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 Just what can ya take to get rid of hep C?

 (... & other Q's about hep C treatment)

 

This page is dedicated to attempting to answer this age-old question.

 


Q.

"If I do decide to do the treatments of shots, will I loose my hair? I have had hair down to my A.. for as long as I can remember, to loose that would be, well, lets just say, I would think even longer about treatment of that sort."

A.

Yea, but it ain’t a lot; nothing like doing chemo for cancer.  But it sure will come out.  Good luck!


Q.

“I'm an X- IV drug user and was diagnosed with Hep C years ago but never followed up on it.

“I've been clean now just over 1 year and am now being told that my viral load levels are at 5,000,000/ALT 16/AST 22/Albumin 4 and genotype 1  also my age is 49... my doctor is pushing me to start the peg-intron & rebetol treatment immediately. I've been reading up on everything I can get my hands on about this condition. My questions are #1 what do I tell people? I don't want them to be afraid of me or see me as being dirty; seeings that most people are ignorant as to what hep c is (I was until researching it). #2 When reading everything it seems to me that I'm not in a high risk catagory with my levels; is it my age that makes it seem neccessary for treatment? AND #3 I understand that everyone is different BUT when they say the side effects of the treatment can be like having the symtoms of flu (which from everything I read is bullsh*t I'm thinking they are alot worse!) are they also sugar coated it when they say they usually only last the first few weeks? And are they worse that kickin dope? Will I loss my hair? What is the statistics on getting sick is it like 9 out of 10 or 5 out of 10 or maybe 2 out of 10? I'm am scared SH#TLESS anything you can tell me would help, please help me I know its ultimately my decision but I can respect your input. Like they say "been there done that......." HELP ME PLEASE!!     Trippe”

A.

Your answers are ...

#1 ... don’t know, don’t care.  Yea there’s stigma out there.  Sorry it’s hard (I’d pat your shoulder if I could reach ya).  For myself, I figure that just like I get to respond to having this disease how I do, so do the people around me.  I find it a pretty cool opportunity to edu-ma-cate folks such as yourself. 

#2 ... Quite frankly, I don’t see ANYTHING in your levels that make treatment “seem necessary.”  Your albumin & liver enzyme levels (ALT/AST) are within normal ranges.  Neither of which effect whether or not treatment will work for you. 

In fact, you have a couple predictors that shoulda told your doc that you don’t have that great of a chance of being successful with treatment.  You’re genotype 1, so you’re part of the majority of heppers in the U.S. who are LESS likely to clear the virus with treatment.* 

Secondly, you have a high viral load.  Anything over 800,000 IU/L is considered “high” and the higher your viral load, the less likely you are to go SVR† (aka, sustained viral response)

A lot of hep docs I’ve spoken with tell me that for folks in recovery – and congrats on your year, by the way – they usually wait till a person’s got a couple years under their belt. 

Finally, it would be pretty handy for ya to make this decision after knowing what your liver biopsy says.  But I can see from your other email, the doc hasn’t done one on ya yet.   ... sheesh!  In that email, you asked if a biopsy’s necessary.  In my humble opinion, it’s necessary to make an informed decision on whether or not to do treatment.

You’re pretty much on target with your #3 question.  Can’t speak from experience about kicking dope, but you are likely to lose some hair.  The only statistics put out about hep C treatment symptoms are done by the pharmas that make the drugs ... the folks that brought ya “mild, flu-like symptoms.”  Need I say more?  Look ... me and EVERYONE I know or ever heard from about it has had some pretty intense symptoms that DO NOT end after the first few weeks, but rather continue to build and get more intense the longer you’re on the drugs. 

Fact is, treatment is hard to go through.  F&ck a bunch of “flu-like symptoms!”  Some of the strongest people I know who’ve done it (including yours truly) has described it as the hardest thing they ever went through.  But the bottom line is that it’s YOUR decision (like it says here).  Sorry kid – we give ya the info, but YOU decide.

So, your doc shouldn’t be pushing you into anything.  If you’re not happy with him or her, then it’s perfectly o.k. to find another one.  Ya know?

Good luck.

Efficacy of PEG-IFN alfa-2b vs. PEG-IFN alfa-2a + ribavirin regimens in treatment-naïve chronic HCV
    patients: A cumulative meta-analysis of retrospective data from 6 clinic sites
. P.L. Almasio, MD, University 
    of Palermo, Palermo, Italy. HCV meta-Analysis Working Group, MetaWorks Inc., Medford, MA. Poster
    presentation. 2005 AASLD.

† Impact of baseline hepatitis C virus (HCV) RNA and genotype on the efficacy of peginterferon alfa-2a (40KD)
    (PEGASYS®) plus ribavirin (COPEGUS®) in patients with compensated cirrhosis/bridging fibrosis
. Patrick
    Marcellin M.D., Hopital Beaujon, Clichy, France. Stuart Roberts M.D., The Alfred Hospital, Melbourne,
    Australia, Alfredo Alberti M.D., Dept. of Clinical & Experimental Medicine, Padova, Italy. Poster
    Presentation. AASLD 2005.


Q.

"what impact will smoking have on my treatment? How about pot too?

Keeper"

A.

Howdy Keeper.

Ya know, I didn’t find any data on tobacco use and treatment.  Conventional wisdom tells us that smoking can slow down the healing process.  So, on this one I have to say ... I just don’t know.

Now pot’s a bit of a different story.  First let me say that we here at the Straightup wouldn’t advocate, suggest or advise anyone to engage in any illegal activity.  With that said (and now that our attorney’s happy), there is data that shows that medicinal marijuana use can help people to make it through the whole treatment regimen.  Got a whole news page on it (here).  Good luck!


Q.

"Hi my name is Re

“can any one give me any advise on how to keep myweight on when taking hep c medication."

A.

Well, I can tell ya what worked for me.  That treatment’s pretty hideous, and can sure zap your appetite. 

What I did when I was on it, was eat a lot of my favorite kinds of ice cream.  Got my blender running, and made smoothies out of fruit, yogurt, juice, a splash of milk and some of that muscle-building protein powder.  I made sure not to get the diet kind of protein powder, but rather, the high-calorie kind.  It also helped to have other people cook for me, cuz when you feel like that, ya just don’t feel like making stuff.

Kinda helped when the appetite was gone, and ya get all those damn sores on your tongue from the treatment.

And while we here at the Straightup don't advocate any particular kind of treatment, or medications, there's some data here to support something else that might be of help in this area.

              Hope it helps ya.  Hang in there.


Q.

" How long will the sores last or do you think I should speak to my doctor"

A.

We’d never tell ya NOT to talk to your doc ... even if – based on what one may tell us – he sounds like a real asshole that doesn’t have your best interest at heart.   But, I digress ....

Depends on the sores.  Treatment for hep C can give ya sores on your tongue – those go away when you’re done with treatment, and they can give ya medicine for em.  So, if this is the case ... YEA!!  Tell your doc.  Just having hep C can give ya tongue sores, too.  ... but not as bad.

If ya got sores anywhere else ... well ... I dunno what to tell ya.  Good luck!

 


Q.

"I have hep c geno 1 and celiac disease I was just wondering about the side affects doing the treatment I just watched my step mom die from hep c and it really opened my eays "so to speak" anyway with both those diseases plus crohns Im very very tierd ALL the time and thing I can do about that  genice"

A.

Hi Genice,

I'm real sorry that happened to your mom.  That really sucks.  But, I don’t know what to tell ya about being tired.  Fatigue sorta comes with the program here ... ya know?  This is especially true if ya have Celiac disease, cuz it’s an autoimmune disorder – meaning it over taxes your immune system so much that it doesn’t work so well.  It sucks, but sometimes the best we can do is take care of ourselves (we got a page in the works with some suggestions on how to do that, by the way).  But you asked about celiacs and hep C treatment.

Well, of the studies I found on celiacs & hep C, it looks like, even though both are immune disorders, there’s no association between the two.  In other words, one doesn’t cause the other.*  But some docs out there disagree, and believe that celiac does come from hep C.**  Now ... with that said ....  

I did find some studies that showed that hep C treatment could actually cause celiacs,† like it can cause other autoimmune disorders, like autoimmune hepatitis.   

We hope this is helpful for you in making your decision on whether or not to do treatment, Genice ... cuz it is your decision (like it says here).  Good luck!

Celiac disease in patients with HCV Genotype 1A. Abdul Nadir M.D., David H. Van Thiel M.D.  Good
      Samaritan Regional Medical Center, Phoenix, AZ, USA
. Loyola University Medical Center, Maywood,
      Illinois, USA.

** Celiac sprue: another autoimmune syndrome associated with hepatitis C. KD Fine, MD. Am J
       Gastroenterol. 2001 Jan; 96(1):138-45.

†  Celiac disease onset after pegylated interferon and ribavirin treatment of chronic hepatitis C. Elson V.
      Martins Jr. MD; Ana K. Gaburri MD. Division of Internal Medicine, Gastroenterology and Hepatology
      Section, Faculdade de Ciências Médicas, Universidade Metropolitana de Santos, Santos, SP, Brazil

†  Onset of coeliac disease during treatment with interferon for chronic hepatitis C. Giovanni Cammaroti,
      MD. The Lancet 2000; 356:1494-1495

†  Silent celiac disease in chronic hepatitis C: impact of interferon treatment on the disease onset and clinical
      outcome
. E. Durante-Mangoni, MD. Divisions of Internal Medicine and Hepatology, Second University
      of Naples Medical School, Napoli, Italy.


Q.

"Hi, I'm doing the pegasys and copegus treatment for type 1 hep c. I'm also going to a acupuncturist. The acupuncturist has given me 2 herb to take for anemia and stomach problems. The 1st is Marrow plus by health concerns and the 2nd is tea pills.

"The question is, will this work counter to my therapy or have adverse effect on my liver?

         "Thanks for your time, Phil McReynolds"

A.

Phil, I gotta just tell ya ...  I don’t know.  I looked up this marrow plus stuff, and it led to a couple sites that were hugely light on the scientific data – like, there was none – but heavy on selling their books, pills & health seminars. 

But, see ... we’re not into talking out of our asses here.  Nor do we take kindly to f---ing idiots trying to use a biker site to advertise their bullshit.  We rely on experts: the experience of those living with hep C, as well as scientists & other healthcare pro’s who’ve dedicated their careers to finding a cure.  Since we don’t have, or rely on ads here, the Straightup is, we can only offer you our opinion. 

Still – that’s not to discount non-western medicine practices.  It’s how I manage my own hep C ... and for those of us with no health insurance, it’s all we can do.  We’re just real picky on how we answer questions around here.

So, since you’re entitled to it ... in my humble opinion, it doesn’t sound like it’d hurt.  Hell, sounds like it might even help ya get through all the riba-caused anemia, given that the word marrow’s in the name.  Bone marrow produces red blood cells – that we need to not get anemic.  The thing is, however, the kind of anemia caused by ribavirin doesn’t hurt bone marrow ... so, it doesn't interfere with the production of red blood cells ... just kills ‘em.  So, I gotta speculate that it’d be important to monitor one’s labs real close, cuz too many rbc’s can’t be a good thing either. 

But whaddo I know.  I’m no doctor (like it says here).  Good luck...

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Q.

"Dear Biker I share your passion.  I read an article on the WEB yesterday that said you should not take Milk Thistle while on Peg because it interferes with the Peg ability to Kill, Kill, KILL.  Is this true.

"SHP"

A.

I’m not familiar with the article, but it kinda sounds like crap to me ... or rather, drug company hype.  I just happen to read a study the other day where docs used silymarin (aka, milk thistle) & vitamins with the peg/riba combo, and it helped.**  Still ... without the article, I’m shootin’ from the hip here.  Can ya send me an URL to it?  Was it online?

(Then later that day SHP sent me the url to the article. -- ed.)

o.k. ... I got the article.  It's from a newsletter from a hep C organization in Australia.  They got the info from the fellas in San Francisco with hcvadvocate.org.  It cites a study by a Dr. Venkataramanan, et al,* who says,

“There is virtually no research on the safety of herbs and supplements co-administered with peginterferon/ribavirin therapy.  Because of this, it is common for patients to abstain from milk thistle and herb use while undergoing antiviral therapy.” 

Now, call me stupid, but that sounds about a few hundred miles from saying milk thistle “interferes with Peg's ability to Kill, Kill, KILL.”   ... ya think?   In all fairness, I can’t help but notice that this article was published in 2000.

The study I’m talkin about was presented in 2005.  They had patients who had “a significant decrease in AST and ALT levels,” and some of their livers got better – in other words, fibrosis actually reversed!  They concluded that the “results suggest that a combination of an antiviral and antioxidant therapy may be beneficial for these patients.”**

Well, SHP, that’s the Straightup.   Take’r easy!

Venkataramanan R, Ramachandran V, Komoroski BJ, et al. Milk thistle, a herbal supplement, decreases
      the activity of CYP3A4 and uridine diphosphoglucuronosyl transferase in human hepatocyte cultures
.
      Drug Metabolism and Disposition 2000;28(11):1270-1273.

**  Antioxidant Treatment for Chronic Hepatitis C After Failure of Interferon – Results of a Phase II
        Randomized, Double-Blind Placebo Controlled Clinical Trial
.  Ezra Gabbay, MD. Hadassah-Hebrew
        University Medical Center, Jerusalem, Israel. Poster presentation. 2005 AASLD.


Q.

“Hi,

“My name is Liz. I was diagnosed with hcv I'm 35 years old and they cannot figure out my genotype it's indeterminable.  I recently tried the Peg-Intron with ribavirin treatment and i had a nasty allergic reaction to it I have a huge scar on my right leg from the treatment where I gave the first shot this has been about 2 months ago.  They took me off that one and put me on pegasys and i had a reaction to that one my whole body itched.  They have determined that I am allergic to the interferon and I'm trying to find out where to go next.  My gastroentorologist has released me from his care saying there is nothing else they can do for me.  Is there anyone that can give me some guidance here.  My liver is already damaged I'm having nasty abdominal pain, experiencing fevers, headaches, get sick real easily and brain fog.  I had a total abdominal hysterectomy in May and removal of endometriosis.  I would appreciate any guidance that you may have.

“Thank you, Liz”

A.

Hi Liz. 

Well, every bit of the literature I looked at said that when a genotype can’t be determined, it’s because the viral load is so low.  Now, maybe it’s just me, but I’d say that’s a good thing.  ... right?   On the flipside, if that’s the case, I gotta say shame on the doc that put you on treatment.  Cuz your body was getting’r done by itself.

If your viral load is that low, then chances are you’re not symptomatic.  But your recent surgery might be effected from trying treatment, cuz it causes a drop in little things in your blood called “absolute neutrophils,” who’s job it is to fight off bacterial infections, and help us to heal.  The pain & fevers you talked about made me think of that.  So, if it was me, I’d go back to the gyno that did the surgery, and have her check for infection.

Other than that, a hysterectomy isn’t going to do much to your liver – except that the hep C-related liver fibrosis kinda takes off in post-menopausal women.*  Something about having estrogen around helps to slow down the rate of liver damage. 

Being allergic to the interferon really does put the cabosh on the whole treatment thing.  However, I’ve heard of doctors using an antihistamine to counteract allergies to ribavirin.  Had your doc tried anything like that?  ... or maybe it doesn’t matter, cuz it kinda sounds like he’s fired ya as a patient.  But in my opinion, a doc that won’t see ya if he can’t give ya interferon is no big loss.  I say “good riddens!”  There’s plenty of good, ethical, respectful liver docs out there – ones that would be just fine having you as a patient, even without doing treatment. 

V Di Martino, MD. Progression of liver fibrosis in women infected with hepatitis C: Long-term benefit
      of estrogen exposure
. Hepatology 40(6): 1426-1433. December 2004. 


Q.

“Greetings, friends...

“I have a couple of questions.

“I am doing the treatment for Hep C right now.  I am in month six of twelve.

“I am not sure how it works elsewhere, but here in Canada you get screened for levels of virus in system every four months during treatment.  I just got the first 4 month result.  I am non-reactive!  That means if I went for a Hep C test it would come back negative. 

“What does it all mean?  Is this common?  From what I understand, most people do not get non-reactive "status" until (if ever) nearly completing treatment.  Is this a kiss?  Or is it too soon to tell?  I want to get excited, but I don't want to fuck myself up if I am being premature.  Any thoughts or info would be much appreciated.  Cheers”

A.

Is it a bird? ... is it a plane?  No!  ... it’s SUPER RESPONDER!!!

Well, congratulations!!!  Here in the U.S. we call being “non-reactive” at 4 months, one hell of an EVR – or Early Virologic Response (like it says here) – and liver docs would call ya a super responder.  Meaning that gives ya a pretty good indication that you’ll stay that way.  Super responders typically show a 2 log drop in viral load at week two, and by week 24 have gone viral negative – or as you put it – “non-reactive.”*  

But then there are some folks who’s immune system – while just short of being able to get rid of the hep C itself – responds really, really well to Peg & Riba.  Nonetheless, I’d say it’s not only a kiss, but ya got a good chance for the prom dress to hit the floor, if ya know what I mean ....

Baseline neutralizing responses predict the virological response to pegylated intereron alpha-ribavirin
     comination therapy
. Paul-Louis Woerther, M.D. Universite Paris, Creteil, France. Poster
     presentation. 2005 AASLD.

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Q.

“Hi
“My name is Christine and my husband has been diagnosed with end stage liver cirhosis due to hep c. He lived in Spain in the mid eighties for two years. He used to donate blood where we think he probably contracted the disease. He has been on interferon and ribavarin for 6 weeks but it dosent look like its working. His platelets are minus thirty, white cells very low and heamoglobin is under 10 for which he is just about to start injections to make him feel a bit better. He is genotype 1a which I believe is one of the hardest to treat. What happens if the treatment dosent work? Can anyone offer me any advice please.”

A.

Hi Christine. 

Sounds like you guys are going through a rough time.  Interferon’s like that.  Sorry to hear it, but glad you found us.

I wonder what you’re referring to when you say it isn’t working.  Sounds like your ol’ man’s blood counts are going through the ringer – that’s pretty typical.  Ironically, the more havoc the stuff wreaks on us, the better it’s working.  I guess I would need to know how the treatment’s effecting his viral load, to determine whether it was working or not.  About this time, you’d wanna see a 2 log drop (explained here).

If it doesn’t work, then that just means that your man’s in the great majority of us genotype 1’s with hep C in the U.S.  But it doesn’t necessarily mean anything bad.  You might wanna check out our Been There, Done That page to read about some new drugs on the horizon.  Given his cirrhosis, they may have more promise for him than just the standard peg & riba combo. It also might be of some comfort to read through other people's Q & A's; particularly the hep C & cirrhosis symptoms Q & A.  For sure, folks ... you're not alone.   Good luck to you both! 


Q.

".... Please help,

    “I was DX Dec 2005. I had a Biopsy done and I have Hep C. He, the Liver Specialist was going to start treatment in March 2006. I had to quit my job, and start going to the VA. They said my viral count was low and I didn't need treated. When I was going to be treated by the Liver Specialist my viral count was only 24,000 Thousand. They said when they did blood work that is was ubder 6,000 Thousand, and I did not need treated. I am Gen type 1a. I have heard some say Viral load is NOT important and I should be treated anyway, and that the VA just doesn't want to waste the money. Someone PLEASE answer me. I have been outta work since March 2006, and been denied Disibility for the second time, so I'm filing for a third time.

                       “Thank You,

                              “Dave”

A.

Sounds like your viral load is real low, and yea, while you’re probably in pretty good shape, it could also be the best time you could do the treatment – if that’s what you want to do – cuz a low viral load ups your chances of beating the hep C.   ... specially with geno 1. 

But even another liver doc should be willing to treat ya, cuz there’s a high probability of success with ya.  I can only think of one exception ... and that would be if ya have one of the other factors for not doing treatment.  Like if you still drink alcohol, for example.  That’d be like trying to bail out a sinking boat with a strainer.  Ya know? 

On the other hand, with that low of a viral load, it very well could be that your own immune system is beating the hep C.  If that’s the case, doing Peg & riba would screw that all up.  So, you’d do better to hold off for now. 

I’m kinda shootin’ in the dark here, but I hope this is helpful. 

Take’r easy!


Q.why ... thank you for saying so.

"Hey your website is amazing. I go to several different Hep C sites and this one is (by far) my favorite. I don’t ID as a biker, per se, but definitely ‘alternative lifestyle’ and ‘radical anti-establishment.’  Been a weirdo since the 60’s. (grin)

“Anyway – here’s my question: Where would you suggest I find out the best way to take glutathione or NAC – I am reading that this is an important supplement, but I can’t seem to find a good source….

“Appreciate any guidance you can provide.

“Barbara"

A.

We don’t get into the whole supplement thing here, but where I go to for info about supplements, is Dr. Andrew Weil’s site.  He’s an M.D., who really embraces a wholistic approach.  ... he’s at www.drweil.com. Good luck!

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Q.

"HI Just stopped in and really enjoy this site THANKS.....been to alot lately!!!!!   Anyways,  I have Hep C Genotype 2 and cirrhossis of the liver.....done treatment and it did nothing.....now I am experienceing bloating.....fatigue...weakness.....headaches...u name it i got it...  I am 36 years old and i can't let my brain go foggy ya know.....I played and now I am paying the price....everyone learns from their mistakes  i really believe that one!!!   Is there a treament that I can do a different one other than the Rib and peg crap i did?   Being geno 2 i haven't been able to find anything out.   I go back to the doctor in 2 weeks my specialist!!!   YEAH!!!!

thanks so much for ur time

Shel"

A.

Yup ... sure is.  You can read about some of the upcoming possibilities here.  Then decide what you wanna do ... cuz the decision is yours (like it says here).  You & your liver doc should be able to come up with a plan together.  Best of luck to ya!


Q.

"Hi!  I have had Hep C for 8 years.  I am at stage 1-2 and grade 2.  My ALT and AST are normal at 20 and 25.  My viral load is at about 2 million.  What should I do?  My strain is 1B- the worst.  But I am 38 and heard I have good chances to beat this if I am healthy.  I live pretty asymptomatic.  What would you do?  Would you treat?

Thanks for helping.

Diana..."

A.

Hi there Diana.

It sounds like you’re pretty normal for someone with your hep stats there.  In fact, sounds like you’re in pretty good shape.  Yea ... I suppose ... genotype 1b could be considered the worst ....  Us 1a’s & b’s are the hardest to cure.  What’s also true, is that 75% of people with hep C in the U.S. are genotype 1*, so don’t feel like the lone ranger here.

So, you’re considering whether or not to do treatment ... eh?  Well, your age is to your advantage ... so is your relative healthiness.  So, that’s going for ya, to be sure.  There’s a lot of folks who’ve slayed this dragon (like it says here & here).

You also rightly point out that you’re pretty asymptomatic.  What’s also true is that the treatment’s a helluva lot worse than the disease ... so it’s pretty tough even for people who do have symptoms.  So it can be kind of a shocker to people who don’t have ‘em.  In fact, most people who have hep C opt to not do the current treatment.†  To add a bunch more pro’s & con’s to the mix, I’d suggest reading this entire page.   Ya might wanna check out the treatment decision page, too (here)

Given your age, ya also might wanna consider holding off till the protease get here.  That’s just a couple more years or so (like it says here).

So, what should you do?  How the hell do I know?  We’re of the philosophy to ...

But, you’re doing the right thing by educating yourself, Diana.  Armed with as much info as possible, weighing the pro’s & con’s, is exactly the right thing to do.  And either way you go, we support ya.  Let us know what you decide.

Take’r easy!

Predicted outcomes in patients with persistently ‘normal’ ALT levels and HCV genotype 1 treated with
      peginterferon alfa-2a plus ribavirin 1000/1200 mg/day for 48 weeks
. Stefan Zeuzem M.D., Saarland
      University Hospital, Homburg, Germany. Abstract presentation. AASLD 2005.

†  Expectant management of chronic hepatitis C infection – the patient perspective. Omar Khokhar, MD.
      University of Illinois College of Medicine, Peoria, IL. Poster presentation. 2005 AASLD.

 


Q.

"Hi all, if you get rid of Hep C through the combination therapy, is it really gone for good?"

A.

Yep.  It really is.  As long as ya don’t catch it again ... (like it says here).  And as long as the tests that measured the virus during treatment were sensitive enough.*  You can ask your hep doc which tests were used. 

But when ya clear the virus from hep C treatment, ya don’t get an antibody that protects ya forever, like getting the mumps, chicken pox, or even like those who clear it on their own.† 

Good question.  Thanks for asking it.

Detection of minimal residual hepatitis C viremia at treatment week 12 is associated with a high 
     probability of relapse
. Alexandra Bergk, M.D., Medical school of Berlin, Dept. of Gastroenterology,
     Berlin, Germany. Abstract presentation. AASLD 2005.

†  Does Treatment-Induced Recovery from Hepatitis C Result in the Same Immunological Memory as
     Spontaneous Recovery?
Christina Weiler-Normann, MD, Liver Diseases Branch, NIDDK, NIH,
     Bethesda, MD. Abstract presentation. 2005 AASLD.

 


Q.

"Hi my name is Dan.  I have chronic Hep c and ive had it since 89 got it thow blood during a operation.  Ive went thow the pegotron teatments and ive cleard the virous. Its been 17 months now and i still feel like a truck hit me yesterday.!  im extreamly fatiged. Joint and mussle pain etc. {sorry not a good speller}.  Just feel like shit.  Why arn I not gettin better i was a stage 1 and 10 yrs ago i had a biopsy they said i had fibrosis. I was really sic just befor the treatment Hep all of the sudden got worse just  before treatment and hasnt gone away do u know if the liver regenerats after treatment or could it get worse even after youve cleard the virous. Sic of bieing sic. Dan."

A.

I hear ya about being sick of being sick, Dan.  Sometimes, ya just wanna feel better.  Fortunately some days are better than others ... eh?  You asked about whether treatment regenerates the liver.  Unfortunately it doesn’t.  But there’s some pretty cool research going on with stem cells in this area.*  It’s just kind of a ways off yet.

So, ya cleared the virus, but still have symptoms.  I’m a little unclear as to your 10-year old biopsy results.  You can be stage 1, with fibrosis.  But have ya had one since then?  If not, it’s possible that you may have cirrhosis.  So, despite doing hep C treatment, a cirrhotic liver could still cause ya problems. 

Hmmm...   A couple other things come to mind here.  One is that, there’s a lot of stuff that happens to us when we have HCV that doesn’t have anything to do with our livers,† including diabetes mellitis, kidney problems, heart problems, hypertension, lipid metabolism disorders, musculoskeletal disorders & mixed cryoglobulenemia (try saying that 3 times fast), aka, when your nerves, veins & capillaries get all skinny on ya.  Anywho ... all of those things can really doo-doo on your day.

Another thing – and I hope this isn’t the case – is that hep C treatment can sometimes actually give a person autoimmune hepatitis.  That’s a real bastard.  It requires a special blood test to diagnose.  You can ask your doc to test ya for it.

Then again, it could be something totally unrelated to the hepatitis.  So, ya might wanna get the opinion from a doctor other than your hep doc.  If that opinion doesn’t address the problem, you can sure get a second (or third) opinion, too. 

Course, I’m just shooting in the dark here, Dan.  There could be a whole bunch of other factors going on, like if you’re doing any exercise, or eating healthy, or do ya smoke?  Booze it?  I dunno ... .  But hopefully these are some thoughts to help kick start ya towards a solution. 

Good luck!

Platelet-derivated serotonin mediates liver regeneration. Mickael Lesurtel, MD., Department of
     Digestive Surgery, Paris, France. Abstract Presentation. 2005 AASLD.

Thermoreversible Gelation Polymer Induces the Regeneration of Partially Injured Rat Liver
     Accompanying the stem/progenitor cells derived from bile ducts
. Masaki Nagaya, MD. St. Marianna
     University School of Medicine, Kawasaki, Japan. Abstract Presentation. 2005 AASLD.

†  Comorbidities in Hepatitis C Patients in a United States Medical Claims Database. Karly Louie, Ph.D.,
     GlaxoSmithKline, Greenford, United Kingdom. Abstract Presentation. 2005 AASLD

 


Q.

"As far as I know, I was exposed to HCV in 1978---work-related incident---and HCV was discovered during workup for treating Rheumatoid Arthritis, 2004. Sure, I did the 48-wk misery of ribavirin and peg-interferon; was non-detectable at 24 wks, but back up to 221,800 at two months post-rx. Since then, it seems the virus is replicating every 6 months; I'm now up to 4,000,000+ but don't have much elevation of AST/ALT. How high do the viral load counts get---and is it usual for the virus to get nastily aggressive AFTER the (almost) year of treatments?

I'm glad I found "Straight up"---it's not what I've been getting from the hepatologist.

Keith Dendy
Louisville, MS
(about 30 minutes from Little Sturgis!)"

A.

Well, we’re glad you found us, too.  We appreciate the feedback, man.  Sorry to hear your hep doc wouldn’t tell ya any of this.  Cuz the straight up is, there’s a bunch of ‘em out there who will. 

I’m really sorry to hear the virus came back.  Man, that stinks ... on a couple of levels.  For one, ya went ahead & did that whole damned almost-a-year of treatment, or as you so aptly put it: “the 48-week misery.” 

Secondly, some of the tests out there that count viral load, don’t quite count down far enough.   It only takes the most microscopic, teeny little dribbles of viremia - or put another way, a handful of that 221,800 – to come back as full blown hep C.*  Why?  It’s like this little movie shows (here)

But, hey ... you had a couple questions (oops ... got a little off track here).  One being, how high a viral load goes.  Well, science hasn’t really counted.  Instead, they agreed on a couple of ways of measuring hep C.  never hurts to learn to read your labs.

One’s uses, “copies” per milliliter of blood.  It’s counted in the millions, and looks like this on your lab report: 4 million copies/mL (for example).  The line of what high & low sets at 2 copies/mL

The other one uses “international units.”  It looks like this on your lab report: 221,800 IU/mL (another example).  The line of what high & low is set at 800,00 IU/mL.  So, this example shows a low viral load.

So, while 4 million’s high ... it’s not the death knell, by any stretch.  It’s just buckin’ like funnies in us.  So, even though your doc is monitoring your blood – including viral load – every 6 months, it only makes sense that the numbers are higher.  That’s not gonna change. 

Personally, I quit lookin’ at them numbers a long time ago.  I’d gotten a test that read that my VL was over 100,000,000 IU/mL.  I thought it was a joke.  ... really.  Cuz, he & I have a pretty good relationship, so I figured he was trying to lighten things up.  But, that wasn’t the case.  So, after that, I figure I don’t need that kind of doo-doo in my day that often.  But that’s just me ....     

You also asked about hep C’s aggressive return.  That’s pretty typical when the virus first hits.†   ... even after (almost) a year of treatment.  Chances are, most of us attributed the symptoms to other things when we got it the first time around. 

I’ve heard of that “Little Sturgis.”  Cool beans.  I was actually in that neck of the woods this Spring.  Mighty pretty country ya got here. Take’r easy, and good luck to ya.

Detection of minimal residual hepatitis C viremia at treatment week 12 is associated with a high
     probability of relapse
. Alexandra Bergk, M.D., Medical school of Berlin, Dept. of Gastroenterology,
     Berlin, Germany. Abstract presentation. AASLD 2005.

†  Acute Hepatitis C: Clinical Presentation, Laboratory Findings, and Treatment Outcomes. Rohit
     Loomba, MD, National Institute of Diabetes and Digestive and Kidney Diseases, NIH, Bethesda,
     MD. Abstract Presentation. 2005 AASLD.

TOP O' THE PAGE


Q.

"i was diagnosed with stage 3 liver and stage 3 in the disease i am 4 wks from finishing treartment and virus free what can i exspect out of life now will there be liver regeneration or will i continue to suffer as i do now i am at the point of blowing my brains out if i have to live like this for the rest of my life i am 48 and weigh 107 and look like i am 70 i have lost so much muscle and my penis has shrunk 4&1/2 inches"

A.

Your life WILL get better.  YOU’RE ALMOST DONE WITH TREATMENT.  So, please don’t blow yer brains out ... alright?  I know ... easier said than done.  It’s like ... when you were a kid and made faces and your mom or teacher would tell ya to quit it, or your face would get stuck like that.  ... ya with me?

You won’t get stuck like that.

Listen man.  I can appreciate that you're in a lot of pain.  This disease DOES suck.  I have it, too.  We get worn out easily, and people don't know we're sick, cuz our rotten livers aren't showing.  Plus there's probably more than our lion's share of us, who don't let weakness show.

I may be talking out my ass here, but does any of this sound familiar?

Fact is, too, that the treatment sucks even worse.  It’s not real unusual to lose some muscle mass during this time, but it’s not permanent.  About yer dick, tho ... I couldn’t find a damn bit of research about dick shrinkage.  Now, jumpin’ into cold water, that’s different ....  

Now that we’ve tossed a couple of emails back & forth, I know that you – perhaps more than most – are a survivor.  You’ve come through a lot of things.  Man, you’ve got less than 4 weeks to go on this shit.  ... and you’re kicking it’s ass!  Pardon the cliché, but, hang in there! 

Here’s the deal for ya: when you’re done, I know that a few days later you’re gonna feel different.  After a month or so, you’re gonna feel a helluva lot better ... and if I’m wrong, I’d like ya to let us know.  For that matter, if I’m right, let us know too.  ... alrighty? 

Take’r easy!


Q.

"wassup????

“your site was one of he only things that got me through intefuron. THAT SUCKED!!!!! The only thing i wonder about is that my doc told me that i was "cured" when my levels reached .015. wtf? he went on a 3 month hiatus directly after, and no one has even wanted to monitor my levels since.... i don't have insurance anymore, and i'm really fuckin scared.....what the hell do i do? i know from what i read that i'll never really be "cured". who can i turn to for the truth? SOMEBODY TELL ME STRAIGHT UP..........I CAN HANDLE THE TRUTH!!!!!!  RD"

A.

I’d say your doc sounds like a real dink (this is my own opinion, btw).  If it was me, I’d get a different one.  But if that’s not an option, they still gotta treat ya ... insurance or not.  That’s what all that HIPPA shit’s about.  Straight up. 

But if you’re still doing treatment, you might want to try to contact the company that manufactures whichever flavor of interferon you’re on.  Roche for Pegasys, and Schering for Peg-Intron.  I’m pretty sure we have links to them on the links page (here).

If you’ve completed treatment, congratu-friggin-lations!!!  You could probably just go to a hospital, and order the labs yourself.  A lot of hospitals have where you can go get different blood tests done, like “wellness” labs ... all for a nominal fee, of course.  But you might want to go like 6 months post treatment, and order an hcv quantitative assay.  The lab person there could probably help you out.  If they don’t, you could try another hospital.

Lemme know how ya come out on this, RD ... alrighty?

And thanks for letting us know we played a little part in helping ya through treatment.  i'm humbled (not an easy feat).

Good luck!

TOP O' THE PAGE


Q.

"Im a hepatitis c genotype3a... going for liver biopsy. do not want to take the drugs.. Scared out of my mind of it. Is there anyone out there that can write to me who has this genotype and took the treatment."

 A.

Hi there.  Don’t wanna do the treatment?  Ya don’t have to.  If it were me, I wouldn’t get too freaked over it till I got my biopsy result.  That’d help me make an informed decision. 

Interestingly, we just had a question like this (below yours, so keep reading).  I hope it’s of help to ya.  Take’r easy!

 


Q.

"hi guys, linda from maine here, with a few questions, i dont know the answer to, heres hoping you can, come up with a few answers. i,ve got hep from a bad blood transfussion in 1980 (dam red cross) and now after living with it for 18 years, it seems my alt levels are 170,  i,ve never done  any sort of treatment, sorry, old hippy here, and i,ve tried herbs, and massive amounts of garlic and milk thistle, it seems it worked for the first few years, but now, the docs are saying time for treatment. i,ve been way to scared about this for such along time, they say if your depressed, that you have thoughts of suicide, they say, you,ll loose your hair, they also say if you dont do treatment, i,ll prob die, because people on medicaid, are at the bottom of the new liver list, soooo i,m faced with a huge discission, i,m also a pot smoker, as i have been for 35 years, i absolutely agree with the medical  pot, it  helps settle your stomach so at least you can get something in your guts, with out it comming back out your face, it also helps with sleeping, so yeah,  i,m for it. my question is, after 18 years with it, if i do treatment, what are the real odds of beating it, and what happens if i dont,  will it leave my body worse off than if i did? i know all about hep c, but what i dont know  is, what you feel like, how bad is  treatment,  are u a couch potato for weeks at a time? or will you feel like doing things, you,ve always done? ive got ya logged into my computer now, and will visit regualary, heres hoping you might have some advice for me. 

“thanks for having this site available, ya done good, linda H."

A.

Well, thanks there, Linda from Maine ... that’s real nice of ya to say so. 

First of all, I think it’s just fine that you’ve never done treatment.  It’s sure nothing to be “sorry” about.  Whether you’re an ol’ hippie, or an ol’ biker ... if ya got hep C, then the decision is yours.  We’re real big on that (like it says here)

What the docs said about treatment causing you to lose hair is true; happens to everyone – BUT not as much as people who do chemo for cancer – so you don’t have to shave your head or anything – but for instance, when I did it, some hair would come out in clumps in the shower.  Looked like a small animal laying there.  Then eventually if I just ran my hand through, I’d come out with a handful of hair.  Makes for interesting conversation, though. 

Then you says your docs (... or someone???) told ya you’ll die what a crock!without it, cuz people on medicaid are at the bottom of the list. BULLSHIT!  Transplant docs are constantly working on methods for choosing who gets what liver so that it’s an objective, fair kind of deal.* 

Plus, there’s the option of getting a living donor, if it comes to that point.  I could be wrong – it happens on occasion (ask me spouse) – but it doesn’t sound like you’re even anywhere near that point.  In my opinion that’s a pretty shit way to try and scare ya into doing treatment – especially with all the inhibitor drugs about to come out in the next few years (like it says here)

You also asked what your chances are of clearing it if you did the treatment.  Well, the best guess science can offer depends on what your genotype is, with the current treatments (like it says here).  For instance, if you’re genotype 1, one study showed only 37% of people with high viral load cleared.† 

Your ALTs don’t mean squat.  It would also really help to know how you’re liver’s doing.  Like ... have you had a biopsy? ... or some kind of test to see if you have cirrhosis or not???

Still ... the decision to do treatment is YOURS, Linda from Maine.  I’d really like to encourage you to read our page on making that very important decision (here).  Another decision that’s yours is who you see for a doctor.  If ya want to, you can choose to see one that will respect ya, give ya all the info, & encourage you to make your own health decisions. 

Good luck.

Trends in MELD Score and Transplantation Rates Under the MELD System. Richard Freeman, MD,
     Tufts-New England Medical Center, Boston, MA. . Abstract presentation. 2005 AASLD.

†  Impact of baseline hepatitis C virus (HCV) RNA and genotype on the efficacy of peginterferon alfa-2a
     (40KD) (PEGASYS®) plus ribavirin (COPEGUS®) in patients with compensated cirrhosis/bridging
     fibrosis
. Patrick Marcellin M.D., Hopital Beaujon, Clichy, France. Stuart Roberts M.D., The Alfred
     Hospital, Melbourne, Australia, Alfredo Alberti M.D., Dept. of Clinical & Experimental Medicine,
     Padova, Italy. Poster Presentation. AASLD 2005.


Q.

"I suppose this is a dumb question, but I still want to know.

I got hep c from a transfusion either in 1961 when my son was born, or in 1974 when I had to have another transfusion.

I am too old for transplants (76 years old).

I have already had the interferon garbage in 1992 (I think that's right) and it was a complete failure.

I recently went to a specialist who is darn good. but he said if I tried it again it would cost $6000 and my insurance wouldn't pay for it, and there was less than a 10 percent chance that it would do any good.

Naturally, I have bunches of symptons, but I'm still kicking and I'm not ready to pull the plug yet.

Now--just a wild guess--how long do you think I can stick around?  And does it take a long time to go?  I hate to be a bunch of trouble for my Hottie Husband.

Thanks

Dar"

A.

Well Dar ... I’m sorry, but I just don’t know how long ya got.  We don’t do wild guesses.  On the other hand, getting to 76 years old with hep C’s quite an accomplishment in itself. 

If you’re too old for transplants, then going on pegylated interferon & ribavirin treatment for about a year may not be such a good idea either.  In fact, it doesn’t work as well on older folks, in either getting rid of hep C, or preventing liver cancer,* which is a big point in the whole damn exercise.

You hit the mark when ya called the available treatment in ’92 “garbage.”  Science didn’t know a whole helluva lot about it back then.  Hell ... they were just getting good at actually detecting the virus that year. 

But even today, where the interferon’s new & improved pegylated molecule – which means we only have to take a shot once-a-week, vs. every 3 days – it’s still pretty harsh, will make ya feel like garbage, and only clears under half of us ... ‘specially us genotype 1’s.  Most people living with hep C choose not to be treated.†  Still ... the choice is yours (like it says here).

The upside is that hep C is a real slow-moving disease.  But the rate of deterioration is different for everybody.  How well you take care of yourself is gonna have the biggest impact.  So is your attitude ... and girl, I must say, you’ve got a pretty darned good one.  Your “hottie husband” sounds like a pretty lucky fella. 

Nonetheless, there is one thing I can tell ya for sure.  Talking about life, a friend of mine says, “no one gets outta here alive.”

Negative impact of aging on hepatocarcinogenesis after viral eradication in patients with chronic
      hepatitis C: A long-term observation study of 1,672 patients and an effect of PEG-interferon/ribavirin
      therapy
. Yasuhiro Asahina, MD, Musashino Red Cross Hospital, Tokyo, Japan. Poster
      Presentation. 2005 AASLD.

†  Expectant management of chronic hepatitis C infection – the patient perspective. Omar Khokhar,
     MD, University of Illinois College of Medicine, Peoria, IL. Poster presentation. 2005 AASLD.


Q.

"My viral load was 7.8 ml. in July 06, started peg & rib in nov 06 now my load is 74000, but my Doc said that is not a good SVR. To me it seamed pretty good. Can you give me any input. Hep C 1

“THX DCB."

A.

Sure thing, DCB – glad to help. 

See, at week 12 of hep C treatment, they’ll check your blood to measure how much hep C – if any – is still in you.  At that point, they’re looking for an EVR, which stands for Early Virologic Response.  You’ve officially gotten an EVR when you’re viral load’s dived at least a 2 log drop*; but the best EVR is when zero virus is detected at week 12.    

Now, I’ve always thought that a log was something made out of a tree – but for docs and lab nerds, it’s a unit of measure they use for something as iddy biddy as your hep C virus.    

This is important, because getting an EVR plays a big role in predicting whether or not you’ll go SVR*†, which stands for Sustained Virologic Response (like it says here).  There’s some evidence that if someone has even a little less than 100 IU/mL at week 20, then the treatment probably won’t work.*  ... and it would be a real drag to endure 48 weeks of the shit you’re going through for nothing ... eh?

So, while in one respect, having your viral load go from 7.8 million to 74,000 is quite a leap ... I suspect your doc may be a bit concerned about your chances to go SVR ... unless you have the option – and are able – to stay on the treatment longer.  There’s also the inhibitor family of drugs coming down the pike, that promise to be more effective, with shorter treatment times & are easier to deal with (like it says here).

However it works out, I wish you the best of luck.  Take’r easy.

* Utility of TMA Testing During Antiviral Treatment of Advanced Hepatitis C. Chihiro Morishima
    M.D., University of Washington, Seattle, WA. Abstract presentation. AASLD 2005. 

Detection of minimal residual hepatitis C viremia at treatment week 12 is associated with a
    high probability of relapse
. Alexandra Bergk, M.D., Medical school of Berlin, Dept. of
    Gastroenterology, Berlin, Germany. Abstract presentation. AASLD 2005.


Q.

"If someone isn’t compliant in the treatment, do they need to start over from the beginning?"

A.

Well now ... let’s see.  I guess there’s a lot of factors to consider ... like why someone wasn’t compliant.  For instance, if they quit taking their treatment drugs, because the side effects were too intense, then they might wanna talk with their doctor about adjusting the dosage.  One of the drugs’ dosages – Peg-Intron – is based on a person’s weight.  So if someone lost enough weight, then they oughta take a lower dosage.

But then there’s other side effects, like severe depression, heart problems, lung problems or retinopathy (aka, losing your eyesight), that just draws the line in the sand: you’re done.*†  

But whether someone would need to start from the beginning after ... well, how long?   o.k. ... let’s just say ... a few days?  Naw.  ... a couple months?  Maybe.  In other words, it would depend how long someone had been on it before they stopped.  Because it’s the kind of medication that builds over time.  It would also depend on whether or not someone had gone viral negative or not. Someone oughta be able to talk with their liver doc about it.  Otherwise – and maybe it’s just me, but – I’d say it’s time to get a different doctor.

Good luck to ya.

* Peg-Intron® Medication Guide. 2003 Product Insert.
Pegasys® Medication Guide. 2003 Product Insert.


Q.

" Have you heard of an oral pill of interferon?  I have been taking it for a few months, but have not yet rechecked my alt levels to see if it has any impact.  I do feel better, just thought it was a better alternative then what is available currently.  It is made by a company called Amarillo Biosciences.  They claim that the high doses of interferon currently injected are toxic, that's why you get so sick.  This is an oral pill that is made of human interferon that is dissolved in the mouth.  Just wondered if you have ever heard anything about this.  There are no side effects."

A.

Nope ... never heard of it before.   I checked out Amarillo’s website ... pretty damn interesting.  It inspired a few thoughts – which, of course, you’re entitled to.  So, here’s the straight up.

So they’re waiting to see what your ALTs (aka, liver enzymes) do, eh?  I hate to tell ya this, but any change in your ALT levels, isn’t going to tell ya squat about whether or not this will work on your hep C.  Hell ... there’s a whole bunch of us (including yours truly) walking around with normal liver enzymes and  a high viral load. 

Looks like they’re calling their interferon pill “low-dose oral interferon,” and it’s a pill form of “interferon alpha.”   All this sure rings a bell.  Lemme give ya a little history .... 

Way back when drug makers first got the idea to try interferon on hep C, there was only interferon-alpha.  They used an iddy-biddy molecule to make it, so it had to be injected like 2 or 3 times a week.  In those days, they thought if it brought down ALT levels, then that was success.  They didn’t give a rat’s ass about those of us with normal ALTs, cuz they still thought we were rare, plus, we really would have f—ked up their study data.

Nonetheless, it didn’t work.  People got sicker’n hell, and still had hep C.  Then they added ribavirin, which worked better ... but not great.  So, assuming size mattered, they developed a bigger molecule (called pegylated; hence, Peg-interferon, Pegasys, Peg-Intron ... ya with me?).  Anywho ... it lasted longer, was more effective & ya only had to do it once a week.  So far this is the best shot we have at beating this thing (pun, fully intended).

They are right about the toxicity.  But taking that risk, has cured a little under half of us.  What’s also true, is that if we take interferon long enough (even low doses), it can still be toxic – ‘specially with our shot-to-hell livers.  Still ... the peg-interferon & riba combo is the best thing going ... so far.  But hopefully that’ll change in the next couple of years (like it says here).

As for side effects ... well, that remains to be seen.  Everyone's as different as a fingerprint in that respect.  But your experience lends hope.

Straight up, it’s very cool that taking the pill’s making you feel better.  I don’t know what your situation is, or why you’re trying this.  But if it was me, and I was just curious about what this pill would do to my ALTs, then great.  But if I was expecting to get cured, then I might be in for a helluva disappointment, or free myself up to maybe get in a study or something. 

I’m sure they didn’t make ya any promises, though.  Sounds like they’re just starting to talk to each other about how they might fit into the whole hep-C scheme of things.  With all the new inhibitor drugs in the pipeline, I’d speculate that their interferon pill could fit in pretty damn well.  We’ll keep an eye out.

Good luck, and I hope you’ll let us know how you do.

TOP O' THE PAGE


Q.

" hi somebody?

     i was diagnosed with hep C and put on interferon, about a year ago. i'm controlling most of the side effects, but the depression  is kickin my ass!!!!!!!   any chat rooms i can go and just get a grin? seems like i just go to work....come home....and cry.

                                   please help?

                                                       robin"

A.

robin,

There’s a pretty good support chat for people on treatment on Hepatitis Neighborhood.  You can get there from our links page (here).  Just a heads up: it’s a site run by a specialty pharmacy – so the articles & such on there are likely influenced by business decisions – but the chat room’s a good one. 

But getting back to you ... 
Going through hep C treatment is definitely a marathon; not a sprint.  Feeling like crap everyday for such a long time IS depressing!  But that’s a long way from being clinically depressed.  It’s completely normal to be sick & tired of being sick & tired.  I can’t promise you much, but I can promise you this: you won’t get stuck like that. 

A lot of liver docs will prescribe antidepressants prophylactically (aka, just in case).  Now bear in mind, these are medical professionals who specialize in the liver.  Maybe it’s just me, but-ah ...  the liver is a helluva long way from the brain, and the two organs are not real similar (unlike the asshole & the brain, in some folks we may know ... heh, heh).  Because when you’re not clinically depressed, antidepressants can make you feel depressed ... even suicidal.  ‘Specially when your brain chemistry’s already doing a loop’de loop from the peg-interferon & ribavirin.  These types of drugs should be prescribed & monitored by a psychiatrist.  ... just in case ya decide to go that route.

Hang in there!  ... & thanks for asking the question.  It’s a good one.

  Yours truly, somebody


Q.

" I wrote this to the webmaster, maybe it should be here.

You mentioned lasting side effects from treatment.

This scares me, what lasting side effects are there? The side effects that I hear from those on tx sound terrible enough but lasting sounds worse, especially if you have no symptoms to begin with.

Thanks,

Barbara"

A.

Hi Barbara.

Aside from what you can find on the product inserts of the medications about some pretty heinous conditions that can be caused by treatment – albeit very rarely – like autoimmune hepatitis, retinal damage & heart disease,...

I have talked to people who have never gotten over the leg cramping, or some fatigue, or circulation problems to the hands & feet.  This is all anecdotal.  No studies have been done to substantiate it.  Imagine that ... with much of the research so far being paid for by the pharmaceuticals.  Not to be whining, but that’d be like expecting the U.S. government to admit they gave hep C to all those Vietnam Vets. ... or getting hospitals to admit they’ve spread it from plastics used in procedures.  Besides ... I am one of those stories, so ya can’t convince me otherwise.

What the documentation will tell ya is that treatment can cause “mild flu like symptoms.”  This makes most of us who know better laugh.  But then there’re others for whom that rings true.  The bottom line here is that it effects everyone differently.  One of our dragon slayer story guys did treatment while in law school (here).

Still ... a little fear can’t be all bad.  At least it’s got ya asking the questions.  As I said, it's a good question, because whether or not to do treatment, if that’s what you’re considering, is nothing to be rushed into.    ... as we say here.  

Take care.

TOP O' THE PAGE


Q.

" Glad that your back online.  I tried the ribavirin and pegylated interferon and it was like walking death to me.  I truly believe that a full course of treatment would do me in as platelets and wbc and reds dropped into the basement after only 2 weeks.  In short, they can keep their snake oil as I would rather take my chances with the hep.  I only have a viral load of 300,000 with genotype 2b, so to me it’s a matter of quality of the time I have left.  I intend to die with this disease, but not because of it….

“Thanks and keep up the struggle.  Jerry"

A.

Right on, Jerry.  I’m a strong believer that no treatment at all is an option (like it says here).  Ya know, you have the kind of attitude that helps keep this dragon at bay.  Thanks, man.


Q.

" Any information on the potential new treatments VX950, NM283 and Actilon?  What are the potential side effects of these if known?  Are there any that are independent and not requiring concurrent treatment with Interferon & Ribavirin?"

A.

I’m glad you asked.  Well for one thing, they're getting names, as they move down the process of FDA approval.  I just updated the table on the Been There, Done That – What’s Next page.  Check it out … here.


Q.

"I did both treatments of interferon, question is, I was told by my friend that I was injecting antifreeze.  Is interferon made with antifreeze? 

“You might want to post this but anyone who is on the interferon treatment and or rebetrol treatment with interferon, the makers of the drug have a support group which is awesome.  And they will tell you to drink a gallon or more of water a day.  Please do not let yourself dehydrate if you’re on the treatment.  Murph"

A.

LOL – it might make ya feel like ya just injected antifreeze, but alas … it’s not.  Interferon is something that the body creates naturally that gets the immune system going.  So while the interferon & ribavirin have your immune system balls to the wall kicking butt on your hep C, the rest of ya feels like (yep … you said it best) you just injected antifreeze.

The interferon you inject for hep C treatments, made by drug companies, is a synthetic version of the naturally-occurring interferon.  Together with the ribavirin pills, it acts sorta like a fuel injector for the immune system. 

These days, Peg-Interferon is what pharmaceuticals are making.  They used a  pegylated molecule – not unlike an 8 speed tranny, if ya can imagine that – that makes the interferon do its thing for a few days. 

You’re right on the money with the water, Murph.  It’ll also help anyone on treatment stay just a step ahead of those migraines that come with the hep C meds. 

Oh – but the package insert just says you may experience “mild, flu-like symptoms.”  My happy arss! 

Take it easy!

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Q.

"I’d like to know how good is milk thistle for Hep C, and if it lowers the viral load?

"anonymous"

A.

Hi there, anon.

Milk thistle can help to relieve symptoms, like fatigue, in a lot of people (including yours truly).  It also helps the kidneys do the extra work they need to do for those of us who can’t really do anything else about our hep C.

Unfortunately it doesn’t do squat for viral load.  Sorry.  Good question, tho.


Q.

"There’s a new treatment regimen for genotype 1.  The protocol’s not even out and it’s still in the experimental stage.  It’s not even approved yet. 

"Any idea of what they are talking about, since I have no additional information on it (not even a name of the drug), other than some clinics may try studies starting later this year?"

A.

Sure, I have an idea.   

It sounds like one of the inhibitor family of drugs in pre-clinical (with animals), phase I or II studies.  At this point it wouldn’t even have a name, but is given a protocol number.  With hep C, we’re going to continue to hear about a lot of these over the next several years (see What’s Next … here).  So this drug candidate has probably shown that it inhibits viral replication.  That’s the good news.

The bad news is that drugs of this type aren’t REALLY known to be safe until they get out of phase III.  Yes – even though phase II is considered the one to show safety.  Lots of times inhibitor types are found to cleave onto and inhibit RNA that we still need.  Then nasty things like exploding organs or organ failure can occur.  Know what I mean?  … no?  Well, here’s a visual that may help (here).

It’s up to you.  If I had really bad cirrhosis and was just short of a too-long transplant list, then I’d probably go for it.  Otherwise … not so much.  Good luck, man.

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Q & A LIVE at Hawgstock '07

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

whadda you lookin at?

S.V.R. stands for "Sustained Virologic Response."  While
there is no cure for hep C, SVR is the best we got - and it ain't bad.

Let's say you're treatment is working, and the virus is undetectable after
one of your blood tests.  You're still
not quite out of the woods.  Six months after your last injection, they test
you again.  If there's still no hep C in ya, then you've achieved
SVR.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Straightup RSS

Catch the feed

 

 

 

 

 

 

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The 2 Log Drop

We don’t mean a tree
here. 

When a someone’s
viral load shows a
2 log drop – usually during hep C treat-
ment – it’s just like taking 2 zeros off
your viral load. 

For example, a 2 log drop from a viral load
of 2,000,000 is 20,000.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



E.V.R. stands for

Early Virologic Response.

If ya get an EVR, ya gotta better-than-average shot at clearing the virus.

Your 12th week blood test will check for an EVR.

You’ve officially gotten an EVR when you’re viral load dives at least 2 logs.  Your best bet is when
zero virus is detected at this point.

While getting an EVR plays a big role in predicting your chances of going SVR, it’s also true that going viral negative during weeks 20 through 24 show as good a chance.*†

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hey ... I'm not a doctor - don't even play one on t.v. - so, check out my little disclaimer ... here.

on: 09.20.2012

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