Treatment for Genotype 1b

[Rene H]

I'm so grateful to of found this website, until now I swear I thought I was the only one who had 1b. Almost a yr ago my liver Dr. told me that you have 1b and there is no sense in getting treatment because it is the least receptive. After hearing that I asked him what I should do, he told me to keep an eye on the new research, (via internet) and maybe they will have come up w/new medications or whatever. I have done nothing with my hep, I don't know what to do about it. I know that I'm sick all the time, all I want to do is sleep, I wake up in the morning vomitting or feeling like I want to vomit, I inch all over, and sometimes I feel like I have a low grade tempature, where my bones hurt and ache. Dang, I sound like a big ole baby, but I just stating facts here. I'm scared more than anything, I have a job and it's gotten to the point to where my job is getting sick of me not being there and honestly, who can blame them. I have to work because I have nobody to help me and I also need the insurance. I guess what I'm asking is, what can I do to get more energy? What about treatment for this? What has other 1b's done for treatment? Any kind of advice I sure would appreciate. Thanks

[jmjm530]

Hi Renee,

Welcome to the discusson group!

A lot of us here are 1b's. Some are in treatment, some have already been treated successfully and others have decided to adopt a "watchful waiting" approach.

Perhaps if you could tell us a little more about yourself, we could better answer your questions. Put down what you can, and try and get hold of a copy of your blood tests for the rest.

Personal Profile: Age, weight, height, race, how long ago do you think you got infected? How long have you had the symptons you describe? Any other serious illnesses/conditions?

Treatment Profile: (1) amount of liver damage -- expressed as "stage" in biopsy report; THE FOLLOWING ARE BLOOD TESTS:(2) Viral load as measured by a PCR  test; (3) Liver Enzymes (ALT and AST); (4) Hemoglobin level; (5) INR; (6) Platelets (plat).

-- Jim

[cougareyes]

Get all the test as Jim suggested. If your symotoms are HCV related you may be at the point that you may have to consider tx. I finally couldn't ignore my symptoms anymore and that's when I found out I had HCV. I'm a 1a(just as hard to treat as 1b), at stage 3 with a fatty liver.
Protect your job and your benefits. If you plan to treat sit down with those that need to know and let them know you are going to be on chemotherapy for liver disease. Check out the FMLA. File any and all paperwork with your company that they deem necessary. I have seen and heard of alot of people losing their jobs, so cover yourself; once you establish yourself with a serious medical condition it becomes somewhat harder for them to get rid of you. Good Luck

[cuteus]

welcome, and next...dump the guy(dr). seriously, you need a hepatologist that truly knows about HCV and this guy is not it.
check this site for possibilities
http://www.hepcprimer.com/patient/doctors.html

that said, you need a biopsy to determine what damage your liver has sustained, if any.  Then you can decide on the next course of action. If stage 2 or above you should give your body a chance to eliminate the virus by doing the treatment(tx). Many 1b's and 1a's have achieved an SVR or "cure".

[Fisheress]

Well Friday is the day I go for Biopsy!  ewwwwwww, I just hate this!  I know though that I am in good hands. Very thankful I have such a wonderful medical center here in Houston and St. Lukes hospital.  Suppose that ezes some of the anxiety.

Will I need to take the rest of Friday and Sat. off work?  How come they did not do a blood clotting test to see how I clot?

Just wondering.......

Fisheress

If you think you can, you can. And if you think you can't, your right!

[bobbyullc]

YES BY ALL MEANS FIND A DOCTOR WHO KNOWS WHAT HE IS TALKING ABOUT. I AM 1A AT STAGE 3 LIVER DAMAGE AND AM STARTING TREATMENT SEPT 12 AND AM OPTOMISTIC. THE TREATMENT HAS IMPROVED RAPIDLY OVER THE LAST 10 YEARS SO THERE IS EVERY REASON TO HOPE FOR RECOVERY. A BIOPSY PROBABLY WILL TELL YOU WHERE YOU ARE IN SEVERITY OF DAMAGE AND WHETHER YOU CAN AFFORD TO WAIT.

GOOD LUCK.

[friole]

It will be okay.  Now I don't know why they did not do the blood clotting test.  That is the one test I had to have done.  THey said they could use my last blood work for a lot of things, but the clotting test needed to be done.

Do you know what kind of biopsy you are getting.  I think needle biopsy is the most common.  I believe you get a local anesthetic and something to relax you. After it is done, you will need to lay on your side for a couple of hours so they know you have clotted properly.  I had a laproscopic biopsy and was knocked totally out.  After I recovered in the hospital, I went home and slept the day.  It would be possible to to back to work with the needle biopsy, but I would not advise it unless you had no choice.  I went to work Monday and the doc really didn't want me to, but I was fine.

Really, Fish, you will be fine.
Kathy

[chellski]

welcome!  im 48yo fm, type 1, vl 1.5mil, biopsy show grade 2, stage 2.  my doctor is a gi and recommended treatment asap.  i'm now on week#20/48 and at my 12week testing - the virus showed undetectable!....i realize anything can happen, but i have great hope for future svr!  
you need a biopsy to decide on treatment and a new doctor if this one thinks you don't need to....i felt alot of same symptoms you have and most went away when i started treatment, although i've had quite a few side with treatment, i get to work everyday.
good luck,
<3 michelle

[HCA]

Could be worse-you could be 1a and 1b like me.
I am responding well to treatment.
I have known 1a/1b patients with cirrhosis clear the virus-so get fighting!!!!!!!!!!!!

[snook_man]

State Law in Florida requires pre-op blood tests. They have to do clotting factors and full CBC's.
Also, the biopsy is nothing. They will give you some Versed, and you're gonna feel great!! If the drug was legal, all of America would be addicts.
I would not go back to work after procedure, as they will hold you a minimum of 4 hours after and watch for bleeding. That is also state law. But you will be a little bit sore, and want to just lay down. I was sore for a few days after, actually felt like I did a few hundred sit ups or something!!
Good luck on your results!!

[Fubarcat]

I was a 1b.  I did the treatment, cleared at 12 weeks, still clear at the end of my treatment and still clear 3 months after treatment.  My viral load was low to begin with (600,000) and I was a Stage 2 or 3 (I forget now).  Here's the point:  If you want to treat, you should have a doctor that is willing to help you.  I am proof that 1b's have a fighting chance.  I will go for my 1 year blood work in December, but as far as I'm concerned, I'm cleared and I refuse to think differently.  Don't give up hope just because you are a 1b.  Find another doctor and do so ASAP so you can put your mind at ease and make the informed decisions that are right for you.  Good luck.

[Rene H]

Wow, thanks so much for the imput from everybody, you can not imagain how grateful I am to have read some of the things that ya'll wrote. I had all the blood tests, biopsy, all that, and he never told me a thing about any stages or about my results other than telling me I was 1b and to not do tx.

  Well I'm 43, I figure I've had it for about 19 to 20 yrs, I started feeling bad about 2 1/2 yrs ago and found out I had hep c 6 mos later. Damn, I feel like you people have given me hope today. I'm going to be a grandma for the first time in Dec, my son will be home from Irag in 20 days (yeah). I was going to just wait around for some other kind of tx, but not now. The person who said that they were on their 20th week or so and have been able to work, damn that could be me. Tomorrow I'm calling my Dr. and I'm going to get the results and I will let ya'll know where I stand. You know on one hand I feel like I'm on cloud nine, and then on the other, I'm pissed because of how my Dr. treated me and my illness.  Again, thank ya'll so much for everything said.

[avidreader]

You are not alone in being angry at a doc. It's appalling how little most family physicians/internists/primary care docs know about this disease and the need for treatment. I went years with symptoms that looking back were obviously related to my HEP C being treated by my primary doc who KNEW I had Hep C but who blamed by symptoms on everything but. I finally insisted on a referral to a heptoligist and it was the best move I've made in decades.

I'm one of those people who is actually feeling a little better on treatment (although I think it may be psychological--I'm just so damn glad to finally have a legitimate reason to be so tired and brain fogged  lol.) I'm continuing to work, and my doc keeps telling my that if I do respond I may feel better post treatment then I have in decades (and I'm 54!)

You owe it to yourself to see a doc who knows what (s)he is doing! Good Luck!

[hiya24]

Hi and welcome. I recently found this group as well and it has been really wonderful. It truly is a daily support group and great for info on so many aspects of this disease. These folks are awesome.

As several have pointed out here, you are not alone as many of us are type 1s. I am a type 1a and in my 32 week of tx.  Prognosis uncertain because I am responding but still detectable.  All of us (all types) go into this knowing that it might not work but believing that it is worth the try.  The stats are far more encouraging than ever before and unless there are medical reasons that you shouldn't try tx, I think any knowledgable doc should encourage you to try.

Please find another doc who can give you proper information. Your future may seem so uncertain right now but it is still your future and you need to be properly informed to make your choices about it.  

Hang in there. It is overwhelming but don't worry it will be okay. keep asking questions and learn as much as you can.

[friole]

You sound energized.  Get all those labs and give us the numbers.  I don't wait for my doc to call.  I start calling the minute I know it has been sent from the lab.  I think I have made a pest out of myself but I don't care. The doctors do not understand the anxiety.  You know, my husband was tested for hep c about 2 months after I was diagnosed.  When the nurse called to tell him the results of his colesteral, etc, she didn't even mention the hep c.  I had to go to the office and pick up the results myself to find out.  THey just don't understand. (he was negative)

I am 1a and will take shot #7 Friday.  I am 57, I have 2 grandkids here that I adore, and my son has been home from the military for a year now (he was in for 7 years).  

The people on this forum are knowledgeable and more than willing to help.  These next couple of months will be tough for you, as you get the ball rolling for treatment.  We can help each other.
Kathy

[HepCat]

I'm just echoing what alot of others are saying but just because you have 1B doesn't mean it is not worth trying.  Genotype 1s clear every day.  You didn't mention the condition of your liver as people with little or no liver damage sometimes put off treatment hoping for something better to come along.  But not feeling well all the time may be reason enough to treat.  Doctors have different opinions on whether to treat or not and may are very pro treatment.  If you like you can got to http://www.hcvinprison.org/forum_new/forum.asp?FORUM_ID=2 and post a question for a doctor who treats many patients and is a true advocate for those of us who have this disease.  Make no mistakes about it.  Your genotype CAN be whooped.

[mattie1]

Hi, I can't remember my genotype and getting ahold of my doctor is next to impossible.  I do know he said it was one of the worst ones.  I just finished a year treament of the peg interferon and riboviran about two months ago (my 3rd go around).    However, my question is, having Hepatitis C does this affect your homosystein levels?  My cardiologist is saying they are way to high and wants to prescribe Metranx.  I've looked it up and I believe if I add B12, B6 and Folic Acid this might help, but I was just curious if the Hep C had anything to do with it.

Any comments would be appreciated.

Thanks everyone

[cuteus]

try posting in the upper threads, more people read them. as for those levels, if the hcv does not influence them, I wonder if the anemia from tx does.

[sunspot]

<p><a href=http://img218.imageshack.us/img218/5554/dscf0662small9do.jpg>Pegasys</a></p>

[hnm]

My husband has recently been diagnosed with Hep C, genotype 1b, contracted over 20 years ago.  He doesn't want to do a liver biopsy or do the conventional treatment, due to the risks involved.  We have heard of a very effective treatment called UBI.  Has anyone tried this?  If so, what were the results?  There are no side-effects and there is at least one person we know that it was very effective on.  I'm interested in comments and input.  Thanks.

[darcar]

hi all..
this is new to me .
my boyfriend has HepC , probably contracted 30 years ago.
has geno type 1 stage  4 cirrhosis. and grade 2 portal inflammation.
is treated with peginterferon 1X/wk. and ribavirin daily.
his alt / ast levels are within normal limits.
his pcr in july05 was 403 iu/ml.
his absolute eosinophils is 1558..way above normal range.
his liver biopsy shows no hepatocyte necrosis.

i am worried about him.
anyone else here have stage 4 cirrhosis ..undergoing treatment?
i know he was in interferon and had the viral load down to zero..but then relapsed after he stopped ..so they put him back on it again .

any input or feedback on others at this stage of disease would be appreciated.
thanks!
and love to all here.
DarCar

[cuteus]

Hello there! welcome. you might want to post in the upper threads, since hardly anyone "feeds on the bottom".  There are a few stage 4 that have treated and cleared and some that are presently treating.  It is important to stay on the meds long enough to get every last replicating virus.  Just because the test is negative it does not mean all of them are gone. If the tx ends too soon, the "hiding" ones come right back.

[darcar]

HI AND THANKS FOR YOUR RESPONSE!
HE has already been treated with inter/ riba and then relapsed.
he is back on both interpeg. and riba again ..
so as you had said, they hide and then come back.
hope you are doing well !
thanks and love,
DarCar

[bouldertrees]

I'm joining this group as support as I have recently been diagnosed w/Hep C and started treatment three months ago.  I'm hopeful as I read others commenting on going forward no matter what type they have. I also have the type which my Dr. deemed the most resistant to the current treatment.  I had very high enzyme count, 12 million and in stage 3.  I don't understand all of what I have been given to understand but I know I have just been told that my liver now looks "normal".  I look forward to FEELING normal now.  I was hoping someone might comment on the "reeling" that I feel getting up, laying down, turning over in bed, is this normal due to the meds?  It seems as though it is more than just "dizziness".

[tags]

Hi everyone.  I'm not sure if anyone has the answer to this, but I'll give a shot.  I had surgery 3 years ago and contracted hep c, I know this because I was a blood donor and gave blood three months later.  I have since had the pegetron treatment.  I am genotype 1a.  I got back for my first yearly test since I completed treatment in two weeks.  They said the hep c was not showing up on the test last year but I'm so scared its back.  I've been getting really tired and sick lately.  Almost like I was before treatment.  I'm not sure if its anxiety or what.  Has anyone been this far and found out they have to do it again?

Thanks
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