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...)
Thanks for a very informative post and congrats on your successful treatment. I have a very similar story, diagnosed with subtype 2 hep c (the most treatable type, thank goodness) in 2007 at age 50, suspected contraction in 1977 (major shoulder surgery in which blood products were used) but no noticeable symptoms until around 2004 when I started having bad episodes of fatigue. Then I couldn't get the treatment for another FOUR YEARS because of our "best health care system in the world" hassles with health insurance (was a contractor without benefits, and couldn't get insurance for most of that time because of the freakin' pre-existing conditions crap that insurance companies used to be able to screw us with - think about my experience next time you diss "ObamaCare", any of you ignorant haters of it out there). Those were the most stressful and depressing four years of my entire experience just because of how effed up it was not being able to get a treatment that in places like Canada or Europe would just be taken care of immediately. For pete's sake, what if I had developed liver cancer during that waiting??? By the time 3 years of that time period had passed by I was in such a depression I started having suicidal thoughts (probably also due to the disease progressing and the more and more frequent horrible fatigue attacks, which were making just holding a job harder and harder). But then I was lucky enough to land a "regular" job with excellent benefits and finally got the treatment. Tested undetectable 2/3 way thru the treatment and now over 2 years after finishing treatment am still undetectable/SVR. My thyroid did take a beating though, and I now have to take thyroid supplements to correct low thyroid levels, but that seems to be going ok (just a small pill every morning). Fortunately I didn't have too much difficulty with depression during the treatment, which I had been worried about before starting the treatment because of the mental state I was in after battling health insurance companies for 4 years trying to get treated. Needless to say, my life is drastically better now. Like you, I eat extremely healthy, fairly low in carbs and plenty of fruits/vegetables, and I do some moderate exercising every day (bought a nice motorized treadmill for $199!). I would tell others basically the same message as you - IT CAN BE BEAT. If you ARE able to get the treatment and are just apprehensive about it because of what your docs tell you about the risks, side effects of the treatment, etc., have some faith and courage and just DO IT. Taking the risks is better than doing nothing because although not guaranteed, you just might have good results.
jmjm....Well, I knew there would come a time -- and a post -- where we would be in complete agreement :).........
LOL! Almost anyway….as the thread progressed!
Mremeet.....PK sent me this thread as I posted one on 'what the hell is with this middle fat' ! While I am only 133lbs, was 126 at start of tx.....I have also always been fit, slim, good muscle tone, etc. During tx I gained a few, but sure that was from sitting on my arse the whole time and also eating whatever I could, often being things I would never even touch. My sis came over and saw chips, cookies in my room and about fell over. Threw tx, it's anything you can eat! Plus the loss of muscle. Pre tx I was slim, with not much work. Fatigue was ruining my busy, active life for a few years before dx, my eyes always looked like I'd smoked a joint of good stuff! I hated that, as I don't ,yet always looked stoned. Friends would say 'you can see you don't feel good in your eyes! Mental inclarity, 'ditzy' syndrome was common. Finally getting dx'd, while disheartening, was a weight off of my back. I had lied and hid the fatigue for years, feeling lazy. I had lied when I felt terrible, feeling like a hypochondriac after continually being told I was 'fine'. Dx was finally an answer for me. I wasn’t lazy, it wasn’t all in my head…I was sick!
Near 5 mths post tx.....finally feeling better, more clarity than I've had for years, fatigue is much better (most days, still some) but better than before by far. Funny thing is I always healed fast, even with Hep. I get a cut, a flu, I heal quick. That is the same now. BUT....while I am still 'small' I am gaining fat cell's like crazy :( And yep, in the belly, hips. I am back to busy, up and going all day, back to yoga, back to eating excellent...what the &^%$ is going on here , I’m saying! I've watched my sister battle weight, tearfully-frustrated , for years and while most are saying 'yeah right' to my 'weight gain'....it bothers me a lot as I'm worried it won't level off, stop, go back to normal. My metabolism is definitely whacked out! It's like I’m getting a lot of fat cell's I never had before, which s*cks as I believe once an area accumulates them, they pretty much stay and are easier to gain there, etc. (from a womans side, can't I get these *&^%* fat cell's in the chest and my cycle is also way whacked out) Your suggestion on the low carb is my next step, tho I eat really well, but my morning consist of yogurt w/fruit and that I love, and the rest is all organic, low fat, etc. By normal standards (metabolism) I should NOT be gaining body fat. With all the good tx has done…tho not during ….UND 12 wks, post, feeling better, this is a part that worries me also. Face it, we all want to look our best and I want to add to these pretty WHITE eyes I have now ! I’m happy to read it seems to be leveling off for most of you. My first thoughts the past few weeks were just as you said, this tx whacks our systems all over the board. I think many functions in our bodies are totally confused!
Thanks for this thread, I needed it. Have to re-read thru the post by others.
LL
LOL! Almost anyway….as the thread progressed!
Mremeet.....PK sent me this thread as I posted one on 'what the hell is with this middle fat' ! While I am only 133lbs, was 126 at start of tx.....I have also always been fit, slim, good muscle tone, etc. During tx I gained a few, but sure that was from sitting on my arse the whole time and also eating whatever I could, often being things I would never even touch. My sis came over and saw chips, cookies in my room and about fell over. Threw tx, it's anything you can eat! Plus the loss of muscle. Pre tx I was slim, with not much work. Fatigue was ruining my busy, active life for a few years before dx, my eyes always looked like I'd smoked a joint of good stuff! I hated that, as I don't ,yet always looked stoned. Friends would say 'you can see you don't feel good in your eyes! Mental inclarity, 'ditzy' syndrome was common. Finally getting dx'd, while disheartening, was a weight off of my back. I had lied and hid the fatigue for years, feeling lazy. I had lied when I felt terrible, feeling like a hypochondriac after continually being told I was 'fine'. Dx was finally an answer for me. I wasn’t lazy, it wasn’t all in my head…I was sick!
Near 5 mths post tx.....finally feeling better, more clarity than I've had for years, fatigue is much better (most days, still some) but better than before by far. Funny thing is I always healed fast, even with Hep. I get a cut, a flu, I heal quick. That is the same now. BUT....while I am still 'small' I am gaining fat cell's like crazy :( And yep, in the belly, hips. I am back to busy, up and going all day, back to yoga, back to eating excellent...what the &^%$ is going on here , I’m saying! I've watched my sister battle weight, tearfully-frustrated , for years and while most are saying 'yeah right' to my 'weight gain'....it bothers me a lot as I'm worried it won't level off, stop, go back to normal. My metabolism is definitely whacked out! It's like I’m getting a lot of fat cell's I never had before, which s*cks as I believe once an area accumulates them, they pretty much stay and are easier to gain there, etc. (from a womans side, can't I get these *&^%* fat cell's in the chest and my cycle is also way whacked out) Your suggestion on the low carb is my next step, tho I eat really well, but my morning consist of yogurt w/fruit and that I love, and the rest is all organic, low fat, etc. By normal standards (metabolism) I should NOT be gaining body fat. With all the good tx has done…tho not during ….UND 12 wks, post, feeling better, this is a part that worries me also. Face it, we all want to look our best and I want to add to these pretty WHITE eyes I have now ! I’m happy to read it seems to be leveling off for most of you. My first thoughts the past few weeks were just as you said, this tx whacks our systems all over the board. I think many functions in our bodies are totally confused!
Thanks for this thread, I needed it. Have to re-read thru the post by others.
LL
mre - wow nothing like making up for lost time.....speaking of which I think I lost 2 hours reading this....but good stuff (mostly)
Well I have to tell you I have always been an energizer bunny before tx - even had a great deal of energy with the HCV for 20 some odd years until I had to leave my job on disability a year ago – think that’s when it got very chronic.. Even with severe RA on top of it....but the 13 weeks of tx were the absolute worse fatigue wise - but not the kind you can sleep - I had insomnia, anorexia, migraines, RA flares, rashes, heart problems, nausea, could not catch my breath at all - had to stop riding my horses and spend the last 1/2 bed ridden before the autoimmune got so bad they had to take me off July 4th.
But I do think I am still UND (was 203 at day 10 and UND at 3.5 wks and am a 2B.) But I am faced with a whole new dilemma (my journal time frames it). Since I am one of the lucky 4% that get's their autoimmune turned on by this treatment we have to figure out how to turn it off. The Enbrel I was using for years lost it’s mojo mad makes me worse now...so the only option left is another fun chemo used for Lymphomia (rituxan) But unfortunately it also may bring back the virus (or so it is documented with Hep B). As usual there is no documentation for my situation so my docs are pow-wowing at a convention next week to try to figure out what to do - now I am popping steroids and pain pills and dreading every minute of it.
Researching all the natural stuff again...Too bad in the 14 yrs I have had this insidious RA disease I have tried all the meds and there are none left except this one (that also causes deadly brain infections) So from the frying pan into the fire I guess. I'd wait a few months before starting the infusions but my joints are deteriorating before my eyes - I can barely hobble....so let's see would I rather ride my horses or drink champagne - the answer is both! I had some joints injected today so I could manage to finally leave the house and get my horsey fix. Boy did I feel better.
Here is what I posted when I first considered treating - it still runs true
Here's my list of reasons I want to tx now.
1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse every day)
3.) New Drugs that are promising are at least 3 years out.
4.) My anxiety will increase with every day that I wait
5.) I want my energy back!
6.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
7.) I want to show my horses again
8.) I want to be normal again which includes fine wine with fine food at fine restaurants
9.) I want to follow my dreams and goals to be the instrument of inspiration that allows people to realize their full potential and discover their dreams.
10. I want to move into my dream horse ranch in La Cresta (yes kinda by you Mre) and enjoy the **** out of my life…
So here is a toast to "good buy dragon - hello world" for all of us…and Andiamo we are going to have that SVR party – sounds like Mer can join us…and all you other fine people as well…..cuz I am determined to get better!!! We are going to rent that great big boat and sail the bay with a big spinnaker that says SVR was our buried treasure as we slam margarettas and champage listening to Jimmy Buffet....
Congrates to you all! My turn will come....
gee I did a long one too - look what you started ..cranking these steroids helps...couldn't even type a few days ago
Mikkimoe
Well I have to tell you I have always been an energizer bunny before tx - even had a great deal of energy with the HCV for 20 some odd years until I had to leave my job on disability a year ago – think that’s when it got very chronic.. Even with severe RA on top of it....but the 13 weeks of tx were the absolute worse fatigue wise - but not the kind you can sleep - I had insomnia, anorexia, migraines, RA flares, rashes, heart problems, nausea, could not catch my breath at all - had to stop riding my horses and spend the last 1/2 bed ridden before the autoimmune got so bad they had to take me off July 4th.
But I do think I am still UND (was 203 at day 10 and UND at 3.5 wks and am a 2B.) But I am faced with a whole new dilemma (my journal time frames it). Since I am one of the lucky 4% that get's their autoimmune turned on by this treatment we have to figure out how to turn it off. The Enbrel I was using for years lost it’s mojo mad makes me worse now...so the only option left is another fun chemo used for Lymphomia (rituxan) But unfortunately it also may bring back the virus (or so it is documented with Hep B). As usual there is no documentation for my situation so my docs are pow-wowing at a convention next week to try to figure out what to do - now I am popping steroids and pain pills and dreading every minute of it.
Researching all the natural stuff again...Too bad in the 14 yrs I have had this insidious RA disease I have tried all the meds and there are none left except this one (that also causes deadly brain infections) So from the frying pan into the fire I guess. I'd wait a few months before starting the infusions but my joints are deteriorating before my eyes - I can barely hobble....so let's see would I rather ride my horses or drink champagne - the answer is both! I had some joints injected today so I could manage to finally leave the house and get my horsey fix. Boy did I feel better.
Here is what I posted when I first considered treating - it still runs true
Here's my list of reasons I want to tx now.
1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse every day)
3.) New Drugs that are promising are at least 3 years out.
4.) My anxiety will increase with every day that I wait
5.) I want my energy back!
6.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
7.) I want to show my horses again
8.) I want to be normal again which includes fine wine with fine food at fine restaurants
9.) I want to follow my dreams and goals to be the instrument of inspiration that allows people to realize their full potential and discover their dreams.
10. I want to move into my dream horse ranch in La Cresta (yes kinda by you Mre) and enjoy the **** out of my life…
So here is a toast to "good buy dragon - hello world" for all of us…and Andiamo we are going to have that SVR party – sounds like Mer can join us…and all you other fine people as well…..cuz I am determined to get better!!! We are going to rent that great big boat and sail the bay with a big spinnaker that says SVR was our buried treasure as we slam margarettas and champage listening to Jimmy Buffet....
Congrates to you all! My turn will come....
gee I did a long one too - look what you started ..cranking these steroids helps...couldn't even type a few days ago
Mikkimoe
Man, I'm fatigued from reading this thread. Where does everyone get all the time to write this stuff? Not saying it should be discounted, just saying I'm worn out.
I am guaranteed to have a normal liver...I am stage 1 and WHEN I reach SVR (cause I will accept nothing less). I will do everything needed to heal my liver....I'll post the list of suppliments I plan to use when I am done with TX...AND THE RESULTS AS THEY HAPPEN!
and then I will celebrate with a beer (or two)...with my tacos...or nice merlot with my spaghetti and meat balls.
and then I will celebrate with a beer (or two)...with my tacos...or nice merlot with my spaghetti and meat balls.
Nygirl I love ya to death, and I know everyone needs their daily drama quotient, but you're wrong. You have to actually read everything from start to finish in order to understand my response to magnum and DD. I realize that would be a very tedious and boring thing to do, so I don't blame you for not doing so. But if you have to weigh in and pass judgment, at least read what was said from beginning to end. And if you still feel that way, that's fine you're entitled to your opinion. But I don't feel that way, and I'm also entitled to my own opinion - especially if someone is speaking directly to me in a derogatory manner (as magnum was) or in a quasi-derogatory/dismissive manner (as DD was). That's why I substantiated everything I said with concise logic. And as far as being drunk, I know you're just being facetious and perhaps a little sarcastic. But if you think I've said anything above that's incorrect (which is what happens when you're drunk), then please explicitly point it out to me so I can understand what you're talking about.
I also would worry pretty much that once you are prone to damage it might be easier to have it come back even IF some fibrotic reversal were to happen. I know there is no studies done on that but to me it just seems sensible. Like it could be weakened to a degree.
And you are right the whole point is NO MORE DAMAGE - reversing a grade or stage isn't the issue it's making sure we don't get any MORE damage. We could live a very healthy life with stage 3 all the while as long as it doesn't progress farther - that is the two in the bush I guess! :)
And you are right the whole point is NO MORE DAMAGE - reversing a grade or stage isn't the issue it's making sure we don't get any MORE damage. We could live a very healthy life with stage 3 all the while as long as it doesn't progress farther - that is the two in the bush I guess! :)
I agree with you about no guarantees the liver will go back to normal. Stage 3 means lots of scar tissue and my concern is stopping the progression of damage rather than my liver returning to "normal" which isn't going to happen regardless of SVR. It's functioning fine right now as far as I know and SVR is a guarantee of no more damage. That's far more exciting to me than my liver dropping down a stage. A bird in the hand is worth 2 in the bush.
Trin
Trin
Knocking two of the most experienced and knowledgable members of this forum (Magnum and DD) hardly is a way to make any point whatsoever. In fact I gave up reading all the rambling insults quite a way back and have to say - I don't understand why you are going on in this major tirade over nothing. Let it GO and just enjoy your SVR!
Did you have too much suds or too little before posting? ;)
FL Gator -
"If I achieve SVR and my liver returns to normal in (guessing) 6 months to a year,"
Remember, there is NO guarantee your liver will go back to 'normal'. Be careful. SVR is a precious thing and more than that so if you liver. I'm not saying you "can't" ever drink again but - don't assume that your liver will be able to handle it. A damaged liver is still that - damaged and unless you have certainty it's just not worth the chance (otherwise why bother treating at all)?
Did you have too much suds or too little before posting? ;)
FL Gator -
"If I achieve SVR and my liver returns to normal in (guessing) 6 months to a year,"
Remember, there is NO guarantee your liver will go back to 'normal'. Be careful. SVR is a precious thing and more than that so if you liver. I'm not saying you "can't" ever drink again but - don't assume that your liver will be able to handle it. A damaged liver is still that - damaged and unless you have certainty it's just not worth the chance (otherwise why bother treating at all)?
I only read halfway down on comments before I thought I would add my opinion. Many people mentioned they had "allergy" problems pre-tx. Mine got really bad after Tx, probably becuase of the bleeding that was fairly constant in my sinuses during treatment. But after all the multiple drugs to try and breath and not have snot running down my face while I tried to brush my teeth (sorry), I found something that works!! I use a cold air vaporizer at night and sinal rinse (my pharmasist calls it a sinus enema). But it's amazing the difference it has made!! Maybe it would work pre and during treatment, maybe it could help? Who knows.
Your comments prove my point. Your discussion at this point seems to be with yourself. My original point was only this: some get rid of fatigue, some don't. Its a mixed bag. You manage to make a Mt. Everest, out of a grain of sand. Have at it, and enjoy getting all lathered up over nothing at all. Relax, and enjoy your SVR.
DD
DD
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
Congratulations on escaping the dragon!
You helped (and entertained) me and a lot of other people while you were here. Now go drink beer, do sex, drugs & rock n' roll, he!! wear high heels and lipstick if it takes your fancy. Have a great life,
Best wishes,
dointime
You helped (and entertained) me and a lot of other people while you were here. Now go drink beer, do sex, drugs & rock n' roll, he!! wear high heels and lipstick if it takes your fancy. Have a great life,
Best wishes,
dointime
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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