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Long term effects of interferon
Dear all,
My wife was treated for Hepatitis C virus in 2001, the first protocol in France 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 since ? 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 books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ? I
Any information will really be of great help,
With my best regards.
My wife was treated for Hepatitis C virus in 2001, the first protocol in France 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 since ? 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 books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ? I
Any information will really be of great help,
With my best regards.
Dear all,
Sorry for my late reply, I was in a location without access to the web,
Dear Desrt,
Thank you for your advice of coQ10, I have just got some an she will try it. Moreover, there is one study that has shown a beneficial effect of Q10 as a tension regulator. Among plants that she tried, one seemed to have given a positive effect on her natural defenses, namely Shiitake (an Asian mushroom), which is used to increase immune defenses of the body (when needed). As by chance the bigest world producer is (surprisingly) French, I tried their ingredient. There were many scientific papers that observed its effect on people who had a low immunity. When she tried it, the urinary lithiasis decreased during few months, which is not neglectible.
Dear Bulldoggergall,
Thanks a lot for your encouragments, it is warm to our heart to know that you think about us, really. We do not give up and I will be in contact tomorrow with a scientist in a Paris Hospital who is a specialist of lithiasis and with whom I had mail exchanges. I will keep you posted.
Dear PrettyPoisonNoMore,
We are sorry of what happened to you with the treatment. My wife has apparently no thyroïd issue, as all thyroïd hormones were at normal levels. Her hypotension has another origin that nobody has found up to now. I hope that your thyroïd treatment has solved your problems.
To all of you, thank you for your messages and help, many thanks on behalf of my wife, I will continue to read your forum and post you news of her,
Warm regards from France
Sorry for my late reply, I was in a location without access to the web,
Dear Desrt,
Thank you for your advice of coQ10, I have just got some an she will try it. Moreover, there is one study that has shown a beneficial effect of Q10 as a tension regulator. Among plants that she tried, one seemed to have given a positive effect on her natural defenses, namely Shiitake (an Asian mushroom), which is used to increase immune defenses of the body (when needed). As by chance the bigest world producer is (surprisingly) French, I tried their ingredient. There were many scientific papers that observed its effect on people who had a low immunity. When she tried it, the urinary lithiasis decreased during few months, which is not neglectible.
Dear Bulldoggergall,
Thanks a lot for your encouragments, it is warm to our heart to know that you think about us, really. We do not give up and I will be in contact tomorrow with a scientist in a Paris Hospital who is a specialist of lithiasis and with whom I had mail exchanges. I will keep you posted.
Dear PrettyPoisonNoMore,
We are sorry of what happened to you with the treatment. My wife has apparently no thyroïd issue, as all thyroïd hormones were at normal levels. Her hypotension has another origin that nobody has found up to now. I hope that your thyroïd treatment has solved your problems.
To all of you, thank you for your messages and help, many thanks on behalf of my wife, I will continue to read your forum and post you news of her,
Warm regards from France
Dear Melville:
I am truly sorry that you wife has the long term side effects. I also became Hypothyroid by the end of treatment with a TSH of around 63 by the time I figured out what was wrong. I was not predisposed to thyroid disease. I do not have the anti bodies for Graves Disease or Hashimotos thyroiditis. My hypothyroidism is due soley to the treatment drugs. She needs to see a good endocrinologist that will treat her thyroid issues and get her TSH down to around 2 for her to even begin to feel better. No one would feel good with the levels that she has. The thyroid controls many body functions at the cellular level, and she needs those hormones at the proper level. The longer the hormones are out of whack, the worse you feel and the longer it takes to get them straightened out. I have to take a combo therapy of T4 and T3 to feel well. I had to experiement with lots of doses to get it right, and it takes about 4 months to tell if a dosage is right.
I am truly sorry that you wife has the long term side effects. I also became Hypothyroid by the end of treatment with a TSH of around 63 by the time I figured out what was wrong. I was not predisposed to thyroid disease. I do not have the anti bodies for Graves Disease or Hashimotos thyroiditis. My hypothyroidism is due soley to the treatment drugs. She needs to see a good endocrinologist that will treat her thyroid issues and get her TSH down to around 2 for her to even begin to feel better. No one would feel good with the levels that she has. The thyroid controls many body functions at the cellular level, and she needs those hormones at the proper level. The longer the hormones are out of whack, the worse you feel and the longer it takes to get them straightened out. I have to take a combo therapy of T4 and T3 to feel well. I had to experiement with lots of doses to get it right, and it takes about 4 months to tell if a dosage is right.
Damn your wife is a strong woman...and she is so very, very, very lucky to have a husband who is not only UNDERSTANDING AND SINCERE AND CONCERNED, but who is also willing to fight for her recovery and willing to open the doors to the closed minded docs in your country!
The both of you deserve blessings from above...and know that my heart is with the two of you!
Good luck, stay here, keep us posted!!!
The both of you deserve blessings from above...and know that my heart is with the two of you!
Good luck, stay here, keep us posted!!!
You might try reading up on the supplement CoEnzyme Q 10 (CoQ10). It's pricey and gives no immediate, obvious, dramatic results, but is something that we need for good health on a cellular level and is something that we stop absorbing so readily from natural food sources as we get older. Good Luck.
Dear all, Lalapple, Trinity4, Bulldoggergal, jmjm530,
Many thanks for your comments and helpful words. Fortunately, the treatment IFN/Ribavirin did worked after 6 months of nightmare. Since 2001, my wife has seen so many doctors and specialists, made so many examinations, who were all "normal", but symptoms are still there, and she is exhausted to live a part of her life in hospitals. Faintings occurs so often, as soon as she is making a physical activity (even restricted like walking 30 minutes) or when she has pyelonephritis that weaken her so much. She does no want to restrict her life being lying in her bed. The last fainting was three days ago when doing shopping. She spent 6 hours in an emergency department just to learn that she was biologically inside the standards criteria (but with hypotension at 7.5 and awfull headache).
She does not want to feel sorry for herself, as she is a fighter, like she has always been in her life. She wrote a book after her treatment, with so wonderful texts, very poetic and emotional, and beautiful pictures, and was edited in France in 2007. She wants to recover her normal form when sometimes her body is like a jail, a one ton armour that oblige her to stay lying in her bed with pain and exhaustion.
In France, the long-term effects of such treatment are taboo and we found no doctor that recognized that it could be a possibility. She saw many specialists, who observed the problem organ by organ, and refused to consider the possibility of tx hard after-effects. One of the most known hepathologist wrote us that it was "imposible". And people do not express themselfs in forums, sometimes because they do not wat to discourage others who hesitate to take the tx. At the end, she thought that she was alone to suffer from this. But we discovered this week different forums, especialy yours, where other testimonies show that, yes, this is not in her mind, this is not only "psychologic" and that positive mind is not the answer (however, she always had positive mind in her life). I have read recent scientific papers that acknowledge the side effects of interferon on brain, mainly by increasing the level of pro-inflammatory cytokines leading to an alteration of basal ganglia function in the brain, leading to fatigue, insomnia, depression and other symptoms, but none has worked on the possible remaining effects after treatment. And how to manage them. Today this is our main concern, she wants to recover at the maximum her form, as all of you who have experienced the same issue. We are searching in scientific litterature all the studies that could help and give hope, but they are not numerous. May be when the labs, like Roche, will recognize these long-term side-effects, there will be enough money to work on it, but today, this is not the case. There will be so much to say.
One more time, thanks for your comments and testimonies, if some of you have experiences treatment or alternative medicines that have helped to relieve exhaustion and "brain fog", tell us. From our side, we will share everything we will find elsewhere.
With my best regards from France.
Many thanks for your comments and helpful words. Fortunately, the treatment IFN/Ribavirin did worked after 6 months of nightmare. Since 2001, my wife has seen so many doctors and specialists, made so many examinations, who were all "normal", but symptoms are still there, and she is exhausted to live a part of her life in hospitals. Faintings occurs so often, as soon as she is making a physical activity (even restricted like walking 30 minutes) or when she has pyelonephritis that weaken her so much. She does no want to restrict her life being lying in her bed. The last fainting was three days ago when doing shopping. She spent 6 hours in an emergency department just to learn that she was biologically inside the standards criteria (but with hypotension at 7.5 and awfull headache).
She does not want to feel sorry for herself, as she is a fighter, like she has always been in her life. She wrote a book after her treatment, with so wonderful texts, very poetic and emotional, and beautiful pictures, and was edited in France in 2007. She wants to recover her normal form when sometimes her body is like a jail, a one ton armour that oblige her to stay lying in her bed with pain and exhaustion.
In France, the long-term effects of such treatment are taboo and we found no doctor that recognized that it could be a possibility. She saw many specialists, who observed the problem organ by organ, and refused to consider the possibility of tx hard after-effects. One of the most known hepathologist wrote us that it was "imposible". And people do not express themselfs in forums, sometimes because they do not wat to discourage others who hesitate to take the tx. At the end, she thought that she was alone to suffer from this. But we discovered this week different forums, especialy yours, where other testimonies show that, yes, this is not in her mind, this is not only "psychologic" and that positive mind is not the answer (however, she always had positive mind in her life). I have read recent scientific papers that acknowledge the side effects of interferon on brain, mainly by increasing the level of pro-inflammatory cytokines leading to an alteration of basal ganglia function in the brain, leading to fatigue, insomnia, depression and other symptoms, but none has worked on the possible remaining effects after treatment. And how to manage them. Today this is our main concern, she wants to recover at the maximum her form, as all of you who have experienced the same issue. We are searching in scientific litterature all the studies that could help and give hope, but they are not numerous. May be when the labs, like Roche, will recognize these long-term side-effects, there will be enough money to work on it, but today, this is not the case. There will be so much to say.
One more time, thanks for your comments and testimonies, if some of you have experiences treatment or alternative medicines that have helped to relieve exhaustion and "brain fog", tell us. From our side, we will share everything we will find elsewhere.
With my best regards from France.
Very sorry about your wife, and yes it's hard to escape the fact that some people feel quite well prior to treatment and then all of a sudden nosedive during and after treatment. Whether or not all the symptons you mention are interferon related, any doctor can say for certain that this is "impossible" should, well, have their head examined.
It's a difficult task in front of you because very little if any research dollars has gone into either post treatment symptons or how to treat them. And as you've found out, sometimes the hardest part is to get a doctor to even acknowledge that interferon was the cause.
I certainly don't want to discourage you from finding a doc who will try and work with the interferon angle, but personally I gave up using that approach as none of the docs seemed to get it. So I simply stopped telling docs I treated and just gave them the symptons. That way the focus was on the symptons and not the patient's analysis of the situation which they will end up disputing.
Here's a link to one of our health pages that contains a number of anecdotal accounts of post treatment side effects. Possibly you will find something useful.
http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64
It's a difficult task in front of you because very little if any research dollars has gone into either post treatment symptons or how to treat them. And as you've found out, sometimes the hardest part is to get a doctor to even acknowledge that interferon was the cause.
I certainly don't want to discourage you from finding a doc who will try and work with the interferon angle, but personally I gave up using that approach as none of the docs seemed to get it. So I simply stopped telling docs I treated and just gave them the symptons. That way the focus was on the symptons and not the patient's analysis of the situation which they will end up disputing.
Here's a link to one of our health pages that contains a number of anecdotal accounts of post treatment side effects. Possibly you will find something useful.
http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64
Forgot to tell you that I came out with the thyroid, autoimmune, fibromyalgia/cfs, raynauds, srojens (sp?), teeth issues...from treatment. Can't say that I wasn't predisposed to any of those issues though... What's done is done...I will treat again. The HepC is worth stopping...and worth the risk of stopping it if something new comes out. Good luck!
I believe that her health issues are truly from the interferon and/or ribavirin...probably the ribavarin more than anything.... Unfortunately, these are the risk factors we take when choosing to treat with these drugs...same with cancer treatments...and any experimental treatments. I did the intronA/riba combo when it was still in the FDA trials.
I think the reaction ones body has is individual...predisposed to the problems and the treatment hurried it up...similar to what was described above. I don't believe it is all in her head...that's for sure...or that she can will it away. Attitude is VERY IMPORTANT though so she should be getting some mental help to deal with the massive change in her lifestyle.
It's time to accept the cause...realize that not everyone has the effects your wife did and some even have worse (unfortunately!!). But...we made the choice to try the treatment and the "cure" is the ultimate goal so if she did get clear the virus...something good did come of it. I didn't clear. It is NEVER gone from anyone...it is always around...just not "active" which is good enough for anyone!
Take her to docs to have her other health issues evaluated and treated and hopefully in time she will be able to overcome this disastrous outcome... As far as "does anyone know and/or are they doing anything about it..."...again, yes, they do know and yes they take these statistics into consideration. The drug companies can never be trusted to tell you the complete truth about any drugs effects on everyone who has taken it...can you imagine the marketing fiasco? $$$ still drives the drug industry but at least other countries do allow people access to newer treatments...the USA is about 10 years behind! xoxoxox
I think the reaction ones body has is individual...predisposed to the problems and the treatment hurried it up...similar to what was described above. I don't believe it is all in her head...that's for sure...or that she can will it away. Attitude is VERY IMPORTANT though so she should be getting some mental help to deal with the massive change in her lifestyle.
It's time to accept the cause...realize that not everyone has the effects your wife did and some even have worse (unfortunately!!). But...we made the choice to try the treatment and the "cure" is the ultimate goal so if she did get clear the virus...something good did come of it. I didn't clear. It is NEVER gone from anyone...it is always around...just not "active" which is good enough for anyone!
Take her to docs to have her other health issues evaluated and treated and hopefully in time she will be able to overcome this disastrous outcome... As far as "does anyone know and/or are they doing anything about it..."...again, yes, they do know and yes they take these statistics into consideration. The drug companies can never be trusted to tell you the complete truth about any drugs effects on everyone who has taken it...can you imagine the marketing fiasco? $$$ still drives the drug industry but at least other countries do allow people access to newer treatments...the USA is about 10 years behind! xoxoxox
not sure if Interferon could be the cause of all those side effects. but i was informed that treating with Interferon has the potential to cause someone with a certain type of hereditary disease waiting in their genes to get it earlier. such an example can be diabetes. if someone was bound to get it in later life, Interferon can cause that individual to get it earlier.
autoimmune problems esp with dermatitis and thyroid problems may also arise cause by long term Interferon exposure. treatment is hard has changed my life, mostly mentally and emotionally, i've learned to acquire a new attitude towards life. sometimes life is all about attitude.
your wife needs to live a normal, happy, and healthy life as normal as before she treated. expose her to people people people, she seems like a very social person. make her forget what she's been through, it's been 8 years already, at most, it should just seem like nightmare. is she rid of the virus? if so, big congrats, if she is still negative for the the hcv pcr, then she's essentially cured!
good luck
autoimmune problems esp with dermatitis and thyroid problems may also arise cause by long term Interferon exposure. treatment is hard has changed my life, mostly mentally and emotionally, i've learned to acquire a new attitude towards life. sometimes life is all about attitude.
your wife needs to live a normal, happy, and healthy life as normal as before she treated. expose her to people people people, she seems like a very social person. make her forget what she's been through, it's been 8 years already, at most, it should just seem like nightmare. is she rid of the virus? if so, big congrats, if she is still negative for the the hcv pcr, then she's essentially cured!
good luck
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