At 10+ years post-tx SVR, I have a lot more health problems (hypertension, cholesterol, insulin resistance, neuropathy) than I did before txing. My question is, "How (if even possible) do I separate out which problems stem from PEG Ifn / riba tx, which are from carrying the virus for almost 30 years (minimal fibrosis progression no extra-hepatic manifestations), and which are problems that might have been set to manifest now regardless due to age/diet/lifestyle ?"
So those are the three I will always refer back to when discussing post-tx issues: IFN, the virus, age.
I believe most people's post-tx health problems may come from some combination of these factors, but without decent studies, how do we untangle it?
"How (if even possible) do I separate out which problems stem from PEG Ifn / riba tx, which are from carrying the virus for almost 30 years (minimal fibrosis progression no extra-hepatic manifestations), and which are problems that might have been set to manifest now regardless due to age/diet/lifestyle ?"
That is a good question. I can see where is may be difficult in your situation.
For me it was easy because I had all of the symptoms long before I treated, so I knew they were not treatment related. In addition, I also used my knowledge about the specific diseases/disorders to ascertain if they were Hep C related or age related. For example, there is absolutely no diabetes in my family, anywhere, even distant relatives or distant grandparents. I was thin and relatively young when my blood glucose started trending up. My diet was extremely healthy. There was no reason for my blood glucose to be trending up except for the IR from the Hep C.
I think separating out what caused what is more difficult if one does not have symptoms prior to treatment or if one has not been diagnosed with something prior to treatment. Plus, some problems are age or gene or diet or environment related.
I strongly feel that there should be studies on large groups of people to determine which problems are Hep C related, which are Hep C treatment related, which are age or diet or exercise or gene or environment related, and which are a combination of several factors. Right now there seems to be a lot of ignorance about the subject and that really needs to change in order for people to get appropriate care.
The one doctor I've actually gotten a thoughtful reasoned response from concerning post-tx problems was my neurologist. He asked me what the timing was between end of treatment and onset of neuropathy. Because of the time elapsed between EOT and onset of the PN, it probably wasn't caused by the IFN.
There may not be hard proof ever. With Hep C it is tough to know, ditto with age and likewise with interferon.
I am not aware of any hard and fast tests which would achieve that proof. This is one reason that discussing this is difficult;
1) people with sides that showed up after TX may feel that they can blame TX
2) many people, doctors included are very comfortable, or more comfortable with blaming the virus than a medication or treatment.
Who can prove either way decisively and based on what? I'm just saying...... medical opinion can be skewed
Addressing desrt; (and it's understood I don't claim to have any knowledge or assert I am right)
I had several issues post TX, pretty mild, but some non clinical fatigue; hey, not enough for a doctor trip, but enough that I wondered..... I'm 60 now and do physical work, so who knows? I don't think it was significant.
When I went to get screened, I found out I had heart arrythmia. and I immediately figured out the cause. I had been taking tonic water with my water....using it prophylactically because I had some night leg cramps.
Leg cramps can be aided by quinine, but when I found out I had the heart issue.....I also did some googling and found out quinine also caused heart arrythmia and some other issues. I quit the quinine and my EKG's...... I've had at least 5 at intervals during the trial....are all normal.
Why do I bring this topic up? Because I saw a list of people who were affected by quinine by age demographic....... no age group had any issues..... oops..... until you got to age 60...... and then 100% had these issues....... I guess there is something about aging......
and it likely plays into part of this equation. It may mean the drugs hit us harder..... it may mean we don't reset to default as easily if we get out of adjustment. Maybe we don't metabolize them, maybe we have other deficiencies, vitamin B, D, seratonin, testosterone, whatever..... but drugs affect older people differently than younger.
I'm in fantastic shape (hahahah; for 60 anyway)...... but the quinine still affected my like any other old guy. : )
(desrt) You have neuropathy? Well now, so do I. And I have not taken interferon. I HAVE taken rIbavirin and the two trial drugs.
I initially blamed the RBV, since it is considered an antiviral and the class itself can be associated with neuropathy,
But wait a minute....neuropathy can also be associated with diabetes.
Oh yeah..... HCV can also be associated with inflammation....such as caused by HIV or HVC and I'd guess perhaps HVB as well.
It turned out that in my looking into my neuropathy I discovered that HIV patients also had it caused by some nucleosides, and I was treated with a nucleotide inhibitor. Who knows? Maybe it wasn't the riba.....
I would also mention a part of this could involve pre-existing/early/preclinical/latent kind of existence that the drugs might exacerbate.
Now, it seems to me that some doctors "know" that the drugs can't cause these issues and so they just tell people, year, you had it pre-existing. They may not have any proof.
Thing is...... if it was latent or not significant....not an issue and it becomes so after TX, I think one might be taking some liberties asserting the TX had no role in the damage.
Pooh...... I hope I am not being too argumentative. I agree with much of what you wrote in general.
I think I had HCV inflammation that may have caused the beginnings of my neuropathy. And it might have gotten worse if I had not treated.....
And it probably might have gotten worse with age..... and worse due to extended inflammation. but I have no proof of any of these.....
I just know that it ramped up dramatically during TX, and that as soon as I stopped the drugs I have very slowly been getting better. I don't know it my neuropathy will merely level or improve or get worse and I don't even yet have an official diagnosis.
It seems to me that I had no tinnitus prior to TX and had no reason to wake up one day with it. I wasn't even clinically anemic at that point, due to a riba reduction. Nor has it gotten better since ending TX. I don't know if I can prove the drugs did it, but empiric evidence is that it is likely.
2 more points....and they are just opinions...... we are not genetically the same as our parents and siblings. I'm not dismissing that connection, but my father was 260+ pounds at times and I am 100 pounds lighter. Hey; I'm still a "type A" personality at times though. : ), just not quite to his degree. : ) My diet and lifestyle is a bit different as well, so my prospects my be quite different than his.... but who knows, they could be worse due to the hepc.
I also make the point....another opinion, is that if we can draw conclusions (ie, your sucrose issues) and attribute them to HCV (and I agree, it could very well be the case), that this is the same step many take in connection their post TX issues to the drugs they took.
And I also agree that it may be a reach to assert it is proof...... but there seems to be a pattern of damage which follows TX, not with all people, but many people had no issues pre TX and the ones we might find in this forum may have suffered significant post issues.
I am hopeful that discussions and peoples experiences my serve to connect the dots somewhat, or even to disprove causation.
It will be good to see other peoples experiences.
Willy, I have never said that treatment never causes post treatment problems. It can cause problems and we all know that. So I am not really sure why you keep insinuating that I don't think that treatment can cause problems. We all know it can. My objection to blaming everything on treatment is that not everything is from treatment. Some of it is from Hep C and and some of it is from other factors/causes. We need to try to discern what we have and what caused what. Then we need to go forward with appropriate treatment.
However, I AM saying that treatment definitely did NOT cause MY symptoms. How do I know that? I had the symptoms years, in fact, decades before I ever even knew I had Hep C and decades before I treated. So my symptoms were NOT caused by treatment. I know that for a fact. My Rheumatologist agrees with me.
My Rheumatologist sees a lot of people with Hepatitis C and most of them have autoimmune disorders. These are people WITH Hep C. They are not post treatment. Most of them cannot even treat with the current treatments because they already have autoimmune disorders (most likely triggered by Hep C).
The researchers know that all cause mortality is considerably higher among people with Hep C. They also know that all cause mortality decreases considerably in those people who attain SVR. So Hep C is known to increases morbidity and mortality, on all fronts.
I agree that we are not genetically the "same" as our parents. I never said we were. However, some diseases do cluster in families (and Diabetes is one of them) and some people do have a genetic predisposition to certain diseases (such as Diabetes). Others do not. So, if it appears in those with no predisposition, there is usually some other reason.
I think I have the biggest problem with doctors who claim neither Hep C nor treatment caused people's problems, that it is just age. And I have a problem with doctors who don't take the symptoms we have seriously and will not investigate further to see what is causing those symptoms/problems. If I had not found a competent Rheumatologist who did test me for everything, I would not have been diagnosed with Sjogren's and I would not be on treatment now. In addition, Sjogren's, and most other autoimmune disorders, can have significant and severe complications if they are not diagnosed and treated. Early diagnosis is key to getting treatment and avoiding these complications. So the longer some doctors refuse to investigate the problems we have, the worse prognosis we may have.
We have seen far too many people on the Hep C forum have their problems ignored. I hope that by discussing our symptoms and diagnosis and treatments we can all share and learn. And hopefully those people who are desperately seeking help will be able to find the information they need in order to get the help they need so they, too, can look forward to a happy and healthier life.
I was merely highlighting a few points. Even where there are areas which I have no disagreement there are little areas I thought I would clarify.
Your final sentence (of your first post)
"Right now there seems to be a lot of ignorance about the subject"
It wasn't clear where the ignorance is. I think we all (many doctors as well as us laymen) are a little and especially on this topic, and my long post was intended to point towards a number of areas where some of these issues can come from, to cast some doubt on the certainty of some conclusions
I think a great purpose of a forum like this we will start seeing more commonalities and connections.
My entire final paragraph in my first post was this:
"I strongly feel that there should be studies on large groups of people to determine which problems are Hep C related, which are Hep C treatment related, which are age or diet or exercise or gene or environment related, and which are a combination of several factors. Right now there seems to be a lot of ignorance about the subject and that really needs to change in order for people to get appropriate care. "
My point is that there is a lot of ignorance, especially among doctors, about what is causing what, or even that anything is being caused. That is why we get so many doctors dismissing our symptoms and problems. Very little study is going towards people who have treated or towards post treatment issues. I feel there need to be studies on large groups of people with Hep C, both those who have treated and those who have not. They would have to include control groups as well. Maybe then there would be a better understanding of everything Hep c related and hopefully then people would get appropriate treatment for their problems.
Even where there are areas which I have no disagreement there are little areas I thought I would clarify.
Your final sentence (of your first post)
"Right now there seems to be a lot of ignorance about the subject"
It wasn't clear where the ignorance is.
In the future, if you are not clear what one of my paragraphs or sentences means, ask me to clarify it. Please do not attempt to clarify what I write. If you do not know what I mean, then you cannot clarify it. So if you do not understand it, then ask me and i will clarify it.
I agree, very difficult to untangle this. Idyllic had the best idea to treat as individual problems.
I would like to know the why the where of problems, maybe it is a vitamin deficiency. I am once again being check for a Vitamin D deficiency.
Could be a B12.
I wonder about the protease inhibitor, since it has been used on HIV patients I have found that it can cause problems with the tendons, not saying that is what it is. Just exploring as a scientist would do. Unfortunately they aren't :)
I always hope that a patient on here will be told something by their doctor which is known in the medical community but not shared with the rest of us.
i.e. look at the things that we know that is not shared with the public or very rarely
There are many things that are known by doctors that don't share, I would like to find that information.
Dee-"I agree, very difficult to untangle this. Idyllic had the best idea to treat as individual problems. "
I agree with this. It is not something we can generalize and I really appreciate the thoughts and speculation on post disease/tx process . We will take what is applicable to us as individuals and continue to educate ourselves and be proactive about our health which is what MH seems to be about in its better form.
So glad you asked for this Dee:)
I am going to add one more link to a utube vid that adds a bit more info on peripheral or types of neuropathy.
It's 12 minutes and when I see people in medical cloaks I assume they are selling....... but I found this very informative. : )
The thing that really sealed this for me was the notion that it can be a variety of issues at play.
For many of us..... it is due to prolonged inflamation,
for some it may be due to age and/or moving towards glucose issues/diabetes/prediabetes,
for those of us who treat, and who experience anemia..... this can also add fuel to the flames and make things worse.
.....and perhaps some antivirals may be neurotoxic, and maybe not even by themselves...... but combined all at once and for an extended period of time the may have an additive effect or even a negative synergistic effect of nerve systems.
One side bar to this discussion of nerves... this guy talks about what happens to the visceral nerve systems.
Oddly enough it seemed that this may have happened to a HCV person I know whose heart rate went crazy after TX, it could be the visceral nerves controlling the heart were affected by that same combination of conditions.
Anyway....this guy says that the nerves can regenerate, but one must first pay attention to the issues which caused the event in the first place. If it is diet, a disease, or anemia they may still continue to prevent a complete repair. If we address these issues however, we may have a better chance at a more complete recovery, or partial instead of stasis.
Good video on the mitochondria. The mit' are where the damage is done by the virus and I think one of the factors that may have slowed my disease progression was the fact that I'd been taking CoQ10 for years for other reasons. My understanding of CoQ10 uptake is, you just can't absorb enough of it through food without supplementing once you hit 40, and it's essential for a lot the work the mitochondria do.
I was hoping you would see the video and catch that reference.
A doctor friend told me that I should stop w/ my trial drugs, that they were causing or contributing to the increased neuropathy. He said that me nerves were not "dead" just damaged and if I would remove the "insult" to the system, that the nerves might regenerate.
My post before this lists another utube where the message is more or less repeated, but we have to fix as many of the issues as we can if we are to expect any recovery. If we only patch one leak in the boat, we may continue to sink. We have to fix as many leaks as we can if the bailing is going to do any good. : )
So to speak......
Let me know if anyone can figure out how to not age. : )
"Let me know if anyone can figure out how to not age. : ) "
One study demonstrated that low dosages of CoQ10 reduce oxidation and DNA double-strand breaks, and a combination of a diet rich in polyunsaturated fatty acids and CoQ10 supplementation leads to a longer lifespan in rats. Coles and Harris demonstrated an extension in the lifespan of rats when they were given CoQ10 supplementation..."
Not a rat, but......
"Coenzyme Q10, also known as ubiquinone, ubidecarenone, coenzyme Q, and abbreviated at times to CoQ10 /ˌkoʊ ˌkjuː ˈtɛn/, CoQ, or Q10 is a 1,4-benzoquinone, where Q refers to the quinone chemical group, and 10 refers to the number of isoprenyl chemical subunits in its tail.
This oil-soluble, vitamin-like substance is present in most eukaryotic cells, primarily in the mitochondria. It is a component of the electron transport chain and participates in aerobic cellular respiration, generating energy in the form of ATP. Ninety-five percent of the human body’s energy is generated this way.
** Therefore, those organs with the highest energy requirements—such as the heart, liver and kidney—have the highest CoQ10 concentrations.**
There are three redox states of CoQ10: fully oxidized (ubiquinone), semiquinone (ubisemiquinone), and fully reduced (ubiquinol). The capacity of this molecule to exist in a completely oxidized form and a completely reduced form enables it to perform its functions in the electron transport chain and as an antioxidant respectively."
"Decreased mitochondrial deoxyribonucleic acid and increased oxidative damage in chronic hepatitis C"
"Occult hepatitis C virus elicits mitochondrial oxidative stress in lymphocytes and triggers PI3-kinase-mediated DNA damage response."
Since most SVR patients (aprox. 85-90% according to various studies) continue to carry occult form virus (for up to 8 years post-tx by the latest I've read) that last link may carry a clue to some people's post-tx problems.
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