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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???
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Avatar universal
NY: Personally I agree that people should have backup if they are going to make a big sweeping statment such as this
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At least she attributed it to someone else and didn't declare it as fact as is often done here. I posted a thread 5-6 months ago saying folks should cite references or at least be specific with attributions when stating things. Not surpringly I was flamed by some as meddling in discussion group affairs.
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Avatar universal
As of September 15th...an excerpt

From an article saying they just had a gigantic public offering of stock and raised $300million dollars. I did not realize they were also working on a cystic fibrosis drug, cancer pain...etc....


VX-950 is designed to inhibit NS3-4A serine protease, an enzyme considered essential for HCV replication. The drug has fast-track status and is in two ongoing Phase IIb trials, called PROVE 1 in the U.S. and PROVE 2 in Europe, which together are enrolling 580 treatment-na ve patients. A PROVE 3 trial is expected to begin the second half of this year and would enroll about 400 patients.

Vertex has been around since 1989 and focuses on small-molecule drugs to treat viral diseases, inflammatory and autoimmune diseases, cancer pain and bacterial infections. It is concentrating its resources on three clinical-stage programs: VX-950 (telaprevir) for chronic hepatitis C infection, which is in Phase IIb; VX-702 for rheumatoid arthritis and other inflammatory diseases, which is in Phase II; and VX-770 for cystic fibrosis, which is in Phase I.

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Avatar universal
While I wouldn't trust stock prices as the proof that it wasn't squashed (just knowing how much different things can inflate the value of a stock whether it warrants it or not) I't say it's a fair bet it's not squashed.

Personally I agree that people should have backup if they are going to make a big sweeping statment such as this - because it's such a CRUCIAL thing we don't want to give a false impression or else who will do the trials?

LOL
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Avatar universal
I looked and looked, I couldn't find anything at all saying there were heart complications with it or that the trials had been "squashed"
Her info did however match BILN 2061 which was "squashed" in Europe due to heart complications like Jm suggested.

Better to verify info first and make sure its correct so as to not freak people out for no reason. Rumors can be damaging.
If I was on Vertex and someone posted it had been "squashed" in Europe even if the reason wasnt given would worry me a LOT.
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Avatar universal
If Vertex were "squashed" in Europe then it must be a big secret because the Vertex stock keeps going up. I think MyOwn was wise to post it here as an anecdotal story from her friend in the context of another discussion, and not make a new thread out of it cause it's just that right now -- one person's recollection.

-- Jim
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Avatar universal
Myown seems pretty clear that she is sure it was Vertex.  Is anyone on here (GrandOak?) a great googler type person who would know how to see what IS or is NOT going on with this?

Considering some of the problems they are seeing already here in the US...it's got me wondering.

We NEED this drug to work!  Please God do not let it go the way of the other drugs before it!
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Avatar universal
Look, VX-950 is not a done deal BUT we will have a pretty good idea how it will work within the year and in Hep C years that's really not too far off.
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Avatar universal
That makes more sense!
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Avatar universal
I think if it had been "squashed" in Europe because of heart complications
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BILN 2061 was squashed in Europe because of heart complications about two years ago. I'll bet anyone a fake dollar that's what this is about. LOL.
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Avatar universal
In 1969, little was known about even what was then called "Chronic Persistent Hepatitis". In fact, the leading hep authority of that day told me it would "burn out in 5-7 years". Guess the "experts" were wrong. LOL.

So little was known, "Hep C" wasn't invented yet, so obviously no stigma and greatefully no internet. LOL.

I had what they termed an acute reaction, meaning jaundice, fever, yellow eyes, brown urine, white stools. Nothing subtle here :) To make a long story short, I had several remissions and relapse cycles for the next four years and then it basically went away.

Never really gave it a though except maybe once every 6-10 years checked in with a hep who basically told me not to worry plus there weren't any treatments anyway. And, when hep c was first discovered, the hep told me treatment was horrid with lousy results -- that in the monotherapy days.

Did I have any symptons during that time -- the so-called Extrahapatic symptons. Y'know, really not sure. Maybe I did have more fatigue or depression than I may have without the virus. I did have a little psoriais, maybe that was from the virus too. OR maybe none of it was from the virus. Point is I really didn't analyze it cause what was, was. This was my baseline and just accepted it for what it was. Meanwhile, fatigue and all, I managed to compete successfully in some grueling long distance sporting events, more lately against men half my age.

Then, three years ago my biopsy showed stage 3, geno 1's were now getting 50-50 results, so I decided to treat. Put it off for three years and the rest you know.

But basically, outside of the 4 acute/remission years -- Hep C hardly ever affected my life or thoughts at all.

I really believe a lot of the trauma people go nowadays is due to the stigma of the word Hep C as opposed to the virus itself and whatever damage it may cause. This is not to say that the virus can't cause damage but it doesn't with everyone and it generally moves pretty slow.

So in a sense I was unlucky that no cures were available in the old days but in a sense I was lucky because Hep c was never considered a big deal by anyone. I used to mention to folks all the time  -- friends, doctors, relatives, etc, that I had a chronic liver condition just like I might mention I had a bad knee, UNTIL all of a sudden it became HEP C and the stigma started. After that point I told practially no one.

Does a tree make a sound if it falls in the forest if no one is there to listen? Does Hep C exist if no one tells you that you have it?

Nite.

-- Jim
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Avatar universal
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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Avatar universal
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?
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Avatar universal
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.
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Avatar universal
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.
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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.



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Avatar universal
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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Avatar universal
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.
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Avatar universal
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.

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Avatar universal
What are your liver enzymes running now?
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Avatar universal
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
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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!!
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Avatar universal
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.
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Avatar universal
Congratulations on your test! I'm sure you feel you can relax now that you don't have to jump right into tx!
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Avatar universal
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!
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Avatar universal
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,
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Avatar universal
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.
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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
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