This page is dedicated to questions about
                                                    symptoms of hepatitis C & Cirrhosis.

Looking for Q & A about treatment symptoms? 
                                    You'll find those under Hep C Treatment Q's.

Q.

"my mom has had hep c. for a long time and i was wondering i have to take her for surgery this friday something about portal to portal i guess hers is closing. my question is when this happens is it really true that she wont have alot longer to go. im asking you this because my mom is ashamed of having hep c. i know its just because people are igorant to hep shes also in the first stages of cirroses i dont understand what any of this means and i have been doing research its just i dont understand all the big words please tell me the easies way to get educated on hep c. im really worried about my mom"

A.

Hi there.

Sorry to hear about your mom ... and sorry that she’s ashamed about having this virus.  I guess a lot of folks are embarrassed about other people thinking they’ve taken a walk on the wild side, and got hep C because of it.  We here at the Straightup, however, live on the wild side, and are damn proud of it, so you’re in the right place, kid.

Unfortunately – and I get asked this a lot – I have no idea you how long your mom has to live.  But it does sound like she’s getting some kind of procedure done.  Without knowing if it’s liver cancer, or portal hypertension (aka, high blood pressure in the portal vein, which is this big ol’ blood vessel that runs through the liver), or if they’re just putting in a shunt (aka, a little tube) to take care of some bleeding inside (which is not all that uncommon with hep C), or thrombosis (aka, a blood clot, which is real fixable), then it’s pretty hard to explore some educated guesses with ya here.    

Given that, as you say, she’s only in “the first stages of cirrhosis,” I’d feel pretty optimistic about that.  See, cirrhosis is scar tissue.  So, given that she has plenty of healthy parts to her liver, she’s got a helluva lot better chance to heal right up from this.

Take heart, my friend.  Even though, doctors can be real butt heads at times, and use really big words so  that the average person doesn’t know what the hell they’re talking about, they are, overall, pretty good people – and in the areas of science & medicine, they do know what they’re doing. 

Ya might wanna consider taking a nurse aside, and asking all the questions you need to.  A lot of times, even when the doctor’s kinda lacking in people skills, they have a gem of a nurse tucked in their staff that will tell ya everything ya need to know, in a way you can understand.  It’s your mom, so they pretty much gotta tell ya. 

I’m real glad ya found us.  We sure do wish ya the best of luck with everything.  We hope you’ll let us know how she comes out.  Take care!

Q.

"Hello,

I to ask dose any need have this red rash come on ankle and goes up the legs about 1/2 way to the knee's?

Some time it itch's like hell and burns if you scratch it other times it don't itch but, always hot to the touch and red.Warm water make the red more noticeable to the eye. !time about 3 yrs. ago had it to cover both inside of the tights . Doctor do not know what it is. doc. just said maybe toxics in the blood? Cold wet compress help and a benadryl. If any one know what it is please know. I have liken planes in my mouth. This dose not look like that."

Brenda, Portland, OR

A.

Ya know, Brenda ... it kinda sounds like this thing someone else wrote about on Q & A – same page, further down .  It’s a skin deal, so it would make sense that your liver doc wouldn’t know about it.  A bunch of dermatologists (aka, skin docs) discovered this symptom.  Anywho ... you can check it out here. Might wanna run this one by your docs.

Q.

"Hi. finally a sit I can under stand!

“I was wondering if any one thats like in 4th stage, has there liver so enlarged that it take up almost all there belly? I have been going to HMO for 10 yrs. now and they did the Interferon and Riv. for 1 year back when it first came out and did not work, but now all I done is go to work in pain. The doc would let me off work while I was on treatment. My point is the doc will not let me do any other treatment. Tells me my Liver is too sick. but, not to sick to be disable. The Doc just give morphine for pain. I changed Doc. still no new treatment. Just having to wait for transplant?  The Doc don't know why I am having 104° fever. Tell me is there any thing I can do or the doc.?

“Sincerely,
          Brenda Portland ,OR"

A.

Damn.  I’m not sure where to start.  This is a first.  I’ve never heard of a doc giving morphine to someone with hep C (sheesh!).  We’re typically relegated to, like, tylenol (aka, acetaminophen).*  But, I digress .... 

I’m wondering a couple of things here.  First, are ya referring to the 2^nd doc that’s giving you morphine & not signing the letter?  Secondly, is the doc you have now, a regular doc, or a liver doc?  Cuz, it’s pretty scary when you consider how many general practitioners arent’ – shall we say ... up-to-date – about this disease.  Either way ... it doesn’t really sound like such a great deal for ya.  

Look ... I stay way away from telling people what to do, but ... if it was me, I’d go doc shopping.  Cuz, while there’s docs out there that leave ya wondering what frickin’ matchbook medical school did they graduate from anyway – there’s also a vast majority of caring, devoted professionals that are all about Respecting their patients; will take the time to help ya understand your condition, and give you choices in your care; and, that work their asses off trying to find a cure for this disease.  Girl, you deserve no less.  Skeeter Todd, one of our favorite Dragon Slayers, talks about it.  You can find his story here.

I’m not too sure about the HMO rules in Oregon, but a lot of times you can get them to refer you to someone else in their network.  So, if I’m not completely talkin’ out my ass here, I’d like to encourage you to see a liver doc (aka, hepatologist or gastroenterologist).  Another option to consider would be to check out a couple of liver transplant surgeons.  There’s this whole new bunch of liver transplant surgeons that specialize in hep C.  So it’s not a bad idea, even if you’re not quite ready for the big T.  Hell – this new breed of surgeon/hep doc also wants us to beat this disease, rather than go under the knife.  They know – only too well – that there’s more of us waiting for transplant, than there are livers. 

You hit the nail on the head about that first interferon they tried on us.  That shit you tried 10 years ago was, simply, that: shit.  Made a lot of folks sicker’n hell, and didn’t even work.†  But there’s hope.  There are some new potential treatments coming up the pike (like it says here).  This whole inhibitor family of drugs – coming out real soon – hold a LOT of promise for us. 

Can your liver take up your entire belly?  ... nah.  A swollen abdomen is a pretty classic symptom of advanced hep.  One doc friend of mine tells me that it’s not so much the liver that gets all big ... but this like baggie thing that our livers are in.  Bile gets all backed up & stuff, and the thing gets huge.  Hurts like hell, too.  Some docs opt to put like a stint in there & let the pressure off a little bit.  

Now ... I’m no doctor (like it says here), but in my opinion, a good doctor would be doing SOMETHING for ya.  That high fever you mention, sounds like something that ought to be paid attention to.  While not real typical of liver disease, it could possibly indicate kidney problems.  There’s a condition called hepato-renal syndrome that’s not real uncommon for folks who are at the point where they’re having symptoms like yours.††

Brenda, we wish ya the best – cuz you deserve the best.  I hope you can check out some 3^rd & 4^th opinions, and that you get a doc that recognizes that you’re disabled.  Also, a good disability lawyer can be of help, here – maybe even do something about a dick – er, I mean, doc – that prescribes morphine to someone with 4th stage liver disease, and won’t write the damned disability letter. 

Let us know how you come out.  God bless ....

* From cnn.com’s health library – June 2006.

† 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.

†† THE EFFECTS OF TEZOSENTAN, AN ENDOTHELIN RECEPTOR ANTAGONIST ON RENAL FUNCTION IN
       PATIENTS WITH CIRRHOSIS COMPLICATED BY ASCITES AND HEPATORENAL SYNDROME. F. Wong,
       M.D., Toronto General Hospital, Toronto, ON, Canada. Abstract presentation. 2007 EASL.

Q.

"Was up last night  feeling so bad that I was thinking I was gonna have something seriously go wrong if I went to sleep so I went to the computer and  typed in hep C in the search bar and found you guys. What a relief. I came away from the computer with a whole different out look on my condition.

“OK, so I've had hep C for 34 years. I know, it hasn't been around that long, but they told me I had hep B (got it the tuff guy way) for about 27 years then they changed it to hep C. Yep, got it confirmed twice 'cause I was disbelieving too.

“Anyway, I have been symptom free for all these years until I was hospitalized for dehydration 2 weeks ago. Then all of the sudden I have every symptom know to man (with hep C). Fatigue, edema, nausea, oddly colored pee,etc. So the question I have is does the symptoms come and go?

“The test I took 1 month ago showed my ASTs and ALTs both within the normal range and I have type 2 and the Doc wants to treat me with the stuff. He gave me all the stats on type 2, 80% success and the like. I told him I had to think about it.

“Thanks again for your kickass site, it really gives info in a way us regular guys and gals can understand. 

JT”

A.

Well now ... thank you for the feedback.  Plus, it’s great to hear when a doc’s doing something right.  It sounds like he’s giving you some real sound advice.  Cool! 

So ... ya have normal ALTs (aka, liver enzymes), eh?  That’s cool.  Unfortunately, it mostly doesn’t mean squat to us.  Recent data shows that almost half of us (here in the U.S.) run around with normal ALTs.* 

I say, mostly, cuz there is a study that shows that those of us who ALWAYS have normal ALTs are a little better off than those of us whose ALTs bounce around some.  They found that the ALWAYS normal ALT folks are less likely to get cirrhosis.†

Oh yea ... your question (hey ... ye ol’ editor gets brain fog, too)! 

Yea ... symptoms do come & go ... unless you’re real bad off.  But it doesn’t sound like this is the case with you.  Take’r easy!

* Viral and metabolic factors influencingalanine aminotransferase (ALT) activity in patients with chrnic 
    hepatitis C receiving peginterferon alfa-2a and rivavirin in randomized phase III trials. Daniele Prati,
    MD, Ospedale Maggiore Milan, Italy. Poster presentation. 2005 AASLD.

† Liver Histology in Hepatitis C Patients with Normal ALT Levels.  Anastasios Mihas, MD. Virginia
    Commonwealth University and McGuire DVA Medical Center, Richmond VA. Poster presentation.
    2005 AASLD.

Q.

" WHAT DOSE 3RD STAGE HEP C MEAN?"

A.

Well, here’s what I’m thinking ....  that this came from your biopsy report .... right?   ... that the stage 3 describes the condition your (liver’s) condition is in; and that you have hep C.  But you knew that already.  The stages are one way of measuring liver damage, though, and our cute-butted Brief Fact Grrl describes ‘em (here).

Q.

"hey everyone, my name is jmarie and your site is pretty cool I just found out I have hep c I also have geno type 1 and im trying to find out what the syptoms  are, the dr said I need to have a liver biopsy and see the liver specialist here but she wont give me the syptoms. she kind of got weird on me, i am exhausted all the time and yes my feet burn like some one lit a match to the arches, and I get real bad side aches and muscle aches, and nasua, I dont know if they are all related or not, when I saw the dr she made me feel like a creep and acted like I wanted some drugs and all want is to feel better, yes I would like to not feel what is going on with me but I havent asked her for nothing just to help me ive got a whole lot of tatoos and she definatly judges me for that and now the hep c,, can you help me jmarie"

A.

J Marie, you’re doctor sounds like a legend in her own mind (read: asshole).  There’s a bunch of em out there. 

There’s also a bunch of dedicated medical professionals who don’t try to play God, and would treat ya with the respect you deserve.  They’re out there just a-waiting to see good people like yourself, and help ya through this trying time ... without judging ya. 

Give respect, get respect.  ... that’s what I say.  But, I digress.... 

A lot of what you’re describing sounds like real typical symptoms of hep C (like it says here ... & here ... & here).  So, without trying to reinvent the wheel here, I’ll ask ya to read these Q & A on this page. 

As far as that doctor of yours goes ....  Just remember ... if they don’t treat ya right, then they don’t deserve the opportunity to have ya as a patient.  You can also check out what Skeeter says about healthcare in this interview (here).  

Good luck to ya!

Q.

 “Hey Man......Ist time I came here.  Problem..I have been diagnosed with the C back maybe 10 yrs ago or so.  I was in the hospital last year (unrelated stuff), anyway..my liver was functioning normally.  I had one doctor telling me that his liver was in worse shape than mine.  Anyways......I have no flippin insurance.  Havent had since 6 years ago.  Never had a biopsy, paid cash for a liver specialist,  never getting any farther than bloodwork.  They told me I needed my gall bladder out, to get that done before I had biopsy.  Don’t know what geno-type mine is.  I have been experiencing nauseau in the mornings, I am 52, single..I have spider veins in my hands and feet. No jaundice, fatigue...hell I have worked for 40 odd years, and I am sick of working.  Whats your advice for a no insurance son of a gun..and yesr..I have been drinking beer 4-6 cans each nite (stupid yes)..Would love some advice.

“Flat bed Deb (I am in the trucking biz, always had crush on bikers..an old hippie)”

A.

Well hi there, Flat Bed. 

It sure does suck not to have health insurance. I don’t have any either.  So I guess ya gotta pick & choose what you can, or can’t get done health-wise.  I do know that there’s a lot of states that have a kind of low-cost health insurance option that us “uninsurables” – aka, people with chronic diseases, like hep C – can get.  They usually don’t make a big stink about it, but if you apply for medical assistance, they’ll cough up the info on it ...  that, or just call your state’s Department of Human Sacrifice ... er, I mean “Services.”

Now, I’m not real sure what kind of advice you’re looking for.  We don’t really give advice here (like it says here), and don’t know anything about gall bladder stuff.  But we can share with ya what we know, and what our more scientific friends are finding out.  For sure, I’d say that if your doc told ya that ya need to get your gall bladder taken out, then ya probably oughta go with that.  ... eh?

As soon as you can find out things like your genotype, etc., you’ll be able to make a few more informed decisions re: your hep C.  Also ... a liver biopsy may not be necessary now that they’re coming out with these new tests, like Fibrosure, and the like.*  These are quick & dirty blood tests that claim to tell about as much as a liver biopsy does.  Takes about 5 minutes, and they don’t have to drill a big-ass hole in your side.  Also – and I’m not certain about this, but it stands to reason that – it oughta be a helluva lot cheaper.  So, ask your doc about it.

Re: the drinking ....  We don’t go around telling people what to do, but the booze’ll definitely speed up the damage to your liver.†  Me ... I quit several years ago, and it’s really made a difference in the amount of symptoms I get ... which isn’t nearly as much anymore. 

So, you’re single & like bikers ... eh?  Any takers out there?

*  Fibroscan® is a new non-invasive method for the diagnosis of liver fibrosis in children: a prospective
     comparison with Fibrosure® and liver biopsy. Victor de Ledinghen, Hopital Haut-Leveque, Pessac,
     France. Poster presentation. 2005 AASLD.

Q.

(ADDENDUM to this Q here).

"thanks so much, I am learning more and my new doc has explained some of that, yeah it is bridging necrosis, but I am a fighter.....what about the leg pain, I have like painful nodules on the tibia.  I know that you are not a Dr and do not play one on TV.  When I was working, I could barely manage to get from my car to the house, now that I am not so busy, yeah the leg nodules hurt....any info on that????   Thx Terri"

A.

Ya know ... this is a trip ... but I thought for sure I wouldn’t find jack when I found out what a tibia bone was (which is, by the way, *connected to the knee bone +), but it was just one of those times when I was glad to be wrong.  There was an article published in the Annals (no pun intended) of Dermatology, in Rio de Janeiro, Brazil about the condition.  It’s called “erythema nodosum.”* 

“Erythema nodosum” is caused when we get nodules below the skin (aka, subcutaneous) - like, on your tibia bone, for instance – and the cells where that’s happening get really hypersensitive.  It hurts like hell, and mostly happens in a persons legs. 

They go on to say that it’s caused by a few different kind of infections – among them – good ol’ hep C.

The good news is, if you can beat the hep C, the erythema nodosum goes away. 

o.k. ... so, that’s probably not great news ....

In the meantime, I’d consider seeing a dermatologist about it.  I know it’s not a pimple or anything, but dermatologists (aka, skin doctors) deal with arthritis kinds of things, like psoriasis (also a kind of arthritis), etc.  So, I don’t know this for sure, but maybe they have something up their sleeve to lighten that up a little bit.  

If ya do ... let us know ... alrighty?  Good luck, Terri – and thanks for asking the question.

*  Erythema nodosum and infection by hepatitis C virus. Thelma Skare, MD, Assistant Professor of
     Rheumatology, Evangelica de Medicina do PR. An. Bras. Dermatol., Rio de Janeiro, v.79, n.1
     (pp.107-109), 2004.

Q.

"Hi,

"I just got my results yesterday for Fibrosure test. I was shocked to see that I am F-4 cirrhosis stage. How many stages are there to cirrhosis? What does this mean? I know what cirrhosis is but don’t know what the F-4 means.

"I was diagnosed in 1998 and have not done any of the tx. I have been using herbal treatments so far.

"I had a fibrosure blood test done one year ago and had a Fibrosis F3-F4 reading. This month, I did another firosure test and the results said: Cirrhosis F-4. My liver feels like a hard rock inside of me most days/nites.

"I am a 1a geno and have a VL of 6,630,000. My ALT is 241 and my AST is 341. I have -115 platelet count. I have had many symptoms for many years. I am 69 years old.

"Anywho......I am really worried about the cirrhosis F-4 reading, will be very appreciated.

"Thanks for your time. May you be well.
 Crystal"

A.

Hi Crystal.

I can sure appreciate your concern about the test result.  But I wouldn’t lose a whole lotta sleep over it (yea... believe it or not, pun intended there).   Now ... I can’t know this for positive without talking to your doc, but “F-4” is not necessarily the same as stage 4 liver disease.  Fibrosure (aka, transient elastography*) is different than a biopsy.

The Fibrosure tests (for the folks out there at home) is a noninvasive test (aka, they don’t stick a huge-ass needle in your side) that’s used to figure out what condition your liver’s condition is in.  Follow me?....  It takes a quick picture, that measures liver stiffness.  So, the scoring isn’t the same as “stages.” 

Not all hep docs use this.  There’s still quite a few that rely on liver biopsies as a more reliable way to see what’s going on.  I dunno ... they just don’t have consensus on what works better ... but the hep docs I’ve talked with say that liver biopsy’s the best we got. 

But back to the whole “F-4” thing.  It may also be a Metavir score that’s used to measure fibrosis on a scale from F0 to F4.  ... that being the case, F4 may not be so bad.  For instance, someone could have hep C, have an F3 score and not be cirrhotic.†

Hey ... one upside to this, is that you don’t have ascites, since they couldn’t do Fibrosure if ya did.*  What the hell is that?  Ascites are when ya have big fluid build up around your liver & tummy area.  It’s a sign of advanced liver disease.

But having cirrhosis isn’t necessarily a death sentence, even though you’re experiencing symptoms.  I imagine your doc'll wanna continue to monitor you - like do CT scans every 6 months or so to make sure you're not getting any cancers growing.  It'll be real important to take good care of yourself right now ... like maybe eat healthy foods, quit smoking, stay away from fried stuff & stay off of booze. 

Worry not, though.  I have quite a few friends who've got cirrhosis, and we all have a blast & party with frosty mugs of root beer on occasion.  For those of us who haven’t yet cleared the virus, this is the inevitability for us, and it never hurts to be ready for anything.  What you DO have, is a doctor (& i assume, health insurance) & good care.  A lot of folks (me included) don't have even health insurance, so you're ahead of the game in that very important respect.

But I’d definitely clarify alla this with your doc, nurse, or someone who sees ya at the clinic ... and that can access your file.  There’s not a one of us that should ever leave a doctor’s office not understanding what’s going on with us. 

Good luck.

*  Fibroscan® is a new non-invasive method for the diagnosis of liver fibrosis in children: a prospective
     comparison with Fibrosure® and liver biopsy. Victor de Ledinghen, Hopital Haut-Leveque, Pessac,
     France. Poster presentation. 2005 AASLD.

†  Cirrhosis screening I alcoholism consultation using FibroScan®. Pascal Melin, MD, Saint Dizier
     Hospital, Saint Dizier, France.  Poster presentation. 2005 AASLD.

Q.

“Wonderful site, lots of information.

“I have hep c, I have symtoms such as veins swelling in my legs (my knees, I have lots of pain in my side, I don't know how long I've had the hep, I'm 42 yrs old, and I have about 20 years ago engaged in using needles with others (taboo I know). I also have tattoos, I had one done about eight years ago in Rochester and I swear I can't remember if I watched the artist change to clean needles, just after a woman had hers done. I have had added ink to my body since ... but I was sure to watch this time. I go reguraly to my doctor and he keeps telling me that my liver is functioning normally, what's up with that? when I tell him of my symtoms that do include fatique achy and sometimes jaundice if my liver is functioning normally why am I having these symtoms?”

A.

Well thank you very much.  We sure do appreciate feedback. 

First off, I wanna tell ya that you’re past “taboo” behaviors are in your past ... no one’s gonna judge ya here.  There’s a bunch of us who engaged in “taboo” stuff – those of us living with hep C (like it says here).  But hell ... when ya think about it, there’s also a bunch of people who aren’t living with hepatitis that kicked it up back in the day, too.  But for some reason, we get the stigma.  Guess I won’t get off on a stigma soapbox ... for now ....

I can see how what your doc’s saying sounds confusing.  It’s got me wondering if he’s saying, either:

• you have a normal-functioning liver ...

                      ... or ...  

• you have normal liver functions.

First off, it’s true that you can have either one, and  have hep C, and  have hep C symptoms at the same time.  Here’s the deal ...

If what your doc’s saying is “you have a normal-functioning liver,” I would take that to mean that it’s doing all the things it’s supposed to do ... like being your body’s oil filter, even though you’ve got hep C (or cirrhosis), and even though you have all the symptoms you’re having. 

On the other hand ... if what your doc’s saying is that “you have normal liver functions,” I would take that to mean that he’s talking about the part of your blood test that checks on your liver.  It’s called a lot of things, like:

• Liver Enzymes,

• Liver ALT/AST,

• Liver Panels, or

• (drum roll please) ... Liver Functions.

Most people living with hep C have higher-than-normal liver functions (or enzymes, or ALT’s, or panels ... WHATEVER).  But there’s a bunch of us with hep C who have normal liver functions (etc.).  ... yours truly included.  We still have hep C, we can still get symptoms, and we can still have high viral loads – we just have normal liver enzymes. 

But I’m just kinda pissing in the dark here, so take what ya like & leave the rest.  Either way though, it sounds like you’re in pretty good shape. 

Why the normal function & still symptoms, you ask?  Good question ... one that’s got me kinda wondering why your doc didn’t answer it.   But, I digress ....  We’ll give’r a shot.

Enlarged veins can be a whole lotta stuff, but if they’re hep C related, then they might be varices (aka, enlarged veins).*  Varices happens when the big portal vein in the liver gets blocked, and shit backs up.  Thing is, that usually happens to veins around your torso area ... not necessarily your knees.  I’m wondering if you just had a biopsy not too long ago.  That result could sure be helpful to ya, too. 

The pain in your side’s a pretty common side effect, too ... that is, if it’s your right side.  When I mentioned having “liver pain” to a doc friend of mine (aka, hepatologist), he told me there was no such thing, because the liver doesn’t have those kinds of nerves.  But we, more likely experience pressure from our bile duct backing up – a lot like if you never changed the oil on your bike – which creates pressure on all the other organs in the neighborhood.  This can result in some pretty intense pain.  It sure gets your attention, anywho.

Fatigue & hepatitis C just go together ... like Bonnie & Clyde, Harley & Davidson, Rogers & Hammerstein.  It's a symptom, and doesn't necessarily mean anything dramatic.

At any rate, a functioning liver is a good thing to have ... so congrats!  I hope we were helpful to ya.  Take’r easy.

*   Complications of Liver Disease. Health Library. June 2006, cnn.com.

TOP O' THE PAGE

Q.

"please send me updates, I am a hepper lady and starting tx this week, what do you know about necrosis grade 3/4 4/4.  thanks Terri"

A.

Hi there, hepper lady. 

What do we know?  Well, let’s see ...  necrosis happens to all of us living with chronic hepatitis C.  Necrosis is literally “cell death.”  So, because the hep C sorta dead ends in the liver, our liver cells (aka, hepatocytes) experience necrosis.  All those dead liver cells laying around, eventually lead to fibrosis, then scarring (aka, cirrhosis), etc.  Ya with me?

The numbers, grade 3/4 - 4/4 sounds like a range from a test result of some kind.  Am I right?  I’m not real certain here, but i’m assuming the 1st number is the “stage” (better explained here).  The 2^nd number may be – as you say – the “grade.”  Grading measures how much fibrosis you have; when there’s a lot of fibrosis – enough that it’s touching – that’s called “bridging fibrosis.”  Lots of times, stage 3 can mean bridging fibrosis.

So, I’m kinda shooting in the dark here, but I hope this info’s of some help to ya.  Good luck with the treatment!

Q.

Email 1:
"I took the treatment about a year ago, was only able to keep it up for about 6 months. My VL dropped down pretty good but my side effects were horrible.  Then my numbers stopped dropping and started going up again so my doctor stopped the treatment. Just kind of left me hanging. I was seeing a liver specialist. I never really felt any better after stopping the treatment and I still have good days and bad days. My problem now is I can't sleep at night. Im up all night walking the floors, the only way I can get any relief. My legs are killing me and the bottoms of my feet and palms of my hands burn. Also I'm getting sores in my mouth again. Are these symptoms that my liver is getting worse? I never had a biospy.    

“This is a great site, I will be waiting for your reply.”

EMAIL 2:
“Please help me!  I need answers.  I was on the interferon treatment for about 6 months. I was so sick I thought I would die. My doctor took me off because the treatment was'nt working and I was having to many side effects.  I had the geno 1, I believe, the one that is hardest to get rid of. Now I am feeling bad again and having symptoms like I was having while I was on treatment. Legs killing me and keeping me up all night. Bottom of feet and palms of hands burning, scratchie skin and just tired all the time. The worst is not being able to sleep.  Is this the hep c kicking back in again?  Should I start looking for another liver doctor? Please answer soon, I'm not sure what to do. 

“The lowest my VL load got was to 7,000 and then it started going back up.

“Thanks for your help. Gail"

A.

Well hi there, Gail.  Sounds like ya got a bunch of symptoms going on.  Sorry the whole treatment thing didn’t work out.  ... and yea, you’re right.  That’s pretty typical for us genotype 1’s.  More often than not, it just doesn’t work for us. 

With your worsening symptoms, I’m wondering how long it’s been since you’ve been off the treatment.  Cuz when the virus is coming back, we can re-experience the symptoms of acute hep C (aka, when it was brand new), on the one hand.  ... on the other, they sure don’t seem as intense as what you’re describing. 

I’m also wondering about the burning on the palms of your hands & soles of your feet.  Do ya mean like the burning sensation when your hand or foot falls asleep?  Now that’s a pretty typical symptom of hep C.  It’s called Reynaud’s Syndrome.*  Our shot-to-hell circulatory systems can’t get the blood to flow all the way to the hands & feet; ‘specially if you’re in a cold climate.

The leg pain’s also pretty common ... and aka, “myalgia.”*

You mentioned that you never had a biopsy.  Geez!  Maybe it’s just me, but I gotta wonder about a doc that would just throw ya into hep C treatment without doing a biopsy to assess where ya are ... or God forbid ... allow YOU to decide whether or not treatment’s something you might wanna try.  On the other hand, there is one school of thought that believe that people under 40, and other predictors, like past drinking & drugging, etc., is enough to conclude that a biopsy isn’t necessary.**  My opinion?  ... that’s crap.  The only one to benefit from you not having a biopsy is the insurance companies. 

You’re also wondering whether or not it’s time to see a different liver doc?  If it was me? ... hell yea. 

*   Complications of Liver Disease. Health Library. June 2006, cnn.com.

** Identifying a subset of patients who do not warrant pre-treatment liver biopsy for
      hepatitis C (HCV). K. Watson, M.D., St. Vincent’s Hospital, Fitzroy, Australia. Abstract
      presented at AASLD 2005.

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Q.

"Can mild inflammation of the liver cause symptoms like extreme fatigue, nausea, etc."

A.

Not usually ... and not all by itself.  Just having hepatitis C means we have mild inflammation, aka, our livers are slightly swollen.  So, whether ya been walking around with hep C for 20 years, or ya just got it last year, your biopsy’s likely to say you’ve got “mild inflammation.” 

But here’s a few of other speculations about symptoms ...

One liver doc friend of mine explained to me that the fatigue, nausea & general feeling like crap is all about our immune system’s being so damn busy.  For instance, when ya got the flu, it isn’t the flu virus that makes ya feel sick, but rather, it’s your body’s immune system – creating natural interferons & immune proteins – kicking in ... kinda like nitrous in a muscle car.  So the parts of your body that prevent all those crappy symptoms are busy.

Could be cirrhosis – portal hypertension carries those symptoms*, too – but then the same test result that told ya “mild inflammation” woulda told ya about those conditions, too.  Plus, they don’t usually share the same billing.

Finally – and probably most important – is how well you take care of yourself.  For instance, if you’re still drinking booze, etc., etc., those hangovers are probably getting pretty intense.  ... and maybe this is just me, but if I sit there & put away a big plate of fried chicken & french fries, I feel like crap afterwards for several hours.  Our livers – what’s left of the healthy parts of ‘em – are working overtime, and not so well.

Then there are those of us who’ve been walking around with this disease for 20-30 years.  At some point, we experience the symptoms of fatigue, nausea, joint pain, etc.  They just come with the disease – and we learn to live with ‘em. 

But the thing is ... we CAN learn to live with ‘em.  I consider myself as someone who lives with hep C.  ... and dammit, it ain’t gonna prevent me from living ... if I can help it.  I mostly don’t even notice the symptoms most of the time.  A person’s attitude’s got a helluva lot to do with it.  I really like how this guy with hep C put it (here).  Take’r easy!

* Safety & Effectiveness of Pharmacologic Therapy for depression in Patients with
    End-Stage Liver Disease.  Jayant Talwalker, M.D., Mayo Clinic & Foundation,
    Rochester, MN. Poster Session, AASLD 2005.

Q.

" My niece has hep C and probably has had it for 20+ years. She found out 4 yrs. ago & had a biopsy then. It showed beginning cirrhosis. The gastro guy told her it would probably be 5 or 10 years before she had real problems. She tried interferon and was a nonresponder.

It's 4 years now and she's done well until recently. Of course the fatigue was there, but she managed ok. In the past 6 months or so, she has developed spider veins all over her body. The large veins in her arms and legs do this weird thing where they pop up like varicose veins for a day or 2 then they go away. When this happens, the pain is so bad she can't sleep and aspirin doesn't help much. She had bloodwork done a few weeks ago in preparation for a visit to the gastro guy next week and her platelets are low. I don't know how low. She's had some spontaneous bleeding from a place on her lip and several nose bleeds recently.

Her eyes have been a little yellow for a while now. Day before yesterday, she said she was yellow all over. The next day she thought it was a little better. Does jaundice come & go?

Does this sound like ESLD? Do you think portal hypertension could cause the veins in her arms & legs to protrude?  I don't know whether to try to tell her it's all going to be ok or try to prepare her for bad news. Any guesses?

Thanks for your help."

A.

First of all, I can tell ya for sure that your niece is pretty damn lucky to have such great support in an aunt like you.  Since you’re asking, I’d vote for telling her it’s all going to be ok.  From what you’re telling me, it sounds like your niece is pretty symptomatic, but not necessarily at end stage liver disease (aka, ESLD).  ESLD would mean her liver wasn’t functioning.  Doesn’t sound like that’s what’s happening, but it does sound like she’s in a battle right now.

Let’s take a look at her symptoms.  What you describe are normal symptoms of hepatitis C & cirrhosis, like the spider veins & the bleeding.  The spider veins are more common in females – even ones without hep C.  The bleeding – and in many, easy bruising – is called coagulopathy.  See, blood clots use a certain protein that our livers make.**  A liver with cirrhosis has a helluva harder time making this protein, so we bleed easier.  Finally – and I hate to suggest this, but – ya might wanna take it easy on the aspirin.  Acetaminophen – taken in modest doses & without booze – should be o.k.

The large veins that come & go may be a good thing.  Those’ll pop up when the liver is fighting back.***  But another symptom of hep C & cirrhosis is loss of appetite.*  Without knowing her body type, it’s hard to say, but if she’s already skinny, that could be contributing, too.  I’m sorta shooting in the dark there.  Edema – the swelling of the arms & legs – is a symptom of cirrhosis,* and that too could be contributing.  But typically portal hypertension causes the veins in the upper tummy & abdomen areas to swell.

The jaundice is a symptom of cirrhosis.  This happens when the liver isn’t able to remove the residue from old red blood cells (aka, bilirubin).*  It builds up in our skin & the whites of our eyes and makes us look yellow.  Might also effect the color of pee & poop.

As far as preparing her for bad news, I’m not exactly sure what you mean by that; nor do I have any idea how old your niece is, or anything about your relationship with her (like supportive relative, care giver, ????).  But I can sure appreciate how trying it can be at times to care for someone that has a chronic illness, and smart people tell me that it’s best done by taking good care of yourself.  So, by educating yourself – like writing to Hep C Straightup – you’re doing that.  So is taking long, hot baths with candles, wine, soft music ... (ah ...).

Oops.  I digress... (damn brain fog, anyway).

But, I gotta speculate that the more important thing for you to do is to prepare yourself ... for anything.  You can better be there for her, if you've got yourself squared away.  This is her battle.  It’s gonna take courage – your courage – and all the “it’s-gonna-be-ok’s” & “c’mon-hon-you-can-do-it’s” you can afford.  Lotsa positives.  But like I said, she sounds damn lucky.  Wanna adopt me? 

I do wish you both the best of luck, & hope you’ll stay in touch. 

*     Cirrhosis, CNN Health Library, CNN.com

**   HepCare Hepatitis Info, by Advanced Care Scripts.

*** A potent angiogenic factor; vascular endothelial growth factor, significantly improved the overall  
         survival rate of acute liver failure. t. namisake, Third Dept. of Internal Medicine, Nara Medical
         University, Kashihara, Japan.

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Q.

"My spouse has been diagnosed with Hep B and Hep C and Cirrhosis and he is a diabetic for 15 yrs.  How serious (and I know it’s serious) is this – doctor not treating for anything but cirrhosis complications."

A.

You’re right – sounds serious.  But you’re asking me, how serious.  Well ... I couldn’t really tell ya.  But a few questions come to mind.

First of all, I’m wondering what kind of doc he’s seeing: 

      A regular doc (aka, GP or General Practitioner or Internist)?

      or a liver doc (aka, Hepatologist or Gastroenterologist)? 

See ... it’s like this.  If your Harley engine threw a rod, you wouldn’t take it to Sears to get it fixed.  In these days of warranties & all, you’d probably take it to back to Harley, or to a bike mechanic (unless you’re pretty damned talented, but, I digress ....).  The way I see it, a person with liver disease really needs to see a liver doc. Liver docs don’t specialize in treating diabetes – except to know that chronic hep C can – but doesn’t always – lead to diabetes.

Speaking of diabetes ... when the diabetes was diagnosed 15 years ago – by a doctor, I assume –  I’m also wondering:

      if your spouse monitors his insulin/blood sugar levels;

      if he’s using nutrition & exercise to stave off the need for insulin.

I’m really out of my element here, with regard to diabetes.  But what my friends, who are diabetic tell me, is that if it’s left untreated, it can lead to problems with circulation and major organ failure.  So, if it was me, I think I’d be doing something to get the diabetes taken care of.

Finally ... I ask this a lot, but it’s really, really, really important: I’m wondering how his liver’s doing:

      Has he gotten a biopsy? 

      Do y’all know what stage/grade his liver is?

      What’s his genotype? (here’s why this is important)

In other words, it helps to know what condition his condition is in (yea ... like the song).  Also ... If just diagnosed with the hepatitis B & C

      ... did he just now get one or both of these (aka, acute), or

      ... has he had one or both for a decade or two (aka, chronic)?

Both hepatitis B (talked about a little bit here) and hepatitis C can become chronic (like it says here).  When chronic, either one can do lots of damage to the liver – even more than we can inflict on ourselves, if you get my drift (like in the next Q & A).  Since he’s got cirrhosis, it’s dollars to doughnuts one of them are chronic.

Speaking of cirrhosis ...  from what you’re saying, your ol’ man’s doctor is addressing what the cirrhosis is doing to him (complications).  Again, I’m wondering how the doctor’s treating him.  Doctors & people with cirrhosis I talk to just do a CT scan every 6 months or so, to watch for liver cancer (aka, HCC, or Hepatic Cellular Carcinoma ... try sayin’ that 3 times fast).  Also, if the cirrhosis is causing symptoms, then it could be pretty advanced.  But then ... whaddo I know (like it says here)? 

Well ... I’ve probably given you more questions than answers, but sometimes the questions are pretty damn important.  The straight up is, if he’s not seeing a doc (or in your case, 2 or 3) for all his conditions, then that is serious. 

Best of luck to ya ... and keep in touch.

Q.

"First time here.  Wish I would have found this place a few years ago.

“My question is, my wife has Hep C and has been jumping through the hoops of her doctors for a long time.  So far she’s just gotten worse.  She’s taking all sorts of med’s for fluid retention and nothing seems to be working.  She has put on 65 pounds since the first of the year and is now at the point where she can hardly move.  Is this a normal symptom of Hep C?  Is there anything we can do to stop this?

Thanks,

Ted B."

A.

Hey there Ted. 

To answer your first question … no.  Weight gain is not a symptom of hep C – BUT (yea … big ol’ butt) swelling may be a complication of it.  The other night, I was with a friend of mine who has cirrhosis, and he swells up when his liver isn’t doing so well.  It’s kinda hard to say without knowing more about the condition of your wife’s liver …  like a recent stage/grading from her biopsy.

Sorry you’ve gone through a lot of crap with your doctors.  That’s such BS – and a big part of what fuels me to do this site.  Ya know, I don’t know what you’re insurance situation is, but there’s NOTHING that says y’all can’t just have her see a different doctor. 

If ya didn’t like how a certain mechanic wrenched on your bike, you’d change mechanics ….  right?  But like I said there’s the whole insurance thing.  Man, I could get on a whole different soap box on that topic, but won’t for now.    

Also I don’t know if you’re dealing with a Primary Care doc (internist or general), or a liver doc (gastroenterologist or hepatologist) – but for sure, I hope she’s seeing a liver doc.  If not, she might be taking something that’s worsening her condition.  … and there’s a LOT of regular docs that don’t know beans about hep C. 

Ya got me wondering about the swelling though.  I’m gonna look into this, and may post an addendum – will let ya know.

Hey man – stay in touch.  … and thanks for the vote of confidence.  It’s sure appreciated.  Straight up.

Addendum:       

Ted ... I did a little research about the water retention issue.  There were two studies that were presented at this year's Liver doc conference* that mention it.  Both studies refer to sodium reabsorption and water retention as signs of early cirrhosis, and in some cases, possible kidney trouble. 

I'm no doctor, but I'm not sure that taking medication for water retention caused by cirrhosis is a good idea.  If it was me, I'd go to a liver doc (a hepatologist or gastroenterologist) and get a CT scan & liver biopsy done, and take it from there.

For what it's worth, one of the studies showed that high-dose calcium (given intravenously) was helpful in lessening water retention in most of the patients in the study. 

I wish you both the best of luck.  Please keep me posted.

 -- editor 

* The studies:
1. The Mechanisms of Sodium and Free-Water Retention in Experimental Preascitic Liver Cirrhosis: A
    Physiopathological Study, Giovanni Sansoé, M.D., Gradenigo Hospital, Turin, Italy. Abstract presented at
    2005 AASLD.
2. IV Infused Calcium has Marked Diuretic and Natriuretic Effects in Preascitic Human Cirrhosis:
    Physiopathological and Clinical Implications, Giovanni Sansoé, M.D., Gradenigo Hospital, Turin, Italy.  
    Abstract presented at 2005 AASLD.

The medical conference I refer to is called The Liver Meeting. Many hepatologists attend this every year.  It's put on by their professional association, AASLD, which stands for American Association for the Study of Liver Disease.

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Q.

"You don't play doctor at home?  That's not any fun ....  ok here's my question.  If a person has HCV-caused cirrhosis and goes SVR after treatment, will the liver regenerate back to normal?  I know, what's normal?"

A.

Thanks.  Great question.  The short answer is nope.  But if you're a responder, then there is one little upside to the condition of your liver while on treatment; that is, if the virus has become undetectable, then for that time, it's not doing any more damage to your liver.  That goes for people who don't achieve SVR - same goes for folks who have cirrhosis or not.

On this note, there are some doctors who will offer patients who don't achieve SVR something called maintenance therapy.  It's doing just the interferon shot.  There were some pretty long-term studies going on to see if it works, but I'm not real sure they're even still happening.  Even if they are, the endpoint (aka, the marker for what's being studied) is death.  Not a real good deal for most of us.

There's unfortunately no cure for cirrhosis - unless you count a liver transplant - but what's also true, is that those who get a liver transplant cuz of hep C, the hep C comes back after the transplant.  But that's another topic. 

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Hey baby

... what's your

genotype?

This is something
real important for
you to know. 
Genotypes 1 & 4 are
the hardest to beat;
3's a little better, &
genotype 2's the
easiest.

Genotypes 1 through 4, are most common in
the U.S., with
approximately 75%
of us being
genotype 1. 

The blood test that
confirms your hep C
diagnosis will also tell
ya your genotype. 

So ... ask your doctor. 
If they don't tell ya,
then it's definitely time
to get a second opinion.

Donate!

One of the ways to measure liver disease is by
     Stages.

Stage 1:
No fibrosis or
cirrhosis; just mild
liver inflammation.

Stage 2:
mildly inflamed liver with just a little bit
of fibrosis.

Stage 3:
liver inflammation
& some bridging fibrosis.

 
Stage 4:
cirrhosis
(aka, scarring); the

Alla this usually comes from yer biopsy result, though. 

But, it's different than, say, like seeing an F2 on your paperwork (see?)

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Catch the Feed

then hit the link.

If you do ask a question ... here's the deal:
Sign your name if you like, or don't sign it: the choice is yours.  Your email address will NOT
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