Aa
High alt/sgpt test
I am 39, always been very healthy, but overweight. Feel lousy last 10 months, had many blood tests everything normal except one liver alt/sgpt test was 71(norm 9-52), second test I am waiting for. I feel tired alot, pale gums, tingles throughout my head. I excerise 3 miles a day, on a good diet, but feel awful. I have ringing in my ears too. I am SOOOOO sick of feeling sick. I have lost 38lbs in the past 12 weeks, but I will feel great one day and like death the next. I am getting scared. HELP???
sorry to hear your not feeling well. if you are diagnosed with hep c, there are tests you will be getting. A liver biospy is one of them, if you so choose. The biospy will tell the doctor what condition your liver is in. My own personal suggestion is that you may want to first consider a fibrosure blood test. It also will let the doctor know the condition of your liver . The only drawback is it is accurate only if minimal damage or fairly a lot ot damage, anything in between the doctors dis regard test results.The biosy is considered the gold standard, but it won't hurt to first have the fibrosure, if it shows little to no liver damage, you may decide to forgo biopsy. That is a personal decision, best ot be made when you are well informed.
In case I'm making myself clear,,,I just had the fibrosure blood test. Simple test, done with your regular blood labs, My results showed 0 fibroisis, which means no scarrring and 1 as far as inflamation, very little inflamation. The doctor can count these results as accurate. If it showed up cirrohsis, that too would be accurate, but something somewhere in the middle score, they couldn't count. I guess the reason is the test isn't perfected, but I'm just guessing at that. Maybe someone else will know. Talk to your doctor about it. If the score is low, some people choose to wait and forgo treatment until better meds come along. it is a very slow progressing disease, so don't panic if you are told you have it. Wait until you get all the test back and then read as much as you can to be well informed. Read the posts here and try not to worry. You may not even have hep, sometimes the loosing of weight is because of worry also. wish you the best and let us know how you make out.
In case I'm making myself clear,,,I just had the fibrosure blood test. Simple test, done with your regular blood labs, My results showed 0 fibroisis, which means no scarrring and 1 as far as inflamation, very little inflamation. The doctor can count these results as accurate. If it showed up cirrohsis, that too would be accurate, but something somewhere in the middle score, they couldn't count. I guess the reason is the test isn't perfected, but I'm just guessing at that. Maybe someone else will know. Talk to your doctor about it. If the score is low, some people choose to wait and forgo treatment until better meds come along. it is a very slow progressing disease, so don't panic if you are told you have it. Wait until you get all the test back and then read as much as you can to be well informed. Read the posts here and try not to worry. You may not even have hep, sometimes the loosing of weight is because of worry also. wish you the best and let us know how you make out.
Fibrosure blood tests are not very accurate or reliable and do not substitute for a biopsy.
Here is one study, the conclusion of which I posted below.
http://www.clinchem.org/cgi/content/full/49/3/450
"In conclusion, in clinical practice it has been suggested that the FibroTest score might be applied to patients who either have contraindications or refuse liver biopsy for the management of their HCV. We found that FibroTest scores could not accurately predict either the presence or absence of significant fibrosis and could not reliably be used to reduce the need for liver biopsy."
Here is one study, the conclusion of which I posted below.
http://www.clinchem.org/cgi/content/full/49/3/450
"In conclusion, in clinical practice it has been suggested that the FibroTest score might be applied to patients who either have contraindications or refuse liver biopsy for the management of their HCV. We found that FibroTest scores could not accurately predict either the presence or absence of significant fibrosis and could not reliably be used to reduce the need for liver biopsy."
That test study seems to have been done in 2001, if i read it correctly, when I scrolled down.
I was told by 3 liver docs, if the score is low or high, it can be trusted. Possibly the test has improved since that last data. The date at top is 2003, but below the study seems to have been 2 years earlier. Possibly that my have some bearing?Maybe a newer test now? I don't know though
Heres what my test reads as an example:
Fibrosis score 0.08 reference range is 0.00 - 0.21
Necrounflammat Activity Grade High 0.33 0.00-0.17
A-1 Minimal activity.
Limitations: The negative predictive value of a Fibrotest score,,0.31 (absence of clinically significant fibrosis) was 85% when compared to liver bx in 1,270 HCV infected patients, with a 38% prevalence of significant liver fibrosis (F2,3 or 4)The positive predictive value of Fibrosure test score .0.48 (F2,3,4) was 61% in that same patient cohort.
It goes on to say who its not reccomende with,,,Gilberts diseas etc.
So who knows? But I'll take it. I'm believing it is acurate because it is very low, as the doctor said also. My friend, a liver researcher (retired) I went over his house to show the results,He is very PRO tx, but after seeing the results, said I have a choice.
BTW I left my doctor, that whole antidepressant saga. Well I said forget it, I'm out, I am so mad that I allowed her to give me the crock about waiting until summer is over because of the sun. What if she was a doctor in California or Florida? Well, anyhow, I was very down and out, but now I am feeling a little better to have gone over my friends house and hear what he said. Shocking never thought he would say to wait. I do want this out of me, but I am going to weigh things differently knowing where I stand now. I am going to call for an appointment to see antoher doctor and see what he says.
I was told by 3 liver docs, if the score is low or high, it can be trusted. Possibly the test has improved since that last data. The date at top is 2003, but below the study seems to have been 2 years earlier. Possibly that my have some bearing?Maybe a newer test now? I don't know though
Heres what my test reads as an example:
Fibrosis score 0.08 reference range is 0.00 - 0.21
Necrounflammat Activity Grade High 0.33 0.00-0.17
A-1 Minimal activity.
Limitations: The negative predictive value of a Fibrotest score,,0.31 (absence of clinically significant fibrosis) was 85% when compared to liver bx in 1,270 HCV infected patients, with a 38% prevalence of significant liver fibrosis (F2,3 or 4)The positive predictive value of Fibrosure test score .0.48 (F2,3,4) was 61% in that same patient cohort.
It goes on to say who its not reccomende with,,,Gilberts diseas etc.
So who knows? But I'll take it. I'm believing it is acurate because it is very low, as the doctor said also. My friend, a liver researcher (retired) I went over his house to show the results,He is very PRO tx, but after seeing the results, said I have a choice.
BTW I left my doctor, that whole antidepressant saga. Well I said forget it, I'm out, I am so mad that I allowed her to give me the crock about waiting until summer is over because of the sun. What if she was a doctor in California or Florida? Well, anyhow, I was very down and out, but now I am feeling a little better to have gone over my friends house and hear what he said. Shocking never thought he would say to wait. I do want this out of me, but I am going to weigh things differently knowing where I stand now. I am going to call for an appointment to see antoher doctor and see what he says.
There is a lot more evidence out there that says it isn't a substitute for a biopsy and isn't reliable.
Maybe your score from the test is correct and maybe it isn't. I wouldn't rely on it.
Maybe your score from the test is correct and maybe it isn't. I wouldn't rely on it.
MyOwn: My friend, a liver researcher (retired) I went over his house to show the results,He is very PRO tx, but after seeing the results, said I have a choice.
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Congratulations on your Fibrosure! My understanding is also that Fibrosure is reliable at the two extremes.
Your're friend may be understating his/her previous postion regarding treating. In 6-12 months SVR (cure) data will be available from the current Vertex trials. Waiting at least that long to peek at the trial data is a reasonable approach. At that point you can re-evaluate treating then or waiting until the drug hits market.
Wasn't going to mention this at the 11th hour, but since your friend did, I feel I'd be remiss not to chime in as a second voice. I know you're anxious to get going, but by now you realize treatment is not without risks both short and even possibly long term. I think treating with stage 0 is questionable. I personally wouldn't.
If you do decide to treat, I would consider running a non-agressive approach by your doctor to limit your exposure to the treatment drugs.
For example, you could test at week 4. If still detectible, stop treatment and on newer drugs while monitoring your treatment. If detectible, treat another 8 weeks (12 weeks total). This is based on a short-course study for geno 2's and 3's treated with Peg Intron. If you use Pegasys, their study says treat 16 weeks. One of our members, "Rifleman", used this short-course approach, treated 12 weeks and became SVR.
All the best whatever you decide. Maybe pray on it as I'm sure you hafve been doing.
-- Jim
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Congratulations on your Fibrosure! My understanding is also that Fibrosure is reliable at the two extremes.
Your're friend may be understating his/her previous postion regarding treating. In 6-12 months SVR (cure) data will be available from the current Vertex trials. Waiting at least that long to peek at the trial data is a reasonable approach. At that point you can re-evaluate treating then or waiting until the drug hits market.
Wasn't going to mention this at the 11th hour, but since your friend did, I feel I'd be remiss not to chime in as a second voice. I know you're anxious to get going, but by now you realize treatment is not without risks both short and even possibly long term. I think treating with stage 0 is questionable. I personally wouldn't.
If you do decide to treat, I would consider running a non-agressive approach by your doctor to limit your exposure to the treatment drugs.
For example, you could test at week 4. If still detectible, stop treatment and on newer drugs while monitoring your treatment. If detectible, treat another 8 weeks (12 weeks total). This is based on a short-course study for geno 2's and 3's treated with Peg Intron. If you use Pegasys, their study says treat 16 weeks. One of our members, "Rifleman", used this short-course approach, treated 12 weeks and became SVR.
All the best whatever you decide. Maybe pray on it as I'm sure you hafve been doing.
-- Jim
Kalio: There is a lot more evidence out there that says it isn't a substitute for a biopsy and isn't reliable.
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What are you basing this statement on? What evidence are you referring to? Everything I've seen shows Fibrosure accurate at the two extreme ends -- stage 0 and stage 4.
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What are you basing this statement on? What evidence are you referring to? Everything I've seen shows Fibrosure accurate at the two extreme ends -- stage 0 and stage 4.
So your position has changed and now you think Fibrosure can be used in lieu of a biopsy when making the treat or wait decision? I would want a liver biospy to back up what the FibroSURE test was saying to help me decide on starting or deferring treatment. She has decided to treat so it is a moot point. Should she decide to go the route you are encouraging her to, to wait and deal with it down the road, liver biospy is still considered, as I understand it, the gold standard for evaluating liver damage and Fibrosure is still considered inferior in it's ability to access damage.
I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy. I posted one study on it's inaccuracies, you can google it and find lots more.
Yes, it is supposed to be ok for evaluating damage at either end of the spectrum but without a biopsy to back it up, I (and many doctors agree) it is risky to rely on it.
I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy. I posted one study on it's inaccuracies, you can google it and find lots more.
Yes, it is supposed to be ok for evaluating damage at either end of the spectrum but without a biopsy to back it up, I (and many doctors agree) it is risky to rely on it.
<<So your position has changed and now you think Fibrosure can be used in lieu of a biopsy when making the treat or wait decision?
Not at all. If it were me, I would *probably* get a biopsy in addition to the Fibrosure and a Firbroscan as well. I'm belt and suspenders that way and in fact have had 4-5 biopsies over the past 40 years plus two Fibroscans this past year alone. I emphasized "probably" because Fibroscan has shown accuracy on the two extreme ends of the spectrum, it's in the middle where it's may not be that accurate. You made a previous statement that "it isn't all the accurate". In the context of a stage "0", again, what are you basing that statment on.
<<<She has decided to treat so it is a moot point.
Indeed she hasn't. In fact, she stated in her previous post (see C4) that she is seeing another doctor to revisit that decision. But even if she wasn't going to see another doctor -- just like her retired liver-researcher friend told her.
<<I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy.
You've been reading my posts for a long, long time and you know I encourage those not treating to get a liver biopsy in most cases. Some don't want to and I've then encouraged Fibroscan as a good alternative. Fibrosure doesn't stage very well in the middle but as stated, has shown to be accurate at stage 0 and stage 4. If it were me, I'd probably get all three at some point, but more to the point -- given what information MyOwn has right now, I wouldn't encourage her to treat but to watch and wait. Watch and wait is not exclusive of liver biopsy, in fact liver biopsy is often a part of that.
<<KKI posted one study on it's inaccuracies, you can google it and find lots more.
Again, the studies show it's inaccurate in the middle, not at stage 0 and stage 4. If you have a study that contradicts this, please post.
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Just to be very clear, I'm not suggesting MyOwn should not get a needle biopsy. But based on the info she has now, I'm also not suggesting she treat. Are you?
Be well. Glad your sx's seem to be easing up.
-- Jim
Not at all. If it were me, I would *probably* get a biopsy in addition to the Fibrosure and a Firbroscan as well. I'm belt and suspenders that way and in fact have had 4-5 biopsies over the past 40 years plus two Fibroscans this past year alone. I emphasized "probably" because Fibroscan has shown accuracy on the two extreme ends of the spectrum, it's in the middle where it's may not be that accurate. You made a previous statement that "it isn't all the accurate". In the context of a stage "0", again, what are you basing that statment on.
<<<She has decided to treat so it is a moot point.
Indeed she hasn't. In fact, she stated in her previous post (see C4) that she is seeing another doctor to revisit that decision. But even if she wasn't going to see another doctor -- just like her retired liver-researcher friend told her.
<<I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy.
You've been reading my posts for a long, long time and you know I encourage those not treating to get a liver biopsy in most cases. Some don't want to and I've then encouraged Fibroscan as a good alternative. Fibrosure doesn't stage very well in the middle but as stated, has shown to be accurate at stage 0 and stage 4. If it were me, I'd probably get all three at some point, but more to the point -- given what information MyOwn has right now, I wouldn't encourage her to treat but to watch and wait. Watch and wait is not exclusive of liver biopsy, in fact liver biopsy is often a part of that.
<<KKI posted one study on it's inaccuracies, you can google it and find lots more.
Again, the studies show it's inaccurate in the middle, not at stage 0 and stage 4. If you have a study that contradicts this, please post.
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Just to be very clear, I'm not suggesting MyOwn should not get a needle biopsy. But based on the info she has now, I'm also not suggesting she treat. Are you?
Be well. Glad your sx's seem to be easing up.
-- Jim
The "<" seemed to have erased what the reference was to. Probably an HTML code thing. I'm going to re-post the previous thread so it make sense.
Kalio said prev: So your position has changed and now you think Fibrosure can be used in lieu of a biopsy when making the treat or wait decision?
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Not at all. If it were me, I would *probably* get a biopsy in addition to the Fibrosure and a Firbroscan as well. I'm belt and suspenders that way and in fact have had 4-5 biopsies over the past 40 years plus two Fibroscans this past year alone. I emphasized "probably" because Fibroscan has shown accuracy on the two extreme ends of the spectrum, it's in the middle where it's may not be that accurate. You made a previous statement that "it isn't all the accurate". In the context of a stage "0", again, what are you basing that statment on.
Kalio said prev: She has decided to treat so it is a moot point.
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Indeed she hasn't. In fact, she stated in her previous post (see C4) that she is seeing another doctor to revisit that decision. But even if she wasn't going to see another doctor -- just like her retired liver-researcher friend told her.
Kalio said prev: I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy.
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You've been reading my posts for a long, long time and you know I encourage those not treating to get a liver biopsy in most cases. Some don't want to and I've then encouraged Fibroscan as a good alternative. Fibrosure doesn't stage very well in the middle but as stated, has shown to be accurate at stage 0 and stage 4. If it were me, I'd probably get all three at some point, but more to the point -- given what information MyOwn has right now, I wouldn't encourage her to treat but to watch and wait. Watch and wait is not exclusive of liver biopsy, in fact liver biopsy is often a part of that.
Kalio said prev:. I posted one study on it's inaccuracies, you can google it and find lots more.
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Again, the studies show it's inaccurate in the middle, not at stage 0 and stage 4 and that is the case with MyOwn so generalties about Fibrosure do not apply. If you have a study that contradicts this, please post.
-------------------------------------------------------
Just to be very clear, I'm not suggesting MyOwn should not get a needle biopsy. But based on the info she has now, I'm also not suggesting she treat. Are you?
Be well. Glad your sx's seem to be easing up.
-- Jim
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Not at all. If it were me, I would *probably* get a biopsy in addition to the Fibrosure and a Firbroscan as well. I'm belt and suspenders that way and in fact have had 4-5 biopsies over the past 40 years plus two Fibroscans this past year alone. I emphasized "probably" because Fibroscan has shown accuracy on the two extreme ends of the spectrum, it's in the middle where it's may not be that accurate. You made a previous statement that "it isn't all the accurate". In the context of a stage "0", again, what are you basing that statment on.
Kalio said prev: She has decided to treat so it is a moot point.
---------------------------------------------------------------
Indeed she hasn't. In fact, she stated in her previous post (see C4) that she is seeing another doctor to revisit that decision. But even if she wasn't going to see another doctor -- just like her retired liver-researcher friend told her.
Kalio said prev: I think if you are going to advocate that people put off dealing with their disease and wait on better things that might come in the future it is a good idea to encourage them to get the best evaluation available, and that is a biopsy.
---------------------------------------------------------
You've been reading my posts for a long, long time and you know I encourage those not treating to get a liver biopsy in most cases. Some don't want to and I've then encouraged Fibroscan as a good alternative. Fibrosure doesn't stage very well in the middle but as stated, has shown to be accurate at stage 0 and stage 4. If it were me, I'd probably get all three at some point, but more to the point -- given what information MyOwn has right now, I wouldn't encourage her to treat but to watch and wait. Watch and wait is not exclusive of liver biopsy, in fact liver biopsy is often a part of that.
Kalio said prev:. I posted one study on it's inaccuracies, you can google it and find lots more.
-------------------------------------------------------
Again, the studies show it's inaccurate in the middle, not at stage 0 and stage 4 and that is the case with MyOwn so generalties about Fibrosure do not apply. If you have a study that contradicts this, please post.
-------------------------------------------------------
Just to be very clear, I'm not suggesting MyOwn should not get a needle biopsy. But based on the info she has now, I'm also not suggesting she treat. Are you?
Be well. Glad your sx's seem to be easing up.
-- Jim
My first paragraph in previous post should have read in part: "I emphasized "probably" because *Fibrosure*has shown accuracy on the two extreme ends of the spectrum,
Thanks for the congrats and I do believe that the test is accurate for me only because of where my numbers are. You're reading my mind, because I may NOT tx as I had planned. I am looking at this delay that this doctor put me through as a move of God. Sometimes we curse delays under our breath and then to find out it was God intervening for us. People that were late for their job at the world trade center on that horrible day testify to that.
As far as the Vertex, I questioned my friend about that, He told me the Vertex was squashed in Europe because of problems.Why they are doing it here, who knows? I don't know whether I should comment on what he said. I know people have already started on it. While I was sitting and talking I actually thought about you and a few others on forum who know much, much more than I, and would have been able to question him more and absorb more of what he was saying.
He and his wife are moving, but of course we will keep in touch. Just because he is retired does not mean he will loose contact with whats going on. We will remain in contact and he said he will let me know when something looks good or promising. He told me to keep an eye on my enzymes if I choose not to tx. I said I will, but stupid me, why didn't I ask what he considers too high, just incase.
I didn't take your advice as misleading me in anyway, nor do I think that you conveyed a message that you now favor fibrosure over bx. When will people on this forum, stop twisting peoples words?
Jim why did you waste your time and energy defending yourself, Everyone knows where you stand. I know you're a bx man, probably a leg man too.lol But really, don't waste your time. your advice is always helpful to the 10th degree. I am going to seek another opinion, but to be honest, I don't feel it necessary to get a bx at this point. I feel confident that the score was accurate, maybe to some its a gamble, but the bx has limitations also, correct,,,didn't I read on forum England or somewhere over there takes a bx from 3 areas. So i can tell someone that their bx is not that reliable because they only had one area done, but that would be silly to get into all that.
after getting another opinion,I am going to try to resume life and even stay away from the forum a little bit...hark,,,,do I hear a thunderous applause. lol Is that Cuteus walking towards me with flowers,,,ahh, thanks, ya didn't have to do that... lol
So thats the story. I feel much better than I did. Going down to the doctors early early and pulling out all my records was a good thing. They never expected it to get to that point, but I am not going to take antidepressant just because this is what she has her patients do. All these drugs mess with your chemistry, yet doctors prescribe them like candy. Its differnt if someone is depressed, but to use them as a preventative is against my belief. I'll be checking in now and then,,,,, probably tommorrow. lol See ya ,,nighty night. thanks you're the best!
As far as the Vertex, I questioned my friend about that, He told me the Vertex was squashed in Europe because of problems.Why they are doing it here, who knows? I don't know whether I should comment on what he said. I know people have already started on it. While I was sitting and talking I actually thought about you and a few others on forum who know much, much more than I, and would have been able to question him more and absorb more of what he was saying.
He and his wife are moving, but of course we will keep in touch. Just because he is retired does not mean he will loose contact with whats going on. We will remain in contact and he said he will let me know when something looks good or promising. He told me to keep an eye on my enzymes if I choose not to tx. I said I will, but stupid me, why didn't I ask what he considers too high, just incase.
I didn't take your advice as misleading me in anyway, nor do I think that you conveyed a message that you now favor fibrosure over bx. When will people on this forum, stop twisting peoples words?
Jim why did you waste your time and energy defending yourself, Everyone knows where you stand. I know you're a bx man, probably a leg man too.lol But really, don't waste your time. your advice is always helpful to the 10th degree. I am going to seek another opinion, but to be honest, I don't feel it necessary to get a bx at this point. I feel confident that the score was accurate, maybe to some its a gamble, but the bx has limitations also, correct,,,didn't I read on forum England or somewhere over there takes a bx from 3 areas. So i can tell someone that their bx is not that reliable because they only had one area done, but that would be silly to get into all that.
after getting another opinion,I am going to try to resume life and even stay away from the forum a little bit...hark,,,,do I hear a thunderous applause. lol Is that Cuteus walking towards me with flowers,,,ahh, thanks, ya didn't have to do that... lol
So thats the story. I feel much better than I did. Going down to the doctors early early and pulling out all my records was a good thing. They never expected it to get to that point, but I am not going to take antidepressant just because this is what she has her patients do. All these drugs mess with your chemistry, yet doctors prescribe them like candy. Its differnt if someone is depressed, but to use them as a preventative is against my belief. I'll be checking in now and then,,,,, probably tommorrow. lol See ya ,,nighty night. thanks you're the best!
MyOwn: He told me the Vertex was squashed in Europe because of problems.
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I wonder if he's not confusing Vertex with a previous trialed protase inhibitor, BILN 2061, that was pulled off of trials around a year and a half ago? Haven't heard anything about Vertex being "squashed". But even if it ends up not working, as a probable Stage 0, Watch n' Wait still makes sense. Remember, it's not "Watch with a Guarantee" it's "Watch n' Wait :)
MyOwn: I know you're a bx man, probably a leg man too.lol
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Glad we got that straigtened out. Am I that transparent :)
MyOwn: I don't feel it necessary to get a bx at this point.
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Understood based on some of your previous posts. Still -- and no immediate rush -- but consider doing a day or overnight trip to Afdahl in Boston sometime this year as a private patient. He has a Fibroscan machine. It's a non-evasive way to stage Fibrosis, has shown promising results and as a private patient you will probably get scanned. I had two scans this year. Hopefully, within the next year or two, Fibroscan machines will start popping up at more local locations.
Contact info for Afdhal: http://tinyurl.com/nbavn
MyOwn:
after getting another opinion,I am going to try to resume life and even stay away from the forum a little bit..
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Now, you're reading my mind. I was going to suggest that to you.
Get off here for a while, maybe even a longer while :) What you fill your thoughts with day and night can affect your health. In fact, I'm giving this advice to me as well as you, cept' it's always easier to give advice than accept :) And, of course, this in no way reflects on what a wonderful and helpful place this can be. Just sometimes being off can make more sense.
All the best.
-- Jim
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I wonder if he's not confusing Vertex with a previous trialed protase inhibitor, BILN 2061, that was pulled off of trials around a year and a half ago? Haven't heard anything about Vertex being "squashed". But even if it ends up not working, as a probable Stage 0, Watch n' Wait still makes sense. Remember, it's not "Watch with a Guarantee" it's "Watch n' Wait :)
MyOwn: I know you're a bx man, probably a leg man too.lol
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Glad we got that straigtened out. Am I that transparent :)
MyOwn: I don't feel it necessary to get a bx at this point.
---------------------
Understood based on some of your previous posts. Still -- and no immediate rush -- but consider doing a day or overnight trip to Afdahl in Boston sometime this year as a private patient. He has a Fibroscan machine. It's a non-evasive way to stage Fibrosis, has shown promising results and as a private patient you will probably get scanned. I had two scans this year. Hopefully, within the next year or two, Fibroscan machines will start popping up at more local locations.
Contact info for Afdhal: http://tinyurl.com/nbavn
MyOwn:
after getting another opinion,I am going to try to resume life and even stay away from the forum a little bit..
------------------------------
Now, you're reading my mind. I was going to suggest that to you.
Get off here for a while, maybe even a longer while :) What you fill your thoughts with day and night can affect your health. In fact, I'm giving this advice to me as well as you, cept' it's always easier to give advice than accept :) And, of course, this in no way reflects on what a wonderful and helpful place this can be. Just sometimes being off can make more sense.
All the best.
-- Jim
lets not forget that the "gold standard" biopsy has flaws as well, not just limited to who reads them or what part of the liver the sample is taken from or perhaps not a big enough sample. my hep doc also said they are doing the fibrosure more often with patients that do not have that many symptoms and rely on it being 80% accurate especially the low & high end of the scale. i think we are only a few years away from NON-invasive tests becoming the gold standard for liver damage testing.
My Own, You went so far as to say this much:
"As far as the Vertex, I questioned my friend about that, He told me the Vertex was squashed in Europe because of problems. Why they are doing it here, who knows?"
That is a really sweeping statement. Squashed in Europe? Are you serious? If you aren't going to elaborate, why'd you say this much? Everyone here is anxiously waiting on VERTEX results so if you have some information, please share it.
Jm
My position remains the same, I think anyone choosing to wait to treat definately needs a biopsy to make an informed decision. I think doing a Fibrosure is a good idea too, but I wouldn't base my decision on that alone due to it's limitations.
"As far as the Vertex, I questioned my friend about that, He told me the Vertex was squashed in Europe because of problems. Why they are doing it here, who knows?"
That is a really sweeping statement. Squashed in Europe? Are you serious? If you aren't going to elaborate, why'd you say this much? Everyone here is anxiously waiting on VERTEX results so if you have some information, please share it.
Jm
My position remains the same, I think anyone choosing to wait to treat definately needs a biopsy to make an informed decision. I think doing a Fibrosure is a good idea too, but I wouldn't base my decision on that alone due to it's limitations.
Kalio: My Own, You went so far as to say this much:
(Vertex) Squashed in Europe?... if you have some information, please share it.
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Her friend told her this. My guess is that he may be confusing Vertex with an earlier protease inhibitor biln 2061 that was "squashed" a year or two ago. At least I hope so and have no reason to believe otherwise.
Kalio:
My position remains the same, I think anyone choosing to wait to treat definately needs a biopsy to make an informed decision. I think doing a Fibrosure is a good idea too, but I wouldn't base my decision on that alone due to it's limitations.
----------------------------------------------------
I don't think we're really far off in agreement on this, although Copyman makes some valid points in his post above. Certainly, a biopsy is a sensible option for MyOwn, either now or sometime in the future, depending on a number of factors including blood tests and how some of the non-evasive tests like Fibroscan pan out in the next year or so.
(Vertex) Squashed in Europe?... if you have some information, please share it.
----------------------------
Her friend told her this. My guess is that he may be confusing Vertex with an earlier protease inhibitor biln 2061 that was "squashed" a year or two ago. At least I hope so and have no reason to believe otherwise.
Kalio:
My position remains the same, I think anyone choosing to wait to treat definately needs a biopsy to make an informed decision. I think doing a Fibrosure is a good idea too, but I wouldn't base my decision on that alone due to it's limitations.
----------------------------------------------------
I don't think we're really far off in agreement on this, although Copyman makes some valid points in his post above. Certainly, a biopsy is a sensible option for MyOwn, either now or sometime in the future, depending on a number of factors including blood tests and how some of the non-evasive tests like Fibroscan pan out in the next year or so.
honey,,my enzymes have been normal range for quite a while, but just poped up a little. ast 41 0-40
alt 64 0-40
My doctor friend saw them, so he knows, but I guess he means if they skyrocket? I don't know. I'm,in lah- lah land lately.My mind is in the wondering mode alot of times
-----------------------------------------------------------------
Hey Jim,
He was talking about vertex. I hated to say it.
So listen buddy gonna take a break. Wish we all did have that private email thingy as Susan mentioned, I'd keep in touch with ya. Oh well. I wouldn't want to post my email publically,too may cyber nuts....I will check out where Rocker said he went, I saw the site,,,maybe he has an email that I can contact him, wouldn't mind keeping in touch with him. He's funny, cracks me up. He growls once in a while, but he don't bite. ha ha
take care Jim, i'll check in to see ya all once in a while.I wish EVERYONE the best....
Ps jim,,,what did you mean you had 4 -5 bx over last 40 years? When did you find out you had hep? Were you dx with non A non B you mean?
Now I will try to sleep. It didn't work before, but I need the rest. Good night again!!
alt 64 0-40
My doctor friend saw them, so he knows, but I guess he means if they skyrocket? I don't know. I'm,in lah- lah land lately.My mind is in the wondering mode alot of times
-----------------------------------------------------------------
Hey Jim,
He was talking about vertex. I hated to say it.
So listen buddy gonna take a break. Wish we all did have that private email thingy as Susan mentioned, I'd keep in touch with ya. Oh well. I wouldn't want to post my email publically,too may cyber nuts....I will check out where Rocker said he went, I saw the site,,,maybe he has an email that I can contact him, wouldn't mind keeping in touch with him. He's funny, cracks me up. He growls once in a while, but he don't bite. ha ha
take care Jim, i'll check in to see ya all once in a while.I wish EVERYONE the best....
Ps jim,,,what did you mean you had 4 -5 bx over last 40 years? When did you find out you had hep? Were you dx with non A non B you mean?
Now I will try to sleep. It didn't work before, but I need the rest. Good night again!!
Dx Chronic persistent hepatitis around 1969; Later Dx changed to NonA-NonB and then later to Hep C. First biopsy was 1969-70. I agree on not posting regular email addresses on the net. I suggest if anyone does post an email address anywhere on the net, they open a separate account from their regular email like a free Yahoo or Google Mail account. Then they can always close that account down if necessary.
Congratulations on your test! I'm sure you feel you can relax now that you don't have to jump right into tx!
Thanks for your input, Copyman
Kalio, I just found this out yesterday when i questioned him and then to have to bring news like that where people are in this trial was something that I had reservations about, I had figured they were already taking it and I didn't want it to scare anyone, If this does make it's way for everyone to use, i would have come back here and just let you guys know what I was told, so you can make a choice. But if you want that info now, he had said the people who had used the vertex were developing heart related problems.
Who knows maybe they made an adjustment with what the problem was before they began tests here. I would hope so, but who knows.
We are all guinea pigs. Boston Scientific has a drug eluding stent that was released, as far as I'm concerned way too early. I have a family member who has one and had problems and I was amazed when I called their headquarters to find out the clinical trial was only one year and that they had no data if more than one stent would be used, yet doctors were putting sometimes 3 stents in people. Go figure. I thought the FDA slows things down as some say,,,well not with stents evidently. B.S had a recall, but only after some patients died. They are still being used, but please check out stents if anyone has a family with a heart condition, so that you can make an informed choice. Unfortuantely when in an emergecy decision, you have to follow doctors orders or possibly die. But at least knowing the type of stent a cardiologist uses is helpful info, because some are better than others,as I found out for my family member, after the fact though.
Kalio, I just found this out yesterday when i questioned him and then to have to bring news like that where people are in this trial was something that I had reservations about, I had figured they were already taking it and I didn't want it to scare anyone, If this does make it's way for everyone to use, i would have come back here and just let you guys know what I was told, so you can make a choice. But if you want that info now, he had said the people who had used the vertex were developing heart related problems.
Who knows maybe they made an adjustment with what the problem was before they began tests here. I would hope so, but who knows.
We are all guinea pigs. Boston Scientific has a drug eluding stent that was released, as far as I'm concerned way too early. I have a family member who has one and had problems and I was amazed when I called their headquarters to find out the clinical trial was only one year and that they had no data if more than one stent would be used, yet doctors were putting sometimes 3 stents in people. Go figure. I thought the FDA slows things down as some say,,,well not with stents evidently. B.S had a recall, but only after some patients died. They are still being used, but please check out stents if anyone has a family with a heart condition, so that you can make an informed choice. Unfortuantely when in an emergecy decision, you have to follow doctors orders or possibly die. But at least knowing the type of stent a cardiologist uses is helpful info, because some are better than others,as I found out for my family member, after the fact though.
Thanks honey, yes i do feel I can take a breather and wait for something else down the road.
Jim, wow thats a long time ago to be dx. How have you felt over the years? That is a big burden to carry. Well i guess I do have some time then if I am at this stage. Did you feel sick over the years or as if nothing wrong?
Jim, wow thats a long time ago to be dx. How have you felt over the years? That is a big burden to carry. Well i guess I do have some time then if I am at this stage. Did you feel sick over the years or as if nothing wrong?
Thanks for saying what you were told. It is alarming info that isn't consistent with info about Vertex that has been made available so far. We will have to wait and see. I think if it had been "squashed" in Europe because of heart complications, that would be info that would be known and the stock prices would be going down not up.
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