Aa
Recovering from Hepatitis C and its treatment - an update
Hey y'all, thought I'd stop by and give a holler. Things seems a little different here lately, lots more subdivisions in the hepatitis forums (with hep A, hep B, automimmune etc). Some other new features seem to be added to the board, which I think are stupid. But whatever, don’t want to be too negative.
Anyway, just thought I'd give an update of how it feels to recover from both hepatitis C and its treatment for those either pondering treatment or currently undergoing it. A quick refresher on my stats: 42 yo, male, geno 1a, VL~1.5 million IU/ml, F1 fibrosis, infected from 1983 to 2006, enrolled in Vertex VX950/telaprevir Prove 1 trial in summer of 2006, received SOC+VX950, got bad VX950 rash about 7 weeks in (stopped VX early), eventually underwent 41 weeks of treatment. Went UND by week 2 and have remained UND all the way through and 6 months post tx - SVR.
So what's it feel like to have had HCV for so long, to have been successfully treated and to now finally be cured of HCV after having the virus for almost 25 years? Before answering that let me first preface what I’m about to say by stating the following: For one thing let me say that not everyone has symptoms, or at least no "apparent" symptoms, of having hep C. Over the years I’ve spoken to many people with HCV who have told me that they never knew they had it and that it didn't really bother them. The non-symptomatic folks are the lucky ones, because many other people do have symptoms. I’m one of those people and always had symptoms of HCV. The main symptom I had was chronic fatigue. Crushing fatigue at times that would weigh on me like a ton of bricks. This fatigue was my near constant companion throughout my late teens (infected at 17), all through my 20's, 30's and into my early 40's. So going into treatment I had high hopes, albeit very cautionary and measured, I would be successfully treated…and with any luck finally offload at least some of the fatigue that has plagued me for nearly a quarter century.
So what HAS happened after being treated and ridding myself of the virus? Well, a lot of things. Let me speak firstly of physical well being after treatment. As the drugs wore off late last summer (stopped tx in early June ’07), my body was a wreck. My cholesterol was very high, I was weak, totally out of shape and would sweat and huff and puff with the slightest exertion. Initially I was somewhat underweight as I was during treatment. I started treatment at 185lbs, dropped to about 168lbs during treatment, and then finished off about 175lbs. During that time my body composition changed though, I lost muscle mass and gained body fat around my belly. They call it “intra-abdominal” fat. It’s where fat collects around your organs and trunk and it’s especially unhealthy for you. Well that’s what seemed to happen to me. And it’s not surprising, I didn’t exercise a whit all during my treatment and I ate the worst foods imaginable – ice cream, hamburgers, pizza, sugary sodas, the works. It’s not that I’m really lazy or dietetically stupid, I just couldn’t exercise when I was “drug sick” in treatment. I also couldn’t eat properly and could only eat what tasted good. Hard to explain, but eating properly during treatment was out of the question for me. I planned on correcting for it later after recovering.
Anyway, a few months off the drugs and my weight ballooned right up to 207lbs, which for me is the heaviest I’ve ever been in my whole life. I’ve always been tall and thin and in pretty good shape. But my appetite was voracious and I had cravings for all sorts of things, including heavy, high calorie beers (which some of you may recall me talking about). Somehow coming off the drugs had ramped up my appetite and it seemed as if my metabolism had been thrown grossly out of whack. I figured the interferon had tweaked my thyroid functions in a manner that caused overeating and weight gain. The normal regulatory functions that governed appetite and weight gain/loss seemed wildly out of balance. This state of affairs and my new 207lb fatty body continued into the winter of ’07. I knew I had to do something about it, I couldn’t continue on like that so as my new year’s resolution I decided to get off my fat *** and take action. I stopped all beer drinking and ate a decent diet, I rode my bike every day. Usually this is all it would take for me to lose weight very quickly. But nothing doing. I rode and rode and rode my bike like a madman almost every day and I strictly avoided all beer and ate healthy foods. Weeks and weeks went by and I could not lose any weight. I might lose a few pounds and feel like I was making progress, but then a few more pounds would seemingly magically glue itself right back on again. It was as if 207lbs was my new weight. It was as if my endocrine system had drawn a new line in the sand, and that line was the “207th lb parallel” (just like 185lbs had previously been for many years for me).
I was getting worried, I didn’t want to be fat and I certainly didn’t want the problems of diabetes and high blood pressure that came with it. I just couldn’t believe that after all my hard work exercising and eating a fairly strict diet (with NO beer), that I couldn’t at least break into the 190’s. Something was definitely wrong, there had clearly been some sort of fundamental shift in my metabolic rate, almost certainly brought on by 41 weeks of interferon - there was simply no way around it. So out of desperation I decided to try a low carb diet while maintaining a high activity rate. I fairly strictly avoided starches and carbs, although I would still have a small bowl of cereal in the morning and would occasionally have a little bread here and there. But in general my diet, which was normally pretty high in carbs, was drastically curtailed into low carb-land. Every day I would go for long walks with a 30lb pack on my back walking up and down the hills of San Diego. Then on weekends I’d go to the beach at Torrey Pines and walk and walk and walk. Walk past the naked people at Black’s Beach, walk past the hang glider dudes soaring over the cliffs, walk onward to LaJolla, turn around and come back and do it all over again. And guess what? BINGO 17 pounds flew off, and I dropped right back down to 190lbs within just a few weeks. The low carb diet along with heavy activity did it, but I’m pretty sure it was mostly curtailing carbohydrates that was responsible (something I’ve never tried before).
Anyway, sorry to be too detailed oriented and drone on about this, but I’m sure that others have struggled (or will struggle) with this sorta thing after their own treatment ends. So I wanted to go into detail as to what works for weight management. But that was a few months ago and now my weight is pretty close to my original weight of 185lbs. I’d actually like to keep it closer to 190lbs because I feel and look a little better at that weight. And the strange thing is, is that now I can eat carbs again and even drink a few beers here and there and my weight stays where it is now. It was as if my metabolism needed a kick of a sort to reset it back to where it was before treatment. Which brings me to my point (yes I do have one ;-) – interferon based treatment tweaks your system. It alters your metabolic rate and can shift the way you feel about food (as in how much you crave it and what types of food you want) and the way your body both takes on weight and sheds weight. If you plan interferon based treatment soon, expect these effects and watch out for its effects after the shootin’ match is over. (cont...)
Anyway, just thought I'd give an update of how it feels to recover from both hepatitis C and its treatment for those either pondering treatment or currently undergoing it. A quick refresher on my stats: 42 yo, male, geno 1a, VL~1.5 million IU/ml, F1 fibrosis, infected from 1983 to 2006, enrolled in Vertex VX950/telaprevir Prove 1 trial in summer of 2006, received SOC+VX950, got bad VX950 rash about 7 weeks in (stopped VX early), eventually underwent 41 weeks of treatment. Went UND by week 2 and have remained UND all the way through and 6 months post tx - SVR.
So what's it feel like to have had HCV for so long, to have been successfully treated and to now finally be cured of HCV after having the virus for almost 25 years? Before answering that let me first preface what I’m about to say by stating the following: For one thing let me say that not everyone has symptoms, or at least no "apparent" symptoms, of having hep C. Over the years I’ve spoken to many people with HCV who have told me that they never knew they had it and that it didn't really bother them. The non-symptomatic folks are the lucky ones, because many other people do have symptoms. I’m one of those people and always had symptoms of HCV. The main symptom I had was chronic fatigue. Crushing fatigue at times that would weigh on me like a ton of bricks. This fatigue was my near constant companion throughout my late teens (infected at 17), all through my 20's, 30's and into my early 40's. So going into treatment I had high hopes, albeit very cautionary and measured, I would be successfully treated…and with any luck finally offload at least some of the fatigue that has plagued me for nearly a quarter century.
So what HAS happened after being treated and ridding myself of the virus? Well, a lot of things. Let me speak firstly of physical well being after treatment. As the drugs wore off late last summer (stopped tx in early June ’07), my body was a wreck. My cholesterol was very high, I was weak, totally out of shape and would sweat and huff and puff with the slightest exertion. Initially I was somewhat underweight as I was during treatment. I started treatment at 185lbs, dropped to about 168lbs during treatment, and then finished off about 175lbs. During that time my body composition changed though, I lost muscle mass and gained body fat around my belly. They call it “intra-abdominal” fat. It’s where fat collects around your organs and trunk and it’s especially unhealthy for you. Well that’s what seemed to happen to me. And it’s not surprising, I didn’t exercise a whit all during my treatment and I ate the worst foods imaginable – ice cream, hamburgers, pizza, sugary sodas, the works. It’s not that I’m really lazy or dietetically stupid, I just couldn’t exercise when I was “drug sick” in treatment. I also couldn’t eat properly and could only eat what tasted good. Hard to explain, but eating properly during treatment was out of the question for me. I planned on correcting for it later after recovering.
Anyway, a few months off the drugs and my weight ballooned right up to 207lbs, which for me is the heaviest I’ve ever been in my whole life. I’ve always been tall and thin and in pretty good shape. But my appetite was voracious and I had cravings for all sorts of things, including heavy, high calorie beers (which some of you may recall me talking about). Somehow coming off the drugs had ramped up my appetite and it seemed as if my metabolism had been thrown grossly out of whack. I figured the interferon had tweaked my thyroid functions in a manner that caused overeating and weight gain. The normal regulatory functions that governed appetite and weight gain/loss seemed wildly out of balance. This state of affairs and my new 207lb fatty body continued into the winter of ’07. I knew I had to do something about it, I couldn’t continue on like that so as my new year’s resolution I decided to get off my fat *** and take action. I stopped all beer drinking and ate a decent diet, I rode my bike every day. Usually this is all it would take for me to lose weight very quickly. But nothing doing. I rode and rode and rode my bike like a madman almost every day and I strictly avoided all beer and ate healthy foods. Weeks and weeks went by and I could not lose any weight. I might lose a few pounds and feel like I was making progress, but then a few more pounds would seemingly magically glue itself right back on again. It was as if 207lbs was my new weight. It was as if my endocrine system had drawn a new line in the sand, and that line was the “207th lb parallel” (just like 185lbs had previously been for many years for me).
I was getting worried, I didn’t want to be fat and I certainly didn’t want the problems of diabetes and high blood pressure that came with it. I just couldn’t believe that after all my hard work exercising and eating a fairly strict diet (with NO beer), that I couldn’t at least break into the 190’s. Something was definitely wrong, there had clearly been some sort of fundamental shift in my metabolic rate, almost certainly brought on by 41 weeks of interferon - there was simply no way around it. So out of desperation I decided to try a low carb diet while maintaining a high activity rate. I fairly strictly avoided starches and carbs, although I would still have a small bowl of cereal in the morning and would occasionally have a little bread here and there. But in general my diet, which was normally pretty high in carbs, was drastically curtailed into low carb-land. Every day I would go for long walks with a 30lb pack on my back walking up and down the hills of San Diego. Then on weekends I’d go to the beach at Torrey Pines and walk and walk and walk. Walk past the naked people at Black’s Beach, walk past the hang glider dudes soaring over the cliffs, walk onward to LaJolla, turn around and come back and do it all over again. And guess what? BINGO 17 pounds flew off, and I dropped right back down to 190lbs within just a few weeks. The low carb diet along with heavy activity did it, but I’m pretty sure it was mostly curtailing carbohydrates that was responsible (something I’ve never tried before).
Anyway, sorry to be too detailed oriented and drone on about this, but I’m sure that others have struggled (or will struggle) with this sorta thing after their own treatment ends. So I wanted to go into detail as to what works for weight management. But that was a few months ago and now my weight is pretty close to my original weight of 185lbs. I’d actually like to keep it closer to 190lbs because I feel and look a little better at that weight. And the strange thing is, is that now I can eat carbs again and even drink a few beers here and there and my weight stays where it is now. It was as if my metabolism needed a kick of a sort to reset it back to where it was before treatment. Which brings me to my point (yes I do have one ;-) – interferon based treatment tweaks your system. It alters your metabolic rate and can shift the way you feel about food (as in how much you crave it and what types of food you want) and the way your body both takes on weight and sheds weight. If you plan interferon based treatment soon, expect these effects and watch out for its effects after the shootin’ match is over. (cont...)
I get this feeling you are out to prove a point that you are miserable. You knock the members, you knock the site in your opening statement, you use the words stupid, dumb, disjointed, gloomy cyber squatters, etc..
You've been away for a while. That is a good thing...
Magnum
You've been away for a while. That is a good thing...
Magnum
"Anyway, I think that most of the rational, experienced forum members here have a good feel for what previous studies, and surveys have stated."
Oh I see, and naturally you're counting yourself amongst the "most rational" lot ehh? And being that you're so rational you can all but dismiss what I've said above without taking me on point for point as meticulously described above (or providing all these myriad of conclusive studies you refer to...without referring to them at all, of course). No surprises you've decided not to provide either. And certainly no surprises that my assertion sticks in your craw because it flies in the face of your phobial theory that HCV fatigue can be imparted to others merely by casual contact or by merely being in their presence. *Even if you're an SVR and the other person is not infected.* If what I'm saying is true and that many (if not most) SVR's who previously experienced fatigue experience an improvement post tx, that wouldn't quite fit in your projective hypochondriacal theory, would it? And because it doesn't fit, it's bad. And because it's bad, it needs to be dismissed. *Right* Keep those rational theories coming DD.
Well, the remainder of this post is not directed to DD or jim or other gloomy cyber squatters. You guys are great people, kind and intelligent and very helpful to people who come here to learn and be helped. I know you mean well and have good hearts. But you don't know everything and you have your own biases and prejudices and phobias and fears when it comes to this sort of thing. Sorry, but it's true, and it's high time someone like me stated it plainly and directly on the record so someone who's trying to learn about this subject can recall it and find it in search engines. That's why I'm leaving this post here, as a sort of message in a bottle for those out there who are infected, scared, tired and with lead weights on their eyelids. A message they might be able to find, even years from now, that can help shed preciously rare light on this situation. You know who you are, and I know who you are because I was one of you for a long, long time. I used to look high and low for information and personal accounts about the possibility of resolving fatigue after SVR-ing. Those stories are far and few between, people generally don't write them. The people who get better do just that - they just get better and leave. Only the ones that still feel like sh*t, or have other ongoing problems (including emotional ones, like some of the obviously irrational phobias mentioned above) will hang around and contribute. So you're only going to hear from them, not the success stories.
But I found a way out of the fatigue and for once someone has to take the time to NOT just run off as soon as they get better, but to spend a little time to spell it out in articulate terms about what can happen when you SVR. And I most certainly do NOT believe I'm some kind of freak rarety. I believe what happened to me is fairly common - much more common than you might be led to believe by listening only to some of the gloomy online "experts" you're likely to run into on internet support forums (like here). My very experienced hepatologist told me this before I treated. I basically didn't believe him and dimissed what he said based on what I had heard here (and a few other online forums). I thought he was just saying that to be optimistic and to talk me into treatment. I had nagging fears all through treatment that I would not be rid of the fatigue based on what I heard here. But my excellent liver doctor was right, and what I heard so often here was wrong. It worked out for me and it can work out for you too. No guarantees of course, I'm sure plenty of people treat and for whatever reason they don't get a clear resolution of fatigue. But many do, make no mistake about it. So in closing, just remember: Many people who have HCV related fatigue experience relief from that fatigue after treating successfully and achieving SVR. Yes it's true! And just because there's a few online sad sacks who incessantly beat the persistent/occult infection/fatigue drum won't make that fact any less true. The end. ;-)
Oh I see, and naturally you're counting yourself amongst the "most rational" lot ehh? And being that you're so rational you can all but dismiss what I've said above without taking me on point for point as meticulously described above (or providing all these myriad of conclusive studies you refer to...without referring to them at all, of course). No surprises you've decided not to provide either. And certainly no surprises that my assertion sticks in your craw because it flies in the face of your phobial theory that HCV fatigue can be imparted to others merely by casual contact or by merely being in their presence. *Even if you're an SVR and the other person is not infected.* If what I'm saying is true and that many (if not most) SVR's who previously experienced fatigue experience an improvement post tx, that wouldn't quite fit in your projective hypochondriacal theory, would it? And because it doesn't fit, it's bad. And because it's bad, it needs to be dismissed. *Right* Keep those rational theories coming DD.
Well, the remainder of this post is not directed to DD or jim or other gloomy cyber squatters. You guys are great people, kind and intelligent and very helpful to people who come here to learn and be helped. I know you mean well and have good hearts. But you don't know everything and you have your own biases and prejudices and phobias and fears when it comes to this sort of thing. Sorry, but it's true, and it's high time someone like me stated it plainly and directly on the record so someone who's trying to learn about this subject can recall it and find it in search engines. That's why I'm leaving this post here, as a sort of message in a bottle for those out there who are infected, scared, tired and with lead weights on their eyelids. A message they might be able to find, even years from now, that can help shed preciously rare light on this situation. You know who you are, and I know who you are because I was one of you for a long, long time. I used to look high and low for information and personal accounts about the possibility of resolving fatigue after SVR-ing. Those stories are far and few between, people generally don't write them. The people who get better do just that - they just get better and leave. Only the ones that still feel like sh*t, or have other ongoing problems (including emotional ones, like some of the obviously irrational phobias mentioned above) will hang around and contribute. So you're only going to hear from them, not the success stories.
But I found a way out of the fatigue and for once someone has to take the time to NOT just run off as soon as they get better, but to spend a little time to spell it out in articulate terms about what can happen when you SVR. And I most certainly do NOT believe I'm some kind of freak rarety. I believe what happened to me is fairly common - much more common than you might be led to believe by listening only to some of the gloomy online "experts" you're likely to run into on internet support forums (like here). My very experienced hepatologist told me this before I treated. I basically didn't believe him and dimissed what he said based on what I had heard here (and a few other online forums). I thought he was just saying that to be optimistic and to talk me into treatment. I had nagging fears all through treatment that I would not be rid of the fatigue based on what I heard here. But my excellent liver doctor was right, and what I heard so often here was wrong. It worked out for me and it can work out for you too. No guarantees of course, I'm sure plenty of people treat and for whatever reason they don't get a clear resolution of fatigue. But many do, make no mistake about it. So in closing, just remember: Many people who have HCV related fatigue experience relief from that fatigue after treating successfully and achieving SVR. Yes it's true! And just because there's a few online sad sacks who incessantly beat the persistent/occult infection/fatigue drum won't make that fact any less true. The end. ;-)
mreemeet: congratulations on your milestone - and yes, the notion that some SVRs are more durable than others seems unfounded - enjoy yours!
all: when I get around to txing again I plan to repeat my post-tx experiment - not test VL for 2-3 years and see if I can tell whether I've relapsed or not. Last time I waited 2 years and guessed wrong ( I thought I was SVR but had relapsed). As far as I can tell, this sort of "blind" test is the only way of getting reliable information on whether SVR improves quality of life.
Studies like the two Poynard ones cited above seem intrinsically suspect; self-reported symptoms like fatigue and depression, though very real, are near-impossible to calibrate. I know this from experience as I was recently asked to complete a very long and thorough QOL questionnaire while navigating one of my low spots. On a bad day, it takes *way* too much energy to explain how and why you're down , let alone try to measure how bad you're feeling - just write something, get the d*mm thing over with, and keep breathing.
all: when I get around to txing again I plan to repeat my post-tx experiment - not test VL for 2-3 years and see if I can tell whether I've relapsed or not. Last time I waited 2 years and guessed wrong ( I thought I was SVR but had relapsed). As far as I can tell, this sort of "blind" test is the only way of getting reliable information on whether SVR improves quality of life.
Studies like the two Poynard ones cited above seem intrinsically suspect; self-reported symptoms like fatigue and depression, though very real, are near-impossible to calibrate. I know this from experience as I was recently asked to complete a very long and thorough QOL questionnaire while navigating one of my low spots. On a bad day, it takes *way* too much energy to explain how and why you're down , let alone try to measure how bad you're feeling - just write something, get the d*mm thing over with, and keep breathing.
You can't just blame mremeet for his uncontrollable rambling. I feel that the effects of post TX in many, including myself has altered the brain waves in such a manner as to re-clarify one's standing in the oratory expulsion of feelings that don't necessarily reflect on the person's true beliefs, but rather on verbal diarrhea that is caused by being out of control after the repositioning or embellishing of brain waves.
There are a lot of classic examples in the criteria met by most patients who seek psychological and psychiatric care, as one of my friends experienced in a mental institute in New Jersey. The final analysis was that although the person "felt" he was cured, it was far from over, with lingering after effects of the medication. This may very well be mrmeet's case.
Have patience and realize that we too could end up in his shoes. I know for a fact that I have never returned to normal after my four treatments. I honestly don't know if I ever will, but it's better than being another statistic. All in all, no one gets out of this unscathed. Maybe brmeet is a perfect example...
Magnum
There are a lot of classic examples in the criteria met by most patients who seek psychological and psychiatric care, as one of my friends experienced in a mental institute in New Jersey. The final analysis was that although the person "felt" he was cured, it was far from over, with lingering after effects of the medication. This may very well be mrmeet's case.
Have patience and realize that we too could end up in his shoes. I know for a fact that I have never returned to normal after my four treatments. I honestly don't know if I ever will, but it's better than being another statistic. All in all, no one gets out of this unscathed. Maybe brmeet is a perfect example...
Magnum
Wow! That was sure a mouthful! Anyway, I think that most of the rational, experienced forum members here have a good feel for what previous studies, and surveys have stated. I gave you my opinion. Other members gave you theirs. If you don't agree, fine. But, this rambling, disjointed, foaming at the mouth, insulting stuff....makes me think you are in the grips of post-tx sx yourself. Possibly post traumatic stress disorder. Talk about over-reacting!!! Sheesh!
DoubleDose
DoubleDose
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