Hepatitis Researcher or anyone else I need advice on upping my Riba dose

I would like some opinions on what I have been strategically doing in regards to treatment. I am type 1A and finally became undected at 24 weeks and had my doctor agree to treat me for 72 weeks due to my late response.  I am currently on week 45 and for the past 1 and a half months have upped my Riba dose from the prescribed 1200 mgs to 1600 mgs. ( because his PA gave me a large supply of free Riba).  I'm doing this increased dosage of Riba because of that study from Switzerland which used large doses fromm 1600-3000 mgs and 9 out of  10 participants had Svr 's 6 months following 48 weeks of treatment.  My question to everyone is do you think this strategy ups my chances of svr since I have about 30 weeks of treatment left or is it to late in the game to up the dosage of Riba to have any real impact on SVR?  I don't want to add undo toxicity to my body if its not neccessary, but if it ups my chances of SVR, so be it.  By the way, the extra 400 mgs can really be felt!

[aiuta]

This is a good question.  I don't have the answer, but some people here should be able to help you.  How much do you weigh?  And when you said "the extra 400 mgs can really be felt" what specific changes have you noticed?  Congrats on finally going UND and I'm glad you will be treating for 72.  All my best, Aiuta

[St. George]

I weigh 2oo pounds and am 6 foot.  The increased dosage has brought on extreme nausea and lethargy.

[Skepsis]

Hi, I am 48 y. male, acquired HCV - along with HBV - probably for 48 years, with 4 weeks after birth when I got excessive blood transfusions... 19 times so called "micro-tranfusions" for having Rh-incompatible parents... my twin sister died on that occasion.

I have absolved my 2. Peg-Combo Tx 52 weeks 6 month ago.

Status: g1b, very slow response again,  VL fall from baseline 3.000.000 to 200 (Taqman), not quite negative, but just, with complete normalization of GPT and GGT.

After 36 week VL above 2.000, therefore last 7 weeks without ribavirin. After 52 week VL rebound with 2.700.000.

This is only one case only, but it is in accordance with the long term importance of ribavirin.

BUT:

The swedish study - as I can recall it - stressed the need of extensive need of treeting the side effects with very high ribavirin doses - that could mean staying in hospital for monitoring/treating of Sx is most probably.

Such an extreme strategy could even put SOC at risk if it would have to be stopped temporarily for some serious sides, e.g.

Another objection: the quoted numbers of "Nine of Ten cases" does not mean a statistically established success rate of 90% percent.  
(Well, it could be even higher but I wouldn't bet ;-)

There are just not enough safe safety data with such high doses administered long-term. Such data are normally provided by large Phase 2-3 (or post-marketing) studies with >1000 Patients...

I did not hear anything of long-term outcome in these ten cases, either.

So I would be very-very cautious....

[desrt]

Skepsis makes some excellent points. Also, if you're doing this without your doctor/ins. co's knowledge and damage yourself, you may be making it more diffucult for the next patient to get extended tx or even SOC.
And no, at this point in your tx you're probably not improving your chances of SVR anyway.

[copyman]

not sure about increasing riba this late in the game but i know it helps in the early stage of tx. i would ride it out with dose that was prescribed and not take any more chance then necessary to have post tx damage. best of luck

[honey11]

Hi,,,Does this mean that you are still going to go for 72 weeks and up the meds?  Or are you thinking about upping and completing 48 weeks?  Honestly, if you are doing 72 weeks, I think you are good on your regular dose and afraid that by upping you are maybe opening up your chances of drops in bloodwork and you want to keep ahead of the game if you have the extra weeks you are tacking on.  There is many that have done 72 weeks on regular doses and maintained SVR.  Another thing you have to be careful and monitored when taking more riba is your heart.  Good Luck to you!

[cuteus]

hard to say if riba will help reach svr at higher doses this late in tx, but we had one member here, who stopped the riba at wk 52, decreased peg by half for another 30 wks or so.  he did not get svr.  was it the absence of riba or something else? we don't know, but he had a EVR, so it is hard to determine what did not work.  you need to tell your dr what you are doing, though.
there was a study I read where one group did not continue with riba the full length of tx, but I can't recall the outcome.  I think it did affect the SVR rate.  I can't find the article in my bookmarks, unfortunately.

[DoubleDose]

Here is a different opinion.  I am one who believes that the Ribavirin dosage is extremely important to getting the SVR, not just being undetected at EOT.  Many studies have demonstrated the importance of maximized Ribavirin dosing.  You are 200 lbs. so probably 1,400 mg. would have been your 'standard' weight based dose.  Adding another 200 mg. MIGHT be effective in upping your SVR odds.  I think it all boils down to how massively the new dosage is affecting your RBC counts.  If the 1,200 dosage did not have you begging for Procrit, and if your doctor was not on high alarm from your bloodwork using 1,200 mg. then maybe you are on a dosage that is potentially more 'therapeutic' for you, according to how your body, and body mass, metabolize the ribavirin.  Even if your counts go into the 8.5 to 9.5 range, (as mine did, even on Procrit), you could at least use Procrit to see if you can stablize the RBC counts.  

Talk to your doctor, and monitor your situation.

DoubleDose

[Kalio1]

Just wanted to welcome you to the forum and say I am really enjoying your input.

[sfbaygirl]

Me too! I was wondering if you Taqman VL test went to <200 or you showed a numerical value? I had the Taqman as well and it is so confusing I was on the phone with the lab and the Dr. yesterday. It sounds like they do a Quant to <200 and a Qual <75. My PCR looks like they contradicted themselves giving me two results. So now I am still unsure. BTW I now have a NEG <50 at 32 weeks! YEAH!

[sfbaygirl]

Great news! Thanks. While you expect to be NEG after 32 weeks, we all know some that have had breakthroughs. Of course I was worried. My fax machine jammed up and it took hours running up and down the stairs looking for the darn thing. LOL

Went and watched my grandkids belly dance at the morrocan restaurant last night. I was too cute and really put a smile on my face. My adorable 4 y/o granddaughter collected 4 bucks in her skirt. People were asking me if I was her mother (that made me feel good too!)

Also I was <50 not >50. I mix them up too, but at this point I really like watching those less than and more than signs!

[sfbaygirl]

The baby was there last night, although he didn't belly dance! lol He slept through most of it, of course. When he woke up, he was alert and calm. So sweet! The noise didn't seem to bother him as much as it did me.

[Skepsis]

I am layman to medicine but as a mathematician I can easily interpret these results.

They seem to be fully consistent.

Both your results come from a quantitative test, which has two lower limits:

75 IU/ML (or log 1.9, which refers the same number):
this is the "limit of detection", if you have lesser viral load in your blood, it cannot detected at all by this assay - it is complete negative.

200 IU/ML (=log 2.3) this is the "limit of quantification".

If the real VL in your blood is between 75 and 200 IU/ml, the assay is capable to detect it (saying only it's "positive"), but cannot assign a reliable numeric measure to it.

The true dynamic range is all above 200 IU/ml: if your VL is higher than this, it can be measured with sufficient reliability

End finally it has been stated, that your VL is under 75 IU/ml with this quantitative assay. Furthermore it has been offered the qualitative assay which could assure your UND to some minor extent more relyably: this could have detect or rule out positivity in the additional range between 50 IU/ML and 75 IU ML (all above this has been ruled out by the quantitative test.)

This doesn't make any sens to bother about this quantitive tests for the moment, for follow-up tests could be somewhat more reliably, but there is no much difference. (Only in case you should relapse, which I think is not probable and hope not to occur, the quantitative test could provide more numeric information of the dynamics.)

CONCLUSION:
At week 10 you had a VL between 75 and 200IU/ml, at week 20 below  75 IU/ML, which does mean NEGATIVE in the terminology of the test.

Fantastic! You are undetectable, confirmed by a sufficiently sensitive assay, and very importantly it is consistent with a very preferable EVR-classification (Early Viral Response, which is for SVR a very beneficial prognostic milestone!).

[sfbaygirl]

This is what the HR thought and I thought too. Thanks for reading it. My GI thinks I was UND both tests. I don't agree. With the newer studies, Tapias, Berg, Perlman etc. They seem to agree that if you don't have a clear PCR at week 4, that extention may be necessary and if not clear at week 12, but clear at 24, then 72 weeks is preferable. Given the new article in Journal of Hepatology yesterday, this advise seems more pertainent. Re treating gives less of a chance at SVR, so why not extend, rather than risk retreatment?

[sfbaygirl]

The tech at the lab was confused by these results on my test. Perhaps a computer glitch? Then he seemed to say it was UND both times, but wasnt' sure. There was too much hesitation in his voice. This is crazymaking when you have to depend on that first test especially to give you the VL early enough to predict SVR, esp those high at risk. Lot's of variables, but you would think labs would be a little more clear. So you think the quant was between 75 and <200 IU/ml? because of the quant and qual being done?

[Skepsis]

NEG < 50 at week 32 is the small miracle, which I only hoped to arrive at after my week 24 VL - it was just above 200 IU/ml(TaqMan quantitative essay). Sensitivity should have been 35 IU/ml ... it was stated that these results would have qualified as negative with previous test procedures (older Cobas Amplicor)... regarding slow but steady VL-decrease in the first 6 months one saw some remaining chances to achieve full negativity, perhaps by the week 36 ... but it couldn't be confirmed later, at any time point... .

I think you should ask for exact information at your Lab about their TaqMan, how they qualitative and quantitative essays are calibrated and which one applied for your tests.

In the case of a qualitative test you can only say whether your VL was above or below the sensitivity limit; with quantitative tests you get actual VL within the dynamic range of the test.

We thought about extending therapy to 72 weeks ... one new role of thumb for SVR (for Genotype 1x; no official protocol though!) could be formulated as "you should be on therapy for 24 more weeks after first getting tested negative" - to have a significant chance to avoid relapse.

The rationale behind this is that therapy effect is based mainly upon preventing new infection of hepatocites while old infected cytes have to die on their own to clean the liver of the mass of virus they contain. And the life-cycle of hepatocytes amounts up to 1 year, therefore one have to allow infected cells simply enough time to die...

It is perhaps somewhat speculative, but such thoughts gave me (to a good extent rational being) often motivation and due patience to endure all that tortures...

[sfbaygirl]

The labs are crazy making. Called the lab last night with the Dr. on the line to ask how these labs are run. It is by Roche at lab in Utah. Anyway what do you make of these? The tech guy says that I am UND by qual and quant. Why do they look different at 10 and 20 weeks? Dr. thinks they look like they are contradicting each others results...

Here is they are,

Hep C RNA / NOT QNT(1) / <1.9 log

(1) HCV RNA detected below the limit of quantification The limit of quantification of this assay is 2.3 log IU/ml HCV RNA (200 IU/mL). The lower limit of detection of this assay is 1.9 log IU/mL HCV RNA (75 IU/mL) .....Results below the limit of detection (1.9 log IU/mL will be reported as ,1.9 log IU/mL. Results between 1.9 and 2.3 log IU/mL (75 to 200 IU/mL) will be reported as "HCV RNA detected below the limit of quantification." Results 2.3 log IU/mL (200 IU/mL) and greated will be reported with a numeric value.

at 20 weeks 9/11/06

Hep C RNA / <1.9 (8) / <1.9log IU

(8) Viral load result for HCV RNA is less than 75 IU/ML

The log 10 value for HCV RNA is less than 1.9
A qualitative PCR assay with a detection limit of 50 HCV RNA IU/mL is available of assessment of lower levels of HCV viremia.....

Obviously the two tests say different things....

[Skepsis]

YOU WROTE: So you think the quant was between 75 and <200 IU/ml? because of the quant and qual being done?
------------------------------------------
NO: you were tested with the same quant assay on both occasions.

Your VL measured

at week 10: below  200 IU/ml (but above 75).
at week 20: below   75 - undetectable.

1. Rule to be classified as EVR : undetectable at WEEK 12
2. To rule out Non-Response     : undetectable at WEEK 24

Non-Response was ruled out for you 4 weeks earlier - something beyond expectation.

You were tested for EVR 2 weeks too early, but given this plus the < 200 value and the consistent profile with 20 week UND, UND ( VL < 75) on week 12 is very plausible.

This is a very good first half of therapy. Extending Tx is perhaps an optimizing option to consider but not a desperate last rescue as is the case with real slow responders....

You have some other factors to consider, too: Sx, financial and social situation... The beneficial effect of extending to 72 weeks for EVR-s to get SVR is limited: perhaps a 10 percent rise from a relatively high response rate (60 percent or more) seen with 48 weeks standard therapy.

You have to answer the question: is that worth of it?

Skepsis

[sfbaygirl]

Thanks, makes sense. Is it worth it, I dont' know yet. Going to get an opinion from another dr. next week.

I read below you have tx 5 times? A non responder? I was thinking of adding some Allina to my last couple months of tx. Do you plan on other tx? Sounds like SOC isn't going to work for you at this point. What are your stats, if you don't mind me asking. I may have missed them earlier and appologize for being nosy.

[Skepsis]

Thanx for the questions... I see only limited options, waiting for telaprevir or perhaps for some more informations about statins seems the best strategy...  

Previously I lived in Germany, where I received my first IFN- (mono Tx)in 1989-90, which was repeated 3 times later on.

These were early investigational therapies, short-term too.  To that time not even the terminology response - non-response - partial response or relapse were established.  

Later in 2001-2006 and 2005-2006 were two serious attempts made with PegIntron+Ribavirin and Pegasys+Ribavirin, respectively.

It was on the verge of a slow response at first, beeing undetectable with not very sensitive lab assays.

On therapy nonetheless all the liver tests were normalizing (being GGT the most drastical anomaly), therefore my docs concluded to continue Tx for having protective potential against HCC, which I am at a higher risk. (I got infected with HCV and HBV and probably HAV too, most probably as a baby 4 weeks after birth from a series of blood transfusions in Hungary). I tested HBV negative but anti-HBc positive, which means a more then 10-fold risk for getting liver cancer for HCV patients.

Despite of suffering much of these conditions and all of therapies I could work as an expert in informatics and mathematics all these years - it is vital for my family and I think it is good for me too, but did cost very much efforts .

Thanx and good night (it is night here in Europe, I am very tired too....)

Skepsis

[Hepatitis Researcher]

Re the 10 wk results with this test that you discussed in much detail above: The final conclusion after analyzing all the details talking with the testing company and the report and being a PCR test expert. It was not one test as one might suspect, but a reflex to a second - a qual one. The notion on the first test was contradictory/ ambiguous, but the preponderance of the relevant evidence leads to the conclusion:

99% certainty that the first test was also NEG below 75 iU.

the lab has promised to remove the ambiguous lanquage from their reports.

Guten Abend Herr Skepsis. Ich nehme an Sie sprechen Deutsch.

[Hepatitis Researcher]

The advice you got from the above posts is about as good as it gets. You would have to work with your Dr. to introduce the increased Riba dose and the pros and cons have been well outlined. i would probably try the higher dose route as well - possibly gradually increasing while monitoring sides.

[jmjm530]

"Unfortunatly, the most accurate way of ascertaining if you're on HDV is HPLC testing, not readily available in this country. "

should read:

Unfortunatly, the most accurate way of ascertaining if you indeed have high serum riba levels is HPLC testing, not readily available in this country.
--------------------
Another, but far cruder method of ascertaining higher serum riba levels is how anemic you become at various doses of ribavirin. Lindahl's work seems to confirm this although I have seen one dissenting paper that this lay person was not impressed with. The trick here is to remember that any change in riba may take up to 2-3 weeks to be reflected in your hemoglobin, therefore increasing riba too much, too soon, can have consequences such as ending up in the ER. I talk from personal experience here :)

-- Jim

[jmjm530]

Conventional wisdom has it that riba is more important early than later in treatment. That said, I've heard a few anecdotal reports from those working in the field of high dose riba (HDV) squashing the virus later in treatment when one was previously detectible. Keep in mind these were *high* doses of ribavirin which may or not be your case given your proposed dose (1600mg)and weight (200lb). Unfortunatly, the most accurate way of ascertaining if you're on HDV is HPLC testing, not readily available in this country. I should also add that I haven't followed up on those cases and have no idea if any of these very late non-detectibles achieved SVR. As others have stated, increasing riba has risks including treatment discontinuation (or even stoppage) and should only be done under the full knowledge of a doctor who is willing to work with you. The Sweeds (Lindahl and Company) seem to have done the most cutting edge work on HDR and looking through any of their recent papers might be helpful.

All the best,

-- Jim

[DoubleDose]

I guess the 'take-away' from all of this is:  Whatever you can handle without crashing and burning might add to your odds of SVR.  With the Ribavirin, I think that the more you can 'warp and damage' the remaining HCV virions during the final months of tx, the better, as far as getting that long term SVR and  avoiding relapse.  If you are able to handle 1600 mg a day, then I would think it is a better dosage.  You may, as Jim stated, run into an abrupt change in RBC levels, and you may need to prepare for intervention with Procrit (if you wish to remain at 1600 mg), or you might just end up reducing back to 1200 mg. a day.  Again, I think it all has to do with what your body can handle, and how much Riba you personally metabolize.  If you can go the full 72, at an increased dosage, I will bet you that you will not relapse.  You are doing a solid protocol, and the Riba is likely to slam the door on any viral relapse.  Once you get past the six months post tx period undetected, you will be home free.

I do think you need to enlist the partnership of your doctor, so that both of you can actively monitor the effects of the increased Ribavirin, and have a gameplan in place if your numbers wobble and then plummet.

Your weight also makes you more likely to handle at least 1400 mg/day, and maybe the 1600 will also be doable.  Remember, Ribavirin is what prevents relapse, and many relapses stem from inadequate dosing.  You may have chosen an instinctively beneficial strategy in what you are doing.  Now you need to determine if it is indeed DOABLE!  Monthly RBC testing would be a minimal requirement.

Good Luck!

DoubleDose

[sfbaygirl]

Thanks for clarifying this. I woke up this morning thinking about how ambiguous the tech we talked to sounded. We were wondering why the two tests looked so differently, so I was unsure about this again this morn. Blame it on this obsessive treater here. Listening to you two experts talk perhaps was not as clear to me as I thought! I am a mere mortal with brain fog. LOL  99% is about as clear as it gets. YEAH! Of course now I want the PCR that goes to <2 from NGI. Thanks again for your help. You are the best!

Perhaps you can explain the differences in the NGI PCR's and the other PCR tests you compared as to accuracy a few years ago. I found that interesting.

[sfbaygirl]

I suppose in Europe you have access to drugs we can't get here in the US. HR is interested in Allina. What do you think about it? I asked HR about telaprevir, as I had never heard of it. This is VX950. Are you going to try a trial? You didn't mention your liver fibrosis. What stage are you now? Do you have time to wait for?

[Skepsis]

Danke fuer die nette Begruessung - wenn es Ihnen recht ist, werde mal gerne ein pers

[Skepsis]

Dear sfbaygirl, just a brief response:

I am momentarily waiting for established new emerging therapies, repeated trials with IFN (in a control arm, eg.) seem just too risky and futile at this moment. (Stage 3 HAI 2 was seen on biopsy before last Tx.)

We definitely have no other, better treatment options here in the European Union as available in the US. Alinia for example is not an approved drug here, is not available in countries of the European Union at all. (Regulation is a more and more unified issue here among our countries.)

I hope we will have some better causal cure within 2 to 3 years. (The main reason for that could be a financial one and a regulatory one: PEG-IFN products maintain their exclusive concession licences only for a limited time interval, which protects them against generics - it will expire for PEGs by 2008/9. After that time generics could be approved on the market causing prices to plummet. This vacuum can than readily be filled  by emerging new products.

The Group of non-responders grows to a substantial market volume by this time, too.

I wish you easy time and good relieve between your doses ...

Skepsis

[Kalio1]

Being kind and polite has nothing to do with trying to win a "popularity contest" at all. I find focusing on someone else's questions and issues rather than my own miserable state of affairs helps me get through tx. It helps to make me feel at least a little useful in a situation where I can not be useful in the ways I usually am. You said below you enter situations calmly and assess the situation but others are panicked, they are newly diagnosed and come here to inform themselves and find someone to say "hey, you are ok, I've been there too, here, sit down and breathe deep, you have found like minded people going through what you are, we can help you."
People handle things in different ways. You are the type that can be calm and assess the situation but many many people when learning they have a life threatening disease do not react that way as is evidenced by the newer posters here. This place is MADE for those that are afraid and uninformed, to expect them to calmly approach such news or chastize them for their forum ineptitude seems to fly in the face of the purpose of the forum. You can ignore those posts or help them learn a calmer approach rather than condemn them for emotionalizing a very emotional situation or you can escalate their panic by adding stress and belittling them for their internet ineptitude or lack of forum etiquette understanding.

I could care less what any individual person or clique thinks of me here, I care what I think of MYSELF. Reaching out to others and offering them info that might help them rather than focusing on myself is beneficial to me. Even if it is repetitive, even if the questions in my view are dumb or silly, it isn't my place to judge the validity of their question. It is my place to try to help, doing that helps me.
Reaching out and helping them to calm down and think rather than criticizing their approach helps them do just that, calm down and think.
The gift is in the giving.

[Valtod]

SFBayGirl, congrats on UND at 32 wk! I was also UND (<5) at 28 wk. Let's we'll both stay that way :-)

[mikesimon]

What? Mike

[mikesimon]

Okay, I will try to respond civilly and honestly at the same time. I have struggled long and hard with this disease so I know very well about panic. I don't recall saying that I entered all situations calmly and the truth is that I don't far too frequently. I have been unnerved time and time again and far from clear headed on too many occasions. I can understand and sympathize with anyone in that condition and I will even try to help if I believe I can be of help. What I do object to is when people say anything that comes into their minds regardless of how inane it might be and expect to receive and do receive replies that pretend to be reasoned and imbue the question with a validity that it surely does not merit. I think this stuff degrades the board not just in that limited thread but the overall tone and nature of the board suffers. I'm sure you recall - and I say that because I seem to remember you answering a lot of them - a guy asking at least 2 question per day about the stupidest subjects that we could ever try to come up with. The toilet bowl comes to mind but there are countless more and there's probably one today. Like "When I was getting my shot ready a bluebird came right up to my window - does that mean I will be SVR - anyone?" Now that might be a slight, and I mean slight exaggeration, but it's not all that far off. And how do we respond? We validate this type of self indulgence and so it goes on and others feel free to do likewise and what is the result of this type of tolerance? We are probably going to get a split board and I for one don't like that idea at all. I'd much prefer the dumb questions along with their answers to a bifurcated board but it appears that we'll have the latter. I sense recently that you really are a kind person and I haven't treated you as nicely as I should have. But, then you probably could have treated me a bit gentler too. I sense we'll both live through our discord and maybe even see the good in each other. I really want you to get well Kalio. I want everyone to but I think we have different approaches to the same goal which is to help this board thrive and improve. I'll try to see your view and mayne you can try to see mine. I've been here for so long that I really don't trust my own opinion at times and perhaps this is one of those times. Good luck.  Mike

[mikesimon]

I've got my tongue firmly clenched between my teeth but I'd love to was elequently and imbue your question with the validity it deserves. You're acting like a nice guy all of a sudden - are you okay? In case I forget allow me to wish you a Merry Christmas and a Happy New Year and and ease to your S-I-L's situation. Mike

[Kalio1]

My approach is to ignore those that are snide, combative or overtly vicious towards me and ignore the posts I find to be pointless. If occasionally I zing one back, oh well, I am not Mother Teresa. You fling **** at someone often enough looking for a response, you might get one. Swallowing 1800mgs of riba a day as I did for a long time I give myself a few free squares for bad remarks I have made on rare occasion, overall I feel I have been more than gracious particularly in light of what has been thrown my way. From the very beginning having someone copy my name and proceed to post horrible negative comments and nothing was done to stop it to endless months of harrassment by another member. It makes it uncomfortable for everyone. That is very destructive on a support forum for sick people who are treating with toxic drug combos, combos that are known to cause depression and anxiety. Im sure a few do enjoy the viciousness towards me,the fact that not one "friend" of this person stepped up on the forum and said that is out of line to the "friend" doing it doesn't go unnoticed. Those that did speak up are not a part of that "circle of friends" and did so at their own peril.
I was gracious to you when I arrived here as I recall. You got miffed  because I pointed out the clique factor amongst some here and I stepped up to defend someone who was being chided and that is where it began. Then because my doctor (and quite a few others poster's doctors) told me a healing liver can cause URQ/liver pain (as can inflammation) that sparked a diatribe of posts with you claiming that was impossible and telling me what an idiot my doctor is and I am for even suggesting it and stating it was flat out not possible. Obviously different doctors feel differently on the subject. I said maybe my docs say that because they don't work with transplant patients and yours do, maybe healing livers feel differently than transplanted ones or something or maybe transplant patients have different scenarios in an effort to point out how the differences of opinion could be explained and you went ballistic behaving as if I was attacking your doctor and impuning his reputation proclaiming it was impossible to have liver pain unless it was from inflammation. In another incident I was cautioning a poster not to be lulled into a sense of security by relatively low AST/ALT because there are people, such as myself, who did NOT have " high enzymes" yet as it turns out I did have substantial liver damage. Those low enzyme readings were deceptive for me ( and can be for doctors also) and that sent you into nasty mode saying I was scaring the woman for no reason and overblowing her husband's situation and giving her a "the sky is falling" answer when in fact my advice was sound. Later you did take responsibility for that and corrected yourself on the enzyme issue but that set your pal off on the warpath, justifying his actions by saying his friends were "being attacked" even though you pointed out to him that you in fact had initiated it.
I know Im a nice person, I don't need you or anyone's stamp of approval but thanks for noticing belatedly. Saying you "recently noticed" I was a nice person after I have been an active poster here for a year and a half seems condescending. Do I get my old timer card now? (that is intended sarcastically)
If I form an alliance with a friend, I try to keep it private so as not to make others feel as if they are "out of the loop" where some here wave their private alliances around like banners of "Im included and you arent" to the point of being ridiculous at times with the back slapping and props given to one another for really bad behavior and the "back in the day when the forum was glorious and the smart people were here posting brilliant questions compared to you morons" attitude dilutes the forum. Airhead questions dilute the place yet flagrant inflammatory and negative posts don't? Not if they are made by friends apparently, it's those new morons that are "diluting" the place, not the entrenched, vicious ones seems to be the attitude.

I know people who have been around this disease a long time have a lot of info to offer, like you. What I see often is them being petty and derogatory and exclusionary and chastizing people for content, claiming "today's forum" is being diluted by it rather being diluted by the chronic, vicious, angry negative posts made. The truly stupid among us don't have the capacity to post more relevently. You can't squeeze blood out of a rock, those people will not "get it" and start posting more appropriately or have a sudden increase in IQ. Some with liver disease have their brains affected by their liver condition, how about assuming they have issues from that affecting their cognitive abilities and that is the reason for the poor questions? Then you can view it from a compassionate place rather than a disdainful one. Some of the bad behavior shown here would get a person excluded immediately in real life. Your "friends" would step up and say WTF are you doing, quit it! It seems some hold sway and are allowed to act outside of the rules with impunity, sadly.
No matter how badly some act here, they gets props from "friends". There is always someone waiting to jump in and defend someone acting like a complete jerk and claiming they are impressed with their wit or sarcasm, gimme a break. Any idiot can sling insults. That isn't witty. I really don't get why adults back each other up and don't call each other on it when they are behaving incredibly badly, I think that dilutes the forum. That damages far more than a moronic or repetitive question.
I think you have a tremendous amount of good to offer here, more than most due to the nature of your experiences with HCV. If you look at it from the perspective the person might be suffering from disease induced thought process issues rather than a "here comes another idiot" perspective might help.
I do appreciate you copping to being wrong on the enzyme issue and taking responsibility for initiating nasty comments. I respect your input on the subject of HCV but obviously your alliances have influenced our interaction.

[mikesimon]

Gee, I don't quite know where to start...but I'll just plunge in.
I vaguely recall your name being used by another. I think this was shortly after my bike wreck and I wasn't really competent to post and in fact a lot of information is lost to me. I did suffer severe head trauma and memories have been lost. I seem to recall Chevy getting PO'd about it but I could be wrong about that. I would like to think that had I been with it when this occured I would have stepped up in your defense. My wreck was in early May 2005 and I didn't get out of the hospital till June 10th and couldn't see right for at least another month or two (double vision so the computer wasn't friendly at all) so if the times coincide with the name stuff that is my defense or excuse or explanation.
I don't recall the clique argument at all. I will say that despite how things appear I am not in any clique. There are some here who I respect and who I care about because of the time I have spent here but I communicate off board with only one person on a regular basis and I won't go along with anyone if I disagree merely out of friendship. I might not come down on someone as strongly because of a relationship but I will never agree or go along because of frienship. I too speak my mind and have my own moral framework which I adhere to strongly and I will disagree with anyone if I feel that way.
You say: "Then because my doctor (and quite a few others poster's doctors) told me a healing liver can cause URQ/liver pain (as can inflammation) that sparked a diatribe of posts with you claiming that was impossible and telling me what an idiot my doctor is and I am for even suggesting it and stating it was flat out not possible."
I do recall this clearly, I think. What I recall is you saying that a person's liver pain while they were on TX was "caused by the liver restructuring itself" and I was rather harsh because I replied "that was ridiculous". Perhaps I could and maybe I should have been gentler but honestly Kalio I have been through so much with my liver and when I see something like that it flies against everything I have ever read or heard and I have seen a lot of good hepatologists. You and NY said your doctors said this and I replied that when I mentioned it to my surgeon he laughed and said "some doctors will say anything". Then you suggested that my surgeon only saw paitients whose liver don't heal and only get worse until they need a transplant and I replied that transplant surgeons don't generally ever see patients prior to transplant and that they do sometimes treat patients whose liver do heal because I am SVR. But, really what I was saying is that transplant surgeons know liver architecture as well or better than the average hepatologist and know what is likely to be causing this kind of pain. And I still think that liver pain is cause by distension of the capsule due to liver swelling and I think you'd be hard pressed to find anything to refute that - if you can I'd love to see it. Does that meant that during treatment the liver pain can't be more noticeable? No, but the pain isn't suggestive of any healing going on and that's what you were telling the member and I thought it was wrong and misleading. And really Kailo, don't you have trouble with even using the term "restructuring"? I believe you've learned a lot since then and that term just doesn't fit with what I know about liver architecture. Reversing fibrosis a stage, or maybe 2, doesn't equal "resturturing" and I try to be exact when I talk about the liver. So I bristled at your statement and maybe I overreacted a bit but from where I sit this stuff is very serious business and I take it that way.
You also said: "Saying you "recently noticed" I was a nice person". I haven't checked but I don't think I said "nice" because I don't use that word that way. I thought I said "kind" but let me check right now...Yes, I did say kind and that is exactly what I meant. You may take offense at the fact that I would say that after so long but it's the way I feel and I cannot lie about that. In truth I haven't believed you to be kind and only recently have I begun to see kindness in you. So what - I am not the arbiter of goodness and if I have have misread you or if you have grown over time it matters not. I have never set out to get you or to embarrass you although it might have looked that way. I'd would be lying if I said that I have liked you.
Regarding the enzyme dispute: Nygirl came on and said the enzymes were pretty high. I think ALT was 80 or 85 and Jim and I said they weren't that high. The poster's husband was seeing a hepatologist and within the HCV world and what were accepted normal lab values at that time the ALT wasn't that high and probably wouldn't be considered that high even today. I didn't want the poster to be any more upset than she was and since her husband was seeing a hepatologist there was no need to impress upon her the enzyme elevation was that significant - she knew it was out of range. When the new recommendation by a noted guy regarding lowering the ALT normal range came to my attention - and it was news - I posted it and took back what I said about the normal ALT range because I take this stuff seriously and want to be as exact and as accurate as I can be.
If I have encouraged bad behavior I apologize - I really don't recall any back slapping but I may have on occasion and that's bad behavior that I am not proud of if I engaged in it.
The bottom line for me Kalio is that I am serious about this subject. I don't get impatient with trivial or insipid posts because I want to demonstrate how smart or smug or condescending I can be. Honestly, I expect more from our members and I am probably unrealistic in believing that they can be influenced to study more or read more or acquaint themselves with protocol and previous threads. I knew nothing about HCV. I thought that when I was transplanted I was cured - that's how much I knew in 2000. I couldn't believe I still had it and had it bad within weeks after transplant. Then I rejected 2 or 3 times or maybe it was HCV and it was misdiagnosed because it is very difficult to distinguish acute rejection from HCV. And then I treated and I treated and I treated and finally reached SVR. Then I wrecked and almost died and set about rehabing a leg I nearly lost. I finally could walk only to encounter this latest problem and HCV was found on biopsy - I couldn't believe my ears when my surgeon said "it's HCV". So I know about panic and I know too well about not knowing what the F is going on. And I feel for anyone facing this stuff. That's the main reason I stay - I know I am everyone's next to worst nightmare and if my being here gives someone hope when they're up against it then I feel my presense is worthwhile.
And that's my story and I'm stuck with it. I'll make an attempt to be civil and trust you will too. Like I said earleir, I believe we want the same thing we just go about it differently.
We'll survive our past and hopefully get along better in the future.
Mike

[mikesimon]

BTW, when I said I didn't think I used "nice" I wasn't getting picky and I really hadn't checked to see at that point. I quote my Father a lot and one time when I was 18 he saw me hanging with a guy & he asked me what I was doing with him. I said "what's wrong with him - he's a nice guy". My Dad said "nice guys are a dime a dozen - find one with character". It turned out he was right about the guy - he tried to double cross me later - and I have never liked that word "nice" since then. Oh yea, when he said that about character I responded "how can you say that, you don't even know the guy" and he said "I know his Father and that's all I need to know about him". My Father was a very wise man - if a little intolerant. I wonder where I get my intolerance.
And maybe things are getting better and not just with us either. Did you notice almost no one took the bait in today's thread intended to bait us? That's the kind of member policing that I think we need more of. Group disapproval/ignoring goes a long way to curbing bad behavior so your take on not speaking up or staying silent wasn't lost on me.
Take care Kalio. Mike

[Kalio1]

You are correct, you used the word kind rather than nice but they are somewhat interchangable to me. I am kind and nice to all until they are unkind or not nice to me. Then I try to ignore them, I am not always successful.

I use the word "restructuring" because that was the word my doctor used. As I recall it was Avidreader and several other posters here who had their doctors use that word in addition to NYG. I don't feel there is anything to "refute" I think it makes sense that people can experience pain in their liver area from the capsule shrinking during the healing phase just as they feel pain in their liver area from the capsule expanding due to inflammation, it is the change itself that hurts.

I have seen restructuring with my own eyes on the Fibroscan. One patient had a "restructuring" liver and you could see the areas that were new and restructured and also the areas that were scarred and hadn't changed structure, the readings reflect this phenomenon. You can see areas where the liver is "new" right next to areas that are still scarred. Our livers do restructure themselves accorrding to the doctors I have consulted with. Healing hurts in all other areas of our bodies as I am sure you are aware considering the amount of healing you have had to do from your traumatic injuries.

Regarding enzyme levels, my doctor has contended all along that enzymes over 25 are "high" in his view regardless of the tests stated "normal" limits, the fact that the paper came out at the conference confirms what he said makes me glad my doctor was saying that long before the paper arrived. Enzymes in the 80's ARE high. Not alarmingly so but high just the same. I understand not wanting to increase fear but my situation has shown me that enzymes in the ranges the woman was inquiring about can be cause for worry due to the nonlinear nature of this virus. My enzymes were nearly identical to the woman inquiring so I wanted her to take it seriously and work to get more info out of the doctor who was indicating it was no big deal and so I encouraged her to have her husband see a Heptologist and get that biopsy. As I recall her doctor had said her hisband didnt need a biopsy. (I think you are confusing what I said with what someone else said that day)In my case it was a big deal and I had substantial liver damage.

I hope we can put a period on this so to speak and move forward with reduced animosity. If memory serves I arrived here in June of 05. I believe you had just had your accident. You do bring hope to many and serve as a living testament to "keep hope alive" I fully agree with your statements above to Ron regarding hope.
I take interest in what you have to say regarding HCV and as I said I respect your level of knowledge on the subject, that doesn't mean we will agree on everything.

[mikesimon]

We're cool as far as I'm concerned. As William Blake said "without conflict there is no progression". And we can disagree on the "restructuring" - call it what you like as long as it's better. I hope your restructuring your @%& off Kalio... and your liver is too. Good Luck. Mike

[mikesimon]

My surgeon stopped my mini TX last Friday so I can't blame that anymore. Monday was my shot day so I don't notice anything yet except a slightly hightened anxiety. He made some significant changes to my immunosuppressive regimen and that has me sitting on the edge of my seat, so to speak. As you know HCV in a "normal" person is tricky enough but in a transplnat recipient the rules get bent somewhat. I don't know if you read where I related that he told me that in transplant recipients who completely eradicate the virus they have seen rejection problems surface. I asked him why that would be and he suggested HCV has an immunosuppressive effect - he had a patient on the table waiting TP so we cut it short and I didn't have an opportunity to pursue this further but I was intrigued and sort of dismayed. At first my goal, as unrealistic as it appeared, was clear - achieve SVR. I believed that SVR = complete eradication. I finally reached SVR and thought I was free. Then my AR dose was reduced and my enzymes began to elevate. I feared rejection. My biopsy revealed HCV and my enzymes were significantly elevated - ALT 350 - and I had a new goal - normalization of enzymes while staying SVR. Now I have a very clear goal - just stay alive with or without HCV and try to keep my enzymes normal and oh yeah, be joyful. That sounds simple. Mike

[Kalio1]

Your Father sounds like a very wise man who didnt suffer fools gladly.

I did notice that people ignored it for the most part and saw it for what it was, glad to see it. Ignoring inappropriate behavior is effective in most cases. If we don't police ourselves we run the risk of having the situation alter to one where we are policed by others ( evidenced by the MH warnings of late)and I don't think anyone would want that.
I hope you are feeling good and the tx isn't causing you sides. Even a low dose can knock you down.

[mikesimon]

I have been thinking about your situation and I am wondering if you  have been diagnosed with nonalcoholic fatty liver disease (NAFLD) or nonalcoholic steatohepatitis (NASH). I cannot remember whether you had persistently normal enzymes or slightly elevated enzymes prior to your diagnosis of cirrhosis. If you get down here and don't mind answering I would appreciate knowing that and anything else I may have missed regarding your treatment - I do know you're extending and relapsed the first time. Mike

[Kalio1]

I have not had a biopsy unfortunately so my info. is limited to US, which showed no fatty liver, the CT scan, which showed cirrhosis, did not mention any fatty liver but did noted an enlarged spleen, and the Fibroscan which gave a reading of 11.1, which is stage three. I had low platelets (65) and was going to treat so a biopsy wasn't deemed necessary or safe. I had red palms and spider nevi all over ( nevi completely resolved) Geno 3 often are told no biopsy is needed.
Geno 3 in some studies show fibrosis progresses more rapidly in some. I was given the virus during a spinal procedure where they were injecting steroids into my back, I was 45. I contracted it past the age of 40, not a good thing and in addition had steroidal spinal injections after a spinal surgery every 3 months for the next 3 years. My doctor misidentified the symptoms of hepatitis as a drug allergy to that steroid, so changed steroids but continued the epidurals religiously because I had a severe enough back injury that my mobility was compromised. I am considered "disabled" by it, but refuse to accept that and also have worked myself back to being able to walk normally and beat ALL the odds given me by the "experts" for a person with no reflex in one leg, but the steroids fed my virus Im afraid. Plus I was a lousy eater and tended to not eat when stressed and also to remain thin. (big mistake) wasn't a big drinker but did drink occasionally until I found out. I was developing a manufacturing biz at the time and extremely busy so thought that was the cause for exhaustion.
My enzymes never tested "high" or out of normal range until I became very sick and had had several bouts of spinal meningitis (they still missed the HCV even then, even though they did two spinal taps, my enzymes within normal again! )followed by several nearly fatal infections. I was in Chicago at the time so saw yet another doc who treated the infection in the hosp.who tipped me off and said I should "check for an underlying reason" for this happening. Bless him.
Soon after that time, due to another radical infection( fron a scratch from a rose thorn) is when I was dx'ed (May 05) they tested at 80 AST, ALT 85. Doctors believed I had leukemia for the first few months. I then saw a new doc due to moving and he caught the hep right away. Thank heavens for new eyes, all the other doctors didnt see it, told me "menopause makes you tired" you are getting older, etc. One guy even said "you didnt look like someone I would test for HCV" when I later told him I had it. Damn those enzymes for not being higher!

One of the problems I think was that I was seeing various docs for various things (specialists) and docs in hospitals due to all the travel but I didnt have a PCP. Maybe if I had it would have been deciphered sooner.

[Kalio1]

My trevails don't hold a candle to yours! I am constantly amazed by all you have been through and survived.
Mine are peanuts in comparison. As a matter of fact, when I get down at times I think of YOU and what you have faced and that helps me keep on track, stay positive and fuel my HOPE. It seems to be working if I can believe that Fibroscan, which I do!
I try to imagine what it would be to go through all those treatments, your liver failing and a transplant after all that THEN have such a tramautic accident to recover from and remind myself how lucky I really am.


with real estate it's location location location

with serious illness it's attitude attitude attitude

[mikesimon]

That's a hard road you've traveled Kalio - real hard. I feel for you. It sure doesn't look like fatty liver disease is something you need to worry about and if you're anything like me you want to eliminate every conceivable thing from the picture. Mike