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 do not intend to drink, if I ever get rid of this dang disease. That is because in my history I was unable to drink in moderation. If I drank, I drank with the sole purpose of getting to the point of relaxation, or a buzz, or whatever term you wish to put on it. Drinking one glass of wine or one beer, was not something that I could do. If I had one rum and coke, I wanted 3 rum and cokes. So, no, I do not want alcohol to be a part of my life anymore.
Susan400
Susan400
Well now that I am 12 weeks post treatment undetected hoping(praying) for SVR at 24 with F1 mild liver damage I know I intend to drink in moderation if am am lucky enough to SVR. If I had advanced liver damage I would not, but after what is probably many years with hep c and only f1 I believe it is not irresponsible to drink in moderation if SVR. I think anyone on this web site is smart enough to know whether to drink or not after SVR and to drink wisely. (no pun intended).
I am also one of the lucky ones that feels better than I have in years after treatment.
Mary Ellen
I am also one of the lucky ones that feels better than I have in years after treatment.
Mary Ellen
I like the way you talk i like the way you walk
you my Susie Q
Dale Hawkins alias
ca alias
Ziggy Stardust
you my Susie Q
Dale Hawkins alias
ca alias
Ziggy Stardust
I have both questions that I was hoping someone might have info on and then some comments from everything I've read above.
1) is there any correlation between lack of symptomology and
disease that is more refractory to treatment?
2) is there any indication that working out can cause the body's immune system to stay "too strong" to allow the anti viral portion of the medication to work in order to eradicate the virus?
Comments:
I think that treatment does tend to jack with metabolism (since I am no longer procrit dependent whereas I was prior to treatment) but I don't know have a complete theory on how this occurs other than that of course it affects the bone marrow and its my belief that this is what causes the myriad of infections in some folks like mremeet (and myself) after treatment. I've been hospitalized several times post treatment and infection was the number 1 reason, whereas during tx, it was always due to blood transfusion. My own pet theory on the more serious auto immune diseases that occur a year or more after tx are that they are diseases we are genetically predisposed to but that might never have been realized in our system had they not gained a foothold after treatment when our bone marrow is suppressed by the interferon. Because some of you may not notice or know that you have mild levels of bone marrow suppression. We are all so used to the ribavirin pulling our blood counts down that it takes something dramatic for them to find out your bone marrow is suppressed but I would think frequent infections might be a good indicator. (Of course let me throw a minor monkey wrench into my own pet theory by saying I had symptoms of RA from almost the first thought and surely your immune system isn't eradicated so fast. Although then again, it is beaten down substantially or the ribavirin couldn't work to take you to UND in two weeks... I don't know...)
Sometimes it seems to me like people get really confused about the etiology of their symptomology between things that are hep c related and things that are hep c TREATMENT related because both inteferon and hep c can cause the same issues. To me though, it seems like if prior to treatment you do not have symptoms of RA but you develop RA during or immediately following a successful treatment, then your RA is almost certainly caused by the inteferon. Same thing goes for fatigue or any other issue that can be caused by either hep c or interferon.
actually, i expected to get an ai disease going into treatment. what with my luck and the literature I'd read. I am happy that RA looks to be my only ai disease thus far though (and not lupus or m.s.) now that it looks like that one area on my leg was a burn and not some weird ai skin manisfestation as they first thought. I did have an extrahepatic lesion at the beginning of my acute period, but that's not treatment related and like my other acute symptoms, it resolved with treatment. My brain is still a little fried but I hope one day to have a normal conversation again without a dictionary in my hand ;)
mremeet, I'm low carbing also. I've lost 20 lbs treatment weight and have 20 to go.
1) is there any correlation between lack of symptomology and
disease that is more refractory to treatment?
2) is there any indication that working out can cause the body's immune system to stay "too strong" to allow the anti viral portion of the medication to work in order to eradicate the virus?
Comments:
I think that treatment does tend to jack with metabolism (since I am no longer procrit dependent whereas I was prior to treatment) but I don't know have a complete theory on how this occurs other than that of course it affects the bone marrow and its my belief that this is what causes the myriad of infections in some folks like mremeet (and myself) after treatment. I've been hospitalized several times post treatment and infection was the number 1 reason, whereas during tx, it was always due to blood transfusion. My own pet theory on the more serious auto immune diseases that occur a year or more after tx are that they are diseases we are genetically predisposed to but that might never have been realized in our system had they not gained a foothold after treatment when our bone marrow is suppressed by the interferon. Because some of you may not notice or know that you have mild levels of bone marrow suppression. We are all so used to the ribavirin pulling our blood counts down that it takes something dramatic for them to find out your bone marrow is suppressed but I would think frequent infections might be a good indicator. (Of course let me throw a minor monkey wrench into my own pet theory by saying I had symptoms of RA from almost the first thought and surely your immune system isn't eradicated so fast. Although then again, it is beaten down substantially or the ribavirin couldn't work to take you to UND in two weeks... I don't know...)
Sometimes it seems to me like people get really confused about the etiology of their symptomology between things that are hep c related and things that are hep c TREATMENT related because both inteferon and hep c can cause the same issues. To me though, it seems like if prior to treatment you do not have symptoms of RA but you develop RA during or immediately following a successful treatment, then your RA is almost certainly caused by the inteferon. Same thing goes for fatigue or any other issue that can be caused by either hep c or interferon.
actually, i expected to get an ai disease going into treatment. what with my luck and the literature I'd read. I am happy that RA looks to be my only ai disease thus far though (and not lupus or m.s.) now that it looks like that one area on my leg was a burn and not some weird ai skin manisfestation as they first thought. I did have an extrahepatic lesion at the beginning of my acute period, but that's not treatment related and like my other acute symptoms, it resolved with treatment. My brain is still a little fried but I hope one day to have a normal conversation again without a dictionary in my hand ;)
mremeet, I'm low carbing also. I've lost 20 lbs treatment weight and have 20 to go.
Just wanted to share and say.Yea for you.That's an awfully good read when your waiting to start treating...I love good news.
Tammy
Tammy
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