Hep C Newby Questions

Hi All...Man this is devastating.  I've NEVER been exposed to the virus thru all the "normal" ways.  Never took injection drugs, same sex partner for 31 years, no piercings or tattoos and no IV's...Nothing that I can think of.  As far as I can remember, my bilirubun has been slightly elevated but last week my doc sent my blood off and it came back positive for Hep C.  My quant and genotype tests are being conducted now and expect answers soon.  What type of symptoms have some of you experienced?  I know this is supposed to be the silent killer but you'd think something would tell you that your body is not right.  I have had slight headaches and and acheing in my LEFT lower back area (kidney or muscle, I can't tell) for several months.  I have been a little tired but nothing that holds me back from working.  How painful is the biopsy and how is it performed?  What are the side effects of treatment and what are the experiences of some of you that are on the treatment and over the treatment?  Have any gone thru the treatment and NOT been "cured"?  Please help with answers and I'll be happy to discuss this with anyone.  May God bless all of us!!  James

[Dale_Ray]

James, I had a blood transfusion in 1977 and other than that I wouldn't have a clue where it came from. Doesn't much matter anymore it's here and I have to deal with it. Avoid Alchohol! I'm on week 13 of 48 and it just depends on which week you catch me as to how bad the sides are. I've had about five good days in a row so far other than joint ache and food intake problems. Energy is not something you will have during the treatments and that seems to be true for each of us. Make sure your doc gets you on anit depressants before treatment. I was going to be big tough guy and not take them believe me I needed them to cut the edge. Demand that you be sedated for the biopsy or at least I would if I did it again. It's hard not to jerk when they are shoving a needle between your ribs. I tried the treatment in 1996/1997 and it didn't work but the new drugs are suppose to be better so I stated treatment again this past November. The sides have been worse this time but I am older too. I don't really know if I could handle it without my wife. She has been like having a grandmother doddle over you when your a little boy. With the brain fog this stuff causes you have to have a clear thinker near you. PS I talk to God a whole lot too. Dale

[Alady1620]

Sorry about your diagnosis.  Before I knew I had hep c, I had severe joint pain.  One time, I had to be hospitalized because I couldn't raise my arms or lift my legs.  Other than that, no symptoms.

[NYgirl]

I'm sorry that you have had this horrible news. A lot of us in here really have no idea how we got this disease and were just as shocked as you.

However try to think of it this way - at least now you know you have it and you can take care of the problems that come with it.  Living in ignorance while having it...that is much worse.

Once you get over the shock you will be able to see this is not a death sentence and there are medications that can CURE it.

Best of luck, you are not alone.

[GoofyDad]

I'm another one who doesn't belong to any of the typical 'high-risk' groups. But, no need to dwell on how we got it.... it just doesn't matter. It is what it is, as they say.

Try to relax until you get more blood work and your biopsy. Was the intitial test for the HCV anti-body? If so, it's possible that you were exposed, but your body fought off the infection.

Anyway, this is a very slow moving disease, and there's no reason to panic. It mnay seem devestating now, but it will be much easier to come to terms with moving forward. There is every likelyhood that you will live a long and productive life. This is but a bump in the road.

BTW, I've had no outward symptoms that I identified as being HCV related (after the 2 week illness when I contracted the virus years ago).

Stick around. You've found a great place to learn more about your situation.  

[friole]

It is devastating to find out, isn't it.  It just takes awhile to sink in that we are not invincible, especially when we feel just fine. I am 58 and have never had symptoms - except maybe tiredness - and always had normal liver enzymes.  You need to wiat for those other blood tests to know for sure if you have an active virus.  If you do, please post the results here and we will help.  Welcome to the forum.  THis is a great place to learn and to feel safe in.
frijole

[jmjm530]

You may not have hepatitis C. Testing positive for the antibody just means you were exposed to the virus in the past, but about 20-30% of those exposed to the virus clear it on their own and therefore do not need treatment. Your quant (PCR) test will tell if you're one of the lucky ones. No need to worry until you get the results back. Let us know how things turn out. Good luck!

-- Jim

[NYgirl]

What you said is so true - finding out we aren't invincible.

It seems such an abstract thought as we go along through life but it IS an eventuality that it will happen SOME DAY.  it's things like this that really make you look at yourself and say wow...this body IS mortal....and it will give out someday.

Since almost all of us will eventually die of something other than HepC we are lucky in respect to the fact that if we have to have a disease...it's this one.

Hard to believe to say lucky to have it but...I'd rather have this one than many many many of the others.

[friole]

kind of odd that your question got lost in a post that was headed, why don't people come back.... sorry about that -- the thread got maxed out, so I have copied your post here:

"Hi, I may be one of those who didn't come back. My husband is on his third week of treatment. In the beginning I think there is just to much information to take in all at once. All of you were incredibly helpful. I check this site every day from work and find incredible support and information. My husband seems like he is having the life sucked out of him. Nausea, dizzyness and severe headache. Any suggestions?"

Okay, sideline, welcome to the forum, or welcome back to the forum.  My first thought when I read your post is how much water is your husband taking in?  In all reality he should be drinking at least an ounce per every 2 pounds.  I try to drink a gallon a day, but don't always make it but do try for the ounce per 2#.  Dehydration is a problem that plagues us with these drugs.  He also sounds like he may be getting anemic -- at least "having the life sucked out of him" sounds like anemia to me. That is serious and if he hasn't had a CBC please call the doc and have his labs drawn right away. The number you are looking for is the hemoglobin count - hgb.  Make sure you get copies of all lab work and if you haven'g, get all copies of everything to date.  It is your right.  I typed a letter for the doc to get my hubby's labs (he does not have hep C, but just in general)which my hubby signed.  Please post your husbands stats for us if you can-- VL and biopsy, especially.  Hopefully you will see this and get some better response here
frijole

[GoofyDad]

Second what friole said. On the nausea, ginger roducts can really help, believe it or not. Strong ginger beer, ginger snaps, or I like a ginger syrup from the Wholefoods store.

Also, the doc might prescribe a PPI, (like the little purple pill?) that can help. The nausea seems to come from the ribavirin, and will often settle down in the first 4-6 weeks.

Taking the riba with food helps too.

[NYgirl]

Sorry that your post got missed in the middle of all of the others.

Friole has given you EXCELLENT advice above. I know for me the anemia started between weeks 3 / 4 I believe and it TOTALLY sucked the life out of me.

Having a weekly CBC and Hep Panel and getting copies of ALL of the paperwork (it's usually only like two pages) can really be a lifesaver.

I found that after my results come back it takes about TWO WEEKS for the doctor to get a letter to me! So what I do is have the blood test and then the next day I call and have them FAX ME directly.  Then I can see what is going on RIGHT AWAY!  When I didn't understand I posted in here and the guys helped me learn.

That really helps a LOT.  Nobody will care more about your husbands results than you will.

As time goes by you will learn that sometimes we need to be much more foreceful in getting answers and help than you would think necessary. But...it's hard to remember we are not the only patient that the doctor has you know?

Best of luck.  Keep posting and as Friole said giving more information will get you better responses.

I would have the hemoglobin checked and monitored on your husband for SURE. The rescue drugs work GREAT but they do take time.

[NYgirl]

PS When my anemia kicked in - I was dizzy and kept passing out. Ask him if he has any ringing in his ears or shortness of breath also.

but please get the CBC done so if needed they can get him on the procrit or epogen asap cause they do take a while.

[mare52]

Greetings...dragon slayer returning after shot 8 saturday night. I am unsure how to "toggle back and forth" between pages to include thanks to all who welcomed me "the former lurker" during my 1st brave post here on Saturday! I hoped I could add all of you names here but I am still retarded in my posting development here as of yet. (I did notice I missed quite a few spelling errors in my 1st post, after I had *thought* I really checked in advance too)...
Tiger...I did not have any symptoms prior to elevated liver levels on a "routine blood test" July 2005. My levels doubled, tripled, quadrupled within 3 weeks time. My internal medicine person was worried & thankfully followed up. I was positive for Hep c!(I was totally transfused due an RH factor birth that almost took my life.....dodged that bullet BUT gained this virus).I now spend most every moment obsessed with the "world war" that is being fought within my own body. I have side effects every day BUT I have my eyes on the prize I shall gain at the end of treatment...either make this virus "look invisible" OR know that I did everything currently available to fix myself.
Sore throat is a real constant issue for me. I drink all the suggested ammounts of water/fluids but sheeze! I found that sugar (real or artifical) was totally trashing my ability to swallow properly.
{Ahhhh GUYS this has nothing to do with the super SUV HUMMER~~LOL}.
sorry, got silly there. Back to swallowing, this weekend after my 8th shot I froze the smallest size "juice box"~4 oz., just pure fruit juice, then carefully cut off the top & squeezed the frozen juice up like a popsicle. NO SUGAR NO SORE throat after having it JUST relief. I am now in love with my Amana fridge/freezer. Got a whole anally organized camp of kiddie juice boxes to take the place my unused forever beer mugs! Sure do miss my Elephant beer though...<sigh>

[NYgirl]

Oh boy you fit right in here.  Thanks for making me laugh.  Some of us are a bit uh rowdy at times...and you will be a great addition for our side :)

Anyway it sounds like you are doing REALL well with this fight oh slayer one.  You have the attitude to really fight and that makes the difference.  Like me you just seem toooo stubborn to keep these creeps in your body too.

I don't remember what geno you are....if you would remind me I will try to remember but you know - spelling mistakes aside - we are all a bit brain dead in here.  But at least we all know how that goes.

Best of luck with the sides battle - don't forget to always keep a good eye on your CBC cause that anemia smashes up on you and is a killer ack.

Debby

[can-do-man]

Hello and welcome, Good to see someone else with a sense of humor. Best of luck to ya
________________________________________________________________Ny girl says... Some of us are a bit uh rowdy at times.

Yes you are girl, sometimes i have to shut my eyes and cover my ears. But your doing better today though.

[mare52]

Thanks I am type 2B. 8/24 weeks (said right?)
ouh gotta fly the DVD "Flight Plan" (Jodie Foster)
is starting now in my living room. I smell POPCORN!
Mary Ann
be back soon there are so many individual topics I have not even looked at yet. This place sure is active>>>>>>>>>>>>zoom

[Tallblonde]

Hi James,

There are quite a few of us here, including myself, who did not contract this disease from what's commonly referred to as "high risk" behaviors.  I had a hard time coming to terms with that when I was first diagnosed two years ago.  I guess I somehow felt that I didn't "deserve" this.  I wish I could say that I'm totally at peace with it now, but that wouldn't be quite truthful.  However, it is what it is -- and there's nothing to be gained from being constantly bitter about it (although some here might argue that my bitterness does show at times).

You are just at the beginning of a journey that isn't all bad.  Although no one would wish a chronic illness of any sort on their worst enemy, I think you'll discover that there are "blessings" that come with this sort of situation.

I guess what I'm trying to say is:  Don't be afraid.  It's going to be okay.  You're in the toughest part of the journey right now -- the dark, uncertain part where you have no idea what kind of damage, if any, your liver has sustained.  I remember being absolutely convinced that the biopsy would reveal Stage 4 damage.  All that worrying I did was for nothing because I'm barely at Stage 1.  So try not to let fear control you.  Even if the biospy result aren't great, there are still many options.  There's much to be hopeful about.  

Welcome to our neck of the woods.  I hope you'll keep us updated.

Susan

[jonnyhep]

Hello all,I've been reading....it helps.
It looks like B and highly probable C for me...Man,what a mind blower! I start testing again next week,My first bloodwork results were told to me last week,my mind has been in a cloud since.I'm another who didn't have a clue about this.I will post again when I have definates,I need all the info I can get. Still learning
Jon

[jonnyhep]

BTW,the name I chose "jonnyhep"....well,I have to joke a little,even if only at myself,or I would surley lose it. :)

[Mister beagle bailey]

Welcome, I to am a 2B and did my 8th shot Sun., seems we are tx buddies.  How are you doing with it all?

                Beagle

[kayli12]

Sorry to jump in here but I have a question to all of you on tx.  I went to my doctor Friday, I am starting tx on 3/17.  He gave me a prescription for insomia and also one for fatigue but I was just reading on this site that someone was told to get a prescription for anti-depresents before I start tx.  Has everyone here done that.  I want to make this treatment as easy as I can.  I know I have a very long road ahead of me but I want to be as prepared as I can.  Is it ok to wait to see if I will need that or should I be on them now.  I am trying to get all my "ducks" in a row before I start.  Any tips will be so appreciated.

Thanks

[NYgirl]

Kaylie

Yes I started the ADs a month before treatment. A side effect of the Interferon (about a 1/3 chance) is that we can become totally suicidal and have all sort of problems like that.  I have never taken one before but have found it to be MARVELOUS (once I got used to it at first it made me kind of lethargic LOL).  I've found the Paxill to be REALLY great.

I also am on the Ambien for sleeping (the riba hops us up) and it has helped.  A prescription for lethagy? I'd be intersted to know what THAT is cause that is something we ALL BATTLE constantly!

Best of luck........keep on posting it's the best way to learn everything you can without having to read every single post like some of us completely obsessed do!

Mare-

Oh we'd get along fine.  TV and movies have become my LIFE while on treatment...my remote is my new best friend! (And my Tivo!)

the things that make treatment tolerable are the best things of all!

PS I am glad you are a 2 that's a great number to have isn't it? Im a One A and One B both so believe me when I tell you I am QUITE jealous of you!  ;-)

[can-do-man]

Hello and welcome, hope to see you post more. try not to worry to much about the b and c thing. Heck my grades never were to good either. Oh forgive me i see now, its that hep thing thats going around here.

No serious, glad to see you post and do let us know how things are going. And i like that jonnyhep title. Good luck to you and do keep that sense of humor.

[can-do-man]

Welcome to all, allways glad to see more posters. Just jump right in. Best of luck to you all

[NYgirl]

Cuteus my doctor perhaps mistakenly explainned this scenario to me but he said that 1/3 of patients on Interferon need to come off because of serious depresseion leading to suicidal tendancies.  Right then is when I decided to go on the Paxill asap. Started it that night.

That is why they go so deeply into whether you have ever had any problem with depression before he told me. If I had - he would NOT have let me begin treatment.

That is what I was told.  Perhaps he had skewed the info to get me to take the AD but unlike the "all skinny patients achieve SVR ****" I'll admit I could have misunderstood it in my nervousness.  


JonnyHep

Can I call you JonnyCat?  Were you ever a musician - it sounds like a musician to me "JonnyHep" and the Hepcats.  I guess we girls are the HepCats ;-)

A few of us in here are pretty rowdy with our senses of humor...today I'm trying to be good...but I'm not always!  So Ithink you will fit in just fine with us in here :)

Keep on reading the forum - it really taught me EVERYTHING i can't tell you how GREAT it is to be knowledgable on a disease that you have. It empowers you and really helps you feel so much BETTER. Also knowing other people in the same boat...wow I can't tell you how much THAT helps.

But you will know in ADVANCE and that will really help you to feel that this disease doesn't have you by the b0lls.

I don't know about you...but I want to be in charge of myself as much as possible LOL

Knowing you have this is a good thing.  Because you KNOW you can GET RID OF IT.  Not knowing........not so good......just a slowly progressing disease eating and eating and destroying our livers.

We ARE lucky to know we have this. Even though it sucks we do.

Debby the HepCat

[anise]

I did not take an AD before treatment.  My doctor wanted to see how I would fare and then make a decision on which AD to take.  I mentioned that it might take 2 weeks for the AD to kick in.  She said in that case they would prescribe me a valium, etc. until it did kick in.  Hope that helps.

[OnAPrettyPoison]

I have not gotten on AD and I am week 27/48, genotype 1A, clear at 12 & 24 weeks! : - )  That is worth all the aggrevation of taking treatment!  I even went to see Mardi Gras in New Orleans yesterday and came back today.  Still fun - especially to watch totally sober!

[cuteus]

nygirl! 1/3 can become totally suicidal!!??? ahem! Please rephrase that! it sounds mighty scary! ;-}

leisure reading

http://www.oasas.state.ny.us/AdMed/pubs/FYIInDepth-HepC.htm
http://www.biopsychiatry.com/interferons.htm
http://www.medicinenet.com/interferon/article.htm
http://www.janis7hepc.com/treatment_help.htm#adh

ADs are not a must for most people treating, but an evaluation for mental health fitness is a good idea. as well as a neurological, cardiac, vision and endocrinological evaluation. to have a good baseline of your pre tx status.

[bwave2u]

hi all. sorry james. just stay calm, i know thats hard to do. research as much as you can. my symptoms went on for yrs. unexplained daily fevers, chronic migrains, gi troubles, joint pain, yada, yada, yada. it wasn't until I went to a blood drive at my church that I finally found out. i went on iterferon a for three months, it made me too sick. i waited till they came out with the latest meds and i started 48 weeks on peg/reba. i cleared it pretty fast. by the way i'm a 1a. i made it thru the 48 weeks but the tx made me very sick. I am in like the 1% chance of severe sides. any way after the 48 weeks and clearing i went off the tx. two months later i started feeling like **** again. went back to the dr, he ran the qualt and sure enough It was back. i had another biopsy. the biopsy isnt that bad at all. it didn't hurt, just a little pressure, no big deal. i was what they are calling a rapid return around these parts:) from the first biopsy i was stage 1 grade 2 bridging fibroses, but because the hcv came back so fast, atleast this was what i was told, the 2nd biopsy came back stage 3 grade 4 cirrhosis. now i am on peg/copeg. i am on my 56th week. just remember not everyone has the same sides, and some are worst than others. I wish you all the strength,and best wishes. to me strength is key. just when you think you can't make it thru another day just push thru. youll be alright.
isn't it like 1% chance of suicidal thoughts?
my dr wasnt too happy with me, i had been sick, my dad had a seriouse heath problem, it was one of those times that what ever could go wrong went wrong for like 3 months. i blew off going to see dr but when i finally did he wasnt too pleased. frankly i had been very sick just befor the app, had been running 106.6 fever. so i dont remember too much except him yelling at me that i should have been in the hospital and i could have died. something about one of my blood counts if it goes under 500 it could kill me? i dont remember what he was talking about so if some one could help me read this blood work so i understand i would be greatful. wbc-1.5, rbc-2.29, hgb-7.6, platelet-40, nrbc-0 (??) poly neut-21, lymphocyte-61, monocyte-12, abs poly neut-.4
abs lymph 1.2, reactive lymphs-1, abs react lymph-.0, anisocytosis 1+, macrocytosis 1+, teardrop cells 1+. is he going to put me in the hospital and take me off tx? i am so determined to make it thru the 2yrs they figure it will take to kick this hcv. i will be devistated if I have to stop. take care all. i havent been to this sight in a while, it feels good to talk to people who know what we are all going thru. take care james:)

[jonnyhep]

Thanks can-do,on the grade thing,this is one time I'm glad I don't have any "A's" ;-)
nygirl-you can call me anything you want,just don't call me late for dinner.lol...a week or so ago it would have been "dinner and a drink"...but,....well you know the drill.
A question for all,as best as I can tell,I've had this virus(s) for 3 yrs or so (signs and symptoms...mainly fatigue,now the ever present baseball under the rib).Has anyone experienced,before treatment began,a change in mental status before they actually knew what they had? for me the physical change was obvious,but mentally I thought I was going insane,I mean,unclear thinking,sleep pattern changes and extreme fatigue...lol i thought it was just how getting older was,yes i've always been crazy,the insane thing scared the hell out of me.
so yes, i'm very glad to finally know there is a problem to resolve
physically...somebody pleeeaaassseee tell me i can be cool being crazy,and i'm not going over the "edge".Any thoughts?
Keep on smilin'
jonny

[TigerMan]

Hi again.  Been doing a lot of reading lately.<S>  What's the success rate using herbs, like Milk Thistle,etc?  IF SO, WHAT name brands are the best?  Also, wondering about the different makers of Riba/inter, etc. AND PRICING.  Where is the cheapest place?  I've heard that u need to rotate needle sites.  Where seems to be the best location and why?  My big concern is not for me but for my wife of 31 years who will be tested soon.  I want to be as informed as possible and get on with the program.  Quicker on, quicker off..... What other meds do you need,  etc., Ambien, paxil, anemia meds?, etc.  I know a lot is wait and see, but I want to hear actual experiences from you.  Reading is one thing but talking it out sure is alot better.<S>  One more thing, I've been told there are non invasive bio testing available.  Anyone had this done? Should I insist on the VERSE treatment.  Thanks again to everyone.

[can-do-man]

Hello, Wow you went from stage 1 to cirrhosis that fast? So much for tx. slowing or reverseing damage. Best of luck to ya

[Tallblonde]

http://www.labcorp.com/services/hcp/hepatitis/

This link will take you to Labcorp's tests related to Hepatitis C.  If you scroll down the page, you'll find a link for the Fibrosure test.  This is a relatively new blood test that uses several markers to stage and grade fibrosis and inflammation.  Quite frankly, I wouldn't advise using this in place of a needle biopsy, since there's some debate about its accuracy when severe fibrosis is involved.  It's better to use it in between biopsies (which are generally performed every three years when you're "watching and waiting" until better treatment procotols come along).

Susan

[NYgirl]

Wow - that really does change a great deal of opinion on the "waiting to treat" factor if indeed you went all the way to 4 that fast.

I'm all for tx to kill this disease...and reading THAT I am glad I am.

BEST of luck, I am so sorry for this long hard road you are on.

[can-do-man]

Sounds to me the tx. caused the virus to accelerate.

[verav]

Hi,

First of all, I will apologize for my language.  English is not my first language, so I will have a lot of mistakes.

But, what I would like to tell to everybody that there is a very good syrop, MILK THISTLE.  It is reparing and regenerating the cells of the liver.  It is extremely helpful.

Here you have the site: http://www.ahrq.gov/clinic/epcsums/milktsum.htm

A know other people who use this herbal medication and they feel very good.

I am sick for a lot of years, and my liver is affected very badly.

Other kind of energy you can get from green tea or black tea.

Good luck,

Vera

[cuteus]

how long before your last biopsy was the first one? what was the span of time? That progression seems a tad off according to what statistics suggest. That is too fast of a progression, if the two biopsies were within 3 yrs of each other, especially if you were taking interferon during that time.  See if you can find out when the two bx were done. were they done in the same office/hospital? read by the same pathologist? If it was me, I would gather the slides from both and have someone re read them. That is way too fast. Your hgb is very low, and that might be why you feel like c**p, why hasn't your dr prescribe Procrit?
It is going to be very hard for you to finish two yrs at that level.  Are you a patient of Dr Cecil?
Please ask your dr for a blood booster, so that you can feel a little human again!

Yes, suicide is present in less than 1% of individuals treating. and about one third experience other adverse effects like anxiety, depression, etc. That still leaves 2/3 that don't feel those extremes, but drs like to play it safe.

johnyhep, welcome aboard the 'fun' train of hcv.

[FlGuy]

Thanks for the link.  Althouh "Clinical efficacy of milk thistle is not clearly established", this report and others I've read certaininly point to benefit of MT.  I take it myself, drops in water daily, along with a multi-v,lipoic acid, and apple cider vinegar.  Although I can't prove benefit from them at least they can't seem to hurt and I feel like I'm doing some things that could be liver beneficial without being too 'out there'.  I also use black tea, although I substitute coffee for the tea and add milk.

[friole]

Sound like you have been through the ringer.  Welcome to the forum.  On your blood counts, it appears that the doc was referring to  your absolute neutrophils which were at .4.  The low of the normal range is like 2.2 so .4 is very low.  The neutrophils are the type of white blood cell that fights infection.  Since you got so low, your body was opened up to infection and you must have had a doozy with a temp of 106!  The good thing is there is a solution -Neupogen.  IT is a subcutaneus shot and does not give too many side effects.  I take it once a week and my ANC stays about .6.  Your hgb is also extemely low at 7.6 and you should be on Procrit to boost that.  Your platelets are low too at 40, but I can't address that -- Goof could tell you more there.

Bottom line is that you need those blood boosters - PRocrit and Neupogen.  Please ask your doc to prescribe them or ask for a reference to a hemotologist.   There are some assistance programs to help defray the cost too, if it is needed.  I am glad you have come back here.
frijole

[verav]

Hi,

May I ask you what is this "tx" test?

I am located in Toronto and never heard about it.
thank you

Vera