EXHAUSTION

I am a non-responder of my last 2 tx, responded on 1st tx. for over 2 yr. SVR; then it took off again and I didn't clear either time, last time almost wiped all my white blood cells out 5 wks. into it.  My doctor said we could try Infergen, but said it was alot harsher tx. than Ribaviron.  I chose not to treat again.  That was over 7 years ago. At that  time I was told that I had stg 3/4, grd 3/4 liver damage w/ bridging fibrosis.
I had surgery Dec. of 2008, and it seems like I haven't been able to bounce back to my "old-self" since.  I've had multilple infections, have fibromyalgia to go along with very advanced arthritis in my back and other joints (surgery was a left-knee replacement).  I hurt all the time and still work (it helps me focus on something else when I'm there, not to mention pays bills).  I have been on hydrocone and apap 7.5/500mg several times a day for nearly a year I am wondering if that's what's causing me to be so exhausted that some days I sleep 10 hours+ when I get off work, then over 12+ hours on my off days.  I am also vitamin D deficient (know where that's from).
I also take a handicapped sister (blind amputee) out every other week that I'm off so she can get out of her house, and help my mother so the burdent doesn't just fall on her.  My brother was diagnosed with Hep C six months after I was and does absolutely nothing (he stopped working right away and waited 2 years, then applied for disability). I feel guilty if I can't be there for my sis, she is really my "best friend", and had always been there for me before she became disabled.  I am not trying to be a martyr, I just believe that family should help each other.  I picked my sis up today just to go eat and felt "fried" by the time I got home.
My question:  Are there others out there (again, I am not on any tx) who are not on treatment that find themselves as exhausted as I've been lately?  I am also dealing with an appetite loss, any one else?

[HectorSF]

"My question:  Are there others out there (again, I am not on any tx) who are not on treatment that find themselves as exhausted as I've been lately? I am also dealing with an appetite loss, any one else"?

Exhaustion and loss of appetite have many possible causes. Only a doctor will be able to examine you and perform the tests needed for you to know what is causing these symptoms. Have you talked to your doctor about this? What does your doctor say?  In the end they are the only ones that can diagnose the problem your treat you.

I can only speculate...

Hydrocodone/apap - The limiting factor as far as dosage is the APAP — healthy adults should not ingest more than 4 grams (4,000 milligrams) of acetaminophen per day. 2 grams a day for a patient with cirrhosis. Higher doses of acetaminophen are toxic to the liver and will advance the progression of your liver disease.

I assume you are not taking any other meds that interact with acetaminophen or are toxic by themselves to your liver.

You say it was 7 years ago when you were Stage3/4. Have you any signs of cirrhosis? Low platelet count, other liver function test abnormalities? Enlarged spleen? Portal hypertension, etc.? Even if you do have these indications of cirrhosis, many of not most cirrhotics do not experience extreme fatigue (although there are exceptions and some HCV patient do suffer from fatigue) until they have decompensated cirrhosis. Some signs of decompensation are ascites, edema, bleeding of varices, HE (hepatic encephalopathy), etc.

Anemia is a major cause of fatigue in patients with cirrhosis. Again, it will take a blood test given by your doctor to know if you are anemic.

Also symptoms of fatigue and loss of appetite are common symptoms of clinical depression. With all the stress you have been under this may be another possibility. But I am not a doctor. You need to consult with you Primary doc or GP as they are the only one who can examine and diagnose the cause of your symptoms.

Best of luck to you!
Let us know what you find out.
HectorSF

[Bill1954]

Fatigue was a big issue for me, and was probably responsible for my eventual diagnosis. I was also stage 3-4; I think that perhaps later stage liver disease might be a factor? Although I’ve spoken with others with similar fibrosis that were completely    asymptomatic…  I was working out of state, and found myself having to take naps by midday, while others were hard at work. Whether or not your painkillers are playing into your fatigue is something your doctor might be best suited to answer.

There are new drugs that will hopefully be available later nest year; have you discussed the protease inhibitors with your doc yet?

Best to you—

Bill

[djbn13]

My heart goes out to you and everyone else.

[HectorSF]

"My question:  Are there others out there (again, I am not on any tx) who are not on treatment that find themselves as exhausted as I've been lately? I am also dealing with an appetite loss, any one else"?

Exhaustion and loss of appetite have many possible causes. Only a doctor will be able to examine you and perform the tests needed for you to know what is causing these symptoms. Have you talked to your doctor about this? What does your doctor say?  In the end they are the only ones that can diagnose the problem your treat you.

I can only speculate...

Hydrocodone/apap - The limiting factor as far as dosage is the APAP — healthy adults should not ingest more than 4 grams (4,000 milligrams) of acetaminophen per day. 2 grams a day for a patient with cirrhosis. Higher doses of acetaminophen are toxic to the liver and will advance the progression of your liver disease.

I assume you are not taking any other meds that interact with acetaminophen or are toxic by themselves to your liver.

You say it was 7 years ago when you were Stage3/4. Have you any signs of cirrhosis? Low platelet count, other liver function test abnormalities? Enlarged spleen? Portal hypertension, etc.? Even if you do have these indications of cirrhosis, many of not most cirrhotics do not experience extreme fatigue (although there are exceptions and some HCV patient do suffer from fatigue) until they have decompensated cirrhosis. Some signs of decompensation are ascites, edema, bleeding of varices, HE (hepatic encephalopathy), etc.

Anemia is a major cause of fatigue in patients with cirrhosis. Again, it will take a blood test given by your doctor to know if you are anemic.

Also symptoms of fatigue and loss of appetite are common symptoms of clinical depression. With all the stress you have been under this may be another possibility. But I am not a doctor. You need to consult with you Primary doc or GP as they are the only one who can examine and diagnose the cause of your symptoms.

Best of luck to you!
Let us know what you find out.
HectorSF

[Trish77]

You say it was 7 years since you last did any kind of treatment.  The level of knowledge of doctors treating Hep C has increased over that time and I would suggest that, if you haven't, you look for a doctor out of a major teaching hospital who is experienced treating Hepatitis C and go for another opinion on what your options are these 7 years later.  There are some interesting drugs in trial at the moment and also to hopefully hit the market in the next year or two.  There are also some things known about how to manage the drop in white or red blood cell counts that often happen while on treatment, some auxiliary drugs that can help manage that so that treatment can be completed and hopefully with a successful outcome.

I don't know what your options are for being able to see a doctor but if it's been awhile since you've had a really good assessment of where you're at and what current options are available to you, I would do that.  

You have a tough situation to deal with.  Sounds like your family is lucky to have you and would be nice to keep you around for awhile.  Please take good care of yourself.

Trish

[farmer67]

i was just dianosed with hcv my stomach was hurting real bad and i went to hospital
my spleen was swelled  ihave arthritis and fibromyalga (fibromyalgia)
i take hydrocodone for pain
the doc told me i cant take hydrocodone it was causing problems with liver
that maybe causing some of your problems
hope this helps
good luck to you
farmer67

[yellarose]

Hi!  I keep getting emails to "choose" the best person (answerer) that answered my questions.  How do I do this?  I haven't seen a link or anything to do that, and I'm still becoming computer "savvy" :-)

I can say all of the answers were good, so it won't be easy.  I love reading the posts here and think this is the most supportive, positive forum I've seen in 11 years.  It's great to see so many fellow heppers "hanging together" sharing the good and bad!!

Keep it up, you all are great!   Rose