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Post Interferon side effects
How many are suffering from Post Interferon side effects? are there others or am I the only one
Have you had comprehensive testing for specific autoimmune disorders? My Rheumatologist at the University ran about 39 tests for autoimmune disorders and the Sjogren's came back positive. I have had Sjogren's for years, long before I was every diagnosed with Hep C, but I never knew I had it until this past August. I had all of the symptoms, though, and have had them for years and years. My docotor said the hep C triggered it. Some of the autoimmune disorders could be causing your symptoms. If you have an autoimmune disorder it would be beneficial to get diagnosed so you can start on treatment for it. I recently started on Plaquenil and am already feeling improvement.
It's interesting to simply compare notes, even where we have only our own situations and no real data or few studies.
I'm also aware of the opposite situation, such as you noted..... people who went to doctors with these symptoms and the HCV diagnosis was overlooked.
One friend was sick for a decade after seeing many doctors..... finally she went to an acupuncturist who told her on the first visit that something was wrong with her liver.
....And it turned out to be HCV,
My example was that I applied for life insurance and has a subsequent medical....which I barely passed due to slightly elevated liver enzymes. I (ignorant as I was at that time) suspected sexual transmission.......
The doctor argued with my concerns, did an antibody test and then failed to notify me when the elisa test turned up HCV reactive.
I just see plenty of example to make me question whether doctors *always* know best. I think it is the reason that many in this forum really push hard to get people to see the best doctors, such as hepatologists..
On that note, it is also a good reason to better inform ourselves about the disease, and there are a lot of "holes" in what we know about many of these post TX issues.
willy
I'm also aware of the opposite situation, such as you noted..... people who went to doctors with these symptoms and the HCV diagnosis was overlooked.
One friend was sick for a decade after seeing many doctors..... finally she went to an acupuncturist who told her on the first visit that something was wrong with her liver.
....And it turned out to be HCV,
My example was that I applied for life insurance and has a subsequent medical....which I barely passed due to slightly elevated liver enzymes. I (ignorant as I was at that time) suspected sexual transmission.......
The doctor argued with my concerns, did an antibody test and then failed to notify me when the elisa test turned up HCV reactive.
I just see plenty of example to make me question whether doctors *always* know best. I think it is the reason that many in this forum really push hard to get people to see the best doctors, such as hepatologists..
On that note, it is also a good reason to better inform ourselves about the disease, and there are a lot of "holes" in what we know about many of these post TX issues.
willy
Hello Willy50, regarding your comment: (FFH wrote)" I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues."
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I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I think the operative word in what I wrote about the rheumatologist's acknowledgement was "verbally acknowledged" (i.e., nothing regarding HCV was written in any assessment). I think there are some doctors who have seen enough to make this assumption on their own, but for some reason the medical field as a whole does not seem to want to acknowledge the damage...either of HCV or Interferon.
No, there were no tests "which clearly differentiated that damage was due to HCV and NOT treatment for HCV" that led the doctor to this verbal assessment; I assume she made it from my history, a history she sees over and over in others with HCV and interferon. For all I know she was holding back her thoughts on interferon damage as well.
Many people have their HCV diagnosed as a result of going to the doctor for their symptoms that end up being diagnosed as fibromyalgia, vasculitis, etc., and it is unbelievable that the doctor will always say it has nothing to do with the HCV.
It's also curious for me that doctors who have led clinical studies for HCV as a big part of their medical careers do not acknowledge this damage as due to HCV or the tx.
Having my debilitating symptoms pawned off as fibromyalgia and nothing to do with my HVC at the Mayo Clinic MN in 2003 prevented my decision to treat. I was not encouraged to treat either. Knowing what I know now I would not have waited 7 or so years.
But all I tell myself is that "it is what it is"...no going back. I just keep hoping to hang onto my post tx svr status.
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I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I think the operative word in what I wrote about the rheumatologist's acknowledgement was "verbally acknowledged" (i.e., nothing regarding HCV was written in any assessment). I think there are some doctors who have seen enough to make this assumption on their own, but for some reason the medical field as a whole does not seem to want to acknowledge the damage...either of HCV or Interferon.
No, there were no tests "which clearly differentiated that damage was due to HCV and NOT treatment for HCV" that led the doctor to this verbal assessment; I assume she made it from my history, a history she sees over and over in others with HCV and interferon. For all I know she was holding back her thoughts on interferon damage as well.
Many people have their HCV diagnosed as a result of going to the doctor for their symptoms that end up being diagnosed as fibromyalgia, vasculitis, etc., and it is unbelievable that the doctor will always say it has nothing to do with the HCV.
It's also curious for me that doctors who have led clinical studies for HCV as a big part of their medical careers do not acknowledge this damage as due to HCV or the tx.
Having my debilitating symptoms pawned off as fibromyalgia and nothing to do with my HVC at the Mayo Clinic MN in 2003 prevented my decision to treat. I was not encouraged to treat either. Knowing what I know now I would not have waited 7 or so years.
But all I tell myself is that "it is what it is"...no going back. I just keep hoping to hang onto my post tx svr status.
(FFH wrote)" I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues."
-------------
I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I'm not challenging you, It's more like challenging the doctor or the notion, and I'm not even really challenging. If such tests exist it would be nice to know what they are, and how they differentiate the damage caused from 2 possible sources.
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In one of the longer HCV post TX threads I recall posting some sort of link to suggest that Post Interferon Syndrome (PIS) may be a "syndrome". That means it is something that exists that modern medicine has not yet been able to prove or test for, and yet there is ample evidence that it may exist.....
Kind of like HCV...... (previously referred to as non-A, Non-B hepatitis) They could see that it existed, that it wasn't other distinct diseases, but until 89-90 they did not have a PCR which confirmed it's existence.
It seems like for many years I have seen people who complain about such symptoms and yet their labs all look fine, according to doctors. They seem to defy diagnosis.
IMHO it may be that this post TX issues may not just be one, but the linkage of a few issues, possibly separate distinct issues, which manifest differently in individuals. It may be like untangling drug interactions, it's hard to know specifically which drug is causing what, coupled with vitamin/mineral deficiencies, prior existing conditions, etc.
Most doctors are totally unaware of these post TX issues...... and therefore perhaps very naive. I think they just guess and most of us are not possessing evidence to argue with them.
Many times the response is..... just wait it out, you'll improve in time.
So my question is...... would this be an acceptable answer for a broken bone, an infection, severe depression, or condition which may threaten our ability to work or participate as husbands, wives, workers or productive members of a community?
I think people have to push back a little to get a better quality response from the doctors.
I'm just responding with a notion..... not studies or science. : )
FWIW I have also seen it described as interferon induced fibro or lupus. I think some doctors are pointing causation, but are unable to say exactly what the ailment is.
willy
-------------
I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I'm not challenging you, It's more like challenging the doctor or the notion, and I'm not even really challenging. If such tests exist it would be nice to know what they are, and how they differentiate the damage caused from 2 possible sources.
=================================
In one of the longer HCV post TX threads I recall posting some sort of link to suggest that Post Interferon Syndrome (PIS) may be a "syndrome". That means it is something that exists that modern medicine has not yet been able to prove or test for, and yet there is ample evidence that it may exist.....
Kind of like HCV...... (previously referred to as non-A, Non-B hepatitis) They could see that it existed, that it wasn't other distinct diseases, but until 89-90 they did not have a PCR which confirmed it's existence.
It seems like for many years I have seen people who complain about such symptoms and yet their labs all look fine, according to doctors. They seem to defy diagnosis.
IMHO it may be that this post TX issues may not just be one, but the linkage of a few issues, possibly separate distinct issues, which manifest differently in individuals. It may be like untangling drug interactions, it's hard to know specifically which drug is causing what, coupled with vitamin/mineral deficiencies, prior existing conditions, etc.
Most doctors are totally unaware of these post TX issues...... and therefore perhaps very naive. I think they just guess and most of us are not possessing evidence to argue with them.
Many times the response is..... just wait it out, you'll improve in time.
So my question is...... would this be an acceptable answer for a broken bone, an infection, severe depression, or condition which may threaten our ability to work or participate as husbands, wives, workers or productive members of a community?
I think people have to push back a little to get a better quality response from the doctors.
I'm just responding with a notion..... not studies or science. : )
FWIW I have also seen it described as interferon induced fibro or lupus. I think some doctors are pointing causation, but are unable to say exactly what the ailment is.
willy
I wasn't aware that there is an actual condition identified as Post Interferon Syndrome; which field of medicine has taken this under their wing (i.e., what type of doctor would one see)? I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues. Thanks
hi,yes,7years post 6months (successful) treatment still having problems,fatigue,joint bone and tendon pain(fibromyalgia)dizziness,am extremely forgetful,have slowed and jumbled thought processes,weight loss,permanent swollen glands sore throat and hoarse voice,low grade fever-always freezing cold or sweating,dry eyes and mouth,food/chemical/alcohol intolerances,anxiety,tinnitus,periphal neuropathy and I only sleep for 3 hours at a time.I have been diagnosed with Post Interferon Syndrome.
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