Medical Forum / Diseases and Disorders / Hepatitis / March 2007
first post here...
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Sick Boy - 15 Mar 2007 05:17 GMT Hi all,
I've read some of the threads here, and think it's great that there's a group like this one.
I have been hepC+ since about 2000, type 3a, and my AST/ALT are normally around 100/200, respectively. I'll be 30 years old this year, and haven't really seriously considered treatment because I heard a lot of bad things about its side effects. I haven't checked my viral load in a few years, and only did it twice--the last time it was somewhere around 400,000...I just found it frustrating to see the numbers increase, and pointless--since I was dead set on not having the treatment. For same reason, I've never had a liver biopsy.
At this point, I am actually starting to wonder about it, but my two major fears are that the treatment will fail, and the side effects (especially since I'm prone to depressive moods). There's heaps of info about HepC, but I'm really not sure if I'm willing to go through with this, despite the uncertainty of the outcome. I used to think that, well, symptoms of HepC like fatigue, joint pain, etc., don't appear until 15-20 years after being infected...it seemed so far away, but now it's been almost 7 years already since I got infected.
When I was young, I didn't really give much thought about what would happen in 15 years, and whether any possible benefits would be worth the cons of the interferon or combination treatment. I've read some really f.cking horror stories, as well as success ones. I'm just really undecided here, and I'm not really sure what I expect from posting this...
I understand that most people have had or are having the pharmaceutical treatment here, but any opinions about whether it's worth whatever symptoms HepC causes later on in life? I guess there are people who experience no symptoms at all, for decades, and have no need to go through the tx. Also, what about "alternative" medicine--specifically, the Chinese herbs? At one point, I was seeing this Chinese naturopath who was making some mixture of powdered herbs for me, but I have no idea what was in there...my liver enzymes slightly went down, but I'm not sure if it's because of that. I only get my blood drawn for the enzymes about twice a year. Also, I have a really shitty medical coverage (Medicaid plus AmeriChoice), and don't know how to find a doctor (GI specialist? Hepatologist?) in NYC area who I could trust to make the best informed decisions. Plus, there's stigma about HCV carriers, and I'm concerned about having to deal with that, as well, when seeking treatment.
Well, I'll shut up for now, but if anyone has any suggestions, similar experiences, thoughts, ideas, doubts...anything to say to me, I'd be glad to hear. I'm under impression that current state of medicine isn't really equipped to deal with the HCV problem, with an uncertain outcome and a harsh treatment, and I'm also wondering if there are any radically different treatments that are more effective and maybe more forgiving being researched. I'd rather wait (I feel fine now), but I'm not sure if waiting would make treating my HepC more difficult down the line. I'm sorry if I'm asking questions that have been answered already, but what's the opinion on when is best to do the conventional Tx, if one decides to do so?
Thank you for your patience if you've read this far, SB
 Signature Sick Boy
greyhackles - 15 Mar 2007 08:04 GMT >Hi all, > [quoted text clipped - 56 lines] >Thank you for your patience if you've read this far, >SB Hello, SB. And welcome to our little corner of usenet.
Here are some (well, many ;-) of my thoughts regarding your situation:
- genotype 3's have a high success rate with the current gold standard therapy regimen of pegylated interferon and Ribavirin.
- genotype 3's (usually) only have to do 24 weeks of therapy to achieve success - referred to here as "sustained viral response" or SVR.
- although biopsy can be helpful in knocking folks off their own mental fences, it isn't necessary for genotype 3's - and the reason is the odds of success are very much in your favor.
- some folks simply breeze through therapy; for the most part the horror stories are with folks that have genotype 1 or 4, and who have to do 48 weeks on therapy, with markedly lower chance of success. If someone were to describe treatment for g1/g4 as a crap shoot, I'd be hard pressed to argue, even though my treatment (g1b) was successful.
- damage accumulates with time, and not necessarily in a linear fashion.
- one cannot predict the level of liver damage from LFTs or viral load; further one cannot predict what other damage/deleterious affects may crop up from chronic HCV infection. We already know it can cause diabetes; we already know it can damage the renal system; we already know it can cause other problems that degrade the quality of life; and it is quite likely that other effects of having an immune system constantly under siege will eventually be understood by the medical community.
- you are basically correct that in general the medical community is "challenged by HCV". Most doctors are frankly clueless about the disease and the treatment, but with some help from this group - quite a few are in your general vicinity - you may get pointed to a recommended specialist that actually knows more than we do :-) which would be a very good thing indeed.
- if you are predisposed to depression, that can be concurrently treated during therapy. In fact the odds are a good therapist will recommend you go on anti-depressants a few weeks in advance of initiating anti-viral therapy.
- the two major pharmaceutical companies that developed the current treatment regimens have programs to assist with the cost of the treatment drugs.
- the longer you wait the less likely of achieving SVR
- there are many new anti-HCV drugs currently in development, but to this point, even the current "great hope", Vertex Pharmaceuticals VX-950 (aka "telapravir") is a couple of years from being generally available - and as time progresses there is the realization that it isn't going to be a knock-out drug after all - at least, not as a monotherapy agent. In fact this drug is being tested (Phase 2 tests) as a third agent with *both* pegylated interferon and Ribavirin, so the prospective patient gets all of the sides of the current treatment *plus* the side effects of VX-950, with the perceived benefit of a highly rate of cure. While we're all very interested in the progress of VX-950, it would not be prudent to assume a major change in the treatment paradigm in the near term.
- while it is *possible* some "alternative therapy" might mitigate the rate of damage accumulation, this has not been independently proven to be the case. This would include "traditional" medicines, regardless of origin. The alternative medicine industry is fraught with snake-oil salesmen that can spin a yarn that sounds convincing, but should be avoided like the plague - at the very least until legitimate therapy is attempted.
- at 30 years old, you are *still* quite young - you're still in the prime of life, and far too young to be dead-set on anything regarding your health - other than to take care of business! Heck, son, you're only half my age :-) and if I was your dad I'd be all over you to do the treatment *now*, not later.
Stick around, SB. Ask any question you can think of (even the stupid ones ;-) and the good folks here will help in whatever way they can...
Cheers
/greyhackles
Sick Boy - 16 Mar 2007 02:21 GMT >>Hi all, >> [quoted text clipped - 9 lines] >>numbers increase, and pointless--since I was dead set on not having >>the treatment. For same reason, I've never had a liver biopsy. [snip]
>>Thank you for your patience if you've read this far, >>SB > >Hello, SB. And welcome to our little corner of usenet. > >Here are some (well, many ;-) of my thoughts regarding your situation: [respectfully snipped]
>- at 30 years old, you are *still* quite young - you're still in the prime of >life, and far too young to be dead-set on anything regarding your health - [quoted text clipped - 8 lines] > >/greyhackles Greyhackles, I really appreciate you taking the time to write out such detailed response to my rather vague "shot in the dark", so to speak. What you said greatly encouraged me to seriously consider the Tx. Plus, I now realise I've not been aware, or misinformed, of certain things...like HCV-caused complications you've mentioned that may happen with time. Bloody hell, diabetes and damage to renal system? And here I was hoping I'd only get some fatigue and a little joint pain, in the worst case, as I'd get older (if I avoided cirrhosis).
Thanks you for also mentioning the subject of insurance/patient assistance. I'll certainly do some research about that aspect...what I have now, Medicaid with AmeriChoice, is usually not appealing for doctors who are considered good, and I definitely can't afford to pay for my medical care. Perhaps there's a gold mean, hah!
Also, thanks to Elmo for offering a doctor recommendation. I don't know if it'll come in useful, but I'd appreciate it (let me know if you'd rather email it, and I'll post the address for that).
Cheers again, guys, I'll dig in the archives to see how this group functions, and to avoid asking stupid questions, perhaps <g>. I'll definitely post when I need to ask something, which seems more likely now as I see the point of the Tx. As an example of an inane question, I just wondered, how much difference does the doctor's expertise and experience come into play, since it's pretty much the same two drugs being used? Also, do GI doctors normally treat HCV, or is it an exclusively hepatologists' area? Sorry if this comes across as cringe-inducing, but I only have cursory knowledge of the stuff...thanks. SB
 Signature Sick Boy
greyhackles - 16 Mar 2007 03:17 GMT >>>Hi all, >>> [quoted text clipped - 65 lines] >stuff...thanks. >SB Ok, see, right off the bat, you came up with one of the most important questions you could have asked. You're not very good at inanity ;-)
Yes - and HELL YES - the doctor - and his staff - are key factors for treatment - perhaps more so for G1s and G4s because of the length of their therapy - but still applicable for G2s and G3s. Experience, honesty, ethics and compassion all come into play. If your doctor or the Physician Assistant that is assigned to you are lacking in any one of those, you could take a rougher ride - and perhaps lessens the odds for success.
For example: the paradigm of dose modification in the face of side effects - specifically, the side effects that can be treated successfully. If your blood counts go south, some doctors may opt to reduce your meds, while other doctors will fight the side effect with what is available - for instance, Procrit for Anemia, or Neupogen for crashed White Blood Cells.
The experience to recognize both a problem and the potential solution, the ethical concern to give you all the options available to you, the honesty to rate the cost/benefit of each option (with cost not limited to the financial aspects) and the running odds of success, and the compassion to do *anything* necessary to keep you as physically and mentally healthy as possible as the "team" drives for the prize. Lemme hear a YEEEHAAAAWWW!! :-)
So who can guide your treatment? For the sake of clarity, lets assume you opt to skip the biopsy and go straight to therapy. You've only been infected for 7 years, the *odds* are you have minimal liver damage to this point, and you're a G3, so most of us would nod our head at this one.
I would recommend dealing with at least a GI doc, but preferably a Hepatologist. In either case, you really want to establish the experience level in treating HCV, as I'd take a highly experienced GI doc over a rookie Hepatologist for guiding me through therapy - and assume if things got dicey enough that a Hepatologist would be helpful, pull him/her in as a specialist at that time.
Then the other metrics I outlined are added into the equation. A discompassionate, aloof doc is a huge liability, no matter how many poor bastards he's treated before you. Don't be a victim, dammit! Ask the questions, slow the doc down if that's what it takes and take *your* time with him/her so you never leave the office with a bit of wonder about things left unsaid.
Ok, you got all that? :-)
Cheers
/greyhackles (a minor case of insomnia has been pretty darned productive :-)
elmoemerson@webtv.net - 16 Mar 2007 14:15 GMT <snip> Also, thanks to Elmo for offering a doctor recommendation. I don't know if it'll come in useful, but I'd appreciate it (let me know if you'd rather email it, and I'll post the address for that). SB /////////// You don't need to post your real email addy here. You can write me at this email address. :-) elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 15 Mar 2007 14:51 GMT Welcome to the group! I agree with what Grey just said.....that you ought to go ahead and get treated now, not later. If you're looking for a well qualified professional to treat you, I know someone in that category that has her practice in North Jersey, an hour west of NYC, if you're willing to travel that far. She comes highly recommended. LOL. elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
greyhackles - 15 Mar 2007 15:15 GMT >Welcome to the group! I agree with what Grey just said.....that you >ought to go ahead and get treated now, not later. If you're looking for >a well qualified professional to treat you, I know someone in that >category that has her practice in North Jersey, an hour west of NYC, if >you're willing to travel that far. She comes highly recommended. LOL. >elmo Exactly what I was hoping you'd pitch in, Elmo. Thanks!
/greyhackles
elmoemerson@webtv.net - 15 Mar 2007 15:45 GMT Re: first post here... Group: alt.support.hepatitis-c Date: Thu, Mar 15, 2007, 10:12am From: greyhackles@NOSPAMyahoo.com (greyhackles) Welcome to the group! I agree with what Grey just said.....that you ought to go ahead and get treated now, not later. If you're looking for a well qualified professional to treat you, I know someone in that category that has her practice in North Jersey, an hour west of NYC, if you're willing to travel that far. She comes highly recommended. LOL. elmo ///////// Exactly what I was hoping you'd pitch in, Elmo. Thanks! /greyhackles ////////////// Yep! I don't think the lack of insurance would keep her from seeing Sick Boy....am pretty certain she'll see folk who have little or no money. And if Sick Boy qualifies, he can get his tx meds for free from either Scherring or Roche thru their patient assistance programs. There's no reason why he couldn't get tx if he wants it. But it takes alot of committment to finish tx, once it's begun. It's not for the feint hearted. The six month regimen Sick Boy would be prescribed is easily doable, tho. elmo (but you already knew that, Grey) :-)
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 15 Mar 2007 15:51 GMT Exactly what I was hoping you'd pitch in, Elmo. Thanks! /greyhackles ////////// There's always room on the bus for one more. :-) elmo I'm gonna have the lobster bisque when we hit Beantown.
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
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