Hepatitis C and Fatigue

[Raha0024]

Hi, Im 26 year old male  I found out about a year and a half ago that I have HEPC ( got it in intensive care as a baby).
I had a liver biopsy done right away  and my liver is in stage 1, not affected at all by the hep c. I am grateful that my liver is healthy but I suffer from an extreme amount of daily fatigue. The fatigue is really affecting my everyday life. I get extremely tired at work and find myself leaving early and not working hard. I also stopped playing hockey (something I love) and swimming because I get to tired to do it.  Does anyone have the same experiance and have some ideas on how to combat the fatigue. I went to the top Dr. at Mt. Sinai in NYC, and he just brushed it off as something I have to live with. I dont believe that and I was just wondering if any1 had some advice.  

Thanks

                                                                                                                                              

[dogsledder]

Yes, I am doing a 48 week tx (now in wk 37). I started in a clinical trial with HCV796 which they stopped at wk 20 because some folks developed super elevated AST/ALT (like in the 400's). Their levels have since returned to normal.  I continued with SOC (Pegintron and Ribavirin, 1200 mg).

[PRINCESS512]

thankyou for responding................i did get a liver biopsy.just 7 days ago.still waiting for results.perhaps mon. or tues.that wil determine treatment.all i know is i am genotype 2,and Dr tells me its treatable,and can be cured with 6 months of pegasus injections,and pills called riba...something.i have no ide how i got this,or when it was contracted.i am seeing a GI doctor for now,awaiting my biopsy results.i had an ultrasound of liver and they said it looked good,but i have a mild fatty liver.the technician said she saw nothing else,and the report showed nothing else.so i guess the biopsy will tell all...ill let you know as soon as i know..........thanks so much !! i guess my main concern is being scared of side affects of meds and fear of the unknown.drs dont want to tell us all bad things i guess, but its good to know so i can be prepared.im 44 yrs old...im hopeing for this to be cured.and i hope all of you out there do well with your treatment and my prayers are with everyone.the worst feeling yet was when my dr made me sign a form that goes to the center for infectious disease control so they know im carrying an infectious disease.that sucked.made me feel so down.......and alienated.so much for the privacy law...lol.but what is the purpous i ask the Dr.he tells me its the law he has to report me.what do i know........i guess i need to find a hepatoligist ? but this dr i go to and his partner treat people like me all the time and have been Top Doc " rated for years.maybe they are all i ned,unles i dont respond to tx.well thanks all.............take care.

[dancegirl54]

Mremeet gave you great advice - diet and exercise.  A lot of us on this forum with minimal damage(and more) are older and are waiting for better drugs that are less debilitating. As the mother of 2 young people(LIKE YOU) I am on the fence about young people waiting. Yes, you may be able to wait, but at your age, you will most certainly tolerate tx better than someone in their 40s or 50s.  My kids and I are the same type as you - and my son recently treated.  He never missed a day of work or school, he felt pretty good except for a period in the middle, but it was short.  You'll get lots of info here, the good thing is that you dont have to rush into a decision.

[jmjm530]

Raha: I went to the top Dr. at Mt. Sinai in NYC, and he just brushed it off as something I have to live with.
---------------------
Don't understand.

Is "the something you have to live with" in refererece to the fatigue or the Hepatitis C.

Because you don't have to live with Hep C, it can be treated. And a good doc, will advise, but at the end of the day, will always leave the decision (to treat or not) up to the patient.

Did they tell you they would not treat you, or that they suggest you should wait awhile?
What is your genotype? Do you know how much liver damage you have? Have you had a biopsy?

Or maybe, the "something you have to live with" is referring to the fatigue? This also doesn't make sense, because some people's (not everyones)  fatigue does get better after a succesful treatment. But no one can tell that in advance.

There has to be more to the story than the doc telling you "something I have to live with".

-- Jim

[alagirl]

So you're on a 48 week course?

[dogsledder]

I guess I was one of the "lucky" ones. I have probably had HCV for 25+ years and was asymptomatic. I was diagnosed in 2001. My energy levels were great...2-3 hrs of gym 4-6 days per week...Alaska survival training/wilderness dogsled trips (-50 F)....I started tx in 3/07...now fatigue and all the other sx you hear about. I was UND wk 4 and am still hanging in there. I am 1a; VL was 5MM+.

[alagirl]

In my own experience, I found out I had HCV within weeks of exposure, and I unfortunately had a fairly severe acute case of HCV.  I was exhausted, nauseous and had a host of other symptoms.  I began treatment as soon as I could get the meds since I'm a 1b and treatment is somewhat more responsive for acutes.  Treatment sucks.  It does.  It's just a lousy, yucky experience that you wouldn't wish on your worst enemy.  But.  At least when you finish, like Mremeet said, you're through the fatigue and you can get your life back again.  

And I'm going to add, you don't have to worry about which part of your body the virus is working on today.  You can take your body where it is and work towards the rest of your life, virus free, instead of knowing that every day you're actually inflicting more damage, and you're exhausted and sick to boot, plus not enjoying the activities you love.  You are a YOUNG man.  You SHOULD be enjoying hockey and the things you love.                  

Also, every five years for a biopsy?  People's livers can progress in dramatically short order sometimes and there is no predicting how quickly that will occur.  There are folks who progress slowly, then suddenly speed up, folks who go fast from the get go, folks who always progress slowly, all kinds of different permutations.  I guess I am just saying, don't take anything for granted, and I would definitely get a second opinion no matter how talented you think your doc is.                                        

[alagirl]

And perhaps my favorite new study on HCV and renal failure, showing a whopping 40% higher rate of renal insufficiency in veterans with HCV as opposed to veterans without HCV.

http://cjasn.asnjournals.org/cgi/content/abstract/2/4/715

Published ahead of print on May 30, 2007
Clin J Am Soc Nephrol 2: 715-721, 2007
© 2007 American Society of Nephrology
doi: 10.2215/CJN.00470107

Epidemiology and Outcomes

Hepatitis C Virus Infection and the Prevalence of Renal Insufficiency
Lorien S. Dalrymple*,, Thomas Koepsell,, Joshua Sampson||, Tin Louie, Jason A. Dominitz*,,¶,**, Bessie Young,,, and Bryan Kestenbaum
* Health Services Research and Development Northwest Center of Excellence,  Epidemiologic Research and Information Center, ¶ Northwest Hepatitis C Resource Center, and  Primary and Specialty Medical Care Service, Veterans Affairs Puget Sound Health Care System, Department of Medicine, Divisions of  Nephrology, ** Gastroenterology, and  General Internal Medicine, University of Washington School of Medicine,  Departments of Epidemiology and Health Services, University of Washington School of Public Health and Community Medicine, and || Department of Biostatistics, University of Washington, Seattle, Washington


Address correspondence to: Dr. Lorien Dalrymple, VA Puget Sound Healthcare System, Health Services Research and Development Northwest Center of Excellence, 1100 Olive Way Suite 1400, Seattle, WA 98108. Phone: [phone]; Fax: [phone]; E-mail: ***@****


Background: Hepatitis C virus (HCV) is associated with pathologic changes in the kidney. However, the association between HCV and renal dysfunction is not well defined.

Design, setting, participants, and measurements: This study estimated the prevalence of renal insufficiency among veterans who received care through the Veterans Affairs Puget Sound Health Care System. The study population consisted of veterans who underwent HCV antibody testing between January 1, 1999, and December 31, 2004, and had at least one primary care or medical subspecialty visit and at least one outpatient creatinine measurement within the 18 mo before antibody testing. Veterans were excluded when they had a history of chronic dialysis, creatinine >5 mg/dl, or renal transplantation. Study data were extracted from the electronic medical record. Renal insufficiency was defined as a creatinine level 1.5 mg/dl. Multivariate logistic regression was performed to estimate the risk for renal insufficiency associated with HCV. Among 25,782 eligible veterans, 1928 were HCV antibody positive and 23,854 were HCV antibody negative.

Results: Although the proportion with renal insufficiency was lower for antibody-positive versus -negative veterans (4.8 versus 6.0%), after adjustment for age, race, gender, diabetes, and hypertension, HCV-positive veterans had a 40% higher odds for renal insufficiency (odds ratio 1.40; 95% confidence interval 1.11 to 1.76) as compared with HCV-negative veterans.

Conclusions: HCV was associated with an increased prevalence of renal insufficiency.

[alagirl]

More Info on Renal Failure and HepC

http://patients.uptodate.com/topic.asp?file=glom_dis/18487

Renal disease with hepatitis C virus infection

Burton D Rose, MD

UpToDate performs a continuous review of over 375 journals and other resources. Updates are added as important new information is published. The literature review for version 15.3 is current through August 2007; this topic was last changed on July 5, 2006. The next version of UpToDate (16.1) will be released in March 2008.

INTRODUCTION — There is a strong and most likely casual association between chronic hepatitis C virus (HCV) infection and glomerular disease [1]. Three principal types of renal disease have been recognized: mixed cryoglobulinemia, membranoproliferative glomerulonephritis (MPGN), and membranous nephropathy [2-8]. Crescentic glomerulonephritis can be superimposed on any of these glomerular lesions. In some patients, glomerular disease may be clinically silent [9,10]. (See "Clinically silent glomerular disease" below).

Glomerular diseases can occur both in native kidneys and in renal allografts. A renal thrombotic microangiopathy and an atypical variant of acute cellular rejection have also been associated with HCV infection in renal transplant recipients. It remains unclear, however, why only some patients with HCV infection develop these complications. (See "Renal disease associated with hepatitis C virus after renal transplantation").

This topic provides an overview of the renal diseases associated with chronic HCV infection, the approach to therapy, and response to therapy. The diagnosis and management of HCV infection, and of HCV-associated renal disease following renal transplantation are discussed separately. (See "Diagnostic approach to hepatitis C virus infection" and see "Treatment of chronic hepatitis C virus infection: Recommendations for adults" and see "Renal disease associated with hepatitis C virus after renal transplantation").

MIXED (IgG/IgM) CRYOGLOBULINEMIA — Mixed cryoglobulinemia is a systemic vasculitis, and affected patients typically present with nonspecific systemic symptoms, palpable purpura, skin necrosis in exposed areas, hepatosplenomegaly, hypocomplementemia (C4 < C3), and renal disease. The clinical manifestations of the renal disease include hematuria, proteinuria that is often in the nephrotic range, and a variable degree of renal insufficiency.

The histologic findings most often resemble those seen in idiopathic Type I MPGN except for intraluminal thrombi on light microscopy and the "fingerprint" substructure of dense deposits on electron microscopy. A crescentic glomerulonephritis may be seen, which may be associated with rapidly progressive renal disease. (See "Clinical manifestations and diagnosis of essential mixed cryoglobulinemia").

[alagirl]

Did your top doc at Mt Sinai tell you that hepc does not just affect the liver but other organ systems in the body as well, such as the renal system and the brain?  Did he ever stop to think that gee whiz, if HCV is affecting this gentleman enough to cause him chronic fatigue, maybe it is damaging his overall health in some fashion?  HCV is a virus.  It affects the body, not just the liver.  It is my personal opinion, and many here will differ, that waiting treatment because your liver isn't damaged YET and allowing the virus to further impact your body in ways that aren't even all known to medical science at the moment is not good medicine.

http://www.natap.org/2007/DDW/DDW_27.htm
Conference Reports for NATAP
May 2007
Causes of Death Associated With Hepatitis B or Hepatitis C Virus Infections in a Long-Term Population-Based Cohort Study

"Author Conclusions
Subjects with HBV, HCV infections and HBV/HCV co-infection had elevated risk of liver-related mortality compared to subjects without HBV or HCV infection

HCV infection may be associated with death from several extra-hepatic manifestations such as cerebrovascular disease (mainly intracranial hemorrhage) and renal failure, which may result from cryoglobulinemia and membranoproliferative glomerulonephritis4,5"

This reiterates what I'm saying about the effects of HCV on the brain and kidneys.  We don't even know what HCV does to other organ systems but if you're tired all the time, there's a reason.  Symptomology does not exist without cause.  I think it is irresponsible for physicians to suggest delaying treatment without damn good reason.  And in your case, I don't see what that would be.  This is my personal view, but one I feel is backed up by the latest research on the extra-hepatic manisfestations of HCV.

It's your body though.

[Raha0024]

I remember when I first ws told I had Hep C, I had no clue what it was and never heard of it (its sounded like a kool-aid drink). Then you start to hear theres no cure and you gotta check your liver for fibrossis. Then you read how you can pass it on to others and you start to feel like your some infected being that the govermnent is going to quarantine in a hep -c island. Then you start to freak out and think your gonna die. The truth is yeah it sucks to hear you have it but dont worry about dying. Ithink 3-5 percent of people die from hep c and 10 percent need a transplant. Out of that percentage a large chunk of those people were also alcoholics and ate unhealthy which definatly contributed to their problems. There also many people that dont find out they have it till its to late.
As far as your family and friends helping you, trust me they care and they just dont know what to tell you. Think about it you have it and you dont even know much about it , how are they supposed to know.
I am not quite sure why you schedule treatment before having a biopsy, maybe you had a ultrasound with negative results. I deceided to wait for a better treatment because my liver is fine and Im young. Im sure your going to a good doctor so take his advise. You should also talk with others who got treatment and they can tell you what to expect. I dont know were your from but many hospitals offer a monthly Hep C class/gathering and that can be very helpful.
     As far as your mental state, yeah your gonna be angry and a little frightened  for a short time its just a normal reaction. I wouldnt dwell on " How did I get it" Im sure you can point it to a few things, but at the end it really doesnt matter ( I got it in the IC as a baby, I would have died if not for the intensive care. I could be angry at the hospital but then again they saved my life, so if I didnt have Hep C Id be dead, I would trade it to be alive). With time you will begin to realize that maybe getting hep c actually could be a positive thing. You pretty much forced to become healthy, who knows maybe getting healthy now will prevent a worse disease in the future. You also begin to realize that life has a lot more to it then the stupid things we think are important. The best way to get through any issue with Hep C is to talk with others who have gone through it already and have advice for you.
   Good Luck with the treatment im sure it will be successful.

[sunspot]

UND is undetectable. It is a point in your treatment (tx) when the virus cannot be found in your blood down to whatever the sensitivity of the test being used.
SVR is sustained virological response. This is usually 6 months after tx and you still test UND. This is what all us heppers want.
"Injection day ", who the heck wants an injection? More to the point, most people on the first shot have strong flu like systems. Chills, mild fever and aches. After the first one it usually gets better but many folks still feel cr@ppy for a day or so after shot night.
Ask all you want to. Knowledge is power.

[JackABCD]

From my own experience, I am stage 2-3 grade 2-3 geno 1b,  try Milk Thistle, better the brand - UltraThistle , it might eliminate the fatigue, in my case it did eliminate almost all side effects of the disease.
Wish the best for you.
Jack

[PRINCESS512]

hi.im new here.i was just diagnosed with hepatitus c  type 2 .im getting my liver biopsy fri.then i will be starting pegasus injections weekly and  a pill called ribavirar,im hearing from other people messaging one another that they basically dred the "injection day "....what should i expect ? how will i feel ? dr tells me type 2 is curable.i have no idea how i got this,and have no idea when i got it.it was found during routine blood work when i told my heart dr i was so tired all the time.also what does the terms  UND  and  SVR  mean ? im getting no support at home and im scared to death.....im 44 years old and want to live ! also dr told me make sure im not depressed or suffer depression before i start this pegasus injections.....as if i was it can make you suicidal.im not depressed, but overwhelmed with anxiety and problems............but i consider it just stressed out and anxiety.ill be grateful for any help anyone can give me.thankyou everyone...........

[viaduk]

sorry, but our posts crossed. I see that the doc recommended that you wait

[viaduk]

You received some good advice already, but I would also add that depression could be causing some of your fatigue. It's great that your liver is in good shape, but learning that you have a chronic and serious disease can be depressing. Getting yourself into a regular exercise routine, as mremeet suggested, will help you in many ways.  I know that it's hard to get up the energy to do it, and it's frustrating to know when you cannot perform at a level that you once did,  but regular exercise will help your overall energy level, mood, and feeling of well being.  ood luck to you.

Did the doc recommend treatment?

[Raha0024]

Thanks for the answer. Im geno 1a (most common in good old america) , just wondering what made you deciede treatment after 24 yrs and what the treatment was. My doc recommended not to do anything and come back every 5 yrs for a biopsy. Also you are able to drink beer that soon after treatment?

[copyman]

yes, fatigue is one of the many symptoms on the HCV ala carte menu. some symptoms will come and go and some come and stay. i find that around 3 or 4 pm is when i'm the most tired. i get a 2nd wind or take a short nap then good until around 11pm. you are young enough that you have pleanty of time to wait for the better drugs to come out. until then eat a low fat, salt,sugar diet. exercise and take milk thistle. take a good multi vitiman WITHOUT IRON. and there are some other supplements that you could add to the mix. some new ones have been discussed here in the last few days. best of luck

[merryBe]

fatigue will get worse with time, then other symptoms will begin as well.
do not smoke or drink at all, and start reading up so you will know the pro's and cons of when to treat and why. Better to treat before age and latter stages creep in, although some are waiting for newer better drugs. Still the only way to make an informed decision is to seek a good hepatologist AND educate yourself. there's alot to learn in here, you will not remain at stage one forever, if you have had it 25 years I would start learning right now, and hopefully this will save you, you family, future wife and children, all some real grief. Knowledge is power.
hope that helps.  you need to find out what genotype you are, what your viral load is, and get a biopsy done.

[mremeet]

I've had hep C for 24 years. I was infected when I was 17, now I'm in my early 40's. During that whole time I had chronic fatigue similar to what you explain (and for years I never knew what it was). It wouldn't always be that bad, sometimes I felt ok. It would come and go. I managed to get by, usually I could function well enough to get my education, to work and to live some kind of life. But yes, I was spaced out a lot and needed to take naps much more often than a person in their 20-30's should need. I found that the very best way to deal with it was to exercise vigorously on a very regular basis, even if you feel like you can't do it. I would ride mountain bikes (or go running) for about 45 minutes a day at least 3 times a week (preferably 4-5 times a week). Also quit smoking if you smoke, quit drinking any alcohol if you drink casually or certainly more than that. Eat a healthy diet filled with fresh fruits and vegetables, whole grains and lean meats. Include foods with healthy fatty acids like salmon and olive oil. Drink lots of fresh clean water. Have a cup of coffee if you like coffee, it's also good for your liver too. If you religiously do all these things, and the fatigue really is being caused by HCV, you will almost certainly feel much better. It wont cure your chronic fatigue, but it should definitely help manage it.

Lastly, I was finally treated last year for my hep C (I'm geno 1 incidentally). I enrolled in an experimental drug trial. It was a tough experience, but long story short I was cured. After recovering from my treatment, and as I continue to recover (now 24 weeks post treatment), I feel fantastic. My chronic fatigue has left the building, I no longer suffer from it. For the first time in nearly a quarter of century I no longer have that awful near constant feeling. I can also drink fairly large amounts of beer without it hardly affecting me now. The only reason I mention that is because it means my liver is functioning normally now. I have normal liver functionality now, and I'm sure that's why I do feel so good and the fatigue has all but disappeared (except for what could be considered normal for a 42 year old). Some people say that getting cured of HCV will not make you feel better, and maybe that's true for some people (especially older folks). But for someone as young as you, I wouldn't be surprised a lick if you snap right out of it if you get cured too. That is IF the thing's that's causing your fatigue is the HCV (a very likely culprit since you do have HCV). Best of luck....

[giddyup]

sorry your do brushed you off. I definatly had hep fatigue at your age. multi vitamins helped a little for awhile giddy