Aa
To treat or not to treat? That is not the question.
I've been a member of this forum for a few months now and what I have learned is all good and I couldn't have learned it from anywhere else. As far as HepC goes, this is the only forum of which I participate in, most of the posts on this site are pro-treatment and I think that's what initially attracted me to this forum. Even though it's a pro-tx forum there are some posters who say to treat, however wait until you are having some symptoms. I wish I had their exact words, but it's really not that important as I think it's obvious. I am waiting for a clinical trial but I'm having to wait as I have mitigating circumstances concerning prescription meds, so I will be seeing my GI in early July and getting my bloods and an ultrasound done, minimum. I am also pro-treatment, with all these issues associated with the HepC tx, I am geno 1, so it seems like the genotype with the extra aggressive tx, if there is such a thing. HepC is such an enigma of a virus and tx often affects, teeth, skin, nerve damage, arthritis, fibro, riba rash, anger the list goes on and I don't want to continue about the bad things that may or may not happen to anyone if they go through tx. No doubt that HepC is a tenacious bugger and the tx sometimes very difficult, but dang it seems even worse for geno 1's being the longest to tx. Here's my question, If you choose treatment, is there any indicators that can tell you in advance to get off of treatment as it may cause you a myriad of other ailments and/ or permanent disabilities? I've read of some heppers who have gone through tx and a couple who even wish they wouldn't have, that's why I ask this question. I guess it really goes out to the ppl who have had major complications with their tx and have even gotten worse as a result of tx, but of course anyone with an opinion can answer. Be kind as I'm just looking for an answer, I don't care how good the doctor is he can't feel what you're feeling during tx so my feeling is you really have to stay focused and don't just think your doctor is some God as some of them think they are, they're only human. I don't know, that's why I'm asking. I want to have a clue prior to treating as I feel that if I go through anything adverse, I would get off of treatment, but at the same time I don't want to be overly cautious. God Bless
In general, there's no way to predict in advance how hard treatment will hit you. Especially what type of side effects/conditions you may be left with after treatment, perhaps permanently.
I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome.
As to your cholesterol, unless you perhaps have very advanced liver disease, it's difficult to understand why your doctors will not prescribe cholesterol lowering drugs such as statins. All the hepatologists I've consulted with said that statins were safe to take, HCV or not, as long as your liver enzymes are monitored on a regular basis -- but that's pretty much true with anyone who takes statins. Perhaps the doctors you've spoken to re statins are not liver specialists (hepatologists)? A lot of outdated and outright misinformation about Hep C even in the medical community. My suggestion is to find a good hepatologist before you pass on taking statins, assuming they are medically necessary.
-- Jim
I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome.
As to your cholesterol, unless you perhaps have very advanced liver disease, it's difficult to understand why your doctors will not prescribe cholesterol lowering drugs such as statins. All the hepatologists I've consulted with said that statins were safe to take, HCV or not, as long as your liver enzymes are monitored on a regular basis -- but that's pretty much true with anyone who takes statins. Perhaps the doctors you've spoken to re statins are not liver specialists (hepatologists)? A lot of outdated and outright misinformation about Hep C even in the medical community. My suggestion is to find a good hepatologist before you pass on taking statins, assuming they are medically necessary.
-- Jim
I dont now if i can settle for tx with only 50 or less% chanses of succes.
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I know exactly where you're coming from, ca. As genotype 1, my husband was told 6 months ago by one of his hep docs he should treat -- with a 40% chance of success, my husband was not at ALL interested -- at the time. He was finally feeling like his old self after 3 extended hospital stays and said NO way.
The passage of time and circumstances are changing his mind, though. As a stage 4 just diagnosed last year and starting to learn more from his oncologist and hepatologist about the risks of both HCC and ESLD, he's decided he's going to try treatment -- even thought his chances at cure have been lowered to 25%. (It's the "gamble" he's willing to take, given that as many as 90% of HCC patients, even those resected, have recurrence within 5 years. ) Sometimes it's not about what you win, but what you can't afford to lose.
eureka
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I know exactly where you're coming from, ca. As genotype 1, my husband was told 6 months ago by one of his hep docs he should treat -- with a 40% chance of success, my husband was not at ALL interested -- at the time. He was finally feeling like his old self after 3 extended hospital stays and said NO way.
The passage of time and circumstances are changing his mind, though. As a stage 4 just diagnosed last year and starting to learn more from his oncologist and hepatologist about the risks of both HCC and ESLD, he's decided he's going to try treatment -- even thought his chances at cure have been lowered to 25%. (It's the "gamble" he's willing to take, given that as many as 90% of HCC patients, even those resected, have recurrence within 5 years. ) Sometimes it's not about what you win, but what you can't afford to lose.
eureka
To be honest, I think the persons to best answer your questions are those who have the same conditions as you and how it impacted them going through treatment....and your doctors. If you have doctors who are experienced at treating HCV, then they have treated persons with all different health conditions as well, they understand how the drugs impact those various conditions and understand what the risks are if they have you proceed with treatment. They can tell you what they'll be watching for as you proceed with treatment. You can get copies of your labs and follow along and watch the same things they're watching.
You can also ask your doctors ahead of time what they'll be watching for and what the plan will be if any of the "markers" they're watching for hit a danger zone - does that mean an extra drug into the mix, a dosage reduction, a trip to emerg, what? And what risks do you face? You can also ask them what are the chances of those issues flaring up, based on their experience. Gather as much information as you can about how they treat people with your specific health issues.
Your docs SHOULD be able to answer those questions, particularly if they plan to treat you with your current health considerations. Has any of them said you should NOT treat?
In the end....knowledge is power. The power to make the best decision for yourself possible and to be better prepared to go into treatment knowing what could happen.
Frankly, I think it's been easier for me to deal with treatment because I knew what could happen. Each time a "side" came up, I would say "well, I knew that could happen" and then just go with the strategy that goes with that side.
You are Stage 1 or were at your 2005 biopsy, yes? Depending on what information you gather, you may decide that you want to wait for better drugs that make may potentially make treatment shorter. It all depends. For me, the impact of HCV on my life in various ways and the potential impact was such that I wanted to treat sooner than later.
That's all we can do .. is learn as much about our own variables as we can and then, after considering them, go ahead.
I had different variables than you ... but it was still a big decision based on my own variables. I had to consider the potential impact to my employement status, my abilities as a parent, the potential impact of proceeding on to 72 weeks if it seemed necessary, the impact of the side effects hitting me harder than lesser... and the potential of the treatment giving me health issues that might not go away...like thyroid issues .. when I've been completely healthy in all ways up until now.
I wish you good luck, fret.
Trish
You can also ask your doctors ahead of time what they'll be watching for and what the plan will be if any of the "markers" they're watching for hit a danger zone - does that mean an extra drug into the mix, a dosage reduction, a trip to emerg, what? And what risks do you face? You can also ask them what are the chances of those issues flaring up, based on their experience. Gather as much information as you can about how they treat people with your specific health issues.
Your docs SHOULD be able to answer those questions, particularly if they plan to treat you with your current health considerations. Has any of them said you should NOT treat?
In the end....knowledge is power. The power to make the best decision for yourself possible and to be better prepared to go into treatment knowing what could happen.
Frankly, I think it's been easier for me to deal with treatment because I knew what could happen. Each time a "side" came up, I would say "well, I knew that could happen" and then just go with the strategy that goes with that side.
You are Stage 1 or were at your 2005 biopsy, yes? Depending on what information you gather, you may decide that you want to wait for better drugs that make may potentially make treatment shorter. It all depends. For me, the impact of HCV on my life in various ways and the potential impact was such that I wanted to treat sooner than later.
That's all we can do .. is learn as much about our own variables as we can and then, after considering them, go ahead.
I had different variables than you ... but it was still a big decision based on my own variables. I had to consider the potential impact to my employement status, my abilities as a parent, the potential impact of proceeding on to 72 weeks if it seemed necessary, the impact of the side effects hitting me harder than lesser... and the potential of the treatment giving me health issues that might not go away...like thyroid issues .. when I've been completely healthy in all ways up until now.
I wish you good luck, fret.
Trish
All of the above posts really do show what a different decision this is for each individual.
Everyones circumstances so different yet so similar in that we all want the same thing.... our health back.
I have decided not to tx again. Tx for me was fairly easy however I relapsed post 6mo.
I 'm 56 & healthy even thoughI am bridging fibrous and have portal hypertension but have good blood flow and show no variscies and liver enzymes are normal.I feel good!!! Right now that is whats important to me.I also take milk thistle and other supplements.
My plan is to wait for new drugs to become available hoping I have time and making the most of the time I have. With our health issue no way to know what is the right or best decision.
What ever you do ....do with gusto
Wishing you well
hopeful51
Everyones circumstances so different yet so similar in that we all want the same thing.... our health back.
I have decided not to tx again. Tx for me was fairly easy however I relapsed post 6mo.
I 'm 56 & healthy even thoughI am bridging fibrous and have portal hypertension but have good blood flow and show no variscies and liver enzymes are normal.I feel good!!! Right now that is whats important to me.I also take milk thistle and other supplements.
My plan is to wait for new drugs to become available hoping I have time and making the most of the time I have. With our health issue no way to know what is the right or best decision.
What ever you do ....do with gusto
Wishing you well
hopeful51
It might have been something similar to this. It sounds like this study is going to provide some interesting info for us all. But how far out is this info? Who can say:
http://www.edc.pitt.edu/virahepc/ancillary.html
See below that led me to the site above:
http://www.ddw.org/wmspage.cfm?parm1=843
http://www.eurekalert.org/pub_releases/2008-05/aga-lds051808.php
Combination Antiviral Therapy Differentially Affects Dendritic Cell Chemokine Receptor and Maturation Marker Expression in Chronic Hepatitis C Infection (Abstract #461)
Researchers have found that current therapy for hepatitis C virus (HCV) differentially affects dendritic cells – the most potent stimulator of T cells. Treatment for HCV, a viral infection affecting the liver, typically involves 48 weeks of combination antiviral therapy. This therapy, which induces flu-like symptoms for patients, successfully combats HCV in only half of the cases.
Working with participants in the Virahep-C study, researchers examined 64 patients with genotype 1 HCV, the most common and hardest to treat strain of the virus. Blood samples were studied from each patient prior to and 24 weeks after undergoing HCV therapy. Investigators studied the frequency of plasmacytoid dendritic cells (pDCs) and myeloid dendritic cells (mDCs) and measured the median fluorescence intensities (MFIs) of chemokine receptors and maturation markers.
Researchers found that pretreatment frequencies of pDC and mDC were significantly lower in HCV patients than normal controls. They also found that some, but not all, inflammatory chemokine receptors and maturation markers were elevated at baseline, in patients compared to normal controls, suggesting incomplete maturation.
In addition, they found that the levels of pDC cells in those who responded to therapy normalized, while non-responders did not. Levels of maturation markers and chemokine receptors also normalized in patients who responded to therapy. Patients with increased pre-treatment pDC migration to chemokines were less likely to respond to therapy.
“If we are able to use DC cells studies to predetermine who will respond to therapy and who will not, we can spare some patients from a long and painful 48 week regimen that is ultimately ineffective. Further, this research tells us that the DC cells may hold the key to finding improved therapy for chronic HCV patients,” said John A. Mengshol, MD, PHD, fellow at the department of gastroenterology and hepatology at the University of Colorado Denver School of Medicine.
http://www.edc.pitt.edu/virahepc/ancillary.html
See below that led me to the site above:
http://www.ddw.org/wmspage.cfm?parm1=843
http://www.eurekalert.org/pub_releases/2008-05/aga-lds051808.php
Combination Antiviral Therapy Differentially Affects Dendritic Cell Chemokine Receptor and Maturation Marker Expression in Chronic Hepatitis C Infection (Abstract #461)
Researchers have found that current therapy for hepatitis C virus (HCV) differentially affects dendritic cells – the most potent stimulator of T cells. Treatment for HCV, a viral infection affecting the liver, typically involves 48 weeks of combination antiviral therapy. This therapy, which induces flu-like symptoms for patients, successfully combats HCV in only half of the cases.
Working with participants in the Virahep-C study, researchers examined 64 patients with genotype 1 HCV, the most common and hardest to treat strain of the virus. Blood samples were studied from each patient prior to and 24 weeks after undergoing HCV therapy. Investigators studied the frequency of plasmacytoid dendritic cells (pDCs) and myeloid dendritic cells (mDCs) and measured the median fluorescence intensities (MFIs) of chemokine receptors and maturation markers.
Researchers found that pretreatment frequencies of pDC and mDC were significantly lower in HCV patients than normal controls. They also found that some, but not all, inflammatory chemokine receptors and maturation markers were elevated at baseline, in patients compared to normal controls, suggesting incomplete maturation.
In addition, they found that the levels of pDC cells in those who responded to therapy normalized, while non-responders did not. Levels of maturation markers and chemokine receptors also normalized in patients who responded to therapy. Patients with increased pre-treatment pDC migration to chemokines were less likely to respond to therapy.
“If we are able to use DC cells studies to predetermine who will respond to therapy and who will not, we can spare some patients from a long and painful 48 week regimen that is ultimately ineffective. Further, this research tells us that the DC cells may hold the key to finding improved therapy for chronic HCV patients,” said John A. Mengshol, MD, PHD, fellow at the department of gastroenterology and hepatology at the University of Colorado Denver School of Medicine.
Hi,
I was in to the Liver Clinic to discuss treatment and they said that with Genotype 1 you have to wait 24 weeks before you can assess if the treatment is working or not. So you are committed for at least that time.
I have the genotype 1 and am only at stage two after having Hep C for 30 years so have decided not to treat. The success rate with this genotype is only 40%. I am also a runner and very fit. I do not drink and have been taking milk thistle for over ten years. Ten years ago my enzyme levels shot up so I started taking milk thistle and they have been better than normal since then. I had my first liver biopsy last year and will have another next year. There is no way I am taking treatment unless my disease progressed significantly. My doctor feels that with my lifestyle and at the rate things are progressing that I may never need treatment.
I hope your decision to treat is based on a liver biopsy result and not fear.
Vivian (age 51)
I was in to the Liver Clinic to discuss treatment and they said that with Genotype 1 you have to wait 24 weeks before you can assess if the treatment is working or not. So you are committed for at least that time.
I have the genotype 1 and am only at stage two after having Hep C for 30 years so have decided not to treat. The success rate with this genotype is only 40%. I am also a runner and very fit. I do not drink and have been taking milk thistle for over ten years. Ten years ago my enzyme levels shot up so I started taking milk thistle and they have been better than normal since then. I had my first liver biopsy last year and will have another next year. There is no way I am taking treatment unless my disease progressed significantly. My doctor feels that with my lifestyle and at the rate things are progressing that I may never need treatment.
I hope your decision to treat is based on a liver biopsy result and not fear.
Vivian (age 51)
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