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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.
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.
Please get back on topic, and again, if you have something personal with someone, either ignore it, take it to PM or report it.
Emily
Emily
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.
~eureka
"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.
~eureka
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.
Mike
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.
Mike
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,
Jeff
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,
Jeff
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.
Mike
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.
Mike
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.
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.
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