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Fibrosis and inflammation
How long does it take for your liver to heal if you have no scarring? Months...years...decades?
I had fibrosis stage 3 before treatment, after treatment it had dropped to stage 2. I relapsed.
2 years later I had 2 biopsies 6months apart and it was still fibrosis stage 2.
2 years later I had 2 biopsies 6months apart and it was still fibrosis stage 2.
Alpha Lipoic Acid...try the brand Minus 10, it is said to be the only time relieased alpha lipoic acid on the market. Sister swears by it. She said her skin has improved since taking it...(she looks really young anyway) I will be taking it after tx. I don't want to take anything without it being approved by study docs...but after tx is over...I will be fighting the fibrosis with everything I can find. Again thanks for all the great info. It is leading me down many new avenues of learning.
The debate about during or after for certain antifibrotics rages on in particular when it comes to lipids in my mind at least.
The explaination that HR gave concerning the need to break down the lipid coating on the HCV virion in order to kill it has always left me wondering how much then do lipids contribute to the health of the virions. Since apparently there's no easy answer to this I think it has to be an individual decision whether to add lots of lipids while on treatment. The way HR described it, the thicker the lipid coating, the harder it is for the riba to attack and chop up the virions RNA/DNA.
He still believes during treatment it is good to take for PPC to slow fibrosis, and I do, however this is one topic that makes me wish microbiology had come further into this field than it currently has.
mb
The explaination that HR gave concerning the need to break down the lipid coating on the HCV virion in order to kill it has always left me wondering how much then do lipids contribute to the health of the virions. Since apparently there's no easy answer to this I think it has to be an individual decision whether to add lots of lipids while on treatment. The way HR described it, the thicker the lipid coating, the harder it is for the riba to attack and chop up the virions RNA/DNA.
He still believes during treatment it is good to take for PPC to slow fibrosis, and I do, however this is one topic that makes me wish microbiology had come further into this field than it currently has.
mb
Thank you, Trin.
I also understand your point of view, too. We all cope with our situations the way we are able to manage our life. Fortunately we are all so diverse.
I tend to like to line up aaaallllll my ducks and then in the end I 'surrender' the rest to the One who makes this universe go round. It makes me feel that I have everything more or less under control. Us human beings, we know nothing about what the future will bring... or what really is in store for us....
We have a sarcastic saying: Why make things easy, if you can make them difficult.' meaning of course it should be the other way around. I guess it is the same as the KISS approach.
I'll be crossing my fingers and toes for you.
Marcia
I also understand your point of view, too. We all cope with our situations the way we are able to manage our life. Fortunately we are all so diverse.
I tend to like to line up aaaallllll my ducks and then in the end I 'surrender' the rest to the One who makes this universe go round. It makes me feel that I have everything more or less under control. Us human beings, we know nothing about what the future will bring... or what really is in store for us....
We have a sarcastic saying: Why make things easy, if you can make them difficult.' meaning of course it should be the other way around. I guess it is the same as the KISS approach.
I'll be crossing my fingers and toes for you.
Marcia
I totally understand where you are coming from. Just wanted to make sure that you are keeping things in perspective and I believe you are in a way that works best for you. I am a realist and probably to a fault. I have no expectation other than the fact I am doing what I'm supposed to do and the rest is out of my hands. I certainly didn't do the research you have nor have I projected and long term outcome in the event I fail tx. I guess if one believes that our destiny has already been pre-determined that reinforces my belief to take it one day at a time. That's what works best for me. Too much info causes my brain to get whacky and I have a big enough problem with that already!! I like the KISS theory - Keep it Simple Stupid. I'm not calling you stupid!!!! It's a phrase business use in the states which basically tells the staff to tone it down a bit - don't complicate things so much. I like that approach which is why we are all different and isn't that a good thing!! It's funny too, because I haven't concerned myself with the numbers as many do through tx. EVR, RVR, slow responder - can't get too excited. Bottom line for me is if I'm not UND by 24wks, I'm gone. No more toxins for me. I think it's good to know how you are responding and it can help to determine if extended tx is warranted, but again, the percentages do not guarantee a favorable outcome so I skip merrily along with all my fingers and toes crossed!!! Take care.
Trin
Trin
Thank you for your advice, don't worry, I am looking at the whole picture realistically and am not taking SVR for granted. I know that there is no guarantee and even if there was a 99% cure rate, I still could be in the 1% who don't make it. But of course I rather focus on beating this, than focusing on relapse. I do not want to take the wind out of my sails. And if tx fails, I will have to start again. I have endured much worse things in my life than the effect a failed tx would have on me.
I probably didn't formulate myself correctly on the earlier post, as that was not really possible in the 4 lines I wrote, so I will explain my thoughts here.
I feel that it is wise for ME PERSONALLY to look into possibilities of ridding my body from the toxins after completing treatment. SVR or not. Either in the attempt to feel better or to regroup for a second treatment. And in both cases to strengthen the liver. I have been routinely doing all kind of cleanses in in my life. Having lived 20 years in Indonesia, I have always been into alternative treatments, be it TCM, acupuncture, acupressure, osteopathy, massages, herbal concoctions, etc. So it is not something new to me. I rather do the research now, as I do not know how brain fogged and sick (or maybe not at all) I will be on treatment.
The reason I stated 1 month, 3 months, 6 months, is for several reasons. I don't know how long the tx meds are still in the system doing some kind of work, even if it is minuscule, after stopping treatment. If i have to be on AD's and need to taper off, it would maybe not be a good idea to be on herbs, due to drug herb interaction. There are so many things to take into consideration, so that's why I mentioned 1, 3, 6 ms, that I was not sure when it would be wise to start, and did not mention a special time frame.
I do disagree with you about getting ahead of myself by making plans for after tx. Unfortunately they are all IF's anyway. IF I tolerate treatment, IF I RVR, IF I have to extend treatment, IF I SVR.
But I really don't want to start every thought and plan I have with an IF. It would keep putting doubts in my head. I do believe in expecting the worst, hoping for the best and planning for a good out come. Then one can always leave doors open for the IF's to come in, when they do appear.
I am not taking your comment wrong, I know you only wish the best for me and thanks again.
Marcia
I probably didn't formulate myself correctly on the earlier post, as that was not really possible in the 4 lines I wrote, so I will explain my thoughts here.
I feel that it is wise for ME PERSONALLY to look into possibilities of ridding my body from the toxins after completing treatment. SVR or not. Either in the attempt to feel better or to regroup for a second treatment. And in both cases to strengthen the liver. I have been routinely doing all kind of cleanses in in my life. Having lived 20 years in Indonesia, I have always been into alternative treatments, be it TCM, acupuncture, acupressure, osteopathy, massages, herbal concoctions, etc. So it is not something new to me. I rather do the research now, as I do not know how brain fogged and sick (or maybe not at all) I will be on treatment.
The reason I stated 1 month, 3 months, 6 months, is for several reasons. I don't know how long the tx meds are still in the system doing some kind of work, even if it is minuscule, after stopping treatment. If i have to be on AD's and need to taper off, it would maybe not be a good idea to be on herbs, due to drug herb interaction. There are so many things to take into consideration, so that's why I mentioned 1, 3, 6 ms, that I was not sure when it would be wise to start, and did not mention a special time frame.
I do disagree with you about getting ahead of myself by making plans for after tx. Unfortunately they are all IF's anyway. IF I tolerate treatment, IF I RVR, IF I have to extend treatment, IF I SVR.
But I really don't want to start every thought and plan I have with an IF. It would keep putting doubts in my head. I do believe in expecting the worst, hoping for the best and planning for a good out come. Then one can always leave doors open for the IF's to come in, when they do appear.
I am not taking your comment wrong, I know you only wish the best for me and thanks again.
Marcia
I have always thought of doing some TCM treatment after reaching SVR. Am not sure when it would be wise to start it. 1 month, 3months or 6 months post tx.
Marcia, please do not take this the wrong way. I hope you do reach SVR. By your postings I think you will settle for nothing less. We all hope for this. Positive thinking is the key in our journey. However, no guarantees for SVR and geno 3's are easier to treat than 1's but do have a higher relaspe rate so when it would be wise to start a regimen of alternative treatments would be getting ahead of yourself just a bit at this point. Hopefully, you will be able to tolerate tx and can continue on the 24 wk course with no problems but that will be determined once you start tx and know exactly how your body will respond.
Trinity
Marcia, please do not take this the wrong way. I hope you do reach SVR. By your postings I think you will settle for nothing less. We all hope for this. Positive thinking is the key in our journey. However, no guarantees for SVR and geno 3's are easier to treat than 1's but do have a higher relaspe rate so when it would be wise to start a regimen of alternative treatments would be getting ahead of yourself just a bit at this point. Hopefully, you will be able to tolerate tx and can continue on the 24 wk course with no problems but that will be determined once you start tx and know exactly how your body will respond.
Trinity
Wouldn't it then be advisable to do some kind of alternative treatments to help the process along... to strengthen and repair the liver ----- AFTER completion of treatment.
I have always thought of doing some TCM treatment after reaching SVR. Am not sure when it would be wise to start it. 1 month, 3months or 6 months post tx.
Marcia
I have always thought of doing some TCM treatment after reaching SVR. Am not sure when it would be wise to start it. 1 month, 3months or 6 months post tx.
Marcia
I concur with you. There was a post on the hepatitis social forum that indicated stage 1 and stage 2 can be totally reversed if SVR is achieved or if one only has mild cirrhosis. I have done a lot of research on this and have asked my doctor several times as well if i can expect reversal of fibrosis if I clear the virus and he indicated there is no definitive data to confirm this will absolutely occur. As you said, many factors play a role in the regeneration of the liver and at this point they cannot say for sure. The inflammation will subside in most cases regardless of SVR while on tx but reversal of all damage has yet to be determined.
Trin
Trin
I've always heard that unless you have advanced cirrhosis, you can expect a significant reversal of fibrosis after achieving SVR. And by significant reversal I mean at least a stage or two. That is (1) given enough time, (2) no harmful substances are taken (drugs, alcohol, poisonous mushrooms etc) and (3) there's no autoimmune hepatitis present (which is occasionally triggered by IFN treatment).
But honestly I've never seen any real studies on the matter, so in my view it's conjectural just how much reversal will take place and how long it will take. Especially considering how all of us are individually unique in terms of our age, general health and physiology. Here's a promising post from one of our resident expert doctors:
http://www.medhelp.org/posts/show/534318
As you can see I asked him to provide substantiation for his bold claim that ALL fibrosis reverses and the liver completely heals itself after being "cured" (which is another controversial subject). He hasn't responded to my question, so I'm not sure if that means there is no rigorous scientific evidence to support his statement, or if he just thinks my question is dumb. I suspect he's speaking from an anecdotal experiential knowledge base he's acquired with perhaps thousands of patients, seeing as he is a very experienced hepatologist. Still, unless everyone came back in for biopsies years after getting their SVR (highly unlikely) I still don't see how he knows what he claims to know with the kind of certainty he puts forth in that post.
That's not to say I'd wouldn't like to believe it though!
But honestly I've never seen any real studies on the matter, so in my view it's conjectural just how much reversal will take place and how long it will take. Especially considering how all of us are individually unique in terms of our age, general health and physiology. Here's a promising post from one of our resident expert doctors:
http://www.medhelp.org/posts/show/534318
As you can see I asked him to provide substantiation for his bold claim that ALL fibrosis reverses and the liver completely heals itself after being "cured" (which is another controversial subject). He hasn't responded to my question, so I'm not sure if that means there is no rigorous scientific evidence to support his statement, or if he just thinks my question is dumb. I suspect he's speaking from an anecdotal experiential knowledge base he's acquired with perhaps thousands of patients, seeing as he is a very experienced hepatologist. Still, unless everyone came back in for biopsies years after getting their SVR (highly unlikely) I still don't see how he knows what he claims to know with the kind of certainty he puts forth in that post.
That's not to say I'd wouldn't like to believe it though!
golly there are so many good lipids out there, and a lot of research on the benefits of each.
the one that's gotten the most buzz in here has been discussed by our resident doc/hepatitis researcher. HR's not been in here much since you joined, but all his post all well worth reading.
check out this thread
http://www.medhelp.org/posts/show/346752
the only problem with 4 caps a day is everything then runs through me. PPC acts like any oil. If your diet is fairly organic (not full of refined foods) then there is such a thing as too much of a good thing. However, I think each should take what their body can tolerate.
Whether Alpha Lipoic is more antifibrotic the PPC I don't know, but doubt it...being as how HR would probably have alerted us if it were.
go up top.....to heath pages..... and check out some of his other threads also.....on the HepResearcher page in that list.
the one that's gotten the most buzz in here has been discussed by our resident doc/hepatitis researcher. HR's not been in here much since you joined, but all his post all well worth reading.
check out this thread
http://www.medhelp.org/posts/show/346752
the only problem with 4 caps a day is everything then runs through me. PPC acts like any oil. If your diet is fairly organic (not full of refined foods) then there is such a thing as too much of a good thing. However, I think each should take what their body can tolerate.
Whether Alpha Lipoic is more antifibrotic the PPC I don't know, but doubt it...being as how HR would probably have alerted us if it were.
go up top.....to heath pages..... and check out some of his other threads also.....on the HepResearcher page in that list.
Thank you...great info and good news since I am lucky at stage 1. I have been reading about supplements such as Alpha Lipoic Acid...and it's ability aid in tissue regeneration. What do you know about it? I won't be taking anything while on tx but I would like to be well armed with knowledge if I happen to be in one of the tx arms that stop at 24 weeks.
I've read conflicting reports. Some research showing reversals during treatment of 1 satge or more, some studies say not much reversal comes until tx is complete, and then the liver really has a viral free chance of repair.
It all depends on multiple factors like how much TGF-1 you have, and cystine etc, so every persons rate of recovery will vary according to stage, grade, other related conditions such as NASH, etc etc. Of course what is rock hard stage 4 will not reverse itself.
in other words, there is no definite answer. The general view is that if you make normal levels of the repairing hormones, such as HGH, and your liver panel and CBCs return to normal, then in about 1 1/2 years your liver will be completely replace with new tissue.
So assuming you don't add drug or alcohol, grease, or things known to cause fibrosis or fatty liver back into the mix, you should be able to get a fairly healthy liver in that time period. However, complete reversals are seldom seen unless one was stage 1 or 2....often some fibrosis will remain even though the tissue turns over. this is because fibrosis is scar tissue which is hard chewy and likes to stick around....think grissle.
So even years from now, you'll want to take care of your liver is my sense.
mb
It all depends on multiple factors like how much TGF-1 you have, and cystine etc, so every persons rate of recovery will vary according to stage, grade, other related conditions such as NASH, etc etc. Of course what is rock hard stage 4 will not reverse itself.
in other words, there is no definite answer. The general view is that if you make normal levels of the repairing hormones, such as HGH, and your liver panel and CBCs return to normal, then in about 1 1/2 years your liver will be completely replace with new tissue.
So assuming you don't add drug or alcohol, grease, or things known to cause fibrosis or fatty liver back into the mix, you should be able to get a fairly healthy liver in that time period. However, complete reversals are seldom seen unless one was stage 1 or 2....often some fibrosis will remain even though the tissue turns over. this is because fibrosis is scar tissue which is hard chewy and likes to stick around....think grissle.
So even years from now, you'll want to take care of your liver is my sense.
mb
I'm GT 1b...I am tolerating the meds well so far I guess, don't feel as bad as I thought I would. I really expected worse...I have a lot more confidence after the first week....I just hate all the stupid in these meds and I want my memory back. Yesterday I couldn't remember taking my morning dose. I left home at 6:30 am to drive to Gainesville for my 1st follow up visit and forgot half of the stuff I needed to bring with me. It causes me anxiety when I can't remember. When I got home I was relieved to see that I had taken the dose.
I will be finishing up my job in the next week so that will be a relief...won't have to work till after tx...
I will be finishing up my job in the next week so that will be a relief...won't have to work till after tx...
All I know is you are heading in the right direction by getting in a telaprevir study, how are you feeling? I think the liver question is something that truly can't be readily answered, but if you read previous posts you can get an idea. I think you will be fine, as you must be a geno 2 or 3, I'm thinking. God Bless
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