Aa
new member (swollen ankles and HCV???)
hi everyone, I finally got a chance to post a question, I discovered this site 4 days ago and think it's great!! I just wish I discovered it sooner...
I'm 29 and was diagnosed a year and a half ago. I went through the usual hustle, and the doctors decided that tx would do more harm than good at the moment. I have genotype 2 a/c, virus load of 85 000, stadium 0 and my AST&ALT levels have been normal for the last year. So much for the intro...
what I was wondering is whether swelling of ankles can have anything to do with HCV... I know the question sounds silly but I did a doppler scan of the veins and arteries, and all other possible tests, everything is fine and my kidneys are ok... but if I work long hours or sit a lot my ankles will swell (a lot)... the funny thing is that this started happening two years ago, at the time when my AST/ALT levels were above normal and I was feeling the usual symptoms (nausea, abdomen pressure...)
Has anyone experienced anything similar or knows anything about it? thanks!!
regards from Croatia
ps. What does LOL stand for?
I'm 29 and was diagnosed a year and a half ago. I went through the usual hustle, and the doctors decided that tx would do more harm than good at the moment. I have genotype 2 a/c, virus load of 85 000, stadium 0 and my AST&ALT levels have been normal for the last year. So much for the intro...
what I was wondering is whether swelling of ankles can have anything to do with HCV... I know the question sounds silly but I did a doppler scan of the veins and arteries, and all other possible tests, everything is fine and my kidneys are ok... but if I work long hours or sit a lot my ankles will swell (a lot)... the funny thing is that this started happening two years ago, at the time when my AST/ALT levels were above normal and I was feeling the usual symptoms (nausea, abdomen pressure...)
Has anyone experienced anything similar or knows anything about it? thanks!!
regards from Croatia
ps. What does LOL stand for?
thanks once again for your help :-)
I don't really know, I think there are many but there are no things as support groups or forums like this one...
it was good to meet you too, good luck w/ your treatment... I won't be on line for couple of weeks but hope to run into you some other time, take care!!!
Eisbein - thanks!
I don't really know, I think there are many but there are no things as support groups or forums like this one...
it was good to meet you too, good luck w/ your treatment... I won't be on line for couple of weeks but hope to run into you some other time, take care!!!
Eisbein - thanks!
Hi Token, you sound like a really nice person and it sounds like you have your head on staight about all this stuff. For me, talking to other heppers has been a lifesaver, sometimes my "non-hepper" friends just don't understand, they sympathize, but it's not the same thing. I gain a lot of strength in hearing how other people are coping w/ all of this, strategies they use. It gives me hope and I don't feel so all alone in all of this like you said.
Yeah, sometimes it's hard to pinpoint reasons or etiologies for ailments. Some are maybe a combination of a few root causes, I think w/ me, hep is at the bottom of most of my complaints. Including some female things. Funny, I've had it happen where I've gone to 2 different specialists, and of course they gave me 2 different root causes, according to their particular specialty. This happens a lot I think. Sometimes you find out through a process of elimination. Sometimes, you run into some great doc that just nails it for you! And sometimes, things just clear up miracuously on their own, which is always nice. Just my experience. As far as the stages of treating, a lot depends on all the variables that I mentioned earlier. You and your docs will ultimately come to some decision, I am only one person w/ one opinion. There are others. Good to meet you Token, hope to see you soon. Are there many heppers where you live? stay well.
Yeah, sometimes it's hard to pinpoint reasons or etiologies for ailments. Some are maybe a combination of a few root causes, I think w/ me, hep is at the bottom of most of my complaints. Including some female things. Funny, I've had it happen where I've gone to 2 different specialists, and of course they gave me 2 different root causes, according to their particular specialty. This happens a lot I think. Sometimes you find out through a process of elimination. Sometimes, you run into some great doc that just nails it for you! And sometimes, things just clear up miracuously on their own, which is always nice. Just my experience. As far as the stages of treating, a lot depends on all the variables that I mentioned earlier. You and your docs will ultimately come to some decision, I am only one person w/ one opinion. There are others. Good to meet you Token, hope to see you soon. Are there many heppers where you live? stay well.
Thank you for your posts... all the help and support people are willing to give here still amazes me, I'm so glad I found this site...I haven't had much of a chance to talk about my desease with many people, yes, I did talk with my friends and family but I'm not quite sure whether people around you can really understand what you're going through, the bottom line being that even with people around you, you are alone in this and have to learn how to deal with it...and honestly it took me good six months to recover from the initial shock and come to terms with all this.. a year and a half later I can say that I'm fine, that I have learnt a lot from this experience (I appreciate life so much more) and am living more fully than before...
I know 12 weeks of tx sounds tempting but the risks are still to high and as you said they might develop less toxic drugs in four years...the docs did say that my long term prognosis is good (bec.of the type and stage)and I take care of myself more...
When are you starting your treatment?How many weeks? 24/48? Do you really think that another couple of years would make so much difference (if you wait I mean)? I really wish you good luck with the treatment!!! take care!!
And yes, about my ankles, I checked everything else, the kidneys, my blood vessels... everything is ok, that's why I started wondering whether it can have anything to do with the virus and the doctors were not much help there... they didn't know, that's why I posted the question to see whether somebody else with hcv had the same problem...
I haven't come across any information about it, but when you treat, does it make a difference what stage you are at?
I know 12 weeks of tx sounds tempting but the risks are still to high and as you said they might develop less toxic drugs in four years...the docs did say that my long term prognosis is good (bec.of the type and stage)and I take care of myself more...
When are you starting your treatment?How many weeks? 24/48? Do you really think that another couple of years would make so much difference (if you wait I mean)? I really wish you good luck with the treatment!!! take care!!
And yes, about my ankles, I checked everything else, the kidneys, my blood vessels... everything is ok, that's why I started wondering whether it can have anything to do with the virus and the doctors were not much help there... they didn't know, that's why I posted the question to see whether somebody else with hcv had the same problem...
I haven't come across any information about it, but when you treat, does it make a difference what stage you are at?
Hey forgot what I was originally going to post. Ha! Your swollen ankles could be very well from the hep, your doc would know more than me of course. But my mother has had swollen ankles when she stands for too long for years, so does my aunt, and neither of them has hep.
Gee, stepping into some controversy on this one, hope I don't get too pummeled, ha!. This is just my own opinion, you'll get more of them, and I'm not too thin skinned I guess, Yikes! Firstly, if I were you, and I'm not of course, I'd be very exacting in trying to suss out how long you've had the virus. Don't gather from your post that your docs were too concerned.
I think the length of infection has a lot to do with everything re to treat or not to treat questions. If you really don't know, maybe I shouldn't even go up this road. This virus takes a long time to do damage in most people. Me for instance, I've had it close to 30 years, and it's only in the last year that it has caused me any problems in terms of symptoms> Some researchers and docs think there are people, perhaps like me, who get a more systemic form of the disease, where it's not really hitting my liver that hard, and my immune system is handling it pretty well all things considered. Not to say it's not doing damage to me, it is but slowly. And since I've had it this long, the pace of the damage will probably quicken. But most people, from what I've read, take at least 10 years before they have much to worry about. Many much longer than that.
And I've heard from various docs and researchers that perhaps my symptoms are indicative of my body putting up a good immune response, my body's fighting like heck to rid itself of the virus, ergo my symptoms. I am a 1-1. I've read that there are researchers that think that many people in their early 50's even w/out hep could register on a biopsy a 1, just through the normal wear and tear of living that many years. My doc thinks, and I agree w/ him, that my low liver damage also might have something to do with me taking pretty darn good care of myself for the last 20 years or so. So lifestyle does play into it to varying degrees. Not looking for brownie points, just trying to explain myself.
So I guess I'm dealing with a ticking clock like most of us, and various "unknown" quantities. I think, like the rest of us, I have a window of about 3 to 5 years when the various "improved" drugs which are supposed to be far less toxic than the current ones, will be available. The protease inhibitors, etc. Unless of course, I were to get into a study, which is always possible, in that they are expanding these studies because various drugs are showing promising results. So being in the bracket I am in, playing with some unknown factor, (when the drugs will be available) I figured (after a lot of agonizing which still continues, sad to say) I better treat now with tx. Even though I still run into docs who think I should wait as well, given my stats. I'm already 51, and though I might take years to go on to later stages, where my situation would indeed be more serious, I probably shouldn't take the chance of waiting. And boy, do I mull this over back and forth. I am just not one of those people who says, "okay, I've got this virus, where are the drugs." I wish I were but I'm not. I don't like drugs - at all. It's hard to get me to take a tylenol. For me, there is something soooo counter-intuitive about putting toxic drugs into my system, I am trying like anything to be okay w/ it and just go for it. Many people here and elsewhere inspire me to no end. I figure if they can be such good sports about it-perhaps I can too. And of course I don't want to end up really messed up because of this virus, who does?
But if you are completely sure you have only been infected for around 7 or 10 years, you've got a tad more wiggle room than I've got, I'd say. I would think you would be able to wait 5 years w/out much to worry about, even longer. But of course, I'm no fortune teller. And yes, I can see the logic in wanting to get rid of it NOW. Being as young as you are, you have a better chance of clearing, and clearing w/out the sometimes brutal sides that we "older" folks have to sometimes contend with. How wonderful it would be for you to get this "under your feet" and not have it wear on your mind, etc. Just go on w/ your life as before.
But there is another side to that as well. These drugs are indeed toxic. They don't have a lot of good long term data on them. I know people who went through treatment who are 1 year or so post, and they seem completely back to normal. Energy is back, the color in their cheeks and their life is rosy again. Most likely they'll never have any negative consequences having taken these drugs, God willing. I'm hoping, so is everyone else. There are others, who aren't so lucky and they do have long term sides. So you and your docs have much to think about. A real cost/benefit analysis. Sorry I'm so long winded about it, I just cover the waterfront and wanted to give you both sides of the question. I'm sure others here will give you more to chew on. Good luck to you, and please keep us posted.
I think the length of infection has a lot to do with everything re to treat or not to treat questions. If you really don't know, maybe I shouldn't even go up this road. This virus takes a long time to do damage in most people. Me for instance, I've had it close to 30 years, and it's only in the last year that it has caused me any problems in terms of symptoms> Some researchers and docs think there are people, perhaps like me, who get a more systemic form of the disease, where it's not really hitting my liver that hard, and my immune system is handling it pretty well all things considered. Not to say it's not doing damage to me, it is but slowly. And since I've had it this long, the pace of the damage will probably quicken. But most people, from what I've read, take at least 10 years before they have much to worry about. Many much longer than that.
And I've heard from various docs and researchers that perhaps my symptoms are indicative of my body putting up a good immune response, my body's fighting like heck to rid itself of the virus, ergo my symptoms. I am a 1-1. I've read that there are researchers that think that many people in their early 50's even w/out hep could register on a biopsy a 1, just through the normal wear and tear of living that many years. My doc thinks, and I agree w/ him, that my low liver damage also might have something to do with me taking pretty darn good care of myself for the last 20 years or so. So lifestyle does play into it to varying degrees. Not looking for brownie points, just trying to explain myself.
So I guess I'm dealing with a ticking clock like most of us, and various "unknown" quantities. I think, like the rest of us, I have a window of about 3 to 5 years when the various "improved" drugs which are supposed to be far less toxic than the current ones, will be available. The protease inhibitors, etc. Unless of course, I were to get into a study, which is always possible, in that they are expanding these studies because various drugs are showing promising results. So being in the bracket I am in, playing with some unknown factor, (when the drugs will be available) I figured (after a lot of agonizing which still continues, sad to say) I better treat now with tx. Even though I still run into docs who think I should wait as well, given my stats. I'm already 51, and though I might take years to go on to later stages, where my situation would indeed be more serious, I probably shouldn't take the chance of waiting. And boy, do I mull this over back and forth. I am just not one of those people who says, "okay, I've got this virus, where are the drugs." I wish I were but I'm not. I don't like drugs - at all. It's hard to get me to take a tylenol. For me, there is something soooo counter-intuitive about putting toxic drugs into my system, I am trying like anything to be okay w/ it and just go for it. Many people here and elsewhere inspire me to no end. I figure if they can be such good sports about it-perhaps I can too. And of course I don't want to end up really messed up because of this virus, who does?
But if you are completely sure you have only been infected for around 7 or 10 years, you've got a tad more wiggle room than I've got, I'd say. I would think you would be able to wait 5 years w/out much to worry about, even longer. But of course, I'm no fortune teller. And yes, I can see the logic in wanting to get rid of it NOW. Being as young as you are, you have a better chance of clearing, and clearing w/out the sometimes brutal sides that we "older" folks have to sometimes contend with. How wonderful it would be for you to get this "under your feet" and not have it wear on your mind, etc. Just go on w/ your life as before.
But there is another side to that as well. These drugs are indeed toxic. They don't have a lot of good long term data on them. I know people who went through treatment who are 1 year or so post, and they seem completely back to normal. Energy is back, the color in their cheeks and their life is rosy again. Most likely they'll never have any negative consequences having taken these drugs, God willing. I'm hoping, so is everyone else. There are others, who aren't so lucky and they do have long term sides. So you and your docs have much to think about. A real cost/benefit analysis. Sorry I'm so long winded about it, I just cover the waterfront and wanted to give you both sides of the question. I'm sure others here will give you more to chew on. Good luck to you, and please keep us posted.
Hi. Like I said earlier I have this knowledge from several reputable hepatologists. 2s are not common here in the U.S. If I see any articles (actually my dr was supposed to send me one) I will post it.
-cbee
-cbee
this developed into a very interesting discussion...thanks everyone!!!
jmjm thank you for the link, I admit that I have fallen behind on the recent studies, interesting results, but artgal also has a point ...
The doctors in Croatia still recommend 48 weeks of treatment, I did my tests in Switzerland and recommended treatment there is 24 weeks...who knows what to choose in the end and if the drug companies are not looking after their own best interest...side effects definitely increase w/ the longer treatment and since I'm otherwise healthy I am reluctant to rush into it. On the other hand I would like to deal w/ it now and get it over with, but there are other factors as well, several doctors recommended not treating it for five years because long term prognosis for this genotype and stage is very good...
cbee, could you please post the link to the study abt 2s relapse rate, you mentioned smtg about them relapsing more than before...
Forseegood, you asked me when I contracted the virus, there are actually 3 possibilities,when I was born (blood exchange) - but that's the least likely scenario, too long ago and genotype doesn't match... so it is either 11 or 6 years ago... I'm not quite sure but I believe it's the last one... why do you ask?
jmjm thank you for the link, I admit that I have fallen behind on the recent studies, interesting results, but artgal also has a point ...
The doctors in Croatia still recommend 48 weeks of treatment, I did my tests in Switzerland and recommended treatment there is 24 weeks...who knows what to choose in the end and if the drug companies are not looking after their own best interest...side effects definitely increase w/ the longer treatment and since I'm otherwise healthy I am reluctant to rush into it. On the other hand I would like to deal w/ it now and get it over with, but there are other factors as well, several doctors recommended not treating it for five years because long term prognosis for this genotype and stage is very good...
cbee, could you please post the link to the study abt 2s relapse rate, you mentioned smtg about them relapsing more than before...
Forseegood, you asked me when I contracted the virus, there are actually 3 possibilities,when I was born (blood exchange) - but that's the least likely scenario, too long ago and genotype doesn't match... so it is either 11 or 6 years ago... I'm not quite sure but I believe it's the last one... why do you ask?
Just wanted to follow up a little on Artgal's post. She and I are definately on the same page. Since we are both 2s, we have done an extensive amount of research on our tx. The reason you don't see "study" results showing these studies have failed or people have relapsed later is because if the drug company funded the study, they are not going to be too quick to say the study didn't work. If you had a choice of which company's drugs to use for tx, would you use the one where the study failed, etc. Sad but true.
The standards are changing within the hepatology community. Longer treatments are being recommended - not shorter. It's unfortunate that some GI's or other doctors who do not have extensive experience with HCV are reading these couple of studies (mostly outside the US) and are relying on them. Like Artgal stated and like I have experienced myself, if a 2 relapses or you do not clear at week 4, 48 weeks of tx are recommended. Some drs are still doing the 24 weeks for 2s but they are finding that 2s are relapsing more than before.
Again, my 2 cents,
-cbee
The standards are changing within the hepatology community. Longer treatments are being recommended - not shorter. It's unfortunate that some GI's or other doctors who do not have extensive experience with HCV are reading these couple of studies (mostly outside the US) and are relying on them. Like Artgal stated and like I have experienced myself, if a 2 relapses or you do not clear at week 4, 48 weeks of tx are recommended. Some drs are still doing the 24 weeks for 2s but they are finding that 2s are relapsing more than before.
Again, my 2 cents,
-cbee
Hi Token, just thought I'd throw in here, you didn't mention how long you think you've had the virus? Do you think you've had it from birth, which would make 29 years, (a long time) or did you contract it more recently, in which case you'd had the virus only a few years? Reason I'm asking is because it is a slow moving virus, w/ many people at least taking 10 15 20 and 25 years before it starts doing any real damage, if at all. Generally speaking. There are always contradictions to the rule. So much depends on your prior lifestyle as well.I'm not advocating that you don't treat, just wondering more about your stats. If you can put some kind of time frame around some incident where you think you might have contracted it? Any type of blood exchange? thanks. Sometimes it's hard to pinpoint, I know.
It took me a long time before I even knew I had the virus, because testing for hep c has been relatively recent. But I guess younger people can now know if they have the virus a lot sooner than folks my age, I'm 51.
It took me a long time before I even knew I had the virus, because testing for hep c has been relatively recent. But I guess younger people can now know if they have the virus a lot sooner than folks my age, I'm 51.
You make some good points. Not just about this study but studies in general.
I was not so much advocating a 12-week approach, as pointing out treatment alternatives and the differences between treatment length and outcome between the various genotypes.
I may also be guilty of a little treatment "sell" because the alternative appeared to be that Token was not going to treat.
That said, the study I referenced was quite recent, published in a reputable journal and the sampling seemed OK. In this study, the 12-week approach was only recommended for those with non-detectable virus (EVR) at week 4.
You mention " new studies show some of these type 2's are relapsing". Are we comparing apples to apples here? In other words, are these new studies saying type 2's with EVR's don't SVR at the same rate with 12 verus 24 weeks of treatment? If you have a link to these newer studies please post.
I was not so much advocating a 12-week approach, as pointing out treatment alternatives and the differences between treatment length and outcome between the various genotypes.
I may also be guilty of a little treatment "sell" because the alternative appeared to be that Token was not going to treat.
That said, the study I referenced was quite recent, published in a reputable journal and the sampling seemed OK. In this study, the 12-week approach was only recommended for those with non-detectable virus (EVR) at week 4.
You mention " new studies show some of these type 2's are relapsing". Are we comparing apples to apples here? In other words, are these new studies saying type 2's with EVR's don't SVR at the same rate with 12 verus 24 weeks of treatment? If you have a link to these newer studies please post.
Please be careful as you write about the length of treatment for 2's. The studies you mention were done with small groups of people, all of whom were European (Dr. Cecil thinks this might make a difference), using one specific type of interferon (peg intron), and only one study that I know of indicated 12 weeks (the other studies were 14 and 16 week studies). New studies are showing that some of these 2's are relapsing. Once a 2 relapses they will need to do at least another full 24 weeks, will no longer be treatment-naive and the virus may have mutated and possibly they may no longer be a geno 2.
If you look back at my earlier posts, I was adamant about finishing tx as soon as possible. I am very healthy, grade 1 stage 0, cleared at 4 weeks and undetectable at <2 IU/mL. I have great concerns that I may affect a healthy part of my body with these toxic drugs while attempting to gain SVR. BUT, I plan to do this tx once and only once. The doctors who have done the most work with 2's are advocating the standard protocol of 24 weeks until we have larger scale studies done with both types of interferon and with Americans.
Believe me, I have done my research on this and discussed treatment length with numerous Hep C doctors.
If you look back at my earlier posts, I was adamant about finishing tx as soon as possible. I am very healthy, grade 1 stage 0, cleared at 4 weeks and undetectable at <2 IU/mL. I have great concerns that I may affect a healthy part of my body with these toxic drugs while attempting to gain SVR. BUT, I plan to do this tx once and only once. The doctors who have done the most work with 2's are advocating the standard protocol of 24 weeks until we have larger scale studies done with both types of interferon and with Americans.
Believe me, I have done my research on this and discussed treatment length with numerous Hep C doctors.
Since your're a stage 0, I can understand your doctors taking a wait and see attitude. As far as treatment "triggering" the virus, I've never heard of that. Maybe others can comment but it sounds wrong.
As far as anemia is concerned, the doctors here use Procrit to boost the hemoglobin, sometimes even prior to treatment.
The reason I suggested you treat now is because of your genotype. Geno 2 is the easiest to treat and early responders can finish treatment in only 12 weeks with an 80 per cent chance of success. Compare that to geno 1's who often have to treat for as much as 72 weeks with not quite a 50% chance of success. Here's a link to the study if you want to show your doctors. http://www.hivandhepatitis.com/hep_c/news/2005/ad/062405_a.html
In any event, make sure you keep that biopsy appointment in 4 years and live a liver-healthy lifestyle, including drinking no more than a beer or two a week.
As far as anemia is concerned, the doctors here use Procrit to boost the hemoglobin, sometimes even prior to treatment.
The reason I suggested you treat now is because of your genotype. Geno 2 is the easiest to treat and early responders can finish treatment in only 12 weeks with an 80 per cent chance of success. Compare that to geno 1's who often have to treat for as much as 72 weeks with not quite a 50% chance of success. Here's a link to the study if you want to show your doctors. http://www.hivandhepatitis.com/hep_c/news/2005/ad/062405_a.html
In any event, make sure you keep that biopsy appointment in 4 years and live a liver-healthy lifestyle, including drinking no more than a beer or two a week.
Thanks a lot for your comments!!They're really helpful..
I thought the swelling might be from HCV but wasn't sure, I'm perfectly healthy otherwise LOL
jmjm530 - I'm not sure about the treatment, a whole bunch of doctors recomended not treating... They said that the virus is not doing a lot of damage at the moment and that tx treatment might trigger it, I also have anemia, the last time I checked my ferritin level was 5ng/ml (docs couldn't beleive it) and I think that is another reason why they decided to postpone tx...so I have another biopsy scheduled in less than 4 years and hopefully there'll be some new meds on the scene...
thx once again!!!
I thought the swelling might be from HCV but wasn't sure, I'm perfectly healthy otherwise LOL
jmjm530 - I'm not sure about the treatment, a whole bunch of doctors recomended not treating... They said that the virus is not doing a lot of damage at the moment and that tx treatment might trigger it, I also have anemia, the last time I checked my ferritin level was 5ng/ml (docs couldn't beleive it) and I think that is another reason why they decided to postpone tx...so I have another biopsy scheduled in less than 4 years and hopefully there'll be some new meds on the scene...
thx once again!!!
Just wanted to add that I was a 2b w/ cirrhosis and high vl, and I am now 1 yr.+ SVR after 6 mos. of tx. Joni
I don't like using an existing thread for new issues, but as I have been away for several months I have been reading alot of old posts to catch up. Mikesimon you should be spanked LOL. Also I saw a comment in a ? about cirrhosis that concerned me. Someone said"If the cirrhosis is not too bad, you may tx. sucessfully" I had liver failure and have ESLD, and still txed sucessfully. I am 1 yr.+ SVR. And New Sojourn also. I don't know of any type 1's who have, but am interested to know of some. Thanks, Joni
My ankles use to swell real bad. the dr. said it was from the hep c, since I started treatment they don't swell near as bad as they use to.
Monte
Monte
I'd consider treating now. If you're a genotype 2, that means you only have to treat for 24 weeks with an 80 per cent chance of clearing the virus. And, if you show an early viral response (EVR) at week #4, you only have to treat for 12 weeks, according to recent studies.
Being a stage 0, I understand the Dr.'s logic in waiting. But usually "watchful waiting" is reserved for the more resistent genotype 1's.
With your age and stage, I think you could lick this thing in 12 weeks.
Being a stage 0, I understand the Dr.'s logic in waiting. But usually "watchful waiting" is reserved for the more resistent genotype 1's.
With your age and stage, I think you could lick this thing in 12 weeks.
My ankles and feet were swollen alot, because I had alot of fluid retention due to liver damage. I doubt you have the extent of damage I have, but suggest you cut out all salt, and maybe talk to your doc about a water pill that leaves the potassium in your system. The one I took was Aldactate. LOL means laugh out loud or laugh on line, whichever you prefer. Good luck to you. Joni
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