News Stories

[TnHepGuy_]

<a href="http://www.natap.org/2004/HCV/090704_06.htm">
Strong Association of Hepatitis C Virus (HCV) Infection and Thrombocytopenia (low platelet count)</a>

<a href="http://www.natap.org/2004/HCV/090704_01.htm">The Risk For Sexual Transmission of the Hepatitis C Virus: MSM; Heterosexual</a>

<a href="http://www.hivandhepatitis.com/hep_c/news/2004/090804_c.html">HCV Fact Sheet Updated by US CDC</a>

<a href="http://www.hivandhepatitis.com/hep_c/news/2004/090804_b.html">Long-Term Outcomes for Liver Transplantation Due to Hepatitis C</a>

<a href="http://www.hivandhepatitis.com/hep_c/news/2004/090804_a.html">Vertex Completes Dosing Study of VX-950, an Oral HCV Protease Inhibitor, in Healthy Volunteers</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345208">Treatment Options for Hepatitis C Infection in Children</a>


TnHepGuy



http://www.natap.org/2004/HCV/090704_06.htm

http://www.natap.org/2004/HCV/090704_01.htm

http://www.hivandhepatitis.com/hep_c/news/2004/090804_c.html

http://www.hivandhepatitis.com/hep_c/news/2004/090804_b.html

http://www.hivandhepatitis.com/hep_c/news/2004/090804_a.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345208

[Amerabrit]

Thanks for the responses and links.  Does it all come down to $$$$?  Is it possible drug company researchers know the answers already but revealing the info would compromise or severely damage their profits?  The current tx are so terribly expensive as we know!  I guess that's not a very positive attitude but with everything we're hearing in the news these days  regarding the extreme's some will go to in order to make profits at whatever cost, well, it just makes me wonder!
Thanks again for all the links and best of luck to all finishing tx.  I get to take another shot tonight #32, aren't you jealous donl, Rev88, Chevy, and all??
What do you mean, NO?  .. :)

[Califia]

Grrr...did it again.  I meant post-SVR inflammation.  I guess you figured that out.

[cuteus]

I guess that could apply to almost any genotype?   would  That explain why those with 100%compliance, full dose and tx time, evr,   still relapse/?
It would explain why people with low VL don't clear by wk 12 while high vl do, though. It seems  as complicated and varied as each individual's system.

[TnHepGuy_]

I've seen papers where they look at variants on different genes of the Hep C virus and they have correlated those variant genes to interferon response in differing genotypes.

Just as they discovered that the various genotypes (1,2,3,4,etc.) have differing responses to interferon-based therapy, it appears that as they dig deeper into genetic variations within genotype subtypes they can define which areas on these particular genes are 'interferon-resistant' and which are 'interferon-receptive'.

Hopefully someday soon they'll be able to (affordably) test for these variants and tailor tx accordingly to maximize response rates.


TnHepGuy

[Califia]

Mike, really good news!    How strange and counter-intuitive,  this whole issue of  post-tx inflammation.    But it's obvious that hepatology is on a steep learning curve and as we're its objects of study, it's a stressful experience, to say the least.

The whole question about who responds to treatment and who doesn't is one that will probably only be answered, me thinks, by another thirty years of advances in the field of immunology.   Amerabrit, I couldn't agree more about the need for data collection about compliance.   But there's so much data that should be investigated and isn't.  I've never understood why our immune status is never looked at.  This would go far in explaining who progresses and who doesn't.  It's all about immune response to the pathogen, not the damage caused directly by the pathogen itself.   We're still in the dark ages of research here  but at least it's  finally picking up speed.

[TnHepGuy_]

Here's one study (among many out there now) that suggests that one of the reasons for differing individual responses to tx are genetic differences within the virus itself:

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15306598">Sustained virological response in hepatitis C virus type 1b infected patients is predicted by the number of mutations within the NS5A-ISDR: a meta-analysis focused on geographical differences</a>

(from the study):

"<i>CONCLUSION: These data support the concept that mutant-type ISDR (interferon sensitivity determining region) strains may represent a subtype within genotype 1b with a more favourable response towards IFN therapy.</i>"


TnHepGuy

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15306598

[Amerabrit]

Hi there, hope your're doing well and having a great day.
This particular issue is the single most annoying, aggravating & frustrating aspect of HCV for me to persoanlly come to terms with; can you tell? :)

[cuteus]

On a slight different note, I met someone online who is not treating because her dr and online drs at the hep neighborhood told her she will only have a 30% chance of SVR. They told her that if she had inflammation and treated her chance would be 50%. but since she has NO inflammation her chance is 30. This made no sense to me and it is what she is basing her decission on. Has anybody heard this? HOw can someone with no damage bear a lower chance? ma ybe she understood it incorrectly? I am completely confused, since I also had minimal damage, and wonder about the veracity of those statements.

Amerabrit: remember when someone suggested an online database for all hep c infected? I think that is the only way to collect that data in a questionaire that includes all possible variables, available at a national level.
MY practice stated my info would be used, if ever, in QOL studies. what a waste of data. One of my reasons to tx is so that my info can help others eventually...

[DonL]

I will have my final tx interviews with both drs in a couple of weeks. I will let you know about questionnaires then. My Boston dr. took blood for a study, but hasn't done very much else since.

Along the same lines, I had had really bad insommnia and tossing and turning from the riba for the last three months. I tried Benedryl, but that stopped working so my PA prescribed trazodone (an AD). I've been taking 50 mgs (theraputic AD dose is 150 mg) almost every night to counter the riba "speed." It really helps to sleep. Anyone know about stopping it? I will not take it this weekend, after my last riba on Friday, to test whether I still need it to sleep.

[Amerabrit]

that's encouraging news, all will be well..

[TnHepGuy_]

The <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12360468">first study</a> considers compliance to be anything from 80/80 (i.e. - taking 80% of the total medications over 80% of the total timeframe) up to 100/100 compliance. The <a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/1029/102903_j.html">second study</a> consideres compliance to be anything from 100/80 (i.e. - taking 100% of the total medications over 80% of the total timeframe) up to 100/100 compliance.

I would imagine that the numbers would be even a few percentage points higher for a patient who is 100% compliant in both areas. Also, they don't distinguish between patients who take their medications on a rigorous schedule versus those who may may meet the requirements of compliance listed in the studies, yet take their medications on a more random basis (e.g. - a patient is rx'ed 600mg of riba twice per day for a total of 1,200. Yet this patient takes 1,000 one day - 1,400 the next - 1,200 the next day. And on days where this patient takes 1,200, sometimes 400 is taken in the morning and 800 in the evening. Other times the amounts are reversed. And so on). There are inumerable combinations and possibilities. Yet, according to the definitions of compliance laid out in these studies, this patient and the others with similar changes are fully compliant.

All of this makes me think that if you take the 51% SVR figure that is usually bantered around as the starting figure for geno 1's and theorectcally add full compliance to those in the studies, that number would probably jump up to the 60%+ range. All of this is good news to anyone on these meds since compliance is one of the few things that the patient has greater (though not complete) control over.


TnHepGuy

[mikesimon]

Thanks for that - it's reassuring to say the least. Transplant clinic called me today and said they were not worried. She said that they see these fluctuations post tx and their position is that the virus replicates so quickly that they would expect to see it in the Heptimax if it were the problem. She couldn't rule out the possibility that it was in the liver but didn't feel a biopsy was indicated and felt that labs in a month was fine. This was from my coordinator who is going to run the numbers by the surgeons and hepatologists to see what they think. If they feel differently she'll call me later today. So even though I still have my doubts I'm going to try to just relax and see what my labs are like in a month. Again, I want to thank you and all the others for the wonderful support you've shown me with this situation and with all of the others I've had. Mike

[TnHepGuy_]

Every bit of relevant information I have seen on that subject points to greater success rates for those with less damage (and vice/versa). I'd be extremely interested to see any papers showing the opposite to be true.


For example, here's an article showing that those with lower damage have a higher EVR rate - <a href="http://www.hivandhepatitis.com/2004icr/ddw2004/docs/0607/060904_b.html">Hepatic Fibrosis Influences Early Virological Response Rates in Chronic Hepatitis C</a>. "<i>Patients most likely to achieve an EVR were those with fibrosis stage F0-F1 compared with F2-F4 (62% vs 38%)...</i>". And EVR rates correlate to SVR rates.

Here's one showing higher SVR rates for those with less damage - <a href="http://www.hivandhepatitis.com/2004icr/39easl/documents/0428/042804_hcv_g.html">Insulin Resistance, Fibrosis and Genotype Independently Predict the Sustained Response Rate (SVR) to Therapy with Pegylated Interferon Plus Ribavirin</a>. "<i>SR was achieved in ..... 74.5%(35/47) in mild fibrosis vs. 23.8%(5/21) in advanced fibrosis...</i>".


TnHepGuy



http://www.hivandhepatitis.com/2004icr/ddw2004/docs/0607/060904_b.html

http://www.hivandhepatitis.com/2004icr/39easl/documents/0428/042804_hcv_g.html

[tina-b]

Man your good! Thanks for all the links. You can't get this kind of stuff anywhere else on the net.

[cuteus]

Thanks for the links, this woman said she would look for the studies that support her statement, in the meantime, I looked and can't find anything linking no inflammation with low svr. she got me puzzled.  Her insistance was that NO inflammation gave her the 30-% chance, per her dr.  
thanks again

[Showboat]

Hello....yes, it is frustrating and a puzzle.  I was 100% compliant with each three tx....and I am a 3a..., and my hubby who was a 1a cleared after one tx...and that was three years ago for him..so, who knows????..I have alot of questions to ask when I see my Doc in November..........

[jonihs]

When you are dx., those reports are sent to CDC. They also are notified when you treat and results. Don't know this for a fact, but was told this by the Dr. who dx. me. Joni

[honey1616]

Debbe,,,Hey there,,,Hope this finds you and Greg doing great! I'm so glad you read this thread today as it makes all of us and I'm sure Mike for the most part,,relax,,,Just to know that it happened to someone else. Thanks again!

Mike,,I'm sorry you have been going through the anxiety only again...I can only understand a small portion of probably what you are actually going through as you have so much more time and energy in this disease then most of us!! My prayers are with you and I will be praying for SVR for you!  Take care and try to relax a little...

[Better Angels]

Mike:

When Greg had his 3 month post tx PCR, his CBC and LFT's came back first. When I pulled them off the fax machine my knees nearly buckled because his ALT and AST's had risen from the middle teens into the mid twenties.

Fear and panic interlaced; warp and weft.

But, I saw his WBC's were normal and that gave me something to hold on to. I went looking for comfort and like a miracle I found a question at "The doctor is in" about elevated LFT's post tx. Dr. Douglas Dietrich said that near the end of treatment and post treatment the AST and ALT levels "often" increase. Sure enough, Greg's PCR came back undectable.

Feel better Mike. You're gonna be just fine.

Debbe

[Amerabrit]

Regarding the SVR rates and tx compliance -  If the numbers published are taken only from those in tx studies, then how much faith should we put into that data?  Take all those posting on this board for example; how many upon completion of tx have been asked about tx compliance, lifestyle, etc? Scott, Chevy, Donl, Couch, Sowboat & many others have just completed tx - any tx compliance questionaire's offered you guys by your Drs or drug companies?
I really think SVR rates are higher for those who comply with tx than the numbers published because the data is not being collected?   Surely too, this data is invaluable to those who do not attain SVR?  There are logical reasons as to why some of us clear and others do not and it's just so frustrating to know that so many endure tx, are compliant but still don't clear.  Why didn't Showboat and others clear? Maybe there are patterns in their blood test results, or diet habits or perhaps even compromised efficacy of Interfereon and Riba when other meds are introduced into the body to combat sx?  The answers are out there, they have to be because the data is available, it's just not being collected!?!

Thanks TnHepGuy for the links, as always they are invaluable!

[DownThisRoad]

THANKS Tn !!
~dtr.

[snook_man]

Damn good investigating work..Quick question? In the new CDC sheet, it states that only 1-5% of infected people go on to die..Doesn't that seem alittle low..If only 50% of geno 1's cure, and many keep progressing, wouldn't the numbers be higher? Also, I have seen that transplantations are very risky, and many develop infections and do not make it..Too me, these numbers just seem really low...Of course, it is great news, that Dr's are combating this thing enough to get the numbers down that low, but it has me wondering..

[want2live]

Man, I'm sure glad you stuck around. As always, you are most appreciated here!