My genotype

[Tyree2005]

I got more lab results.. My Genotype is 1b with hcv quantitation 847,000. SGOT 44, SGPT 54 and I was also positvie for Hept which is the first time the Heptitis A came back positive.  My Sonogram showed a fattie liver no masses I see the Hepatologist tomorrow. At which time I will be getting my appointment for the liver biopsy.  What do I need to ask tomorrow.  Everything that I have read states I should have got vac for the hept a when I was diagnosed with hept c.  I did not.  Can I still get the vac now?

[vegas777]

are you saying you have Hep A and C?

[Forseegood]

So sorry to hijack this thread, just wanted to put myself out here in Banner Letters, hey, CTOAN, I go to a few different boards and I also research the new drugs relatively thoroughly, not to the extent that you do though....and I for one am extremely grateful for all the research you do and how you keep us all posted on the new findings...hey, don't go!!! and if you do, please let us know where you land, because I think youre one of the best sources of information I've come accross. Those of us who are very interested in these new drugs need you around!!!!

For me, this board is very informative with many intelligent and informed people, but I do admit it's a bit of anomaly in the hep c board community in that it isn't heavily moderated. That's why, perhaps, many enjoy coming here... though it can be the wild west here. Usually, on other boards, there are more than a few moderators who might come on and send you and email or two if they think you might be causing unnecessary trouble, or unwelcoming to newbies, whatever. This place is more of a no-holds-barred venue where the members will often try to moderate each other in the hopes of gaining some kind of balance and equanimity...and often what ensues is anything but. I've also noticed that some people just have a sharp tone in their postings, perhaps English is their second language (I know a few like this and many people don't know this is the case) or that's just the way they communicate for whatever reason. We both know that posting on the net has it's drawbacks in that we can't hear voice inflection or see facial expressions.

Whatever you do, please don't go and if you do, please let us know where you land. I for one would very much like to benefit from all your hard work. (Hope that doesn't sound to user-friendly, wink wink.)

[cuteus]

tnguy and others had made a nice list for another member that had similar questions as you.

HEre is the list:
"you should discuss with your doctor about seeing an eye doctor before treatment as well. Some people develop optic nerve damage (low chances of about 1-3%) which usually is not permanent but the eye doctor should see you before treatment to establish a "baseline" of what your optic nerves look like to compare with how they look as you progress on treatment. I had eye concerns before treatment and have not developed any problems but get checked every 3 months for insurance. As Michaelt suggested read as much as you can, educate yourself about potential sides. Those that you concerned me the most are the ones that I asked my doctor about. Also critical in my opinion is WHAT the doctor will do if your red and white cells drop too low....and IF he is willing to check your thyroid on a regular basis....there are many ways your doctor can help you with your "quality of life" as you proceed through this journey of fighting this virus. My best to you and don't worry too much....all these sides can be very frightening but my personal experience has been my fears of the sides before were greater than what is presently happening at week 18/48...not a walk in the park but it is doable. My best to you and keep us posted how it goes with your doctor.
Scott

I encourage folks to discuss those things that might come up during treatment just to put 'em on the table, get assurances from the doc that she is cognizant of 'em and is prepared to detect and treat if needed.

Treatment induced depression.

How will we address my pain/discomfort if I have any?

What will we do if treatment causes me to become anemic?

How have you dealt with reduced Quality of Life issues for people on treatment?

Can you help me if I have sleep problems caused by treatment?

etc.

Some of these things can be discussed in general terms, but some people will have special concerns due to the condition of their liver, other health issues, current medications, etc.

Read through all the horrible and nasty potential side-effects of treatment and discuss the common ones and those that scare the p*ss out of you. If the doc doesn't bring it up, discuss the possibility of thyroid problems and how it will be monitored.

That's what comes to mind, for now. God bless! –Michael

A few of the more important things to ask are:

- will you rx Neupogen and Procrit proactively (i.e. - before needing to reduce or skip dosage)?

- what happens if I am a slow responder (i.e. - you have a 2-log drop by week #12, but are not fully clear)? will I then be a candidate for extended tx?

- how often will I have PCR's done? how often will regular bloodwork be done?

- how will I receive these results (i.e. - phone call, in-person, snail mail, etc.)?

- who will be overseeing my day-to-day care during tx?

- how often will I be seeing the doctor, nurse practitoner, etc., during tx?

- who do I call in case of an emergency?

- and be sure to tell them you would like copies of every test result.

Other things to do:

- call up your pharmacy and make sure that they can get Neupogen and Procrit in a very timely manner (i.e. - on short notice). If the time arises when you need one of these, some doctors will want to cut dosage right away - not even leaving a few days to get the meds. The more things you can have set up in advance, the less surprises along the way.

- call up your insurance companty and make sure that they will cover Neupogen and Procrit.

TnHepGuy

that's a very nice list tn posted. You may also want to ask your Dr. about the sensitivity of the VL tests s/he relies on. At 12 and 24 wks you'll want to get the most sensitive tests available though many Drs still rely on the older tests in which any VL under 500 iu/ml is reported as "undetectable". If by 12 weeks you've had your 2-log drop and your VL comes in still detectable but under 500 you may want to think about extended tx - but you'll never know if your Dr relies on the less sensitive tests. Overall, "test early, test often" is a good attitude to hear from your Dr. The rate of drop in VL carries a lot of information about how well the meds are working for you and once the vl drops below what can be measured you're left in the dark"

[couldn't think of a nickname]

Thank you, I appreciate the sentiments. It is hard not to post, because of the desire to help/contribute to those in need. I have always appreciated those who have responded to me. I think there is a better understanding of things now.

[mikesimon]

Karen has asked me to leave this board and all the hepatitis stuff behind me. She wants me back and I understand perfectly well why she feels that way. She has been through my transplant and 3.5 years of interferon/ribavirin and she wants to get on like normal now that I am SVR since June 2004. I can't seem to do that because I feel the need to stay in touch with the community and just maybe I can help someone along the way. That's the good side of this terrible disease. It fosters compassion. So I, for one, am glad you've decided to stick around and help us all. Thanks. Mike

[Forseegood]

Hi, don't think I've ever communicated with you, but I'm glad you decided to, at least, stick your head once in awhile, I enjoy your postings. Yeah, I think it's prob a good idea to take a vacation now and then from all things hep c related ...if not it's surely a door to madness...he he he. So glad that you are doing well with your tp, I'm always so relieved when I hear of the few friends I have who have been transplanted feeling so much better and healthier...good luck to you!

[mikesimon]

Thanks for the kind words. I enjoy reading your posts too and it's nice to finally talk to you after all this time. Yes, I am doing well - my numbers are beautiful AST 22, ALT 16, GGT 13 10/27/2005. My Heptimax as of this date was clear. I have so much to be thankful for. Be well. Mike

[NYgirl]

Please make sure that you bring up the Anemia/Hemoglobin issue with your doctor as Cuteus said (and ALL her points were greatly valid).

Personally the only thing so far that almost beat me into submission and forced me to quit was the extreme drop in hgb - I simply could not EVER have imagined that it could be so tremendously and horribly bad.

Now that I am on Epogen twice a week...I able to continue living in an offbeat way but...able to do so.  Before I kept fainting (which is painful believe it or not it REALLY hurts before you go down) and was not able to walk more than a few feet, could not breathe, had such bad tinnitus.........it was DREADFUL.

Please make sure to talk to the doc about that - it might save your treatment.

Best of luck

[honey11]

Mike,,,,That is so great about your enzymes and heptimax.  I agree that it does make you step back,,,,and be so thankful!  Your wife sounds alot like my husband,,,,Same thing with him other day,,,asking if I was still tuning into medhelp and why? #1,,,I love to see the way more and more are clearing and of course if I can offer any kind of advice,,encouragement,,,That is what I will do also.  So many were there for me as I'm sure you can relate.  Right now,,,I'm helping 2 others going through tx personally and one of them in particular,,,Thanked me yesterday for being there and understanding while they get through the tx.  Days like that,,,make it all worthwhile and maybe that is something that our spouses don't quite understand or maybe even feel after clearing,,,like you said,,,,get on with your life but that is a part of our life.  Glad you are recovering from your motorcycle accident now and Karen is probably looking for a more relaxed year not relating to drs lol

[friole]

Mike - I also understand Karen.  I guess we all need that balance.  The truth is, life is never going to be exactly the same once we have had hep c and that is just part of the total journey.  Like it or not, we become a part of this group and I am sure it will be hard to cut loose in the end.  

No nick - I posted to you on some other thread, hoping you would continue to post.  Your research on hep c and muscle problems is invaluable.  Thank you

Honey -- you too - glad to see you. I understand your hubby too but I am so glad you read and post with your encouraging way

foreseegood -- you too have provided much knowledge here.  In actuality, it seems those still waiting to treat are doing the most research - like you and no nick.

Cutie you too, while I am at it.  THanks for continuing here. YOu have  provided Tyree with the needed info. You were the first to post to me, in May, and I will always remember that

Kathy

[mindylu]

Hi- Went to the liver doc yesterday--- i am 49 y o. I had a biospy 18 months ago- liver was 0-1 . Viral load 289,000. Doc said it was my choice to go on the meds. I am geno 1- so less than 50% chance . i feel fine. Guess i'll wait.

[Forseegood]

You know, sometimes I think that having a potentially deadly disease and bonding with others who have it is a little like the bonding that goes on in the military...the comrades-in-arms type of thing that happens when you share a highly stressful situation. People who do not have a disease like this and are healthy just can't imagine what it's like, I know I sure didn't. Sometimes when I listen to what my "healthy" friends complain and freak out about...sheesh!!!!I try to empathize because I once was one of those people...feeling like my world was going to end because I might be fired from a job or something like that. Oh...would I trade those problems now!

And then, I'm not even on treatment so I haven't even delved into the worst of it. And then the people who don't even respond or relapse, they are further tested. And even more extraordinary... you have people like our friend Mike Simon, who have undergone transplant. I realize going through all these things brings out the best and worst out of all of us, but I am truly amazed at the bravery and character I witness at these boards...And yeah, we don't always see people at their best...as we all know. It's not always like the television shows where someone who is snotty gets a deadly disease and then they suddenly turn into a an angel of a human being. Everyone reacts differently to illness.

But I think it's these things that bond us, even after we have fortunately cleared and really have no need to come here...except to check in and hopefully help someone else less fortunate. The only positives I get from this disease is the fact that I can witness this bravery on a daily basis, and hopefully incorporate some of these lessons into my own life. I hope it's made me a much better person, I know it's made me more compassionate with myself and others. I'm now not so apt to take my pleasures and joys for granted as before. So yeah, there are "some" positives. Still and all, if anyone wants to buy my disease....it's going really cheap!

[couldn't think of a nickname]

Thank you, I think I will stay around. You did hit on an important point as far as things go for me. Since I have not treated, and had been advised by my PCP to await the new PI's (this was before he even heard of 950) few years ago, I have spent this time researching everything I can. My background is science, so some people just want to know the bottom line, but I guess I like to see the math in between.

[couldn't think of a nickname]

That looks to be about the best results you could have gotten. I am happy the numbers were good. Hopefully that means you have the time to wait.

[cuteus]

It is good to know hcv has not damaged too much, isn't it?

keep an eye on possible extrahepatic conditions and, the SVR rates can be higher than 50% depending on pre tx factors and response to meds in the first months of tx. But, hopefully every thing will go smoothly for you.

[mikesimon]

Hi Honey. Are you the same Honey whose husband's birthday is June 3? I thought I remembered that and looked it up to see and the Honey was named "honey 15346" or some multi digit # like that. If you are the same honey we sure go back a long time. The wreck: I am doing rehab 3x per week and walking fairly well w/o crutches. It's funny, sort of - back when I was TXing or fighting rejection people would ask me how I felt and I'd say I have to see my labs then I'll let you know. Now I say I'll have to see my x-rays.
friole, you are absolutely correct-we will never be the same and that's okay as long as we get sort of healthy. I'll settle for that. I have met some of the finest people I've known as a result of HCV. There are some really brilliant and compassionate people here at MH. Mike

[JENNIFER5D]

Hi everyone.  I was diagnosed with Hep C approximately 10 years ago and have finally decided to take the big leap into treatment.  I have an appointment with my Gastroenterologist on Friday and am sure I will have current blood studies done at that time.  No matter what I have decided to go ahead with the treatment as I am petrified of the long term effects if I do not.  I am so scared right now.  So depressed and worried.  All I know at this point is my Genotype is 1.  I dont remember if that is the "better" of the Genotype as far as a cure rate or not.  I have read so many of your threads and posts and I am very grateful all of you are here.  It is such a relief to know I do not have to go through this alone.  So can anyone let me know more about the Genotypes?

Thank you so much and I hope everyone is feeling well.
Jenn

[LvdByGod!]

tyree, sounds like some good news and not so good news...

nice viral load and alt/ast is not horrible...but the genotype, fatty liver and the hep A are not good news...see if you can find info on these tonight so you are armed with plenty of questions about it tomarrow...i would start at janis' site for the info...i will give you the site below...

its very good that you have a hepatologist. it will be very important to do as he suggests...the combo of hep C and A is serious...make sure he knows his stuff...

he should be very aggressive in doing the right tx for you on both of those... he should offer you alot of testing through this and he should thouroughly watch you...this is not one for a laid back type dr...

be sure and get alot of info from him on how the two interact and what is the worse case senario, and the best way to treat...consitrate on getting your questions answered...have a lot of them ready before you go in...let him tell you what is going on...

yes you should have had a vaccination...i read that even though it is highly suggested alot of folks don't vaccinate... the dr can tell you if the vaccine will do some good now...

i'm sure you will get an earfull if you ask questions...bring a tape recorder so you can go over it after you get out of there...that's what i wish i would have done on my first visit to gather info...just an idea. you can conceal it in a bag if you think he will be intimidated...

come back and educate us on how the two interact...alot of us don't have much info on having hep a with hep c...

i pray you will get all the help you need and can get rid of both virus' before damage occures...

GOD'S BLESSINGS TO YOU TYREE...

http://janis7hepc.com/interviews_and_articles.htm#The%20following

*************************************************************


MIKE,

i understand karens concerns for you and your family...i would take her seriously if i were you, but i would try to see if she can reach some sort of compromise and agree to perhaps even a few hours a week studying or visiting us...you perhaps still can use some support here, and i know we all really care about you and love to hear from you...you know just a couple hours a week to hang out with us...i hope you can work out some sane idea...i agree that too much hep c study etc...could be keeping you from enjoying your wonderful SVR and quality family life...keep it all in balance...

your friend,
sandi

[Shanaenae]

What are others opinions on waiting to do treatment. I am only 29 and my vl is @ 52,000. I am also Genotype 1b and my liver biopsy came back as grade 1 stage 0, no cirrhosis or fibrosis of the liver yet. My doctor also said that it was my decision to start treatment and i have never felt symptoms; i feel fine everyday. My worry is with having kids in the future and more responsibilities that if i waited and then had to do treatment, i would have more to deal with than i do in my life right now. I have also read that your percentage goes up for viral response if you meet certain criteria. One of the criteria is being under 35 years of age, which i am. Also, i kind of feel that since i am still young, my body could handle more now than it could at a later age. My life is very positive and i have very little to stress about.

Anyone else have any input on making this decision..... I know it is mine to make but i am curious of others opinions :)

Thanks, Shannon

[mikesimon]

Thanks for thinking about Karen and me but I can assure you she's cool with me participating here and elsewhere in the HCV community.  We talked about it some and I referenced the many breast cancer survivors who continue to speak out and counsel victims. She gets it and only wants me to be happy. We'll go on vacation to Vegas or some tropical island and that will make her happy and content. I think she's so beautiful that I'll just watch her sleep for a long time so she knows she's loved and isn't that what we all want once we achieve a modicum of health? That's all I want or need. Oh yea, a little spice is nice too. Mike

[mikesimon]

Type 1 is a tough genotype. Types 1 and 4 are tougest to treat successfully whereas 2 and 3 are the easiest. 1s can reach undetectable and stay that way about 50% of the time so don't get too discouraged. Good luck with the TX. Mike

[JENNIFER5D]

Mike...thank you for letting me know.  Figures it would be one of the toughest right?...damn.....I feel like I am falling apart and I haven't even started treatment yet....it has taken ten long years to make this decision...it seems so easy to just forget about it...but I know that is the wrong thing....You know what made me finally decide to go ahead with the treatment?  I was in Center City Philadelphia and saw a billboard that said something like if you had hep c on your face instead of your liver would you do something about it then?   and there were lesions all over this guys face.....the Truth is hard to swallow sometimes huh?....takes something like that to make you realize just cause you cant see it doesnt mean it isnt killing  you.

God Bless All of You...
Jenn

[mikesimon]

You are in good shape if you decide to wait. One positive factor towards waiting is that it appears that some new drugs may be just around the corner - maybe 3 or 4 years away if I am seeing things right. There are exciting prospects for Vertex drug VX 950 which is a protease inhibitor(pi) so now is maybe the most promising time to wait since I've been involved in this stuff. On the other hand it would be nice to get rid of the virus now but the TX can be hard to tolerate. But you said it - you have things in your favor if you decide to treat. You're young and have a low VL and no fibrosis. But you're type 1 which is a tough type to treat. It's a toss up. I could tell you what I'd do but it isn't me who's got to decide. It's a very personal thing - this decision to treat or not. Just hang out here and ask for input and you'll make the right decision. Good luck Shannon. Mike

[mikesimon]

Hang in there Jennifer. Do not allow yourself to fall apart. A lot of people here can help you through this thing so relax a little. We've been where you are and a whole bunch of us have gotten to the other side of this hep c thing. When you get ready to find a doctor ask here what you should make sure about before treating with the doc. Things like making sure you can get Procrit if your hemoglobin drops below 10 and neupogen if your white blood cells get too low or neutrophils get low. Some docs will supplement and some will reduce doses. Most of us here believe strongly in supplementing and not reducing doses and most of the literature would back us up on that issue. So get informed and stay strong and you'll be okay. Stay here and don't be afraid to ask about anything you're not sure of. Good luck. Mike

[designerdeb]

Hi everyone, I'm answering Shannon's question about getting therapy.  Well Shannon, i was diagnosed in February of this year with Hep C.  Geno Type 1a.  This is the worst one to have.  I truely believe that Hep C can be cured without doing Interferon.  The side effects scare the heck out of me.  I am being treated by Holistic doctors using herbs from Germany, US and Japan.  My syptoms (symptoms) are not too bad right at this time.  Upon being diagnosed I was very tired and had some pain in my stomach along with nausea, mostly in the morning.  I have been getting treatment in Mexico and from a gal here in LA who has treated many movie stars with this disease.  I hate to put anything in my body that is toxic.  Why not try the good ole fashion way.  I have talked with many many people that have been cured ( we all know that it's a disease that cannot be completely cured, but to the point of no detection in the blood ) and feeling great. If you would like to know the names of these doctor's, give me your email address and i will send you all the info.

Best of Luck,

Debi

[jmjm530]

The following link presents the pro's and con's of treating versus not. See articles 2 and 3. You may have to register for Mescape but well worth it. Also keep in mind this was written a couple of years ago. Since then, as Mike suggests, newer drugs in trial have been generating a lot of excitement.

http://www.medscape.com/viewprogram/2053

[honey11]

Yeah its me minus a few digits lol  I forgot your b-day is also June 3rd!  Makes sense now,,,Geminis!  My husband is now looking into a Harley,,,You guys just love living on the wild side,,,don't ya! ha   I didn't realize that you were still in rehab,  I'm so sorry to hear that you are having to go through this.  Take good care of yourself!

[lackalustre]

i spent many years trying every natural method there is to cure this disease and spent a lot of money.  i finally took the plunge and did the interferon/riba treatment and got cured.  many of those herbal preparations can make your liver worse.  some of them being immune boosters this virus does many wacko things to the immune system.

[Tyree2005]

Vega777,  Yes I do have both Hepatitis A and C.

[Tyree2005]

Thank you both for all the information.  I do have lots of questions for my doc this afternoon.  I am looking for more information on having both A&C.  I have not found a lot yet.  My next step is to get the liver biopsy.  I have been sitting on this for sometime and other doctors Primary Care Physicians have never referred me to a liver specialist until now.  Insurance and health care is not worth a hill of beans anymore.  My first time knowing that I had HCV was in 1991.  In 2003 my current physician referred me to see a liver specialist who said my VL was too low for treatment. (not sure what it was then)   I wish I had known then what I know now about HCV.  Thanks for everything.

LvdByGOD I read some of your previous statements and I am also over weight and know that is going to be a factor in my treatment.  I have been going to the doctors more often because of felling very fatigue and tired all the time.  I can barley make it through a days work.  I have always been active and now I can barley go home and take a nap. I recently had a sleep apnea test which I go for the 2nd part next week.  I just can not imagine being more tired that I am now. What can I do to get some of my energy level back before I go on any treatments?  Thank you so much for your prayers and encouragement.

[Tyree2005]

Mike thanks for the information.  I read your post on genotype and 1 being hard to treat.  What does the letter mean like 1a or 1b?

[JENNIFER5D]

Thanks so much....my apppointment with my doctor who I saw a little over a year ago is on Friday.  Knowing I have all of you to help me through this seems to take away some of the fear I am feeling.  Knowing I have support here is a wonderful feeling.  Thank you.  And Mike thanks for the questions to ask the doctor.  I had no idea what to ask.  Everyone enjoy your day and I hope everyone is feeling well.  

Jenn

[cuteus]

I guess you can use the list of things to ask or do before tx, that I just posted, from some of the members who have treated.

Shannon; it seems as if you have a real thought out statement for getting rid of HCV now rather than later. I guess you must have also read this article:  
http://www.prnewswire.co.uk/cgi/news/release?id=143867.  
To both:
If you have good insurance now is also a big plus.  Both of you have to remember that chronic hep c(CHC) is not just a liver ailment. You will hear things like "it is a slow moving disease", yes, in most folks and in the liver, you don't know what else it is affecting besides the liver. there is a recent article on hep c in the brain and its effect in neurocognitive function. Here is another reading on extra hepatic stuff http://janis7hepc.com/Related%20Conditions.htm
in fact, if you have not done so, janis7hepc.com is a good place to visit for hep c information. also projectsinknowledge.com and the  hcvadvocate site.  
Jennifer: I am so glad you saw that add, it did for you what it was intended for, make you think about your hep c as if you were staring in the face. I hope it did the same for many others.
Read the articles mention above and at those sites, to empower yourselves with knowledge.  
good luck

[jmjm530]

I guess you're discovering that there are different opinions here on whether or not genotype 1's with little or no liver damage should treat. I still think one the most rounded discussion in print is the above link from Medscape I posted earlier in the thread. It may require registration (free) but well worth it.

To balance out the thoughts above regarding "it's not just a liver disease" and "extra hepatatic stuff" -- you should take some time here and on other discussion groups to read about some of the side effects people experience on treatment from the treatment drugs and how some of these side effects may remain after treatment. I think over at the Hepatitis Neighborhood site they recently had a thread about those who think they have experienced permanment side effects from treating.  

It has also been speculated that it's anemia that causes most of these side and that anemia can easily be prevented by a drug called Procrit. I haven't seen any scientific basis to this, but let's assume it's true to some degree. I've been taking Procrit for the past 36-weeks on treatment and I still have anemia. This is not uncommon. Procrit helps reduce anemia but it does not eliminate it in many cases. So that means less blood to the organs ,including the brain, for the duration of treatment.

Bottom line is the more you learn, research and study, the clearer the answers will be. None of us here are doctors so what we present here are out opinions/biases often somewhat based on our own treatment experiences. In my case, I've had the roughtest 36-weeks of my life on treatment-- but since I was told I had significant liver damage, my options were very limited.

Go to other web sites like Janis and Hepatitis Neighborhood and ask the same questions. Go to Projects in Knowledge web site and do some research. Speak not just one doctor but two or three hepatologists if your budget/insurance allows. Above all, don't let yourself be rushed into a decision, one way or another.

All the best.

-- Jim

[jmjm530]

"Scared", "Depressed", "Worried".  You sound like all of us facing this nasty disease. But as many here have said, the more you learn, the more you empower yourself, the less scary things become.

As a genotype 1, if you haven't had one already, you should ask your doctor about a liver biopsy, even if you plan to treat regardless of the result. A liver biopsy will give you imporant infomation about the condition of your liver which can be very helpful making treatment decisions. Not as accurate, but better than nothing would be blood a test called "Fibrosure" from LabCorp.

You've come to a great place for knowledge and opinions but none of us here are doctors and all carry our own opinions/biases often based on our own treatment experiences. So check other sites as well like Janis and Hepatitis Neighborhood. If you like research articles go to the Proects and Knowledge web site, and if money/insurance permits try and get the opinions of at least two hepatologists (liver experts) regarding treatment options.

Many of us, including myself, started treatment with less knowledge than we would have liked. If there's one thing I think we all agree on, is to take your time and get up to speeed as much as possible on Hepatitis C BEFORE you start to treat.

All the best and welcome,

-- Jim

[NYgirl]

Don't feel BAD about having a geno 1 - it's the MOST COMMON of them all and a LOT of people with 1 are beating it VERY successfully!   I am a Geno 1a & 1b and fighting this thing to the end!  I won't give up till these cooties are GONE for GOOD!  :)

[NYgirl]

Everything Jim said is true .. the more you LEARN the more you DO empower yourself and the less FEAR is there in time.

Save ALL of your paperwork so when you understand more...you can look at your numbers for yourself and see what's what.

Remember nobody cares more about your liver than YOU :)

Debby

[strator]

When I thought the curve's life was throwing at me were just too overwhelming, a very wise friend pointed out that the biggest curve wasn't my situation but rather my my reaction to it. Before I made the decision to treat my hep c, I got help treating my reaction to it. Both of you are doing just that by coming to this board and voicing your concerns and fears. Research, therapy, and support groups gave me the confidence to make decisions and focus on what I could do TODAY to accept and have a positive influence on my journey. In the beginning I used small daily goals-Get just one question answered. Make an appt for blood work. Buy more bananas. Offer one new piece of knowledge about tx or the disease to my family so they would be prepared for what might be in store.(What a breath of fresh air when I finally faced my fear and told my 13 year old that I had hep c, I would be going on tx, and might get emotional mood swings. He looked at me and laughed and said "You mean you'll be more like me Dad? No problem.")I can't believe I'm on week 9 of tx. I still use the small daily goals and can't believe all the things that no longer appear on the lists.
There are so many variables, this disease is so irrational. Some people who lived a more liver friendly life style then I did have not been as fortunate  with the degree of liver damage. Some people respond to treatment-others don't. Some people have no window of time to decide or prepare. Which or if you get side effects is a cr** shoot and I'm thankful I have the experience and advice of people who've been through this one or that one to listen to. Like  everything in my life I kept waiting for the stars and moons to line up before deciding about tx. Somebody suggested that whether or not the stars and moon were lined up might depend on where I was looking at them from.
The decision when or whether to treat is yours. The decision to do what you can to prepare mentally and emotionally is also yours. One day I just felt I was ready. It wasn't that I was actually ready for treatment. It was that I was ready to handle the decision and the journey and to make the best use of the help that is available.
Blessings on YOUR journey,
Don

[friole]

shana-- maybe Snook will come by - he also is 29 and treated and cured.  He did have significant liver damage tho.  Sounds like having children will be one of the major deciding factors for you.

So to do the math --- lets say you decide to treat now - that is 1 year on treatment and 6 months post that you CANNOT (absolutely) conceive - the meds are dangerous to the fetus.  So that puts you at 31 before you conceive, still young. Now let's say you decide to wait for better treatments to come along. That is fine if you plan to have your children right now (and there is minimal risk, maybe 3%, that the virus will be transferred to the baby).  However, what if you are not quite ready to have children now.  In that case you are facing the problem down the way.  Maybe the kinder treatments will not materialize down the way and then you may wish you had treated now.  There is no magic answer.  It takes lots of research and soul searching.  Should you decide not to treat now, a biopsy every 3 years is advisable.

Jennifer--- You sound like me - found out I had hep C in 1993 and decided to do something about it this year (at age 57).  I also am Geno 1a, I had a beginning vl of 1.52 million IU and was at 40 IU at week 12. Since you are going into this determined to treat, there is a pretty good chance the GI will not want to biopsy.  Please insist on one as it may make a difference later in determining course of action.  Since the interferon can make your white blood count go way down and the Ribavirin can do the same with the red blood counts it is very important to know how the doctor will deal with this.  If he will not prescribe the blood growth meds to help, find another doc.  Please  

We were all very scared at diagnosis and before treatment.  Please understand that the anxiety disappears after treatment begins.  Altho everyone does not clear, I must say that the results posted on this forum are promising. I track all of those who started in June and July when I did and I think about 80% were clear at 12 weeks.  And another thing, interferon is the only cure.  Herbs may help, but only interferon, at the present time, cures

friole

[friole]

Please post your PCR's

[2irish]

hi, shannon.  i am hoping snook does come on so you can talk to him.  i wish you could do treatment now while you are young & then forget about it and have kids.  i am on #8/48 and doing fine now but when i was 35 i didn't know i had hepc and i had my last baby.  that baby is almost 17 now & was born with hepc.  even though they said his chances were less than 2% that he would have it.  it would be so nice if it was out of your body before a baby goes in your body!  my opinion only.  good luck & just hope no one else has to find out their child has it, also.

[NYgirl]

You have such a soft way about posting...whenever I read something you've written it still helps ME.

I was determined to treat as well (better to try and rid myself NOW before anymore damage is done I thought!).  Please listen to what Friole has said - biopsy is crucial and knowing if your doc will prescribe Procrit or Epogen for anemia...is just to ME something that has saved my ability to remain on tx.

Without it I am not sure that I could have as I kept fainting and falling down and could barely stand let alone work or drive etc.......It was SO painful too I was shocked~!

The things that people are adament about in here - that you see everyone saying over and over are important...treat them as if they are saving your life because in fact they ARE.

These guys are the BEST and they have so much knowledge to share they REALLY are the one's I owe any success I have in tx to...not my doctor at all.

Debby

[cuteus]

and...when you do read the comments in the message boards you visit, please keep in mind that those having the hardest time and need support more often will frequent the boards, those with easier sides do not feel the need. So you might not get a balanced picture on the boards, best to ask your GI practice, if it is a big one. Mine told me that they have pts who experienced nothing.  As for permanent effects, the jury has been out for a while and it still is. Many hep c related conditions go unnoticed and surface while on tx, maybe to remain for good. So what you read in the inserts even, could be the  result of that event and not really the meds. Of course some side effects have been documented in the regular lab rats and the human ones, but bear in mind that all meds and even herbs can cause unforeseen adverse events. Gee, food too! We have had members who came back yrs later to post their SVR status who had tons of sides and no remaining ones and you get the ones that do. Yes, a **** shoot. It is a choice of which path is the less scary to you and the one who will give you the most benefit in the long run.

[NYgirl]

And remember...I found recently I was blaming EVERYTHING on my disease...even thing that had NOTHING TO DO WITH IT I was like oh no another sx!

I got these bumps in the front of my tongue and it was so RAW I was like oh no this stupid disease~I hate it!  I better call my doctor! What will he say?!!!!!!

Then I remembered I have a CAVITY and I've been running my tongue along that stupid annoying jagged hole constantly........voila......it's not the HCV but the dumb cavity annoying me!

Now...if I'd come on here before I thought of that screaming oh no new side effect!!! You might have read it and thought wow that side effect is bizarre!  And meantime......it was just a regular old every day problem!

;)

[designerdeb]

I'm not sure what PCR's are Friole.  When i was diagnosed they told me I was a Geno type 1. My viral load was 2,137. It jumps all over the place  65,000 to 10,000.  I think it was doing this because of my back surgery and having to be on pain pills.  I will have to ask the doctor the other questions.  Lackalustre, how long did you try the herbs?  Now i'm nervous.  I have talked with many people that have been cured with holistic meds.  I was just wondering what the long term effects are on doing the interfern/rab?  This stuff is real bad for the body ( a form of chemo )  Chemo destroys all your organs in some way.  

I would appreciate anyone reading this that has some experience with holistic medicine to write me.  Thanks to all

Deb

[NYgirl]

Sorry Deb personally I don't know of any other real "cure" except the Riba/Interferon combos.  I do think that the herbs can be helpful but I have not heard of it being a "cure".

You told Friole what your PCR is....viral load numbers.

If you decide to treat using standard meds like most of us are...make sure you watch the anemia and hemoglobin numbers. I have become CRAZED about this after suffering through it.

Do as much reading and studying and asking that you can.  Everything you learn gives you a better sense of power over this stupid disease!

Debby

[sunspot]

He, he. I developed a rash on my arms about 3 weeks into tx. OH NO, I've got Riba Rash. I put on all kinds of creams and lotions to no avail. I then remembered I was clearing some woods behind my house that had poison Ivy. That's right. I had a case of Poison Ivy. A week on Calamine lotion and I was fine.
Good point you brought up about, is it a sx or something unrelated. Thanks.


Dana

[cuteus]

the people that are telling you that got "cured" with herbs can not be telling you the complete truth. Getting your liver panel down to the normal range is not indicative of a cure. These people have to show hcv infection by PCR test and HCV clearance by the same test. if they do not have that information, they are trying to sell you something.  Some people clear the virus on their own (20 to 30%, depending which article you read), but it is usually in the acute stage of the infection(in the early stages). Most people do not know they carry the hcv virus in order to treat early, which also brings a high rate of cure from the infection. Nothing besides your immune system and the present therapy can kill hcv. Many folks here have done herbs to feel better or to reduce the inflammation and high levels of the liver panel, none of them got a cure. SOme of them are now on treatment(tx). If all you are reading is testimonials claiming a cure, you are wasting your time. IF you find actual studies by reputable researchers that can claim the same. Post us the link.
good luck

[Shanaenae]

Oh my.... you people here are so amazing, i did not expect such a response in a day.  Thank you truly from my heary for the overwhelming acceptance and welcome :) Snook huh, i just like the name already, i would love to get in touch with someone closer to my age that has been through this. Honestly, having babies is really my biggest concern. I keep reading all this literature about how much your immune system is affected with TX and how you should not be around those that are sick or have infections.... don't children live with infections, dirt and bacteria HA HA. I just feel that at this point in my life, i would be more suitable for tx, then if i waited.

I am def going to go to some of the sources a few have mentioned and i really am not worried to much about the side effects, i am a strong woman and i can take it. I do yoga twice a week, budokon twice a week, i don't eat red meat, I try to eat as much organic, whole foods as i can afford LOL, I haven't drank alcohol in about 10 years, and I wake up every morning with a strong will to live and to make everyday happy and count as if it were my last. I have tons of support and like i said i live a life of pure happiness and little stress. I am a firm believer that your attitude and outlook on things have a huge effect on how your body reacts to certain situations. In my mind, if i beleive that the treatment is going to suck and be the worst thing in my life, then it will be; BUT if i hold my head up, stay strong and positive, use my support systems, keep up on my physical activities and just tell myself i will beat this thing, i believe that the side effects will be minor and the least of my worries.
The only side effect that makes me nervous is the depression, since i am such a positive, happy person, i don't even know what it would feel like to hate the world, or not want to get out of bed. Honestly, i really couldn't ever see myself being depressed, i truely don't believe that my soul is capable of feeling such a way, i don't feel it is supposed to be a part of the path my soul takes. Sorry to get all spiritual, i just have a deep, strong faith in knowing my life has a purpose and i hold so much compassion for people in general, that I know i will beat this and live a long fulfilled life. So enough of that.....

Any ways, thanks again for all the support and advice.
My current plan is to go ahead with treatment after i am done with some grad classes in March 2006. So i have a few months to reassure myself of my decision. I feel that what do i have to lose, if it works YEAPI, if it doesn't then i just keep living my life the way i am. It seems to be working pretty good, considering i have had HepC for 12 years now, and feel better than ever :)with no liver damage and a very low vl of @ 52,000. Actually my doctor was astounded when she got my biopsy results, she could not believe that after 12 years of having hep C i had NO liver damage at all and that my vl was as low as it is. I have gotten opinions from two other heptologist who both say that it is my decision to start tx, thought they both thought i would probably me really accepting of the meds, considering the other factors i have on my side (ie, female, under 35, low viral load)and looking at all my test results.

Well enough chit chat for now, will check out the recommended articles and other sites, anyone finds snook, send that boy my way LOL

Shannon