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

[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!