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Hep C : deciding on triple treatment now or wait for new drugs
I was diagnosed in 93 with type 1 Hep C virus (moderate levels). May 2012 I tested with higher liver enzyme levels. Aug. 2012 a biopsy confirmed low liver damage with No signs of cirrhosis or fatty liver. I am easily fatigued (but I am a tuf girl), for the last 2 years I have an increasing discomfort in the liver area under the right rib cage and suffer from joint pains in the hips, knees and lower back. The « gastrointestinal doctor in Québec, Canada» Has given me the choice to proceed with the triple treatment but suggested that I wait for 3 to 5 years for an optional treatment which may have less side effects. I am wagering for the treatment because I am presently eligible for insurance coverage that will not be available to me in 3 years when my husband retires from his present employment. I am concerned not about the side effects during treatment but the long term health risks after the treatment. What are the risks that one of these three drugs can cause a serious illness that I will have live with for the rest of my life. Ex : Heart, intestinal, anemia etc. It is scary. But I want this gone, I am willing to change everything to be well and be able to live a healthy, long life...
Reading all these comments, I am touched that you are willing to share your experiences and are so sensitive about getting your true meaning out... I appreciate all your comments.. Positive and negative. I am going on 49 this year. Thanks for informing me that my doctor has not included me in some of the more technical aspects of my disease Like the fibrosis results from the biopsy. He did however mention that presently the liver is not swollen. My symptoms are fatigue, joint pain, irritable intestines, low Vit D and I think all these physical changes get me down, Sometimes Im just two tired and My List IS TOO LONG.. Cant and wont give up... I believe my doctor is extremely good. He is Semi retired so he has more time for me He used to be the Director of the gastro --- dept. sorry the English term escapes me. He is the one who gave me the choice. He beleives that as long as each 3 month test comes back ok I can possibly wait 3 to 5 years for a better treatment. But he could not name a possible treatment at this time. Sorry guys but I gotta go to work... Late again.!!! Tuff girl.. I will try to catch up tomorrow. I did not have time to read every post yet.. Thanks again
Well, we all know, as we get older,our immune systems weaken, so I began looking into treatment options, once I hit menopause. I think the Hep C made my hot flashes much worse than what is considered normal, etc. It was as if my Internal Thermometer no longer functioned.
At my yearly physical, 14 months ago, I noticed that my liver enzymes were 9 times more elevated than they usually were. (I have had Hep C for 23 yrs, and usually, the AST/ALT were twice as high as they should be, butlast time, they were ten times higher).
I also had a few other things wrong with my labs, I noticed my platelets going lower than the normal range, and a few other things, so I decided it was time to treat, although my biopsy had me at Stage 2.
I went into Treatment last Feb , and finished two weeks ago. I do
feel much better than before I went into Treatment, and I am hoping to attain SVR. I began having auto-immune system problems, that look like Arthritis, and it did get worse during Treatment.
It's so hard to tell symptoms are from Old Age, and what is from the Hep C. Good luck with what-ever you decide to do.
At my yearly physical, 14 months ago, I noticed that my liver enzymes were 9 times more elevated than they usually were. (I have had Hep C for 23 yrs, and usually, the AST/ALT were twice as high as they should be, butlast time, they were ten times higher).
I also had a few other things wrong with my labs, I noticed my platelets going lower than the normal range, and a few other things, so I decided it was time to treat, although my biopsy had me at Stage 2.
I went into Treatment last Feb , and finished two weeks ago. I do
feel much better than before I went into Treatment, and I am hoping to attain SVR. I began having auto-immune system problems, that look like Arthritis, and it did get worse during Treatment.
It's so hard to tell symptoms are from Old Age, and what is from the Hep C. Good luck with what-ever you decide to do.
I don't think there is necessarily a right or wrong answer to the treat or wait to treat question. There are risks either way.
I've seen people who seemed to get better form treatment.
Andiamo treated 6 times before getting cured his 7th time. It was thought that the treatments kept him alive until there was a treatment that could cure him.
The flip side is that there are also people who have treated in the past w/ no ill side effects, but who seem to manifest a different outcome during a re-treatment. I've yet to see or understand the rhyme or reason of that.
My major point in posting was to correct the assumption that better treatments are 3-5 years off. If the treatment arm in the GS-7977 combined with GS-5885 is successful we could be looking at a treatment w/ a high cure rate, a shorter treatment time and one that may be safer and more tolerable. (There are also other interferon sparing treatments coming from other companies as well)
This may not be a good choice for someone w/ advanced liver disease-they may not be able to wait. For someone with mild damage it may indeed be worth considering.
willy
I've seen people who seemed to get better form treatment.
Andiamo treated 6 times before getting cured his 7th time. It was thought that the treatments kept him alive until there was a treatment that could cure him.
The flip side is that there are also people who have treated in the past w/ no ill side effects, but who seem to manifest a different outcome during a re-treatment. I've yet to see or understand the rhyme or reason of that.
My major point in posting was to correct the assumption that better treatments are 3-5 years off. If the treatment arm in the GS-7977 combined with GS-5885 is successful we could be looking at a treatment w/ a high cure rate, a shorter treatment time and one that may be safer and more tolerable. (There are also other interferon sparing treatments coming from other companies as well)
This may not be a good choice for someone w/ advanced liver disease-they may not be able to wait. For someone with mild damage it may indeed be worth considering.
willy
I hope you achieved SVR!
Hard stuff, this Hep C.
...........................................
faithforhealing
"How long can one expect to stay at "early cirrhosis" without treatment?"
I know I sound like a broken record - forgive me - but this is what I mean when I say treatment might take many forms - spiritual, alternative, diet, etc. Esp. spiritual.
I came across this today: "The good physician treats the disease; the great physician treats the patient who has the disease."
William Osler, MD
..........................................................
And, oh, read that FDA letter. I believe it says triple combo therapy has a 14% success rate for prior non-responders w/ cirrhosis. I had no idea it was that low.
Kind of makes one's decision simple. Serenity prayer it and drive on day by day.
....................................
I pray healing energy and kindness for all.
Hard stuff, this Hep C.
...........................................
faithforhealing
"How long can one expect to stay at "early cirrhosis" without treatment?"
I know I sound like a broken record - forgive me - but this is what I mean when I say treatment might take many forms - spiritual, alternative, diet, etc. Esp. spiritual.
I came across this today: "The good physician treats the disease; the great physician treats the patient who has the disease."
William Osler, MD
..........................................................
And, oh, read that FDA letter. I believe it says triple combo therapy has a 14% success rate for prior non-responders w/ cirrhosis. I had no idea it was that low.
Kind of makes one's decision simple. Serenity prayer it and drive on day by day.
....................................
I pray healing energy and kindness for all.
I totally agree with what ceanothus wrote. We are being totally unrealistic if we don't consider the very real dangers of treatment. The problem is in predicting the future of how our liver status will progress.
Do we have stats on how long it takes to go from fibrosis to compensated cirrhosis to decompensated cirrhosis?
Can some people with untreated HCV never get fibrosis? If one does get some fibrosis, how long does it take to move to compensated cirrhosis, if ever?
How long can one expect to stay at "early cirrhosis" without treatment?
Can one move rapidly through this decline and another never move beyond fibrosis or compensated cirrhosis?
Is it a matter of dying from something else before the liver reaches the point of no return?
No doubt there are many people walking around with HCV and/or on the verge of decompensated cirrhosis and they don't know it yet. Especially now that so many are reaching age 60+.
I suspect that maybe all the stats are not in to answer those questions. Who knows what stats the now aging baby boomer group will produce over the next few years? A rise in ESLD? Maybe, maybe not.
If one is 65 with HCV and has cirrhosis, how does one make that call to treat or not? I've seen a few 70 yr olds on here who did not have the luck of some other 70 years olds with the virus.
And whose stats do we trust?
I think we are unfortunately, to some degree, still in the "guinea pig" era of all of this. Hopefully things will improve so we can make better decisions with more knowledge.
Do we have stats on how long it takes to go from fibrosis to compensated cirrhosis to decompensated cirrhosis?
Can some people with untreated HCV never get fibrosis? If one does get some fibrosis, how long does it take to move to compensated cirrhosis, if ever?
How long can one expect to stay at "early cirrhosis" without treatment?
Can one move rapidly through this decline and another never move beyond fibrosis or compensated cirrhosis?
Is it a matter of dying from something else before the liver reaches the point of no return?
No doubt there are many people walking around with HCV and/or on the verge of decompensated cirrhosis and they don't know it yet. Especially now that so many are reaching age 60+.
I suspect that maybe all the stats are not in to answer those questions. Who knows what stats the now aging baby boomer group will produce over the next few years? A rise in ESLD? Maybe, maybe not.
If one is 65 with HCV and has cirrhosis, how does one make that call to treat or not? I've seen a few 70 yr olds on here who did not have the luck of some other 70 years olds with the virus.
And whose stats do we trust?
I think we are unfortunately, to some degree, still in the "guinea pig" era of all of this. Hopefully things will improve so we can make better decisions with more knowledge.
Oops, hit the send button by accident. The surgeon told me my liver looked every bit as bad as the ones they discard when performing liver transplants. I started my second tx as soon as I was adequately recovered from surgery, about 4 months later. It ultimately failed but it did have me UND for nearly a year (out of a 15-month treatment), and I think it helped keep my liver functioning well enough that I was still able to try one more time. I do absolutely believe that some people experience disabling long-term side effects, and I still worry a little that some of those might come back to bite me even if I do achieve SVR this time, but so far I've had no noticeable long-term effects. Rather than causing any hepatitis itself, the interferon has made my liver significantly healthier each time, with greatly improved metabolic function tests during each treatment. During this current treatment my liver enzymes have been normal since week 6, and the scores have gotten lower on each successive test. I hope my upcoming EOT results in SVR, but I am very confident that at the least it has given my liver a good long rest from the assault of the virus.
I really hope the medical field will eventually find a way to improve life for those, like you, who do experience debilitating long-term effects from tx, and I also do really appreciate your efforts to make sure people are aware of this possible negative outcome. I know you are sometimes shouted down here, but most of the posts I've seen by you have appeared to be very well-intentioned, and I respect you for that and think your views are also valuable here. Interferon is a powerful and potentially dangerous drug, and I believe that in spite of not having personally experienced anything but horrible short-term effects. Untreated Hepatitis C is also a powerful and potentially dangerous disease, and I have personally experienced the long-term negative effects of the virus. I guess more of us on this forum have experienced the long-term negative effects of the virus than the long-term negative effects of interferon, and from makes it a little harder to hear the bad stories about interferon. I don't think we should deny them or bury them, but acknowledge the possibilities and keep things in balance to make the best and most informed decisions.
I really hope the medical field will eventually find a way to improve life for those, like you, who do experience debilitating long-term effects from tx, and I also do really appreciate your efforts to make sure people are aware of this possible negative outcome. I know you are sometimes shouted down here, but most of the posts I've seen by you have appeared to be very well-intentioned, and I respect you for that and think your views are also valuable here. Interferon is a powerful and potentially dangerous drug, and I believe that in spite of not having personally experienced anything but horrible short-term effects. Untreated Hepatitis C is also a powerful and potentially dangerous disease, and I have personally experienced the long-term negative effects of the virus. I guess more of us on this forum have experienced the long-term negative effects of the virus than the long-term negative effects of interferon, and from makes it a little harder to hear the bad stories about interferon. I don't think we should deny them or bury them, but acknowledge the possibilities and keep things in balance to make the best and most informed decisions.
I hope I did not come across as one saying to definitely treat now. My point should have really been to emphasize that make sure the doctor directing you knows what he/she is talking about as far as your condition.
You need to be monitored very closely as you wait. Not all gastros are "created equal" as they say; it depends on their experience and area of expertise.
I don't know what "low level liver damage" (per your post) means.
My experience is that I relied on my "regular" doctors (internal med, or whatever primary physicians are) and no one picked up on what was really going on with me simply by looking at my blood work (AST, ALT, platelets, etc.) or recommended I treat. I had gastros say it wasn't necessary. I truly feel I almost lost my window of opportunity to treat by 2012.
If you can hold off for better tx, definitely hold off. Again, insurance, etc. comes into play as well.
It is a tough call. Just make sure you are in the good hands of someone who can make that call. Some of these docs (including gastros) are rather
nonchalant about a lot of this.
You need to be monitored very closely as you wait. Not all gastros are "created equal" as they say; it depends on their experience and area of expertise.
I don't know what "low level liver damage" (per your post) means.
My experience is that I relied on my "regular" doctors (internal med, or whatever primary physicians are) and no one picked up on what was really going on with me simply by looking at my blood work (AST, ALT, platelets, etc.) or recommended I treat. I had gastros say it wasn't necessary. I truly feel I almost lost my window of opportunity to treat by 2012.
If you can hold off for better tx, definitely hold off. Again, insurance, etc. comes into play as well.
It is a tough call. Just make sure you are in the good hands of someone who can make that call. Some of these docs (including gastros) are rather
nonchalant about a lot of this.
I just wanted to answer your question: yes, my autoimmune problems arose first. In fact, testing to find the source of those problems was what led to my dx of Hepatitis C. My hepatologist used to be skeptical that they were related, while two rheumatologists were both thinking the HCV probably was the trigger. Eventually my hepatologist has come around to that view too. In spite of general agreement that the HCV is the likely trigger for the autoimmune problems, all of my doctors warned me prior to tx that there was some risk that the interferon could make those symptoms worse (or, on the other hand, could improve them significantly). My first tx was interferon alone, in the early 1990's, for just 3 months. It was stopped early as I was not responding at all. I was diagnosed with very bad cirrhosis in 2004 or2005 (brain fog keeps me from being sure), after a liver transplant team had to perform a very complex surgical procedure to remove a choledochal cyst and add a roux-en-y
Interesting FDA letter dated May 25, 2012 to Vertek Pharmaceuticals re: Incivek:
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/WarningLettersandNoticeofViolationLetterstoPharmaceuticalCompanies/UCM306105.pdf
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/WarningLettersandNoticeofViolationLetterstoPharmaceuticalCompanies/UCM306105.pdf
The leading cause of liver cancer and ESLD is Hep C. That's almost certainly true.
The CDC estimates 15,106 people died from Hep C in 2007, and that 3.2 million people have it.
15,106 / 3,200,000 = 0.47% / year, or 1 in 200 infected. That's not the end of the story though.
It's probably safe to assume that very few of these folks were in their 20s 30s or 40s.
Most were probably older, in their late 50s, 60s or 70s. We have no idea what lifestyle they lived prior to death - smokers? Obese? McDonald's eaters? green leaf eaters? slender? regular exercise? We don't know.
Note that in 2009:
599,413 people died from heart disease
567,328 died from some other form of cancer
137,573 died from lower respiratory disease (emphysema, COPD? smokers?)
128,842 died from stroke, and
118,021 died in accidents.
Excluding the respiratory disease, that's 1,413,604 other ways to go vs. the 15,000 from Hep C.
http://www.cdc.gov/nchs/data/nvsr/nvsr60/nvsr60_03.pdf
So a person infected with Hep C is 7.87 times more likely to die from an accident than from Hep C.
.....................................
When all these statistics are factored in, the CDC says that between 1 and 5 out of 100 folks with Hep C will die of it.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
The CDC estimates 15,106 people died from Hep C in 2007, and that 3.2 million people have it.
15,106 / 3,200,000 = 0.47% / year, or 1 in 200 infected. That's not the end of the story though.
It's probably safe to assume that very few of these folks were in their 20s 30s or 40s.
Most were probably older, in their late 50s, 60s or 70s. We have no idea what lifestyle they lived prior to death - smokers? Obese? McDonald's eaters? green leaf eaters? slender? regular exercise? We don't know.
Note that in 2009:
599,413 people died from heart disease
567,328 died from some other form of cancer
137,573 died from lower respiratory disease (emphysema, COPD? smokers?)
128,842 died from stroke, and
118,021 died in accidents.
Excluding the respiratory disease, that's 1,413,604 other ways to go vs. the 15,000 from Hep C.
http://www.cdc.gov/nchs/data/nvsr/nvsr60/nvsr60_03.pdf
So a person infected with Hep C is 7.87 times more likely to die from an accident than from Hep C.
.....................................
When all these statistics are factored in, the CDC says that between 1 and 5 out of 100 folks with Hep C will die of it.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
A few things.
My "wow" comment was unmerited and misguided. I thought she had said "The only long term side effect from treatment is SVR"
as opposed to HER only long term side effect.
I was careless and reactive. My apologies to all again.
My "wow" comment was unmerited and misguided. I thought she had said "The only long term side effect from treatment is SVR"
as opposed to HER only long term side effect.
I was careless and reactive. My apologies to all again.
http://www.natap.org/2012/HCV/072712_01.htm
Gilead Begins Single Pill Hepatitis C Study for 2014 Approval
Bloomberg, By Michelle Fay Cortez and Ryan Flinn on July 27, 2012
Gilead Sciences Inc. (GILD) (GILD) said it plans to start a combination study of two drugs in a single pill to treat hepatitis C by the end of the year, putting it on track to request U.S. regulatory approval for the medicine in 2014.
Gilead, which spent $10.8 billion to acquire one of the medicines, GS-7977, plans to combine it with another, GS-5855, in a trial of 800 patients starting in the fourth-quarter, said Norbert Bischofberger, chief medical officer of the Foster City, California-based company, in a conference call yesterday. If the combination is effective, the company could apply for regulatory approval in the middle of 2014, Bischofberger said.
Gilead is among several drugmakers racing to develop new hepatitis C treatments that act more quickly with fewer side effects than the current standard of care. The goal is to provide doctors and patients with simpler, more effective treatments, Bischofberger said.
The company aims for a therapy that "will clearly be a one pill, once daily, maybe a 12 week course," for patients with all different types of hepatitis C, Bischofberger said. "That's our goal. We are very close."
Conventional therapy combines ribavirin with interferon, an injected immune-boosting protein that can cause flu-like side effects, for as long as 48 weeks.
Gilead is competing with Abbott Laboratories, Bristol-Myers Squibb Co., Johnson & Johnson, Merck & Co. and Vertex Pharmaceuticals Inc. (VRTX) (VRTX) to develop a new generation of hepatitis C treatments. Rising deaths among baby boomers from hepatitis C prompted U.S. health officials to declare in May that the entire age group is at risk and should be tested for the disease.
============================================
This single pill treatment will soon be available in 2014; that is hardly 3-5 years. An earlier permutation of this (GS-7977 & decalatasvir) had a 100% SVR rate, but in a very small trial.
Just yesterday i spoke w/ a young woman who did triple therapy who developed severe sides during TX and only made it 6 weeks. She has since had severe post TX sides and is seeing a cardiologist in the future, but cannot be seen for months. I am not sure why people would rush you to start a treatment when you have minimal damage and other treatments are so close.
I would suggest you revisit your options. Your doctor made a recommendation (which I read in the first post) and a few people here are making recommendations to treat now in spite of your minimal damage and against your doctors recommendations. Things that make me think hmmmmmmmm.
Yes, it's true that many people do not have long term sides, but there are those who treat who DO have have them. I'm unaware of any treatment for these long term sides and there have been people who have posted regularly on this board who have had them. I have personally met people who have them, some of them are people who treated before.
Let me say...... their attitude has changed somewhat about interferon. When you see young mothers who are now on disability, well..... it changes your attitude.
A different friend of mine treated with triple but relapsed. Whereas his HCV had been stable he is now showing signs of decompensation, and a host of other issues which were not present before tx.
Good luck; I merely provide some rebuttal to some of what appears to be the encouragement to treat, in spite of your doctors advice.
willy
Gilead Begins Single Pill Hepatitis C Study for 2014 Approval
Bloomberg, By Michelle Fay Cortez and Ryan Flinn on July 27, 2012
Gilead Sciences Inc. (GILD) (GILD) said it plans to start a combination study of two drugs in a single pill to treat hepatitis C by the end of the year, putting it on track to request U.S. regulatory approval for the medicine in 2014.
Gilead, which spent $10.8 billion to acquire one of the medicines, GS-7977, plans to combine it with another, GS-5855, in a trial of 800 patients starting in the fourth-quarter, said Norbert Bischofberger, chief medical officer of the Foster City, California-based company, in a conference call yesterday. If the combination is effective, the company could apply for regulatory approval in the middle of 2014, Bischofberger said.
Gilead is among several drugmakers racing to develop new hepatitis C treatments that act more quickly with fewer side effects than the current standard of care. The goal is to provide doctors and patients with simpler, more effective treatments, Bischofberger said.
The company aims for a therapy that "will clearly be a one pill, once daily, maybe a 12 week course," for patients with all different types of hepatitis C, Bischofberger said. "That's our goal. We are very close."
Conventional therapy combines ribavirin with interferon, an injected immune-boosting protein that can cause flu-like side effects, for as long as 48 weeks.
Gilead is competing with Abbott Laboratories, Bristol-Myers Squibb Co., Johnson & Johnson, Merck & Co. and Vertex Pharmaceuticals Inc. (VRTX) (VRTX) to develop a new generation of hepatitis C treatments. Rising deaths among baby boomers from hepatitis C prompted U.S. health officials to declare in May that the entire age group is at risk and should be tested for the disease.
============================================
This single pill treatment will soon be available in 2014; that is hardly 3-5 years. An earlier permutation of this (GS-7977 & decalatasvir) had a 100% SVR rate, but in a very small trial.
Just yesterday i spoke w/ a young woman who did triple therapy who developed severe sides during TX and only made it 6 weeks. She has since had severe post TX sides and is seeing a cardiologist in the future, but cannot be seen for months. I am not sure why people would rush you to start a treatment when you have minimal damage and other treatments are so close.
I would suggest you revisit your options. Your doctor made a recommendation (which I read in the first post) and a few people here are making recommendations to treat now in spite of your minimal damage and against your doctors recommendations. Things that make me think hmmmmmmmm.
Yes, it's true that many people do not have long term sides, but there are those who treat who DO have have them. I'm unaware of any treatment for these long term sides and there have been people who have posted regularly on this board who have had them. I have personally met people who have them, some of them are people who treated before.
Let me say...... their attitude has changed somewhat about interferon. When you see young mothers who are now on disability, well..... it changes your attitude.
A different friend of mine treated with triple but relapsed. Whereas his HCV had been stable he is now showing signs of decompensation, and a host of other issues which were not present before tx.
Good luck; I merely provide some rebuttal to some of what appears to be the encouragement to treat, in spite of your doctors advice.
willy
Good screen name since so much about having HCV is tuff including the decision to treat.
Personally, I went into tx not knowing much at all about HCV, the treatment (other than it would/could be rough), or the long term side effects of tx; I only knew that in the long run I would not be getting healthier and it could lead to cirrhosis. One can sit back for a few years and have no signs that one's liver is actually getting worse; no real symptoms until it is too late.
I don't think you said how old you are, general health AND family history of health issues. I am 62 and so many of my siblings, friends, etc. are being blown away with new dx of diabetes, heart disease, high blood pressure, cancer (liver, bladder, lung), cirrhosis, macular degeneration, pancreatitis, blood disorders, vasculitis, fibromyalgia, lupus, crohn's disease, neuropathy, etc. None of them had HCV....these things are going to come as we get older. I guess my point is that to try to figure out what health issues came from HCV tx is kind of a crap shoot.
One thing you know for sure is that your HCV isn't going to get better, or as some people say, "lay dormant". It's there and it's working and fighting to thrive every day. Your situation could change quickly, or not at all...you just don't know, and there won't be any warning signs.
Does one wait til they may develop other health problems that may interfere or rule out tx in the future, or treat while still strong and fairly healthy? Tx is certainly not going to be easier with a more advanced liver stage, other new health issues or with age.
Unfortunately, money dictates a lot of the decision. Having insurance is another important issue. How does one treat when one no longer has insurance? Most don't/can't.
I, like just about everyone else on here, wanted to treat asap and get rid of the ugly monster. I felt blessed to get into a trial to have a chance to hopefully and finally get rid of it and jumped in with both feet and very little knowledge.
If I had known then what I know now from stories on the board, would I have thought it over more carefully? No, I would have been even more compelled to get rid of this virus; that includes knowing the occasional stories of symptoms after tx. I think the stories of more advanced liver disease are far more frightening than the stories of long term side effects.
Just about every symptom people complain about post tx is complained about by many pre-tx. For me it's a "which came first, the chicken or the egg"? Would these issues people think they got from tx come if they hadn't treated? Maybe. Most of them are associated with HCV and liver disease.
I just finished tx last week and I have some issues right now, but all I can do is hope that they will go away with time. Do I regret tx'ing? No, not even if I don't achieve SVR and even if my side effects are permanent. I will keep trying to get rid of this virus.
Someone correct me if I (or this link is wrong), but "In adults, chronic liver failure due to cirrhosis caused by hepatitis C is the most common reason for liver transplantation in the United States."
http://digestive.niddk.nih.gov/ddiseases/pubs/livertransplant/
If you decide to wait, make sure you at least get a Fibrosure test every year; don't wait and find out in three years you progressed to cirrhosis without knowing it. I don't think your ALT and AST, etc can indicate the condition of your liver, and you may feel fine.
"Tuff" decision, tuffgirl9312! :) You have to do what is best for you. Good luck in doing so, and please, regardless of what you decide, get hooked up with a good doctor very experienced in liver disease. "The good doctor" seems to be one of the most important factors in moving forward whether you decide to treat or wait; do not rely on someone less experienced to monitor or treat you!
Good luck and keep us posted.
Personally, I went into tx not knowing much at all about HCV, the treatment (other than it would/could be rough), or the long term side effects of tx; I only knew that in the long run I would not be getting healthier and it could lead to cirrhosis. One can sit back for a few years and have no signs that one's liver is actually getting worse; no real symptoms until it is too late.
I don't think you said how old you are, general health AND family history of health issues. I am 62 and so many of my siblings, friends, etc. are being blown away with new dx of diabetes, heart disease, high blood pressure, cancer (liver, bladder, lung), cirrhosis, macular degeneration, pancreatitis, blood disorders, vasculitis, fibromyalgia, lupus, crohn's disease, neuropathy, etc. None of them had HCV....these things are going to come as we get older. I guess my point is that to try to figure out what health issues came from HCV tx is kind of a crap shoot.
One thing you know for sure is that your HCV isn't going to get better, or as some people say, "lay dormant". It's there and it's working and fighting to thrive every day. Your situation could change quickly, or not at all...you just don't know, and there won't be any warning signs.
Does one wait til they may develop other health problems that may interfere or rule out tx in the future, or treat while still strong and fairly healthy? Tx is certainly not going to be easier with a more advanced liver stage, other new health issues or with age.
Unfortunately, money dictates a lot of the decision. Having insurance is another important issue. How does one treat when one no longer has insurance? Most don't/can't.
I, like just about everyone else on here, wanted to treat asap and get rid of the ugly monster. I felt blessed to get into a trial to have a chance to hopefully and finally get rid of it and jumped in with both feet and very little knowledge.
If I had known then what I know now from stories on the board, would I have thought it over more carefully? No, I would have been even more compelled to get rid of this virus; that includes knowing the occasional stories of symptoms after tx. I think the stories of more advanced liver disease are far more frightening than the stories of long term side effects.
Just about every symptom people complain about post tx is complained about by many pre-tx. For me it's a "which came first, the chicken or the egg"? Would these issues people think they got from tx come if they hadn't treated? Maybe. Most of them are associated with HCV and liver disease.
I just finished tx last week and I have some issues right now, but all I can do is hope that they will go away with time. Do I regret tx'ing? No, not even if I don't achieve SVR and even if my side effects are permanent. I will keep trying to get rid of this virus.
Someone correct me if I (or this link is wrong), but "In adults, chronic liver failure due to cirrhosis caused by hepatitis C is the most common reason for liver transplantation in the United States."
http://digestive.niddk.nih.gov/ddiseases/pubs/livertransplant/
If you decide to wait, make sure you at least get a Fibrosure test every year; don't wait and find out in three years you progressed to cirrhosis without knowing it. I don't think your ALT and AST, etc can indicate the condition of your liver, and you may feel fine.
"Tuff" decision, tuffgirl9312! :) You have to do what is best for you. Good luck in doing so, and please, regardless of what you decide, get hooked up with a good doctor very experienced in liver disease. "The good doctor" seems to be one of the most important factors in moving forward whether you decide to treat or wait; do not rely on someone less experienced to monitor or treat you!
Good luck and keep us posted.
"I've had a great many auto-immune problems that have been triggered by the Hepatitis C virus itself, but I am not aware of having any long-term problems from the meds themselves."
Did the autoimmune problems arise before or after your first interferon treatment? I have read one article that discusses a few possible auto-immune-type disorders that arise from Hep C alone. I cannot recall it, and I believe it was published prior to conflict of interest disclosure rules.
And I believe the median age for developing cirrohsis is in your mid-60s pretty much no matter what age you contracted Hep C.
"Don't mind rambleon40." Well don't! :-) Mind me or not, the truth is that interferon itself can damage the liver and accelerate the progression of liver disease.
First sentence, Pegassys black box warning: "PEGASYS, like other alpha interferons, may cause or make fatal or life-threatening problems worse (like mental, immune system, heart, liver, lung, intestinal and infections)."
I don't think any of us would try and argue that the likelihood of such events is the same as, say, getting a heart attack from taking an NSAID. It's a higher likelihood.
Dr. Marsano, transplant surgeon in Louisville, told me that autoimmune hepatitis is "very common, very common" during treatment. He said that reactively and spontaneously, and I don't think he meant it happens in the majority of cases, but I don't think he meant 1 in 100 either.
I read so many people (like you, ceanothus) on these forums who tried treatment once or twice, failed and developed cirrhosis. They blame solely the Hep C for the development. Is that right?
Kids, I tried treatment, failed and almost immediately (w/in a year) developed cirrhosis, following evidence of autoimmune hepatitis during treatment. Two years or so ago when I was suffering so intensely from side effects, a nice man who had Hep C and who had undergone a liver transplant spoke to me. He relayed to me that he felt in his heart the interferon treatment is what triggered his liver failure. Maybe he's right. Maybe he's wrong. But it happens! :-) Just the way it is.
Be honest with yourselves - have any of you with the "tried treatment / failed / got cirrohsis" progression considered that the failed treatments triggered and / or accelerated the damage to your livers? It may not be what you want to hear, but the manufacturers' own warnings (as well as ample anecdotal evidence) bear out the possibility.
My neighbor behind me in Colorado (Jack, 70 years old) and I were talking today. He disclosed to me that he has Hep C. He was diagnosed around age 60 by a Mexican doctor who told him he'd be crazy to consider treatment ("That's a really hard treatment. Why go through that now just so old age can kill you?") Jack believes he was infected in 1976 from blood transfusions he received. He has sugar diabetes. He had a stroke, but he's kicking around and having a good time. He says he gets his blood checked once a year and his enzymes are usually slightly elevated. He refuses to get an MRI of his liver as the local GP wants him to do or to do any pharmaceutical treatment for the Hep C. "Why do I want to do that!?"
He doesn't drink. He doesn't smoke. He works out a couple few hours almost every morning. The guy is a hoot, too.
.....................
"No one can tell you with any certainty that you will or will not have long term side effects but the majority do not." That's right - the majority do not have clinical ( bad enough to seek treatment) long term side effects.
Nor, however, do the majority of people with Hep C ever have serious problems from it!
And research indicates that most people do have subclinical (not so bad that they seek treatment) permanent side effects.
So many on these boards operate from a place of "Hep C = End Stage Liver Disease", yet that is not at all borne out by published statistics. Even in the small minority of cases where it does lead to ESLD, it's probably way off in the future (i.e. - sixth decade of life, if at all). Now there are those who will say, "My liver failed at 40 or 29 or 48" or whatever, but the vast majority do not, and the majority of those that do happen later.
There are far too many doctors who think only of "virus bad, no virus good" and do not weigh a persons's lifestyle, quality of life, etc. Watch out for them.
Treatment can take many forms. It need not only be injections with powerful and unpredictable immune-system modulating drugs.
Do what you will, tuffgirl9312, and God bless you and may you have the best of luck.
But go into it with your eyes open. Realize that the reality is that money has for decades driven the research findings, and find a doctor with a healthy healthy respect for the side-effect potential of interferon. I think a good doctor like that might be more likely to identify a patient that needs to stop treatment.
I am sorry that you have to deal with this issue. I pray the best for you.
Did the autoimmune problems arise before or after your first interferon treatment? I have read one article that discusses a few possible auto-immune-type disorders that arise from Hep C alone. I cannot recall it, and I believe it was published prior to conflict of interest disclosure rules.
And I believe the median age for developing cirrohsis is in your mid-60s pretty much no matter what age you contracted Hep C.
"Don't mind rambleon40." Well don't! :-) Mind me or not, the truth is that interferon itself can damage the liver and accelerate the progression of liver disease.
First sentence, Pegassys black box warning: "PEGASYS, like other alpha interferons, may cause or make fatal or life-threatening problems worse (like mental, immune system, heart, liver, lung, intestinal and infections)."
I don't think any of us would try and argue that the likelihood of such events is the same as, say, getting a heart attack from taking an NSAID. It's a higher likelihood.
Dr. Marsano, transplant surgeon in Louisville, told me that autoimmune hepatitis is "very common, very common" during treatment. He said that reactively and spontaneously, and I don't think he meant it happens in the majority of cases, but I don't think he meant 1 in 100 either.
I read so many people (like you, ceanothus) on these forums who tried treatment once or twice, failed and developed cirrhosis. They blame solely the Hep C for the development. Is that right?
Kids, I tried treatment, failed and almost immediately (w/in a year) developed cirrhosis, following evidence of autoimmune hepatitis during treatment. Two years or so ago when I was suffering so intensely from side effects, a nice man who had Hep C and who had undergone a liver transplant spoke to me. He relayed to me that he felt in his heart the interferon treatment is what triggered his liver failure. Maybe he's right. Maybe he's wrong. But it happens! :-) Just the way it is.
Be honest with yourselves - have any of you with the "tried treatment / failed / got cirrohsis" progression considered that the failed treatments triggered and / or accelerated the damage to your livers? It may not be what you want to hear, but the manufacturers' own warnings (as well as ample anecdotal evidence) bear out the possibility.
My neighbor behind me in Colorado (Jack, 70 years old) and I were talking today. He disclosed to me that he has Hep C. He was diagnosed around age 60 by a Mexican doctor who told him he'd be crazy to consider treatment ("That's a really hard treatment. Why go through that now just so old age can kill you?") Jack believes he was infected in 1976 from blood transfusions he received. He has sugar diabetes. He had a stroke, but he's kicking around and having a good time. He says he gets his blood checked once a year and his enzymes are usually slightly elevated. He refuses to get an MRI of his liver as the local GP wants him to do or to do any pharmaceutical treatment for the Hep C. "Why do I want to do that!?"
He doesn't drink. He doesn't smoke. He works out a couple few hours almost every morning. The guy is a hoot, too.
.....................
"No one can tell you with any certainty that you will or will not have long term side effects but the majority do not." That's right - the majority do not have clinical ( bad enough to seek treatment) long term side effects.
Nor, however, do the majority of people with Hep C ever have serious problems from it!
And research indicates that most people do have subclinical (not so bad that they seek treatment) permanent side effects.
So many on these boards operate from a place of "Hep C = End Stage Liver Disease", yet that is not at all borne out by published statistics. Even in the small minority of cases where it does lead to ESLD, it's probably way off in the future (i.e. - sixth decade of life, if at all). Now there are those who will say, "My liver failed at 40 or 29 or 48" or whatever, but the vast majority do not, and the majority of those that do happen later.
There are far too many doctors who think only of "virus bad, no virus good" and do not weigh a persons's lifestyle, quality of life, etc. Watch out for them.
Treatment can take many forms. It need not only be injections with powerful and unpredictable immune-system modulating drugs.
Do what you will, tuffgirl9312, and God bless you and may you have the best of luck.
But go into it with your eyes open. Realize that the reality is that money has for decades driven the research findings, and find a doctor with a healthy healthy respect for the side-effect potential of interferon. I think a good doctor like that might be more likely to identify a patient that needs to stop treatment.
I am sorry that you have to deal with this issue. I pray the best for you.
Thank you can-do-man for the insight and well wishes. Like you, I feel marvelous. No long term anything except I can't stop myself from getting older either. :)
Lots of good info on here Tuffgirl, wishing you the best.
coraggio
Lots of good info on here Tuffgirl, wishing you the best.
coraggio
"The only long term side effect I've had from triple therapy is the HCV is gone forever. No one can tell you with any certainty that you will or will not have long term side effects but the majority do not"
***********************************************
I will gladly accept this long term side effect! I can't wait :)
***********************************************
I will gladly accept this long term side effect! I can't wait :)
Congrats coraggio on your SVR. Pay no mind to rambleon, he seemed to have a tough go of it and blames everything and anything on treatment. I've treated twice now, the last time was for 48 weeks with Vic and happy to report like you the only lasting side effect is SVR. That and since all this started I do Feel 7 years older but maybe thats because I am.
Tuffgirl your one of the lucky ones, the choice is yours. Either way cure rates have never been better...... Good luck
Tuffgirl your one of the lucky ones, the choice is yours. Either way cure rates have never been better...... Good luck
I've had Hepatitis C since 1984 and I'm currently on my third treatment attempt, this time the triple tx with Incivek. Early treatments didn't work and now I've had cirrhosis since at least 2005. The treatments are harder on one with cirrhosis, and they are also somewhat less likely to succeed, so this treatment is not only very hard on me but is also pretty long. Cirrhotics have to treat for 48 weeks.
I've had a great many auto-immune problems that have been triggered by the Hepatitis C virus itself, but I am not aware of having any long-term problems from the meds themselves. It may be that something will turn up down the road, but it would have to be awfully severe (as in lethal) for me to feel it was worse than the long-term effects of the virus.
There is no way to predict what the future will hold for you, but I would guess that the long-term risks of the virus are probably greater than those of the treatment, and then insurance coverage is a huge issue too. If I were in your shoes I'd opt for treatment now. If insurance was not an issue and if your stage was either 0 or 1, then waiting would be a much better option, but it doesn't sound lime a good idea with insurance issues looming in the future. Best wishes with your tough decision, and if you do start treatment be sure to let us know and come on back for any questions and/or moral support.
I've had a great many auto-immune problems that have been triggered by the Hepatitis C virus itself, but I am not aware of having any long-term problems from the meds themselves. It may be that something will turn up down the road, but it would have to be awfully severe (as in lethal) for me to feel it was worse than the long-term effects of the virus.
There is no way to predict what the future will hold for you, but I would guess that the long-term risks of the virus are probably greater than those of the treatment, and then insurance coverage is a huge issue too. If I were in your shoes I'd opt for treatment now. If insurance was not an issue and if your stage was either 0 or 1, then waiting would be a much better option, but it doesn't sound lime a good idea with insurance issues looming in the future. Best wishes with your tough decision, and if you do start treatment be sure to let us know and come on back for any questions and/or moral support.
Thank you willbb. I sense rambleon40 doesn't believe me and if I had one tee tiny little side effect to report other than SVR I most certainly would share it with others but I don't. Glad to see you don't hate me for it. :)
coraggio
coraggio
The only long term side effect I've had from triple therapy is the HCV is gone forever. No one can tell you with any certainty that you will or will not have long term side effects but the majority do not"
-------------------------------
Thanks for posting this... and congratulations on your long term side effect.
I to have heard this from most........
Will
-------------------------------
Thanks for posting this... and congratulations on your long term side effect.
I to have heard this from most........
Will
"The only long term side effect I've had from triple therapy is the HCV is gone forever. No one can tell you with any certainty that you will or will not have long term side effects but the majority do not"
wow....
wow....
My husband did triple tx with Incivek. It didn't work for him, and he had a viral breakthrough at about week 26, so he had to stop, but he did complete the 12 weeks of triple tx with Incivek and 14 more weeks of Interferon and Ribavirin. He had also treated two previous times, neither of which worked for him. Long story short, he has not had any long term negative side effects of any of his treatments so far. His general fatigue level continues to increase year by year, probably due to hepatitis. We hope he will be able to enter a clinical trial soon or that a new treatment will become available to him soon.
Advocate1955
Advocate1955
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