans who have been infected with HCV. Last year 10,000 died.You do the math. While at it, go look up the stats for HCV mortality. Either the Census Bureau, or WHO should have them. If not, just Google it.
It's too bad how close-minded you are. Apparently anyone with any content in their post that you don't like has ruined the thread. First off, this is not your website,forum,nor thread. And if you don't want to hear anything negative about INF, then go back and hide your head in the sand. I could care less what you think.
Yours in truth,
Mr Liver
How many sides you will get with advanced liver damage vs beginning?
What difference in sides 30-40y.o vs. 50-60y.o?
Find me statistics that people who have a liver damage stage1 with 1%-5% of damage have less or equal chances for fast LD progression compare to people with stage 3 with 33% or more percents of liver damage.
If I have stage 1 and 30-40 y.o. and I will start treatment with interferon I have next advantages:
1. If treatment is not effective my liver damage might stop and could be reversed to stage 0 (which will give me 5-10 more years to progress to stage 1 again)
2. After non successful treatment I do have time to wait and will be religious about food I eat and will monitor my liver very closely.
3. If treatment failed I have enough time for new treatment and will do interferon treatment as needed or may be different combination of treatments.
Disadvantages:
Quality of life? What life?
Should I wait when LD will go to the end stage and do not do anything about it?
I do not think so… Would not it be disappointing when I will start treatment at stage 4 and 50 y.o and realize that I am none responder? Every year you wait you will reduce your SVR chances. If you never treated how you know that you are not a Rapid responder?
Find your stats and we can talk dipper. Maybe your arguments would be good enough and I will go off treatment next day you prove me wrong.
i thinks he is saying why tx with a shotgun when a laser is on the very near horizon?
it is all ones perspective. to waste one year of my life on a tx that has only a 45% to 50% chance of working when to wait 1 or 2 years to see how the new tx will work makes no sense to me.
i feel the chance of svr with the new tx will be so much higher than it is now so waiting most likely will improve my odds. the drug companies feel so stong about it the have invested many millions to get a share of the profit. it is like put you r money where your mouth is. they did.
also i had zero sides from hep even at stage 3?
Perhaps me showing my bias, my virus, my tries with IFN to save my liver is what makes you think you will get someone here to buy whatever you are selling. I hated IFN as much as anybody, but it is a bit stupid to whine about it, kind of like bitchin about the chemo that kills your cancer or the PI that keeps the AID virus under control. Makes us here an audience you might want to skip, try the sell somewhere else.
Willow
I mean, in particular, your references to the "less than 3%" who will die from hcv, the "vast majority " who have not had their lives saved, the "most" who did not need treatment, the "barely nudged" mortality rates, and that treatment should only be undertaken when "absolutely necessary."
What are your references or credentials, please?
Regards,
Kit
dointime
Just my opinions. I am not a doctor. I do technical research in another field.
Regards,
Kit
If you believe that at stage 1-2 you do not have any scarring …I do believe in magic too.
What you definitely would like to avoid is bridging of your scars …if I have had stage 3, I would be treating right away. At stage 3 your liver has 34-67 of ok liver cells you could guess that from this point it will progress fast. I do not know if an average person can even wait for 10-20 years with stage 3.
Yes it is true that Pegasys is toxic for the liver, so with stage 1 you will have more chances and fewer sides … (search Roche site). I did have sides from HCV (fatigue, depressions, rash, hair loss, and yellowing of the skin )
It sounds funny but my depressions have gone away a few weeks after beginning treatment! I do not care what people think about me and feel very good emotionally.
You might wait for new drags, this is an option. But there are no guaranties that a new treatment will come in time or will have fewer sides. If you did not try it, how you could know that it is bad?
…everyone has a choice it is not a jail sentence.
And again, this is just my opinion and my choice.
It's everyones,willow. Everyone's. get it ?
Interferon has next global benefits:
• Psychological – once you went though treatment you will become a stronger person than you were before. How many people can handle 48-72 weeks of interferon? If you had depressions before, after the treatment any depression would be insignificant!
• Liver damage might regress – at list you will get additional time to live. At the most, there will be no virus and you already know what you should do with your health.
• Interferon and cancer – it will cure you from different cancers like melanoma for example… some people do not know that they have had melanoma until it is too late.
http://www.cancer.med.umich.edu/cancertreat/skincancer/interferon_treatment.shtml
• Interferon will clean the house from some other viruses and it known for a very long time … example:
http://jvi.asm.org/cgi/reprint/47/3/626.pdf
• While on Interferon you will get educated – some people would blame interferon for everything even for the aging process?! But you will be forced to learn more. So you can separate side effects from interferon and from other drugs.
P.S. The Goat Nad thing still cracks me up
Yours in truth,
Mr Liver
Willow
Why would not you risk with less probability of permanent damage at early stage of LD and/or at younger age? As a reward you will get higher probability of SVR.
Would you rather prefer higher probability of permanent damage and fewer probability of SVR? I do not think that age and liver damage will make you stronger and/or less prone to Sides.
Interferon – is a substance which modifies your immune system and is responsible for the virus killing ability.
Riba (or new drug which will replace it) – is a substance which is able to block replication.
I do not see any replacement for Interferon, it seems that you will face interferon anyways …why do not give it a chance while you are younger and have less damage?
To say that it is a refreshing change would be an understatement. I am not going to put any references in here. If you are motivated enough, and it matters that much to you, you will check up on what I have to say anyway.
"Why would not you risk with less probability of permanent damage at early stage of LD and/or at younger age? As a reward you will get higher probability of SVR."
Age does not have any impact on SVR outcomes until over the age of 60. There is neglible differences in SVR outcomes from stage 1 to stage 3. Stage 4 is when the statistics start to show a lower svr rate.
"Would you rather prefer higher probability of permanent damage and fewer probability of SVR? I do not think that age and liver damage will make you stronger and/or less prone to Sides."
Side effects and their severity have not been linked to liver damage, nor age. There are some limited studies that do show cirrhotics have a greater chance of severe sides when compared to stages 1 thru 3. Nothing conclusive,however the last time I looked.
I have seen IFN cause permanent blindness. And severe permanent neuropsychiatric problems. Permanant autoimmune disorders. Destroyed thyroid glands. Heart attacks. Lung removal. Lost jobs. Lost friendships. Broken marriages. Broken homes. Financial loss to the point of foreclosures and bankruptcies. I could go on and on. These are all things that should be considered before embarking upon tx. There is absolutley no reason to treat at stage 1.. the risks FAR outweigh the possible rewards.
"I do not see any replacement for Interferon, it seems that you will face interferon anyways …why do not give it a chance while you are younger and have less damage?"
I answered this above essentially. Future therapies of IFN combined with PI will have a greatly reduced tx time. Geno 1's will only be taking IFN for 3 months. Tx may be as short as 1 month for G2 and G3 This alone is worth waiting for if you can afford to. The less time on those poisons the less chance for permanent damage from the drugs.
As a stage 1 you will see much better therapies available long before you compromise your chances at SVR.
Yours in truth,
Mr Liver
As suggested, treatment does not come without significant baggage -- sometimes permament -- and therefore the risks of treatment have to be weighed against the potential rewards of around a 50-50 chance of SVR in genotype 1's. And where I come out -- and good minds disagree here -- is that SOC at this point in time -- with shorter tx protocols on the horizon -- does not make sense for anyone (especially a geno 1) unless they have significant liver damage.
In addition to some of the risks mentioned, at the end of this post are some anecdotal accounts of side effects -- both during and after treatment -- taken from this discussion group. Important reading for anyone trying to make a treat or not-to-treat decision.
Lately, there seems to be some polarization on the treat (or don't treat issue) -- the "good" interferon and "bad" inteferon issue. Hopefully, people realize that it's not a black or white thing. As many have stated, interferon is "toxic garbage" but it's also garbage that has and potentially can save lives. So, at least to me, it's not a matter of whether or not treatment(interferon) is good or bad, it's a matter of whether or not an individual, given their stats, should treat or not. That doesn't make me or anyone else "anti-treatment" because they don't believe in universally treating. The medical profession itself is now divided on this point.
Some remarks on the "Abbas" issue, that seems to have catalyzed much of this.
I'm not a seer, so I have no idea if Abbas is Abbas -- young Muslin boy with serious post tx concerns -- or if Abbas is an elderly retired lesbian Marine living in Oakland who likes to play games on the internet. But for that matter, none of us really know who most of us are here with a final degree of certainty.
That said, I tend to take people at their word, unless they demonstrate otherwise, or engage in personal attacks against others -- which Abbas has not done to my knowledge. We had another poster -- English also second language -- who also was roasted by many here and called an "imposter" and worse. His screen name was "Niceguy".
Remember "Niceguy"? Well, for those who have been around, we now know -- as well as anyone can know -- that "Niceguy" is as his name suggests -- turned out to be a niceguy, whose posts were initially misinterpreted -- the language and cultural differences no doubt playing a role why he was initially roasted.
Why is "Abbas" opening up so many threads? I have no idea but might speculate that he's not familiar with net/cultural protocol and may be confusing threads with comments fields. Just a speculation. The fact is that the young man appears to be in pain and is venting his pain against interferon. Rational? Maybe not, but it is understandable. And why is Abbas expressing himself as a frantic, angry young man with language/cultural differences, as opposed to to a more staid, rational and mature posting style? Maybe because he is a frantic, angry young man with language/cultural differences? Just a guess.
Again, could be completely wrong on Abbas, but for those that question my judgement here, I ask them what was their judgement on "NiceGuy". Well, I'm at least hitting 50-50 in this regard :)
Here are the the threads on post treatment side effects, mentioned previously. Hope everyone is otherwise enjoying their summer as best they can under their individual circumstances.
All the best,
-- Jim
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
Am I misunderstanding you, or Jim?
Be well,
-- Jim
Thank YOU!
Yvonne
-----------------------
I re-read my post, and now better understand your response. Without the context of the posts re Abbas (mine and others) over the last few days, the meaning was a bit obscure. In fact, you summed it up in one sentence (see above) better than I could with my ramblings. Add that Abbas is from a different culture and not writing in his native language and I just don't get some of the responses he has gotten.
LadyY, Thanks and you had some wise words yourself on this topic as well.
----------------
As the funny rabbit once said -- "that's all folks" on this one.
-- Jim
Everyone has their own priorities I guess … and everyone has some important organs to care about.
It is matter of perception when and how to draw the line but at some point we have to.
:-)
Back to interferon.
There will be no guarantee that everyone will treat 3 month with interferon. Even some rapid responders will not get SVR with current treatment where Riba is blocking replication and does it well in some individuals. If I knew that there will be replacement for interferon I would wait for another 5 years, if I was waiting for 30+ why would not I wait a little more?
If I become a none-responder with the new drug will the old set of interferon and riba help?
Nobody knows…
…at the same time who knows what new drug will block besides HCV?
So I will take my chances with current treatment.
…Sorry I just do not see how replication blockage would be comparable with antiviral abilities of interferon and how it could cut treatment duration to 1-3 months.
Example: You cleared the virus in 1week +36weeks(to make sure all virus representatives are dead)=37?
What you will get most definitely is 24-48 weeks treatment for 1a/b but hey if you are rapid responder you could treat 24 weeks also. Some other people believe that all liver cells had to be replaced with new once without virus…
I wish it would be true that once I get older, I will not develop any chronic health problems and will be less or equally prone to side effects from “life”(like fatty liver…or osteoporoses…or…) or from any treatment.
Dad points to his penis and says son, this is a penis, ......in fact, this is a magnificent penis!
Well the next day the little boy is out on the playground and he asks his friends if they know what a penis is. No one knew, so he pulled done his pants and pointed and said this is a penis,........in fact, if it were 3" shorter it would be a magnificent penis!!!
http://www.medhelp.org/forums/Hepatitis/messages/47105.html
… if an individual would like to discuss how s/he feels and will ask questions – somebody will help him/her/them.
The other thing that arouses my suspicion is that Abbbas' English is so rudimentary that it would seem improbable that he could have read and understood the difficult medical articles he sends us. My French, for example, is slightly better than his English, yet it would take me weeks to digest the sort of material he happens to just discover overnight. Niceguy, on the other hand, always appeared honest and sincere, albeit frightened and neurotic. I never doubted his validity for a moment. Nice guy is a nice guy, but I really believe that the chances are 90% that Abbas is a fake. At least that's my take on it. In any event, given our responses, it seems odd that anybody but a spammer would continue to cut and paste more BS the way he does.
---------------
Then you and I were in a distinct minority, as many of the same things being said about Abbas, were said about Niceguy. Maybe you weren't here when Niceguy first made the scene, which was pre-treatment.
Nice guy is a nice guy, but I really believe that the chances are 90% that Abbas is a fake.
-----------------
Again, I'm not a seer, and you may be correct -- but given your premise, what about the 10% chance he is sincere? Don't you think an email to MedHelp and a quick IP check by them is better than simply branding someone a fake on suspicion?
And don't you think that if Abbas is a pawn of this Dr. Blaylock, that he would have referenced Blaylock's web site, well before this time, months before this time?
You see, here I am playing the same game you are, of amateur detective. It might even be fun if not the possiblity (10 per cent or not) that it's a genuine and sincere human being we're talking about and not some sort of detective game.
Anyway, I said I'm done on this topic, so best I follow my own words.
-- Jim
Maybe you change your mind.
Ina
-- Jim