Hepatitis C - ALT at 7 million - Treatment or No Treatment?

[family4ever]

I have been living (existing) with Hepatitis C for years now, 49-year old female, had to quit job, totally exhausted, was married to an ex-drug user. My recent blood work showed that my levels (ALT levels I think) were at 7 MILLION. My doctor referred me to a gastroenterologist who only told me I needed to decide to treat or not to treat. What will happen if I choose to NOT take treatment? I've read about all the side effects of treatment & frankly don't want any part of them but before I make any decision I would like to know what my life will be like if I deny the treatment & the virus keeps being as aggressive as it is lately. The symptoms I'm living with now are total exhaustion, itchy skin, nausea, vomiting & diahrrea at times, constipation & cramps at other times, insomnia at night, hot sweats, cold chills, memory not so good anymore, weight loss (I was 94lbs now 114lbs by drinking protein drinks), no appetite & everything I eat makes me sick most of the time. Once in awhile I have a very good day. I can only do so much in a day & have to rest or nap regularly. Depression of course is added because I've always been an independent, self-sufficient woman. Anyone who can tell me the PROS & CONS of treatment or no treatment please write. Also if anyone knows of websites where people with Hep C talk so I can maybe question those who chose treatment & those who denied treatment. I want to make an informed decision. My family doctor said it's time to start treatment, the gastroenterologist said for me to decide & let him know. He gave no info except pamphlets.

[Laika]

Good for you!  Sounds like you're on the right track.

Everyone will tell you the biopsy is not a big deal.  I was terrified too...really, I should have had a sedative or something beforehand, as I am an excitable girl.  But I didn't, and instead just got a nasty headache from trying to suppress my angst.

Most of the time these days biopsies are guided via CT, which are much safer.  They give you a shot in the side, novacaine type stuff that burns for a minute.  Then the biopsy itself takes about 1 second.  They usually have you lie flat for a few hours afterwards to make sure all is well before you go home.

Laika

[family4ever]

Thank you all so very much for your responses, not only with medical info input but for your encouragement, positive outlook, & friendly support. Since I was not happy with the gastro doctor I will find another doctor who specializes in treating Hep C & I'll know more of what to ask now. I'm sure I will have a liver biopsy & I will certainly find out my genotype ASAP. In 1984 I was hospitalized & told I had Hepatitis Non-A/Non-B. I was released a week later & told my antigens turned into antibodies (or something like that). Never gave it much thought through the years. I've been living with this virus for 22 years. I was married to a man who was a heroine addict in the 70's, clean when I met him in 1981 but still I ended up with this dreadful disease. He was diagnosed in the 90's. I shared everything with my husband, including razors to shave, nail clippers, etc. I didn't know any better then. I did have my 3 children, my son-in-law & grandson tested & they were all okay. I'm sure they'll be tested again in a few years just to make sure. I am terrified of a biopsy! My ex-husband's sister died from Hep C only a few years ago & she's my age. She was a drug user with her brother & drank a lot through the years. I guess I thought since I don't do drugs or drink that my liver can't be damaged much & I just have the virus. I'm sure learning about this virus fast. I'm reading all I can to educate myself like you all suggested and I will make sure I ask the appropriate questions when I see the doctor. I can't tell you how much it meant to me to see all the posts from so many caring people. I will utilize the support you give & let you know when I find a doctor, what he says, my genotype & anything else to keep you informed. Sounds like so many of you are very brave souls & definitely not quitters. I applaud you! I hope your treatment flies & you reap only success. Thank you all from the bottom of my heart.

[LvdByGod!]

you know most of us have not been through end stage liver disease personally, but i did watch my mom die of it and it is very scarey...i don't want to scare you but the symptoms you mention get really bad...and those who go on to endstage can't function at all anymore...they get enchalopathy where they loose there ability to think clearly and eventually just need to sleep all the time...they can get acseties where the fluids leak out of the veins into the abdomin and you blow up with edema...this sometimes causes hernias that leak...they have a lot of stomach pain and other pain...they get infections of the abdominal fluids...and other illness' from the cirhosis complications...they can get esophageal varises where the blood vessels in the esophagus enlarge and can burst open and you can unexpectadly bleed to death...they can get liver cancer which is what eventually got my mom and she was in a lot of pain she thought her back was broken but it wasn't...then at the end of all the pain is death unless you are one of the lucky ones to get a transplant...

these are some of the reasons to treat the disease before it gets bad...please do a search on "end stage liver disease complications" and you will find alot of reasons to go on treatment...

none of us like treatment but the consequences of not treating are much worse than the side effects of the treatment...and remember the side effects are "livable" and most go away...liver disease only gets worse and it ends in disaster...

i pray for you for your decision...please check out these sites for more info on cirhosis and end stage liver disease.

http://forums.delphiforums.com/liverfailure/start

http://janis7hepc.com/index.htm

[Laika]

I am a 58 yo female starting week 10 of treatment.  I was diagnosed in 2000 and was too afraid to treat, trust what doctors said, or get a biopsy.  I felt ok, so I figured I had some time.

When I came here, I understood that I simply did not have enough information to decide anything without a biopsy.  I braved the biopsy (which was no big deal except in my mind). It came back stage 2.  (stage 4 is cirrhosis)  This made me understand that to allow further liver damage would bring increasing symptoms, incapacity and places I didn't want to go.

I also understood from the smart, experienced & helpful people on this forum, that I was the "lucky genotype" -- type 2.  That I would only have to treat 24 wks and my odds of cure were the best.  That age is not on anyone's side with this, so sooner was better than later when it came to treatment.  24 weeks sounded like a long time to me, and I was truly afraid of everything.  But I come here every day and see great courage.  I see the genotype 1's doing their long stretch and people with advanced liver disease battling away and taking their best options.  It gives me strength.  Even if I didn't have these lucky things on my side, I would still have gone forward to take my best option in defeating the hepC virus--which is to treat.

So, like everyone says...get a biopsy.  Start requesting copies of all lab work, biopsy report, etc.  When you come here to ask questions, you need to have your facts handy!  You will find as you go along, that the more you know, the more questions you may have.  Of all the irregularities on your lab work, the main ones to concern yourself with at this point are:  from biopsy report:  STAGE (degree of liver damage), from blood test:  GENOTYPE (defines how long you will treat).  The STAGE by itself may be enough to make you decide to treat.

Other considerations:  #1 How can I be MOST ASSURED of having a successful treatment?  (Answer A:  it is important to have the right doctor.  Come here and ask how you can be sure you have the right one.  Answer B:  a lot is up to you.  It requires commitment.)  #2  What can I do to decrease side effects of treatment medications?  (Answer A:  most people feel like the Pegasys-Copegus combination is easier on you than the other medication option (name escapes me right now).  Answer B:  Come here and get advice for remedies & meds that will make you more comfortable.

Welcome to the forum.  You will find hope and strength here.

Laika

[rearfang]

I agree with all those who have responded to you so far. I am going to begin treatment in less than a week even though I feel fine. What I have learned from all the knowledgeable people in this forum has convinced me that trying to rid my body of this virus is my best course of action. The symptoms you are experiencing sound like the side effects of the treatment, so if you're going to feel like s*%#, you may as well be trying to get rid of the virus while you're at it! Good luck, and welcome.
Lauren

[layla]

Yup a biopsy is in order. The other thing to remember is that for some reason after the age of 50 the progression of HCV often increases. LL

[doll face]

I know that I am just repeating what everyone else has told you, but you have NO idea how damaged your liver is until you get a biopsy. Also you need to know what genotype you are.

I treated twice, the first time was extremely hard, but never thought twice about doing it again when I relapsed. I have watched a friend die from liver disease. It is NOT something that you want to go through of put your family through.

The best advice I have for you at this point is to get the biopsy and find your genotype, inform yourself as much as poosible and write down any and all questions that you have for your doctor and see what he says.  There is a whole lot more than for you deccide to treat or not and if he is not willing to explain to you and do the necessary  tests(biopsy being the biggest concern) than I would find another doctor. Also you need to make sure that he is willing to treat you for the sides like low blood counts (with procrit or neupogen) an if necessary antidepressants, and pain medication instead of cutting your hepatitis meds

Good luck to you. I will be checking in to see how you are doing.
Kim

[chellski]

i am 48yof - type 1 - vl 1mil.5 - my biopsy showed "2"
only symptoms i had were fatigue, incredible itchy skin and rashes that had gone undiagnosed.  i'm on my 3rd wk treatment and i was diagnosed 2 months ago.  my symptoms of tx are not nearly what ur experiencing now.  same as i had b4 only now nausea, lightheadedness, CRANKY, headaches, forgetfulness, the fatigue is not as bad, itchy skin still as bad, did i mention that im incredibly CRANKY????!!!!
i don't often post, except for my orig questions, but i come here every day and read.  I receive great comfort from all my fellow heppers, people here especially longtimers do not get tired of repetitive ques., and are most sincere. Very important to me because i have NO emotional support, my husband died 2yrs ago and everyone is still grieving and cannot deal with another illness so it seems they ignore it. My supportive "family" is on this msg board.
love and thanks to you all, if i havent said thank you enough.
<3 michelle

[cigaso]

This is one of the best sites for support and knowledge. This is a patient forum, so most of the imformation comes from personal experience and clinical documentation from this and other sites. There are some really caring people here who post the latest findings on tx and future txs. From my own experience it is very helpful. I didn't know I had HCV, but I had one sympton you had, itchy skin. Revenire, Scruffy and Whoaisme have been on this board for a long time. They're in the process of kicking this thing. Through my experience I found their answers to be dead on. You must get a biopsy to find out how much damage. Revenire is right, with your symptons you've got something going on you need to get checked out and the only way to know is a biopsy. If this helps, I am a 51 yom dx in 11/04 with HCV (had it over 35 years), genotype 1b, vl 2.5 million and biopsy=grade 2 stage 1. After reading all I could and staying on this board I decided to treat. I'm in my 5th week. It is no picnic, but I don't want to take any chances passing this on to my family or having the disease progress and destroy my liver.
There are some real fighters here with lots of support and input. I wish you the best.

[scruffy]

If in doubt get a biopsy. It does'nt sound as if you can afford to wait judging by symptoms. Good Luck. frank

[whoaisme]

Hello and welcome to a place where you will find lots of supportive and informative people. It sounds as if you have been dealing with a lot of physical symptoms and its time to do something about them! I am not a doc, but I would guess that the 7 million is related to your viral load, which as scary as it sounds- being in the millions is not all that unusual. Have you had a liver biopsy? That is generally,for most, a determining factor in whether or not to treat.Obviously the decision will be yours to make. This forum will feed you with lots of information for you to sort through. The side effects of treatment vary, some do quite well, with little effect, and others do not fair as well. No one can say which side you will be on. Most of the side effects can be treated with other meds, which some choose not to do as well. Its a very personal choice. it is also important to consider what kind of support you will have, emotionally and physically, as well as remembering that the treatment is temporary. Do you know your genotype? That also dictates the length of treatment. This is just the start, read all you can and ask away. Good luck with finding your answer. Su