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

[patriots617]

What are the number side effects from treatment

[msbennett14]

I have had hep c genotype 1b for 33 years and always had regular physicals. I was just diagnosed this year. My liver byopsy shows signs of cirrhosis so I decided not to take treatment. I can not believe one little tattoo when I was 21 caused me to have this and the fact that no DR. noticed it all these years. I felt well, energetic and full of life until I lost my job 4 years ago. The stress made the hep c rear it's ugly head and now I am always weak, tired and itchy. I have no idea what is happening to me, my blood pressure and heart rate went through the roof. I take ammino acid, multi oil and coq10 for my blood pressure and xanex for my anxiety. I take it one day at a time. I would love to be a test subject for any new treatments. If you guys hear of one, please let me know.

[willbb]

Hi...
You have tagged on to an old thread and you may get a better response if you start you own thread..however While I am here ..... :)

There is no hard and fast rule on "when or even "if you need a biopsy.

You mention you are having ultrasounds  as well as blood makers on a regular basis and this is always a good idea as these tests may show indication of a liver being chirrotic (not always) however it is the biopsy most used by physicians to ascertain the amount of liver damage (fibrosis) you may have.

HCV is very often asymptomatic for many years and often decades , however this again is not  an indicator of how much fibrosis is occurring

When to treat your HCV is always a  personal desicion and one that should be discussed with a doctor who is familiar with your health(including liver ) as well as knowlegable about HCV and  the different treatment paradigms.

There is currently tx.available that is approx. 70 -.80 % succesful (depending on various factors ) and yes the drug companies are working hard currently on a number of different modalities(however may still be  3 -5 years away)

Are you wrong to wait ?
I would advise that all depends on  how damaged you liver is currently and a biopsy will give that indication.

Good luck and welcome to the group..
Will

[oy11]

Hi,
I have a question for you and all others... At which point do you need biopsy? My VL is low, between 250K-500K, but I do ultrasound every year and blood tests and my doctors says that we'll continue monitoring.
When you were suggested biopsy, was that b/c ultrasound or catscan showed irregularities of liver?

I have no symptoms, in fact I am very healthy.
I eep healthy pH level, drink 2 liters of Evian a day(the most alkaline water as I was told) and I practically don't eat red meat. The virus binds to iron, hence less iron=>less mutants.

Should I still ask the doctor to get biopsy done?

I am really trying to delay treatment b/c of all awful side effects. I am waiting for scientists to find something better...
Am I wrong to wait?

[wichitawoman]

Shanaenae...I'm right there with you.  I have more questions than answers right now.  I'm a 53-yo female who contracted Hep C-I think-after a series of surgeries in 1972.  I discovered the virus in the late 90s after donating blood.  I've found a gastrointerologist (sp?) who treats Hep C patients.  I do feel confident with him. My family doctor has been monitoring my liver enzymes for years, but with the recent publicity about the disease, I decided it was time to see a specialist. I've taken the "stick my head in the sand" approach.  I have just found out that my hep is 1B.  From the other posts, that sounds ominous!  I've seen what liver failure and liver cancer do to people I love, so I'm going to do this and fight it. I haven't gone to the second appointment to find out details yet. What my doctor has told me is that it's a six-month regime.  Right now I'm trying to get my head right about going through this.  Instead of OMG--six months!  I'm trying to think--geez-I can handle that for ONLY six months.  After all, pregnancy lasts almost ten months! I like this site and thanks to all who've posted. Please keep giving your advice.

[donna393939]

thank you for the encouragement. I was diagnosed recently, I'm in my late 30's, my mother died after carrying the virus for 20 years and never did treatments, when she died she had cirrhosis of the liver. the doctor said I most likely got it from her. I start the treatments in 2 weeks, I'm trying to stay positive I have Hep C 1b and the more I read about it I want to cry. I'm not sure what stage but the doctor says my bio showed I'm on the borderline of having cirrhosis too.  I want to be optimistic, because my blood tests never showed a problem, the CAT scan never showed anything, but it was my bio that made the world of difference. Anyone not considering to do the biopsy DO IT, it really helps showing how far along you are.

Donna / California

[Fnzol]

Oh, by the way, the treatment also leads to cognitive and linguistic dysfunction.  Critical thinking skills may become severely degraded.  

[willbb]

Hopfully   Renee   got all that   after  waiting 6 years to hear from you ..

[suzieq2]

Me again, Get a good Hepatologist, not a gastro. This disease raised it's ugly head and they didn't know what to do with us , so the gastro guys got us. not really wanting us. thats not what they went to college for.So get a good hep person, get your testing done virral load doesn't have much to do with your liver condition, Get your ultrasound, or biopsy done. now what condition you are in. Iron overload was a big one for me.You have so much coming up in your life. I am 57 and my life has been consummed with this from the end of 04 , started treatment in 05 after the holidays.I got pneumonia ,and then had gallbladder removed. My liver enzymes were high , so the surgeon , she was smart, she did a biopsy while she was already in there and sure enough, hep c , so then came genotyping, my iron levels were extremely high, I was told I should have have blood letting done before treatment because high iron impedes treatment.It wouldn't have worked anyway .it would have just brought on anemia, so then i was dns tested for genetic iron overload , called hemochromotosis,( my spelling is way off on some of these word!) Your son is coming home , a new grand baby, I have lost out on so much of my two grandchildren over the past 6 years, my adult children, my son is having a little girl any day, and I just don't have the energy, and sick all the. I have missed out on the important things in my life, have passed me by.I was so sick on treatment. in and out of emergency rooms , bed ridden, my husband monitoing vitals all some nights. It was horrible. I have never been so sick. Then you get addicted to pain medication , and have to go thu that. only to have to go back on them because of the pain, post treatment. Please think lond and hard.you are young, if your liver is ok , wait and enjoy your life. Get whatever meds you need to treat your symptoms now , and enjoy your life while you can. This is a slow growing disease. You may die of something else before hepc, or in a few years they may have the deffinate cure. No maybe's. a for sure cure.Don't let the fear take over, and this disease will consume you ,if you let it. waste of precious time. I do care Renee or I wouldn't take the time to tell you the truth, not all the sugar coated versions, co into that websight clinical care options, when it askes for a licence number ,just put in a random 4 and profession check other. these guy's are from all over the world and you get the real skinny..Congratulations on your son making it home. mine is in the army, and the new baby, We are blessed !

[suzieq2]

I am so passion on this subject. . I would have been in alot better shape now ,if I would have done my research, and refused the treatment. I have so many side effects, and so sick everyday, I guess i would descibe it as lifeless. No enerygy, nausea,pain headaches , neuopothies, symptoms go on and on. When i started Iwas told, as so many of us that I had a 50/50 chance, I thought not great odds, but I would take care of myself, stick to my treatment ,to a tee, and with prayer how could I loose. If I was not a test subject, why didn't thay take me off at 12 weeks. There is no such thing as a slow responder. That's what kept me on the hook, and the false hope to keep going, because this treatment is brutal. Dr. Lesage at U.T. Texas liver center told me I was flat out lied to .I maybe had a 5% chance, but that is high. At this time there is no cure. no Zadaxin or all these other coctails as they call them. They are shooting fish in a barrel.I do not want to rain on your parade and ruin your hope. I wish someone like me ,would have told me these things.I have not been on this websight for some time, but today for some reason I just did and you poped up. It's not good news but it's the truth. Sorry you have the demon ,in my prayers..

[suzieq2]

Please refer to post to cuteus, from suzieq2. My advise is knowledge , take charge of your own healthcare. My mistake was fear instilled by Drs. who get kick backs by prescribing this treatment for us, It doesn't work. get several opinions, ask alot of questions, and charge of yourself. Remember, they work for you

[suzieq2]

If there are any 1A, or 1B s who have responded to treatment , I sure would like to hear from just one. I am 1b , treated in 05 , I would have been way ahead of the game if I would have not treated.. I did not reach 10 log drop in 12  weeks , but they continued treatment anyway. until week 46 i went to the texas liver center. and was taken off asap. the is a web sight ,that only Doctors can use. My husband happens to be one. It is clinical care options, Everymonth Hepatologists meet and share their, clinical trials, patients ect. They specifically stated ,1A , 1B do not look for them to even scatch the surface , of a cure for us , for at least 10 years. as well as the Dr. at U,,T. Texas liver center told me.They new in 2004 that peg/intron & ribovarin would not work. wewere a bunch of gineau
pigs. So this gentleman's Dr. is right on.Us nonresponders are going through brain cell damage, bone marrow loss, kidney problems, liver, spleen pancreas,ect. So someone who has been there, is there, extensive study, and very sick from side effects, if you are a 1A, 1B there is no treatment. no protease inhibitores ect. .Don't let them get ya!

[Bill1954]

Hi jabm- welcome to the discussion group. You’ll want to go to the top of the page and click on the green ‘post question’ button to start a new thread. You’ve attached to an old one that was started in 2005. Lots of stuff has happened since then.

-Bill

[jabm]

Hi,
I am newly diagnosed and am grateful to hear some of your optimism. I had read some posts on another site and the option of tx started sounding like a poor choice. One member commented that they wnted their life back and that they felt so much better before they underwent treatment. I was diagnosed in Nov and am not accepting it well at this point. I feel very depressed have decided to cut back to part time status which make no sense at all on any level except for taking care of my self. I meet with the doctor tomorrow for a follow up and am anxious to hear what his recommendations are, but I am petrified of the treatment. Thanks again for your optimism.
jabm

[Tallblonde]

Hi Kathy,

These older threads at the bottom of the page are rarely seen, so it's best to post at the top of the page, or open a new thread.  

The decision to treat or not treat is very personal. There's no one-size-fits-all answer.  Jim has a very specific opinion about the matter, but there are others here that would offer completely different advice. It's best not to put too much stock into anyone's comments until you've done a lot of homework on your own.

For what it's worth, I'll tell you about my own decision. I'm a 46-year-old female who was diagnosed two years ago. I'm a genotype 1a, Stage 0-1, Grade 1-2. My VL is extremely low. It came back as a scant 714 IU/mL with my last PCR.  

I've decided to postpone treatment until better treatments come along.  However, if I was older, or if I had other health problems, or if I had symptoms that reduced my quality of life, or if I had Stage 2 fibrosis -- I wouldn't hesitate to start the current treatment protocol. You and your husband will have to weigh all those things, too.

To answer your question about VL....No, there's generally not a reliable correlation between VL and the degree of liver damage.  One poster on this board had a pre-treatment VL of 4,000, yet he had Stage 3 damage.  Others have VL's in the millions, and have little or no fibrosis.  It's a crazy disease.

If you decide to postpone treatment, I strongly suggest you research vitamins and herbal supplements that can help protect the liver from inflammation and its damaging effect.  Stay away from quack "cures" like Colloidal Silver and other things.  Check out the archives on this board for discussions about alternative treatments.  You'll learn a lot.

Best wishes to you and your hubby.  Please join us as the top of the page for more discussion.

Susan

[hubbyandme]

Jim,

I saw that you asked for some info from Renee to help her decide whether she should tx or not, and hoped you can help us out too...I know that the bx (husband is being scheduled for that and an ultrasound)is what will be the determinating factor, but this is what I have so far...appreciate any insight you can give...

He's 45 years old, 5' 10", 260 lbs. (too much) and genotype 1b, and I know what that entails.  PCR 9,920,000 - 7.00 Log.  Does the high viral load suggest the amount of liver damage?

I think the liver function tests (below) with the exception of the ALT are pretty good?

Protein 7.1, Albumin 4.2, Globulin 2.9, Albumin/Globulin Ratio 1.4, Bilirubin Total 0.4, Bilirubin Direct 0.1, Bilirubin
Hemoglobin 17.6, INR 1.0, Platelet Count 258.

Thanks,

Kathy

[cuteus]

no patience, huh?
that is  a WOW!
not bow wow.

[Tonyz]

Thanks but after I posted. the symbols got move, so you don't see the the way it should have looked.

Here is a link to a good cat...and More.

http://www.my-tgif.com/halloweencat.htm

<a href="http://www.my-tgif.com/halloweencat.htm">Happy Halloween</a>

   <font size="6" color="#6600CC">Blessings to you ALL</font>

[scruffy]

Bravo!!!!

[Tonyz]

The original bottom feeders forum.....

Thanks for the vote of Confidence Sandy, But I am not sure I have the patients or the imagination to create as you do..

Chev...The rose is well "WOW".....


I hope you all are doing well..


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[Tonyz]

       .^----^.
      (= o  O =)
       (___V__)
        _|==|_
   ___/' |--| |
  / ,._| |  | '
| \__ |__}-|__}
  \___)`

[scruffy]

@HERE'S@

Looking @ you kid!

[cuteus]

lol! I just finished telling these guys to post up there and what do you do? you get the point!  
It is a tough decission for sure, to go ahead with tx.  Some drs recommend to do it early, there was an article early this yr that questioned the wait and see approach, perhaps a web search on wait and see in hep c might bring it in the results.
I am going to try and find as many threads that discuss the sides for you to read
if you go into "browse archives" and check these (for some reason I can't get the url to paste), it might help give you an idea: thread titles:
New diagnosis Type 1 please help
Quandry, to Tx or not to Tx
Life after SVR and other post's
in 2004 list
Post Treatment Effects
I encourage you to read the titles that might help get you the answer you want.
I did 72 wks of Pegasys/copeg, am 11 months post tx and SVR. Worked (desk job) the whole time, did a class or two at the Y each wk, did have sides, but most were not long staying and manageable, became anemic and got Procrit for it, also took vicoprofen for aches and stomach cramping. It can be done and to me, it is worthy.
I feel no long term/residual side effects from the tx.
Read the archives, there are some real good suggestions for people starting tx. Make sure they do not reduce your dosages, that they intervene with boosters before considering the reduction.
best to you
and post up there!

[Shanaenae]

Hello, i am a 29 year old female. I have had Hep C genotype 1b since i was 17 years old. 12 years later, i finally went to get my liver biopsy and i am grade 1, stage 0. My viral load is
52,460. I have no current symtoms and i have always felt in tip top shape. So far, my Hep C has had NO effect on my everyday life or health. I have made the choice to go through with the pegasus combination interferon/ribivarin treatment, just to see if i will take to it, before i decide to start having kids, etc. My biggest concerns really are the side effects. I was wondering if anyone could let me know how their experience has been with side effects. I know it is different for everyone, but a little info would ease my fears. I am starting treatment in March 2006. I go in two weeks to start all of my pre shot requirements (flu and Pneumonia shots, Hep A and B vaccinations, etc.)For example, do the side effects decrease as time goes by, or do they get worse? How is the work situation, does treatment effect your attendance at work? Can you really not do high physical activities, like skiing or snowboarding or mnt. biking? Am i going to be vomiting every morning? How was the bruising from the shots, and were they hard to administer yourself? Did anyone have any hair loss?
These are just some of the questions i keep pondering in my head. Obviously, no matter what the side effects are, i am still going to go through with treatment. I just feel that the more prepared i am for the side effects, the more relaxed and less stressed i think i will be.
Thanks in advance for any info; and it is amazing to see how many others are living normal lives before and after treatment.
I feel very positive because of how low my viral load is, we will see.
Shannon