Aa
At my wits end
hi, again. I need to vent, and I think that if I complain to my husband, he will turn me in for a new model. I am HepC, and had severe reactions to the sx of Pegysus and Riba. At week 30, I am still in the house. Sitting up tires me, and I was a very active person. unfortunately the doc is completely disinterested, the insurance co. never had to pay for the meds, and I am probably the only one to gain weight on this program. I am tired, have nearly every "flu like " symptom, and I am ruined financially. Since the doc dismisses the sx, I can only pray that I do not need the rescue drugs. I cannot afford any more anyway. I feel like a fat slug, who can hardly make it across the room. I am 58 and now look 68. Yes, I am on antidepressants. I am so tired of this. How do people who stay as sick as I have get through this. Believe me, I am not exaggerating.
I guess I'm confused why it was OK to do a triathlon when I had Hep C but not OK to do one now that I am SVR. Not trying to argue any point, just sharing some thoughts. No response necessary.
MEDICAL PROFESSIONAL
6 hour event; Not a wise thing to do. Why gamble - be glad you got a major portion of your life back.
HR:I would not be concerned with intense exercise, but would not run marathons, 10ks or participate in triathlons - *basically nothing that deeply and profoundly exhausts you.*
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LOL. I guess I should have been more specific. I am talking about physical exertion on the level of a triathlon or possibly more extreme. This would not be an every-day or every-year thing, but something I may train for.
To be prudent, I would wait until one year post EOT and make sure I was still non-detectible. Assuming thus, do you think my virus could actually reactivate -- and 'destroy :) -- the SVR model, or just maybe an enzyme flare?
I did do a six hour event (to profound exhaustion) four years before I started treating without any significant flare in enzymes. I understand some of these waters are uncharted but still appreciate your take.
-- Jim
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LOL. I guess I should have been more specific. I am talking about physical exertion on the level of a triathlon or possibly more extreme. This would not be an every-day or every-year thing, but something I may train for.
To be prudent, I would wait until one year post EOT and make sure I was still non-detectible. Assuming thus, do you think my virus could actually reactivate -- and 'destroy :) -- the SVR model, or just maybe an enzyme flare?
I did do a six hour event (to profound exhaustion) four years before I started treating without any significant flare in enzymes. I understand some of these waters are uncharted but still appreciate your take.
-- Jim
MEDICAL PROFESSIONAL
I would not be concerned with intense exercise, but would not run marathons, 10ks or participate in triathlons - basically nothing that deeply and profoundly exhausts you.
RTS: See, told you exercise was bad.
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LOL.
Not sure I go along with your "natural" approach to losing weight and frankly now that the virus is gone I'm about seven pounds overweight!
From everything I've read/experienced, the only way you're going to get down to your ideal weight is not by temporary "diet" but by a new, healthier eating plan that you can maintain for life. This is no quick fix and it will involve a committment. Not a cheeseburger but a committment :)
-- Jim
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LOL.
Not sure I go along with your "natural" approach to losing weight and frankly now that the virus is gone I'm about seven pounds overweight!
From everything I've read/experienced, the only way you're going to get down to your ideal weight is not by temporary "diet" but by a new, healthier eating plan that you can maintain for life. This is no quick fix and it will involve a committment. Not a cheeseburger but a committment :)
-- Jim
HR: Therefore there is no pattern or specific reason that we can pinpoint beyond speculation why all of the sudden your exercise did not cause these flares anymore.
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I guess you're confirming what I very strongly suspected, that intense exercise way back then brought the virus back (high enzymes, jaundice, etc) even though they had no way of directly measuring it then. Perhaps had I taken it easier, my immune system would have cleared the virus on its own.
But then it stopped happening for some reason, with the one exception of my flair (ALT over 600) four years ago during the week I took the hep b booster, and Chinese herbs, I also had a couple of intense workouts. But that's just speculation.
Of course, my concern is the present. Do you think at this point -- SVR and 9 months post EOT -- that I should be concerned at all about intense exercise? I posed this question to my hepatologist and he said "no" but I would like your take.
-- Jim
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I guess you're confirming what I very strongly suspected, that intense exercise way back then brought the virus back (high enzymes, jaundice, etc) even though they had no way of directly measuring it then. Perhaps had I taken it easier, my immune system would have cleared the virus on its own.
But then it stopped happening for some reason, with the one exception of my flair (ALT over 600) four years ago during the week I took the hep b booster, and Chinese herbs, I also had a couple of intense workouts. But that's just speculation.
Of course, my concern is the present. Do you think at this point -- SVR and 9 months post EOT -- that I should be concerned at all about intense exercise? I posed this question to my hepatologist and he said "no" but I would like your take.
-- Jim
See, told you exercise was bad. HR and I are hitting the bar for some weight based cheesburges and Peg fries - game is gonna start soon! Seriously, though my theory is this - and its just a theory, it could be self serving bullsh!t for all I know - that with no virus (maybe) and a better liver (definitely) that I will proceed to better health naturally and that my weight will follow. More energy, more optimism, more activity, less weight etc. Make sense? I assume that this may require me to stop feeding my face and get my arse off the couch one of these days but right now magical thinking is good enough for me.
MEDICAL PROFESSIONAL
Vigorous exercise can be quite an immunesupressant. I have seen swimmers whose HBV broke into flares after intense training.
Each of your flares was followed by a slight change in the virus quasispecies that "swarmed" invisibly inside you after the flare, because new epitopes were created, new viral fitness was obtained and so much more. Therefore there is no pattern or specific reason that we can pinpoint beyond speculation why all of the sudden your exercise did not cause these flares anymore.
the lack of improvement typical afterr tx:
I formulated the possibilities as questions to indicate that those are alternative or parallel possibilities that only very expensive and extensive research can start to answer. I say extensive, since Vincente Carrenos results are ignored by many clinicians, unless confirmed in several large series. Plus, the question re the potential fitness of these residuals was not even remotely addressed.
Each of your flares was followed by a slight change in the virus quasispecies that "swarmed" invisibly inside you after the flare, because new epitopes were created, new viral fitness was obtained and so much more. Therefore there is no pattern or specific reason that we can pinpoint beyond speculation why all of the sudden your exercise did not cause these flares anymore.
the lack of improvement typical afterr tx:
I formulated the possibilities as questions to indicate that those are alternative or parallel possibilities that only very expensive and extensive research can start to answer. I say extensive, since Vincente Carrenos results are ignored by many clinicians, unless confirmed in several large series. Plus, the question re the potential fitness of these residuals was not even remotely addressed.
2. Is the maintainance of this response - to a dramatically varying degree in various individuals - still a constant unspecific immune stimulans, responsible...
for some or many or most of the "after tx syndromes" that DD and others are suffering from?
-------------------------------------------------------
1) From what I've read and experienced, the majority of "after tx syndromes" that DD and others discuss may be as easily attributable to the interferon tx itself as opposed to any unspecific immune response. I say this because in many cases, the symptons discussed were not present before treating and only present after treating. So, unless, the post-tx response to the viral remants is more agressive than the pre-tx response to the whole virus -- at least to me it suggests the cause of these symptons is from an interferon-altered immune system and not from the virus.
2) Related, very few report "feeling better" after treatment. With some exceptions, most report about the same and many feeling worse such as DD. In my case, I'm starting to get very close to feeling the way I did pre-tx but I can't say I feel any better, stronger, etc. This seems to argue for the point of view that HCV is in many, if not most cases, totally asymptomatic (no extrahepatic stuff) until a higher level of cirrhosis takes place.
Otherwise, why wouldn't a number of us SVRs report a dramatic improvement in how we feel? Or, is it the virus in 'other' compartments that prevents us from feeling dramatically better?
On a personal note, I led a very active life since contracting hep c around 1970, at times succesfully competing in endurance events with men much younger. Still, I had periods of fatigue during training that I thought were attributable to the virus. But now the virus is gone, and again, I feel about the same. Of course, I'm very happy I no longer have the virus and that my liver histology seems to be improving. But where I come out is maybe that is all that one can expect from treatment -- improved liver histology and perhaps less chance of HCC. Many of those pre-tx seem to think that a lot of their 'symptons' will disappear once they SVR. Afraid there will be lots of disappointments.
Interested in your take on both #1 and #2. Thanks again.
--Jim
for some or many or most of the "after tx syndromes" that DD and others are suffering from?
-------------------------------------------------------
1) From what I've read and experienced, the majority of "after tx syndromes" that DD and others discuss may be as easily attributable to the interferon tx itself as opposed to any unspecific immune response. I say this because in many cases, the symptons discussed were not present before treating and only present after treating. So, unless, the post-tx response to the viral remants is more agressive than the pre-tx response to the whole virus -- at least to me it suggests the cause of these symptons is from an interferon-altered immune system and not from the virus.
2) Related, very few report "feeling better" after treatment. With some exceptions, most report about the same and many feeling worse such as DD. In my case, I'm starting to get very close to feeling the way I did pre-tx but I can't say I feel any better, stronger, etc. This seems to argue for the point of view that HCV is in many, if not most cases, totally asymptomatic (no extrahepatic stuff) until a higher level of cirrhosis takes place.
Otherwise, why wouldn't a number of us SVRs report a dramatic improvement in how we feel? Or, is it the virus in 'other' compartments that prevents us from feeling dramatically better?
On a personal note, I led a very active life since contracting hep c around 1970, at times succesfully competing in endurance events with men much younger. Still, I had periods of fatigue during training that I thought were attributable to the virus. But now the virus is gone, and again, I feel about the same. Of course, I'm very happy I no longer have the virus and that my liver histology seems to be improving. But where I come out is maybe that is all that one can expect from treatment -- improved liver histology and perhaps less chance of HCC. Many of those pre-tx seem to think that a lot of their 'symptons' will disappear once they SVR. Afraid there will be lots of disappointments.
Interested in your take on both #1 and #2. Thanks again.
--Jim
I had an acute stage of HCV around 1970. Enzymes over 1000 if I remember correctly with jaundice, dark urine, white stools, etc. Over the next 4 years I had 2-3 acute relapses. Each relapse was associated with a significant increase in physical activities such as running. Then all of a sudden I went into a "hold" pattern where physical activity didn't seem to have any effect on the virus and therefore the enzymes remained more or less consistently mildly elevated until I started treating. They did go into the high-normal range however, whenever I went on a strict low fat diet such as Pritikin which is total fat calories less than ten per cent of total calories. But because of my past history, always a little anxiety if I start feeling sluggish after some hard work outs. Intellectualy, I understand that exercise won't bring the virus back but it apparently did cause relapse way back then. I guess that's why I took my recent enzymes and viral load tests at 9 months post tx. Since my ALT is 15 I guess nothing to worry about. Still, curious on your take about vigorous exercise and my early acute relapses and why all of a sudden it became a non issue. Discussed this with a couple of well-known hepatologists in the early 70's and they said that the exercise could have brought on the relapses but it was just speculation.
Thanks again for all your help.
-- Jim
Thanks again for all your help.
-- Jim
MEDICAL PROFESSIONAL
Jim wrote
I believe what HR stated -- and sure I'll be corrected if wrong -- however, is that if many of us were tested frequently *after* SVR with very sensitive tests (like Heptimax) that every once in a while we might find ourselves with a low level of virus.
My point was that if this were true, wouldn't we see more postive viral loads after SVR since tens of thousands of people are being tested post SVR and yet we don't see those positive results except in rare cases. So in essence, this theory has been tested -- perhaps not on an individual patient, but on a mass grouping which might substitute.
Response
The theory has not really been tested, the diluted "raw data" are scattered among many labs, drs, patients....If someone publishes re the stability of SVR, he will not refer to spurious, not confirmable positives.
There is actually now little question that "some" might test positive "occasionally" with positive tests after SVR. How frequently however is simply a question of how low the average remaining VL - and i said average, because it could be zero in some - is. At one copy/ml - below the official detection limit of all commercial tests- there are still approx ten thousand virions circulating. If you had ten only circulating you would then need at least one thousand tests to catch one on the average...
Again all that really matters is the tested mean stability of SVR.
But there are important questions beyond that that DD is constantly referring to.If remnant virus does stay around in some compartments,
1. Is it genetically altered, dramatically less fit but still maintains some critical Tcell or B cell epitopes to be effectively recognized by the incredibly sensitive and powerful CD8T cell response?
2. Is the maintainance of this response - to a dramatically varying degree in various individuals - still a constant unspecific immune stimulans, responsible
a. by itself
b. in connection with the imprinted overdrive of immune responssiveness imprinted by IFN TX
for some or many or most of the "after tx syndromes" that DD and others are suffering from?
3. Is the across the board genetic shift of the remnants - IFN survivors after all- the major reason for the stability of SVR? I call this "lateral evolution" of HCV to a much more benign, tamed, ultra low copy molecular parasite or is
4. the heigtened T helper cell surveillance the key aspect of SVR stability or
5. an improved B cell blockage of small remnants the key to blockage of "internal reinfection" or spread? ( In case you have not heard there is not just HBIG but also HCIG investigated, as reinfection blocker after transplant, with very limited success however)
6.Simply not a single intact virion anywhere in the body that could become the great grandfather of a new spread. Gone,CURED. Ready for external reinfection maybe, but not from the inside, regardless of chemotherapy, antirheumatics, TNFalpha blockers, ANAKINRA and so on....
A small note re the presence of the virus in the lymphatic system: Viruses often enter this system, because it is supposed to pick them up, process them, present them etc. That system typically does not get attacked for the presence of the virus ( HIv a big exception), for obvious reasons. Viruses do also not normally thrive inside this system, so it is not a big problem, but it can become a reservoir.
Jim, your AST/ALT ratio is fine in that low absolute range of AST. If in the high range it would be a sign for cirrhosis as a quick search in Pubmed will convince you. Your workouts will increase the AST also somewhat. As a matter of fact, your ALT as well to a lesser degree, so I suspect you dont even work out that hard yet to have a 15 ALT.
I believe what HR stated -- and sure I'll be corrected if wrong -- however, is that if many of us were tested frequently *after* SVR with very sensitive tests (like Heptimax) that every once in a while we might find ourselves with a low level of virus.
My point was that if this were true, wouldn't we see more postive viral loads after SVR since tens of thousands of people are being tested post SVR and yet we don't see those positive results except in rare cases. So in essence, this theory has been tested -- perhaps not on an individual patient, but on a mass grouping which might substitute.
Response
The theory has not really been tested, the diluted "raw data" are scattered among many labs, drs, patients....If someone publishes re the stability of SVR, he will not refer to spurious, not confirmable positives.
There is actually now little question that "some" might test positive "occasionally" with positive tests after SVR. How frequently however is simply a question of how low the average remaining VL - and i said average, because it could be zero in some - is. At one copy/ml - below the official detection limit of all commercial tests- there are still approx ten thousand virions circulating. If you had ten only circulating you would then need at least one thousand tests to catch one on the average...
Again all that really matters is the tested mean stability of SVR.
But there are important questions beyond that that DD is constantly referring to.If remnant virus does stay around in some compartments,
1. Is it genetically altered, dramatically less fit but still maintains some critical Tcell or B cell epitopes to be effectively recognized by the incredibly sensitive and powerful CD8T cell response?
2. Is the maintainance of this response - to a dramatically varying degree in various individuals - still a constant unspecific immune stimulans, responsible
a. by itself
b. in connection with the imprinted overdrive of immune responssiveness imprinted by IFN TX
for some or many or most of the "after tx syndromes" that DD and others are suffering from?
3. Is the across the board genetic shift of the remnants - IFN survivors after all- the major reason for the stability of SVR? I call this "lateral evolution" of HCV to a much more benign, tamed, ultra low copy molecular parasite or is
4. the heigtened T helper cell surveillance the key aspect of SVR stability or
5. an improved B cell blockage of small remnants the key to blockage of "internal reinfection" or spread? ( In case you have not heard there is not just HBIG but also HCIG investigated, as reinfection blocker after transplant, with very limited success however)
6.Simply not a single intact virion anywhere in the body that could become the great grandfather of a new spread. Gone,CURED. Ready for external reinfection maybe, but not from the inside, regardless of chemotherapy, antirheumatics, TNFalpha blockers, ANAKINRA and so on....
A small note re the presence of the virus in the lymphatic system: Viruses often enter this system, because it is supposed to pick them up, process them, present them etc. That system typically does not get attacked for the presence of the virus ( HIv a big exception), for obvious reasons. Viruses do also not normally thrive inside this system, so it is not a big problem, but it can become a reservoir.
Jim, your AST/ALT ratio is fine in that low absolute range of AST. If in the high range it would be a sign for cirrhosis as a quick search in Pubmed will convince you. Your workouts will increase the AST also somewhat. As a matter of fact, your ALT as well to a lesser degree, so I suspect you dont even work out that hard yet to have a 15 ALT.
Yeah, all those things if you stay undectible like I'm sure you will!
On a serious note -- not that the above wasn't serious -- even if your status turns out to be SVR as we all hope, losing all that weight still sounds like a good idea and maybe that was the hidden 'purpose' of this whole exercise. In fact, being that much overweight could be potentially more harmful than having the virus but I'm starting to preach now :) Just want you to be healthy.
All the best,
-- Jim
On a serious note -- not that the above wasn't serious -- even if your status turns out to be SVR as we all hope, losing all that weight still sounds like a good idea and maybe that was the hidden 'purpose' of this whole exercise. In fact, being that much overweight could be potentially more harmful than having the virus but I'm starting to preach now :) Just want you to be healthy.
All the best,
-- Jim
I'll give you a number you can call at 3am when you aren't scared. LOL Hey, I have been listening to you for a while now and want to be there for you.
Are you ON any rescue meds because you sound severly anemic for sure. What are your numbers are you keeping up and making sure they are monitored closely?
A doctor should be helping you to deal with the sides. If he doesn't believe that is what they are you seriously HAVE to find somebody else to go to. Stupid doctors like this Nik aer why people drop out of treatment!
Oh I'm so pissed right now - there is NO reason he should not be helping you.
Without my doctors help and rescue meds I would NOT have been able to continue - I am on week 64 going on Friday!
A doctor should be helping you to deal with the sides. If he doesn't believe that is what they are you seriously HAVE to find somebody else to go to. Stupid doctors like this Nik aer why people drop out of treatment!
Oh I'm so pissed right now - there is NO reason he should not be helping you.
Without my doctors help and rescue meds I would NOT have been able to continue - I am on week 64 going on Friday!
You are so sweet! But really I'm not that scared, just up at 3 in the morning worrying about Friday, and I have to be at work in a few hours!
I did copy and paste the address you gave me, thanks for going out on a limb for me.
You have always been so nice and congrats again on the grandchild and fibroscan results.
Janice
I did copy and paste the address you gave me, thanks for going out on a limb for me.
You have always been so nice and congrats again on the grandchild and fibroscan results.
Janice
You can email if you want. I know how scared you are right now. I'll give number. lindacal at sbcglobal dot com.
I worry that I will have days like yours and I have put off tx. till Friday. But I see that you ARE doing it, I won't be the only one financially ruined and you have made it this far with out a divorce. Sounds like you are making this work by continuing the tx.
I gained 40 lbs over the course of 4 years with ad's. I knew if I stopped I would lose weight but everyone liked my personality better fat! Besides, hardly being able to make it across the room doesn't really REV up the metabolism.
I wish there was a way we could all call each other up, or have a sponsor like in AA. Then we culd offer a heartwarming hug over the phone.
Well, here's my hug, hope it helps!
Bug
I gained 40 lbs over the course of 4 years with ad's. I knew if I stopped I would lose weight but everyone liked my personality better fat! Besides, hardly being able to make it across the room doesn't really REV up the metabolism.
I wish there was a way we could all call each other up, or have a sponsor like in AA. Then we culd offer a heartwarming hug over the phone.
Well, here's my hug, hope it helps!
Bug
I also looked 10-15 years older when on treatment. Now finished, I just look like many two years older, which I am :) Sometimes you just have to try and get through the day and not look beyond. When it really gets bad, don't even think of getting through the day, just deal with the moment. Eventually treatment will be over even though it seems like it never will be.
All the best,
-- Jim
All the best,
-- Jim
I think that weeks about 34 to 44 were hardest for me. I found that as time went on, all of the sides and all of the fatigue and especially the brain fog (not to speak of the hair loss) just got to me. Just so that you know that there is light on the other side of the tunnel, once a year the agency I run holds a very big and public fundraiser. Hundreds and hundreds of people come and some are people that I only see once a year at this event. Well, 4 months post treatment, that event was yesterday and I cannot tell you how many people came up to me to tell me "how much better I looked", "how great I looked", how I "looked younger then I had looked in years" it went on and on--by the end of the day they had me feeling so flattered I was ready to go out and cruise for a boy toy and I'm a 55 year old very happily married woman! Hang in there!
I wrote a letter before but did not seem to get thru.
I have gain a lot of wieght also. But just in my stomach area and it has been very uncomfortable and painful.
It sounds like you have alot to be greatful for. As I was in the deepest of my tx sx I kept focus of my children. Though the horrible thoughts were with me at the same time the core of me never let go so I made it through to the next day, and now my tx is down to just a few days.
As I was telling my doc all the symptoms I also felt he just did not care but as I began to clear up a little bit I saw he did care but just could not identify, And thats when I found this site. And as Revenire says venting or whatever this place did help me more then anything, even with my strangness and arguments.
I have said before, It was not a glass half full or half empty, there were days mine looked and realy felt as if there was only a few drops. And as i drank those drops I was extremly graetful.
Go find something or some one you love and hug them as you never had.
I have gain a lot of wieght also. But just in my stomach area and it has been very uncomfortable and painful.
It sounds like you have alot to be greatful for. As I was in the deepest of my tx sx I kept focus of my children. Though the horrible thoughts were with me at the same time the core of me never let go so I made it through to the next day, and now my tx is down to just a few days.
As I was telling my doc all the symptoms I also felt he just did not care but as I began to clear up a little bit I saw he did care but just could not identify, And thats when I found this site. And as Revenire says venting or whatever this place did help me more then anything, even with my strangness and arguments.
I have said before, It was not a glass half full or half empty, there were days mine looked and realy felt as if there was only a few drops. And as i drank those drops I was extremly graetful.
Go find something or some one you love and hug them as you never had.
I love horses too. Have you actually applied for the assitance program at Roche? I didn't think they'd give it to me since I have all this money in CD's but a pitiful income. It turns out they didn't care about my assets at all. Your situation my be completely different but if you haven't applied, you should do so!
Best of luck, and please, don't be hard on yourself. I may sound like a new age quack, but I think loving ourselves can only help. Or drag yourself out of the house and go smell a horse, ahhhhhh. nothing like a horse to make you feel better!
Best of luck, and please, don't be hard on yourself. I may sound like a new age quack, but I think loving ourselves can only help. Or drag yourself out of the house and go smell a horse, ahhhhhh. nothing like a horse to make you feel better!
Thank you all. It just helps that someone believes me. My psych asks me each month just what positive things are happening!!!!!!! Ahhhhhhhhh, gee......the dog died, my horses are ill, the doc thinks that I am exaggerating, or should feel fine 6 points lower with my red blood count, my husband thinks that I should stop the meds, and my kids in CA just want to know when they can come and use our new house for a vacation spot. I have a warped sense of humor. Maybe I should use that. Thanks to all.
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