News Stories § Other Posts

[TnHepGuy_]

<a href="http://www.hivandhepatitis.com/hep_c/news/2004/051204_e.html">Combination Therapy with Pegylated Interferon and Ribavirin May Benefit Liver Transplant Recipients with Recurrent Hepatitis C</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-47.html#1">Link Between Hepatitis and Heart Disease Found</a>

<a href="http://www.hivandhepatitis.com/hep_c/news/2004/051204_c.html">Interferon Treatment Improves Survival in Chronic HCV Patients by Preventing Liver-related Death</a>

<a href="http://www2.gastrojournal.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=abs&id=as0016508504001015&nav=abs">Epoetin alfa (PROCRIT) maintains ribavirin dose in HCV-infected patients: A prospective, double-blind, randomized controlled study</a>

[mikesimon]

<a href="http://www.medscape.com/viewarticle/474625?src=mp/">Discussion of the future of hep c treatment</a>

[ral]

Thanks for the articles TriHepeguy and Mike. They finally put me on Epogin (Procrit) for RBC's I have already increased 10% in one week so I am hopeful that I can get back some of my wind and energy.

I also asked my Dr to do my PCR 4 wks early (44 wks) and asked him did he think 4 wks would make a difference and he said he did not. How do you guys feel about that? I just want to see if I am clear and if I am I can get a game plan and if I am not it will be maintinance.


I also took a gig on the top of Aspen Mountain an altitude of 12000 feet on June 12 playing drums. I hope I am not setting myself up here but the band leader I am working for knows I have been sick and it is the type of gig if I need a break he said I can take one. What do you guys think? I just want to start living a little again


Thanks as always your freind

GOD BLESS
Bob L

[Honey15637]

I think getting the 44 week testing sounds great!  Like you said you will know early on how you stand and can make a decision based on that if you decide to go longer.  As far as the gig on top of Aspen Mt....Don't you dare miss it! If your friend knows you are not up to par....then you are covered if you need a break.  Like you said....We have to live and enjoy ourselves! Have Fun and Best of Luck!

[mikesimon]

I don't recall your history - when or if you cleared. I seem to think you did but I'm not sure. If you did clear by 12 weeks I don't think the 4 weeks matters. I just don't know what to tell you on this. Mike

[ts2010]

Can you please tell me the web address of the link that you posted titled "Link between Hepatitis and Heart Disease Found"?

I tried to bookmark it and the computer bookmarks Med Help International.  In a few weeks this thread will not be accesible on this website and I would like to show this information to someone.

Thanks,
TS

[cuteus]

I managed to convince the PA, (I thought I was seeing the hepatologist, but I guess they forgot), to extend tx a little.
she agreed to 52 wks and re-evaluate then for longer.  whew!?
mixed feelings as I have to continue taking this **** longer, but the thought of doing over a year again if relapse occurs, is  much worse.
I could not believe all the misinformation she kept arguing with me. She thought I had cleared at 12 wks, which I didn't, she claimed I had the 2log drop based on the numbers from when I started with them, ( she forgot that vl was 4wks into tx). all this, trying to argue the point that the Teravic study could not be applied in my case.  
she talked about # manipulation, rerandomizing of an already randomized group, which changes stats, etc.
  My point to her was that even if that study's findings increased the cure % by one person, is better than what we now have.  She had not read the study yet, but I must say she surprised me by taking the time to read and listen and agreeing to a tentative extension. a good step.  maybe the fact that I mentioned Dr. Dieterich was willing to do it, influenced things a little. On the last visit she mentioned that they had just met with Dr D the Saturday before.  I guess since his hospital is also in the Jewish health network they all know each other.
So to 52 wks I go. yeah!  ....well, sort of....uuuggghhh, more riba.
I think I skipped one week of Procrit, and hematocrit was already at 32.9 from 40.? +  two weeks ago.  this meds are killers of cells.
I guess is Procrit tonite for dinner.
I hope everyone is well, and Lynn2 comes by to tell of her GI appt today.
I hope her GI is competent.

[TnHepGuy_]

ral - glad to hear that the Procrit is being of benefit so soon for you. It certainly can't hurt anything to be tested at week 44 - and, along with your past PCR results, will be good information for decision making re: extended or maintinance tx.

ts2010 - hopefully this will do the trick for you: http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-47.html#1

cuteus - now that is real good news! I know you've been sweating it for some time now. And it goes to show how much a patient needs to be their own advocate - not to mention always being up on the latest info, too. You've witnessed how easy it is for them to drop the ball (often repeatedly) when it comes to individual care.


TnHepGuy

[ral]

Thanks Guys

honey15637 I am sure I am going to play it just a little nervous.

Mike stats are 2.5 log drop in I think it was 4-8 wks just so long ago can't remember. 12 weeks down to 170 then 24 wks was down to 30 did not clear. My Docs argument has always been We don't really know who cleared a few years ago that were not totaly clear at these crucial times because the tests did not go that low.

Thanks for your concern

Bob L

[mikesimon]

Your situation is a tough one. It appears you had an EVR to drop over 2 logs in 4 or 5 weeks which is a very good sign. But for the virus to be present in your plasma, albeit at low levels, at 24 weeks is not encouraging. I think I would want a viral load as soon as possible and if the virus is undetectable I'd seriously consider extending tx. Of course this depends on how you feel, your overall blood work and the approach of your doctor. I'm sure you've read the theory that the length of tx should be evaluated in light of the time one becomes undetectable. I would guess that if you wait till the 48 weeks to test you will be off meds at that point and even if clear you may not have been clear long enough to eradicate the virus. This stuff is just speculative but if you are doing okay I'd take the best shot you have and unless you know where your viral load is now it will be hard to get things arranged in time in the event you and your doctor decide extending tx might be beneficial. I know this is tough on you and I wish you the best. Mike

[TnHepGuy_]

The best studies I know of out there to make your case for extended tx are:

<a href="http://www.natap.org/2004/EASL/easl_06.htm">18 Months Therapy (Pegasys+Ribavirin): study found relapse rate reduced by 70%; viral response rate in genotype 1 increased by 50%</a>

<a href="http://www1.elsevier.com/gej-ng/10/26/38/99/49/43/abstract.html">Reduction of relapse rates by 18-month treatment in chronic hepatitis C. A Benelux randomized trial in 300 patients</a> - (though non-pegylated interferon was used in this study).

<a href="http://www.medscape.com/viewarticle/466007?">Low Daily Dosage of Interferon for 1 Year After HCV-Related End-Therapy Response. A Randomized-Controlled Study</a> - (daily interferon and no ribavirin was used for extenders in this study) (also, you'll need to sign up at Medscape to view this one).

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14999598">A 48-week duration of therapy with pegylated interferon alpha 2b plus ribavirin may be too short to maximize long-term response among patients infected with genotype-1 hepatitis C virus</a>


The last study (Drusano) theorizes that geno 1's need to stay completely undetectable for 32 weeks to acheive an 80% chance at SVR and for 36 weeks to acheive a 90% chance. It also states that the average time for geno 1's to reach viral clearance takes 30.4 weeks of tx. (I had never heard that before and wrote to Drusano to find out where the 30.4 number comes from - I haven't heard back anything, though).


You weren't clear at week 24, yet still were responding. That might be related to so-called 'interferon sensitivity' - whereby some patients tend to respond at a slower rate over time - but are responders none-the-less. If you come up clear on your 44 week PCR, that leaves you with a potential area of 20 weeks (somewhere between week 24 and week 44) where you did clear - a rather long interval.

If you were to take, say, week 36 as an educated guess on when you became clear, and then add Drusano's figure of 36 weeks undetecable to reach 90% SVR - you would be looking at 72 total weeks of tx.

If your 44 week PCR shows you to be undetectable, you may want to seriously consider extending out to 18 months.


TnHepGuy

[cuteus]

I just printed that last study to show her in 4 wks.  This one was not re rerandomized, which was most of her argument of the Teravic study.the stats changed when the group was rerandomized, it also included all genotypes, not only G1.  I asked her if the 48 wk marker was based on med toxicity more that actual effective tx. she said it was probably both. There are no G1 specific studies, and none seem to be planned.
She also forgot(and I did too) that she had lowered my riba to 800mg for over two months before I reminded her to increase it.  That, and the fact that I forgot the riba so much in the begining might have hinder effectiveness.    TY for posting this, after 3 tries....lol. relentless and persistent.  TY again

PS how is your not so poor woman?  she should post more, she is very articulate and a gifted writer.  say hi for me.

[Honey15637]

Congratulations...I just read the good news and know you are thinking...how good could that be?? LOL  But I really feel...that we only want to do this once and if that means extensions...Well then do it!  Hope you are feeling good lately!

[ral]

Thank you again and again you guys are such a big help to me I can't thank all of you enough. You know we are fighting for custody of our grandson, I run a business with about 25-30 people, plus dealing with tx so it is really hard for me to do this research. What can I say but thank one more time my deepest thanks.

Mike/Triguy

That is what I figured extend as along as I and my family can make that is, if I am clear . But the tell telling factor is whether or not I am clear or not. I will know in about another week. I will keep you all posted on my results. As always the best of luck to all you on this rather tough journey..

GOD BLESS
Your friend

Bob L