Aa
At what point to consider tx
Hello all,
I am looking for some opinions and experience with HCV and when to tx. In the past three months I have begun to show signs of HCV being active in my system. I don't know exactly how long I have been infected but was made aware of it by my doctor about 8 yrs. ago and was fine until recently.
Long story short it started with my AST/ALT levels at about 160/260. My doctor refered me to a GI. The GI has done some testing and found my GT is 1 and I have a VL of 5,000,000. He did a Ultra Sound and said it looked good. I had a biopsy done about 2 yrs. ago and that was good. As of 8/20/08 my AST/ALT is still high about 140/240. He says I should begin treatment now. He wants me to try a new drug they are testing at Scripts in San Diego, Calif. but he doesn't know the name of it, I will have to wait for them to contact me to see if they will except me in the program and if I choose to do it. It would be the IFN/Riba and the new drug.
He says if I don't treat it is very possible for me to have liver problems within 5 yrs. He also says that my chances of cure with IFN/Riba are only about 30%. Are there questions I should be asking him to get a better understanding? Would you get a second opinion if you could?
I am weighing all this out and I know many of you have studied and researched going threw your own experiences. I also know from reading some of the posts that there is a lot of knowledge and insight in this community and I am hoping to get some valued feed back.
Thanks in advance for anyone who will take the time to respond.
Mike
I am looking for some opinions and experience with HCV and when to tx. In the past three months I have begun to show signs of HCV being active in my system. I don't know exactly how long I have been infected but was made aware of it by my doctor about 8 yrs. ago and was fine until recently.
Long story short it started with my AST/ALT levels at about 160/260. My doctor refered me to a GI. The GI has done some testing and found my GT is 1 and I have a VL of 5,000,000. He did a Ultra Sound and said it looked good. I had a biopsy done about 2 yrs. ago and that was good. As of 8/20/08 my AST/ALT is still high about 140/240. He says I should begin treatment now. He wants me to try a new drug they are testing at Scripts in San Diego, Calif. but he doesn't know the name of it, I will have to wait for them to contact me to see if they will except me in the program and if I choose to do it. It would be the IFN/Riba and the new drug.
He says if I don't treat it is very possible for me to have liver problems within 5 yrs. He also says that my chances of cure with IFN/Riba are only about 30%. Are there questions I should be asking him to get a better understanding? Would you get a second opinion if you could?
I am weighing all this out and I know many of you have studied and researched going threw your own experiences. I also know from reading some of the posts that there is a lot of knowledge and insight in this community and I am hoping to get some valued feed back.
Thanks in advance for anyone who will take the time to respond.
Mike
Sorry about the wording in my sentences. Yes, that does happen on tx. You either can't spell or you can't formulate the sentences properly. The irony of it is that it looks fine while typing, only after hitting post comment and critiqing what I wrote do I notice. That is one sx I absolutely hate.
Trin
Trin
I never sensed you were depressed either. You have a well balanced outlook on life and the decision to treat is ultimately yours. When you are ready, you'll know.
Just so you know from my perspective, treatment has not been that difficult for me. Side effects are tolerable and I have worked the entire time so far. I'm not saying it has been easy, just did not debilitating for me and it is for some. Many others have said the same thing. It's is a very individual experience, so take all things into consideration when deciding what is right for you. Good Luck and hope let us know how things progress.
Trinity
Just so you know from my perspective, treatment has not been that difficult for me. Side effects are tolerable and I have worked the entire time so far. I'm not saying it has been easy, just did not debilitating for me and it is for some. Many others have said the same thing. It's is a very individual experience, so take all things into consideration when deciding what is right for you. Good Luck and hope let us know how things progress.
Trinity
First, I want to thank everyone for his or her contribution to my questions. I believe every one of you have much to offer and have offered. Sometimes you just have to filter threw some of the info (take the meat and spit out the bones) but what is bones to me might be meat to someone else.
I do want to say that I consider myself to be a very healthy person, work out daily practice my San Soo two or three times a week with my 10 yr. old. I eat healthy, have for years, and was doing great on my yearly checkups until this year.
As for depression, I have never considered myself a depressed person. I enjoy the life that God has blessed me with; I should have been dead a long time ago with my life style.
However, I just came off a great white water rafting trip in the Colorado River with my wife and son and then took my son to the Sierra's for a two day fishing trip. I was at the gym this morning at 4:30am and am back at work this morning feeling good about things.
Do I have some decisions before me, yea I do. And you all have helped with your own experiences and the things you are going threw and I look forward to bouncing more things off all of you before this thing is over if it ever is.
I have never acted spontaneous about anything in my life and I will not do it with this. That is why I posted in my original post.
---------------------------
I am weighing all this out and I know many of you have studied and researched going threw your own experiences. I also know from reading some of the posts that there is a lot of knowledge and insight in this community and I am hoping to get some valued feed back.
----------------------------
So many of you have posted links to articles and other sights and that has been very helpful.
Thank You
I really have to get back to work. I really hope you will all go easier on each other.
I will post back later.
Oh, I live in Riverside, Calif. if anyone knows of a good GI or Hepatologist in this area please let me know.
Mike
I do want to say that I consider myself to be a very healthy person, work out daily practice my San Soo two or three times a week with my 10 yr. old. I eat healthy, have for years, and was doing great on my yearly checkups until this year.
As for depression, I have never considered myself a depressed person. I enjoy the life that God has blessed me with; I should have been dead a long time ago with my life style.
However, I just came off a great white water rafting trip in the Colorado River with my wife and son and then took my son to the Sierra's for a two day fishing trip. I was at the gym this morning at 4:30am and am back at work this morning feeling good about things.
Do I have some decisions before me, yea I do. And you all have helped with your own experiences and the things you are going threw and I look forward to bouncing more things off all of you before this thing is over if it ever is.
I have never acted spontaneous about anything in my life and I will not do it with this. That is why I posted in my original post.
---------------------------
I am weighing all this out and I know many of you have studied and researched going threw your own experiences. I also know from reading some of the posts that there is a lot of knowledge and insight in this community and I am hoping to get some valued feed back.
----------------------------
So many of you have posted links to articles and other sights and that has been very helpful.
Thank You
I really have to get back to work. I really hope you will all go easier on each other.
I will post back later.
Oh, I live in Riverside, Calif. if anyone knows of a good GI or Hepatologist in this area please let me know.
Mike
I have taken Provigil (Modafinil) PRN for a sleep disorder (insomnia) that is sometimes impacted by working days (and nights) straight without sleep for the last few years. That was up until treatment. I was excused from working on-call in addition to the 45-50 hours/wk that I typically work. I asked both my GI and the Hepatologist if I could use the Provigil to help offset the overwhelming fatigue I'm experiencing in tx, and their answers were a resounding NO. They could see no good reason to take a drug to keep me up and going when, in their opinion, I should listen to my body and go get some rest.
I am also between that rock and a hard place wondering 'when to treat?'. I am geno 1a, diagnosed early this year, and still grieving the loss of my supposed good health. While I work towards acceptance, I am learning all I can to prepare myself, mentally and physically.
I have changed my diet, drastically. I don't eat processed foods, eat lots of veggies and fruits, cut out coffee, alcohol and cut way back on sugars, only caffeine intake is tea for its antioxidants. I use all natural soaps, detergents and household cleaners now. I do this to reduce metabolic and oxidative stress. http://www.hcvadvocate.org/news/newsLetter/2008/advocate0408.html#3
I love the information and help this forum provides. And, I like to read older posts by HR. ex. http://www.medhelp.org/posts/show/498921 (diet principles and supplements) ; http://www.medhelp.org/posts/show/379137 ;(Prebiotics/Probiotics)
At this point, I'm trying to get all the good stuff I need through diet, not supplements. Not against supps, just don't know enough about them yet.
Dr. Deitrich's video shows statistics that give geno 1's a 40% success rate, and then he talks about factors that impede SVR, like steatosis, and specifically addresses the American diet as one factor that contributes to the 40%. (Lose the corn syrup.)
This study shows factors that may predict why some don't clear the virus and shows svr success at 54 - 63%.
http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2007;volume=26;issue=6;spage=279;epage=282;aulast=Nachnani
Personally, unless my health takes a turn for the worse, I intend to wait for the new PI drugs to be approved. I don't like any of those odds. It's a gamble no matter which way you turn.
Good luck to you and hope you find a bitchin Doctor and all the right answers.
I have changed my diet, drastically. I don't eat processed foods, eat lots of veggies and fruits, cut out coffee, alcohol and cut way back on sugars, only caffeine intake is tea for its antioxidants. I use all natural soaps, detergents and household cleaners now. I do this to reduce metabolic and oxidative stress. http://www.hcvadvocate.org/news/newsLetter/2008/advocate0408.html#3
I love the information and help this forum provides. And, I like to read older posts by HR. ex. http://www.medhelp.org/posts/show/498921 (diet principles and supplements) ; http://www.medhelp.org/posts/show/379137 ;(Prebiotics/Probiotics)
At this point, I'm trying to get all the good stuff I need through diet, not supplements. Not against supps, just don't know enough about them yet.
Dr. Deitrich's video shows statistics that give geno 1's a 40% success rate, and then he talks about factors that impede SVR, like steatosis, and specifically addresses the American diet as one factor that contributes to the 40%. (Lose the corn syrup.)
This study shows factors that may predict why some don't clear the virus and shows svr success at 54 - 63%.
http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2007;volume=26;issue=6;spage=279;epage=282;aulast=Nachnani
Personally, unless my health takes a turn for the worse, I intend to wait for the new PI drugs to be approved. I don't like any of those odds. It's a gamble no matter which way you turn.
Good luck to you and hope you find a bitchin Doctor and all the right answers.
What's wrong with you? Everybody knows widgets are green.
Of course I can back it up....LOL
http://www.greenmaven.com/green-search-widgets.html
Of course I can back it up....LOL
http://www.greenmaven.com/green-search-widgets.html
I don't want to take sides here but think it important to echo part of what Mr. Liver said.
It's easy enough these days to check most everything on the internet. Maybe not the ultimate source but at least a start.
So, is you post that widgets are red, then for heavens sake be able to defend that point because you've read or seen a report/study/something saying widgets are red. Or, if you haven't, then make that very clear in your post that you *think* they might be red but aren't sure.
Not only will people get accurate information that way, but it will also end up causing less fighting here.
-- Jim
It's easy enough these days to check most everything on the internet. Maybe not the ultimate source but at least a start.
So, is you post that widgets are red, then for heavens sake be able to defend that point because you've read or seen a report/study/something saying widgets are red. Or, if you haven't, then make that very clear in your post that you *think* they might be red but aren't sure.
Not only will people get accurate information that way, but it will also end up causing less fighting here.
-- Jim
Mike if you're still there...
Some will tell you that treatment isn't any worse than this thread. Trust me, treatment is a lot worse !
But seriously, if you ignore some of the back and forth, there are some good facts presented here for that should be of help moving forward.
Whatever you do, take your time and get all the facts straight before you make a decision. This place is only a start in that process because frankly we often don't get the facts right here. So double-check everything with outside sources. Getting a second opinion from a hepatologist would help in that process, but don't hesitat to double-check what you hear there as well.
-- Jim
Some will tell you that treatment isn't any worse than this thread. Trust me, treatment is a lot worse !
But seriously, if you ignore some of the back and forth, there are some good facts presented here for that should be of help moving forward.
Whatever you do, take your time and get all the facts straight before you make a decision. This place is only a start in that process because frankly we often don't get the facts right here. So double-check everything with outside sources. Getting a second opinion from a hepatologist would help in that process, but don't hesitat to double-check what you hear there as well.
-- Jim
What do you think about the GI telling me my chances of cure with the IFN/Riba are only about 30%?
It seems against the odds, almost to treat with the knowledge you are not going to be cured.
---------------------------------------------------------------------
A couple of things. First, it would be good for you to get a consult with a hepatologist instead of a g.i. This is particularly true since your g.i. told you that you only have a 30 percent chance of clearing as these are not current odds, even for genotype 1's. Really, the biggest downside to treatment is not the odds (which are closer to 50% for 1's and higher for other genotypes), is the fact that interferon can frequently have some lasting effects. Of course, hep c can have some lasting effects. For me, that outweighs the treatment. But. You need the best info possible from the best medical source in your area. You deserve it. We will be here for you, but do avail yourself of good medical help. If you let folks know your basic area they can suggest some good hepas in your neck of the woods.
It seems against the odds, almost to treat with the knowledge you are not going to be cured.
---------------------------------------------------------------------
A couple of things. First, it would be good for you to get a consult with a hepatologist instead of a g.i. This is particularly true since your g.i. told you that you only have a 30 percent chance of clearing as these are not current odds, even for genotype 1's. Really, the biggest downside to treatment is not the odds (which are closer to 50% for 1's and higher for other genotypes), is the fact that interferon can frequently have some lasting effects. Of course, hep c can have some lasting effects. For me, that outweighs the treatment. But. You need the best info possible from the best medical source in your area. You deserve it. We will be here for you, but do avail yourself of good medical help. If you let folks know your basic area they can suggest some good hepas in your neck of the woods.
Oh no...here we go again with a fighting thread....Med Help....are you out there...i would suggest removing posts like this before they get to out of hand ...Mr Liver....take it easy man....take a deep breath...now take a deep breath out....now relax for Gods sake....
"The beginning of wisdom is to call things by their right names---Chinese proverb"
Gladly....
You're a BULLY Mr Liver.
"You know the basics of tx and that's about it. This is the topic you should stay with until you learn more."
And you're rude and insensitive.
Leave her alone. She's on a very difficult treatment but I have never seen her behave as poorly as you. What's YOUR excuse?
You may have your facts right.....but your tone is so condescending and your attitude so egotistical, that I for one, don't care to ever read anything you have to say.
Gladly....
You're a BULLY Mr Liver.
"You know the basics of tx and that's about it. This is the topic you should stay with until you learn more."
And you're rude and insensitive.
Leave her alone. She's on a very difficult treatment but I have never seen her behave as poorly as you. What's YOUR excuse?
You may have your facts right.....but your tone is so condescending and your attitude so egotistical, that I for one, don't care to ever read anything you have to say.
I dove in head first not knowing very much and I am or was Grade 2 Stage 2, Knodell activity index of 7 of 22 what ever the heck 7 is with bridging fibrosis and had to geterdone while I’m still young and did and now we are in the restoration stage if this helps you.
jasper
jasper
I gotta say .. I did not know myself that there were drugs specifically to combat fatigue during treatment. Too bad it couldn't have been communicated differently...
" “A simple correction could have made it less ATTACKING, ML”.
I'm with you on that one, Jasper.
" “A simple correction could have made it less ATTACKING, ML”.
I'm with you on that one, Jasper.
Mike, I suppose that statement could be said of ANY of us, that it's POSSIBLE for you to progress to liver problems within 5 years. Statistically the odds are in your favour however some of us don't want to play with those odds.
I would have him define what he means by "liver problems". Any evidence of liver damage at all? Stage 1, early liver damage can be sustainable for many years before progressing. I'm Stage 1 and I suspect I've had HCV for 23+ years.
You need to find out what he means by your biopsy being "very good". I would get copies of all your tests. I'm thinking you've got a search for a second opinion in your future.
You don't necessarily need to treat now, Mike. What I suggest is that you get fully informed about your own condition and what treatment involves, the potential side effects for you, the cost of the drugs, how it will impact your current financial and personal situation and give it a good hard think.
Incidentally, I'm Stage 1, 47 years old and at Week 26 of treatment...so obviously I went in for treatment in early stage.
Good luck.
Trish
I would have him define what he means by "liver problems". Any evidence of liver damage at all? Stage 1, early liver damage can be sustainable for many years before progressing. I'm Stage 1 and I suspect I've had HCV for 23+ years.
You need to find out what he means by your biopsy being "very good". I would get copies of all your tests. I'm thinking you've got a search for a second opinion in your future.
You don't necessarily need to treat now, Mike. What I suggest is that you get fully informed about your own condition and what treatment involves, the potential side effects for you, the cost of the drugs, how it will impact your current financial and personal situation and give it a good hard think.
Incidentally, I'm Stage 1, 47 years old and at Week 26 of treatment...so obviously I went in for treatment in early stage.
Good luck.
Trish
Mike,
Take some time and read through the Health Pages located in the upper right hand corner of the page. This along with the links attached to the different threads will give you some good back ground info. and from there you can decide whether you may need to get a second opinion. It seems that this thread has been impaired by some on going side bar conflict which I’m sure will either straighten itself out or just go away without any real answers to your questions.
Good Luck in your decision.
jasper
Take some time and read through the Health Pages located in the upper right hand corner of the page. This along with the links attached to the different threads will give you some good back ground info. and from there you can decide whether you may need to get a second opinion. It seems that this thread has been impaired by some on going side bar conflict which I’m sure will either straighten itself out or just go away without any real answers to your questions.
Good Luck in your decision.
jasper
I don't want to post examples. Just answer Trish. You enjoy the banter too much. You are pompous and I will not add to your already over inflated ego because no matter what I copy and paste you will see it as more justification to your one sided opinion of yourself. I do not wish to contribute to your demise. You are doing a great job all by yourself.
I think you are angry. Oh well.
The learning process doesn't stop when it comes to HCV. I learn something new every day.
"No, I don't want to discuss it with you. Just go ahead and copy and paste all the bad advise I've given so you can feel better and I can look bad."
Well, at least you are not in denial.
Having correct facts doesn't make me superior nor feel superior. Since you have no way of knowing how it feels I wouldn't be so quick to characterize it. Most people I know have a love for the truth and facts. When you blow smoke in my world you lose your credibility. But we are not all created the same, now are we ?
Mr Liver
Still waiting for examples of my meaningless babble. You have time to post this why don't you take the time and get some examples ?
The learning process doesn't stop when it comes to HCV. I learn something new every day.
"No, I don't want to discuss it with you. Just go ahead and copy and paste all the bad advise I've given so you can feel better and I can look bad."
Well, at least you are not in denial.
Having correct facts doesn't make me superior nor feel superior. Since you have no way of knowing how it feels I wouldn't be so quick to characterize it. Most people I know have a love for the truth and facts. When you blow smoke in my world you lose your credibility. But we are not all created the same, now are we ?
Mr Liver
Still waiting for examples of my meaningless babble. You have time to post this why don't you take the time and get some examples ?
No, I don't want to discuss it with you. Just go ahead and copy and paste all the bad advise I've given so you can feel better and I can look bad. Make sure you include all the caring and compassionate advice as well. Something you most definitely lack. I have no regard for you one way or the other. Take your vast knowledge and spread it among the community. They will benefit so much more from it than me. If everthing you post is so spot on you will never have the need to improve upon yourself. Isn't it wonderful to have such a sense of superiority, makes everyone look so miserably stupid which you enjoy pointing out to me and others over and over again. Carry on and continue having the time of your life but I think there's more to it than that.
Trinity
Trinity
"Yes, and in fact Provigil is often prescribed for tx related fatigue"
Thanks for chiming in Jim.
Its quite apparent that a few here adopt the attitude that if they haven't heard about something it must not exist. This has been a common theme in this thread . It's really inexcusable to me in the age of the internet where it is so easy to find information that some don't avail themselves of it, especially before giving out advice. IMO they are just lazy and want to be spoonfed . Thanks again.
ML
Thanks for chiming in Jim.
Its quite apparent that a few here adopt the attitude that if they haven't heard about something it must not exist. This has been a common theme in this thread . It's really inexcusable to me in the age of the internet where it is so easy to find information that some don't avail themselves of it, especially before giving out advice. IMO they are just lazy and want to be spoonfed . Thanks again.
ML
So, you think I'm angry ? lol I'm having the time of my life are you kidding. I guess when people correct you , you don't take it so well.
ore, you have not read my words correctly.
"You know alot more technical information that I do, but that doesn't make you "anymore of an expert." lolololol That's pretty funny.
"When you get your medical degree"----
It doesn't take a medical degree to be accurate and not give out bad,false info. It takes intelligence and an ability to understand what you are reading and the ability to then convey it ACCURATELY to others. It also means that you don't talk about which you don't know.
"Semantics wouldn't have made a bit of difference"
No it wouldn't, you are right. Because you had NO clue that drugs for fatigue even existed.
The beginning of wisdom is to call things by their right names---Chinese proverb
"I know enough about HCV not to ramble on into meaningless babble which is what a lot your post contain. "
Well, if alot of my posts contain meaningless babble perhaps you can be person enough to provide some examples. I won't be holding my breath for this to happen,either.
To: Mr. Liver
An one more thing Mr. Liver, mnl1 never mentioned one time he was depressed. You are assuming that, so just go ahead and have him prescribed an AD without knowing. Very good advise.
I never said that once. Once again you misread what I posted. With your proven ability to not understand what is printed before you I would definitely lay off the advice. But, if you would like to discuss bad advice thats's been given on this forum lately that's a topic I would be very happy to discuss with you.
Mr Liver
ore, you have not read my words correctly.
"You know alot more technical information that I do, but that doesn't make you "anymore of an expert." lolololol That's pretty funny.
"When you get your medical degree"----
It doesn't take a medical degree to be accurate and not give out bad,false info. It takes intelligence and an ability to understand what you are reading and the ability to then convey it ACCURATELY to others. It also means that you don't talk about which you don't know.
"Semantics wouldn't have made a bit of difference"
No it wouldn't, you are right. Because you had NO clue that drugs for fatigue even existed.
The beginning of wisdom is to call things by their right names---Chinese proverb
"I know enough about HCV not to ramble on into meaningless babble which is what a lot your post contain. "
Well, if alot of my posts contain meaningless babble perhaps you can be person enough to provide some examples. I won't be holding my breath for this to happen,either.
To: Mr. Liver
An one more thing Mr. Liver, mnl1 never mentioned one time he was depressed. You are assuming that, so just go ahead and have him prescribed an AD without knowing. Very good advise.
I never said that once. Once again you misread what I posted. With your proven ability to not understand what is printed before you I would definitely lay off the advice. But, if you would like to discuss bad advice thats's been given on this forum lately that's a topic I would be very happy to discuss with you.
Mr Liver
ML: me: I never once even suggested that he could have or did have depression. What's wrong with you ?
---------
Righto. That was MY comment, so give me some credit Jasper :) And yes, depression is a common sympton of fatigue although I never said that "ML" was depressed. Simply suggested he might look elsewhere for causes other than the HCV. Get with the program Jasper :)
---------
Righto. That was MY comment, so give me some credit Jasper :) And yes, depression is a common sympton of fatigue although I never said that "ML" was depressed. Simply suggested he might look elsewhere for causes other than the HCV. Get with the program Jasper :)
trinity said :"SPECIFICALLY FOR FATIGUE"
I said: So you are saying that anti-depressants like trazodone which promotes sleep aren't valid because it was not designed for sleep?
you: ML you should have addressed this comment to jmjm and not have gotten confused with Trinity”.
me: Next time please read my words until you understand them. There was no reason to address anything to Jim. No connection whatsoever to what I posted. I'm not the confused one between us.
you posted : "Trinity states,
An one more thing Mr. Liver, mnl1 never mentioned one time he was depressed."
you: very true !
me: I never once even suggested that he could have or did have depression. What's wrong with you ?
Mr Liver
I said: So you are saying that anti-depressants like trazodone which promotes sleep aren't valid because it was not designed for sleep?
you: ML you should have addressed this comment to jmjm and not have gotten confused with Trinity”.
me: Next time please read my words until you understand them. There was no reason to address anything to Jim. No connection whatsoever to what I posted. I'm not the confused one between us.
you posted : "Trinity states,
An one more thing Mr. Liver, mnl1 never mentioned one time he was depressed."
you: very true !
me: I never once even suggested that he could have or did have depression. What's wrong with you ?
Mr Liver
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