Thanks. I'm pretty nervous about the incivek. At least it's only 12 weeks of that one. I hope I do beat this thing..once and for all. If not, I know there are more meds around the corner.
Hi Angie, I did the triple treatment with Incivek. Worst part for me was the fatigue, I think it increased the Riba rage and you have to keep am eye on the rashes if any pop up. Everybody gets different sx, hopefully yours won't be bad. Like you say it's only 12 weeks and if it doesn't work new stuff will be coming and at least it will help you until then. That's the way I looked at it when I began. Good attitude.
Tig said
Jul 24, 2013
I figure I've had the disease since 1980 +\- and tried the mono therapy in 96 after testing positive then. I didn't complete that therapy because I failed to clear and got anemic. There wasn't anything else available at the time, so I went back to living life on life's own terms. I treated myself pretty well, but I wasn't perfect by any means. I drank alcohol and put myself on every herbal supplement that even remotely helped liver function. I continue to take Milk Thistle even though there are some that disagree with its value. I have always had excellent Liver function studies, and felt that part of it was a result of how I took care of myself. I could've been better by all means, but I got lucky as compared to many I've crossed paths with. Whatever decisions I might make in the future will be done with a lot more research and inner reflection. Whatever choices you make, make wise ones. Good luck to all!
dustbear said
Jul 23, 2013
Your correct Tig56, that most medical professionals and most forums do not support herbal treatments for Hep C.
I have 2 close friends who did use herbal treatments (milk thistle & a strict diet) and succeeded.
I asked my hepatologist who did not deny that it is possible, but rare.
If I ever get it back (heaven forbid!), I will try herbs before repeating tx again.
Good for you Angie for being proactive in your health! Your kids are healthy, so just take it day by day. No need to worry.
Kellie said
Jul 23, 2013
Hi Angela, Congrats on starting the new treatment. I'm on the last 9 weeks of the treatment. Let me know if you have any questions. I posted about my sx. I had a lot of them. Doable though. best, Kellie
AngieV123 said
Jul 23, 2013
Thanks everyone. I will keep you posted and I'm sure I will have questions as I go. So thankful that you guys are so helpful.
Congratulations Ken on the svr! That's awesome.
mallani said
Jul 23, 2013
Hi Angela,
Good luck with treatment. At your age I hope the side effects are minimal, and you have an excellent chance of SVR. Keep us posted. Cheers.
packerfan24 said
Jul 23, 2013
Angie I want to wish you all the luck in the world. I was on the two drug treatment at one time and the dr told me it was not working for me. I started the triple treatment last July. So that but me in the 57% range. I am six months post treatment and I am HCV free. I hope that makes you feel better. These drugs effect everyone different. I am going to tell you they KICKED MY BUTT. Stay strong and hang in there. There are a lot of GREAT people on this board for you. God bless.
Ken
Cinnamon Girl said
Jul 22, 2013
Glad you know what your genotype is now, Angie, and 1a is pretty much what you expected to hear. You`re bound to be feeling apprehensive, that`s only natural, but you can be sure of getting plenty of support here. We have many members who have had experience of treatment with incivek and they will be very happy to share advice and tips on dealing with the side effects.
Best of luck and keep us posted! You can do this!
AngieV123 said
Jul 22, 2013
Thanks. I'm pretty nervous about the incivek. At least it's only 12 weeks of that one. I hope I do beat this thing..once and for all. If not, I know there are more meds around the corner.
Biggyb said
Jul 22, 2013
Good luck to you!!! I know we will be hearing alot more from you in the future. Just keep a positive attitude cause you can beat this thing.
AngieV123 said
Jul 22, 2013
I FINALLY know my genotype and it's 1a. Hence why I relapsed the tx 10 yrs ago. So, the doc wants me to meet up with a lady from the other gastroenterology office because she will be handling any of the problems I may experience during tx. She is going to call to set up a time for me then after I speak with her I will begin triple tx with incivek.
ucbgal said
Jul 5, 2013
angie.
so happy to hear both your children are hep-c free!
my beloved sister ,didn't believe in traditional medicine. about 7 years ago she was magically undetected after working with herbalists.
i myself believe in traditional treatments and am on my 2nd round. my sister never did tx. also both her kids are viral free. somehow i gave you the belief i don't believe in treatment. sorry
sandy,ucbgal
AngieV123 said
Jul 5, 2013
Sandy, sorry to hear about the accident :(
Tig, thanks for the info.
ucbgal said
Jul 5, 2013
angie,
she was a free spirit/hippie who stretched the truth. i know she took milk thistle,and gave up all alcohol. i believe giving up the alcohol and never working a day in her life,less stress,may have cleared her. prior to her tragic car accident she sounded and looked the healthiest i've ever seen her.
sandy,ucbgal
Tig said
Jul 5, 2013
I believe most conventional medical professionals are going to loudly nix the idea of herbal cures for HCV. I think they have a supportive role for some patients unable to take conventional treatments or choose not to, but the jury remains out in many people's minds. Here's an article that may provide an introduction to it.
Wow..that is amazing to go undetected using herbs. Do you know what they were?
ucbgal said
Jul 2, 2013
angie.
so happy to hear both your children are hep-c free!
my beloved sister ,didn't believe in traditional medicine. about 7 years ago she was magically undetected after working with herbalists.
i myself believe in these treatments. thus she never did tx. also both her kids are viral free.
sandy,ucbgal
AngieV123 said
Jul 2, 2013
Sounds to me like the allergist was the one to infect you since your sister got it too. That sucks :( Is she doing tx as well?
AngieV123 said
Jul 2, 2013
It was a shocker for me..big time! I was only 17 at the time and I did not want to believe I had it. I tried to ignore it for a while. This will be my second go around with treatment. .I took the dual one in early 2000 and went undetected after 6 months...but it returned. Does that mean svr is only a 57% chance for me as well? The incivek will be the new one for me. I am worried about the treatment and having young kids to care for.
ucbgal said
Jul 2, 2013
angie,
just wanted to let you know it is a shocker when you find out you have hep-c when donating blood. for myself i was diagnosed right after 9/11.
have never done i-v drugs,but enjoyed snow . that's my most likely point of contact or my allergist when i was much younger. only myself and one other sibling went to the same allergist. she also had hep-c .
whatever you decide i only wish you the best. you have 2 children and the triplex is a very long and tedious/rigorous treatment.
the beauty of the tx is that you have an 87% curable range. unfortunately those of us who've had prior treatment have only a 57% curable range. i wasn't informed of this until the day prior to my 1st dart. anyway,i'm certain i'd have faced this challenge. fortunately you have a lower viral load and enzymes.
keep strong and follow all the advice re:side effects.
sandy,ucbgal
AngieV123 said
Jul 1, 2013
First appointment with specialist done. He just ordered blood work to check genotype and thyroid stuff I believe. He believes that I likely have 1a since that's usually the strain that relapses. So, I will likely be doing triple therapy. I go back the 22nd to get it all started. He did say that I could wait for the new drug that is coming out in 2 years depending on liver biopsy results but I told him that I'd rather try something now and if it doesn't work then there is hope in the future at least.
Cinnamon Girl said
Jun 22, 2013
AngieV123 wrote:
Just got her results and she if fine! Both kids are ok, thank God. Phew!
Excellent news, Angie!! Really pleased for you, I remember how relieved I felt when my 2 kids tested negative!
Best of luck with your appointment on 1st July, hopefully you should have a better idea of your tx options after that.
Keep us updated!
AngieV123 said
Jun 22, 2013
Thanks guys! I am just letting all the good news sink in. I took tx over ten years ago , so not sure what has changed. Luckily, I had no real reactions to the meds until the end when I got red welts at injection sites.I was much younger and sans kids back then so I'm sure this time will be much different. Still, I'm way excited that my kids are fine. I can deal with myself having this randomly in life but I couldn't deal with my kids going through it because of me. I hope to get to know you guys better. :)
Zlikster said
Jun 22, 2013
great news! i was so relived when my mom n gf got negative results on hcv markers.
i got fatty liver (a bit) from genotype 3. Before i knew my gt, i had fatty liver as a good sign that its gt3. I was right. As Jill said, fatty livers is most common in gt3 (but why, we still do not know).
i hope you get on some interferon free thetapy and evict that pesky liver occupier for good ;)
medical science in last 2 years is really maing some great developments with new and really effective meds witohut old school interferon bombardment ;)
all the best
Biggyb said
Jun 22, 2013
AngieV123 wrote:
Just got her results and she if fine! Both kids are ok, thank God. Phew!
That's great news Angie, good luck on the future.
tonib said
Jun 22, 2013
Thats the best news I have heard all day! Now its time to concentrate on you and getting better, and I am gonna get better too!!
AngieV123 said
Jun 22, 2013
Just got her results and she if fine! Both kids are ok, thank God. Phew!
AngieV123 said
Jun 21, 2013
Thank you Jill . I am still waiting for her results. I am hoping that I get as lucky as everyone else seems to have been as far as children testing negative. That would seriously be such a blessing for me.
ToniB... Hello, it does sound like we will be starting treatment close together! Perhaps we can help each other get through it. I have yet to get a start date on mine but I'm sure it won't be too far off from when you begin. I have to get a bunch of info still. I have been thinking of starting antidepressants too..I actually already have them because my doctor and I were going to see if they would work for lessening my migraine attacks. Celexa is the med. I also have anxiety and always have had it so I'm sure it will be of much help to me..especially once tx starts. I have been waiting to start them until after I get the ok from the specialist that I am to see on the 1st. I don't want to take anything that I may have to stop or switch. I'm not positive on this but I don't think anyone with HCV is recommended to take extra iron if it isn't needed via doctors orders.
tonib said
Jun 21, 2013
Hi Angie, I am also new and I have my appt on July 1 for my "starting" blood test. I am all set with my meds they have been approved from my insurance co, and I am gonna start on Friday July 5.
I wanted to let you know that I also had my 3 children tested and they all are negative. I wish you all the luck with your sons results.
I am thinking seriously of starting an antidepressant prior to my start date, so when I go for my appt on 7/1 I am gonna get a prescription for that. I am feeling very anxious already and if I get any symptoms from the antidepressant I don't want to be thinking its from the HCV therapy.
I am gonna be on the triple therapy with the peg interferon and the ribavirin start and on the 29th day I will start the victrelis. And yes I am scared to death too!
I wanted to write to you because it seems like you and I will be starting together.
Someone told me that I should not take alot of iron because the interferon does not work well with high iron in the blood, but I don't know too much about it.
lol i need to start writing this stuff down for my doc appt.
hope you keep in touch!
Cinnamon Girl said
Jun 20, 2013
Hi Angie, brilliant news that your son`s test was clear, what a relief for you! Now all you need is some good news about your daughter`s results, and then you`ll be able to relax and start preparing to start treatment. Good news that your insurance is on track now.
You`re bound to be feeling anxious, anyone would be...let us know how it goes. Thinking of you...Jill
AngieV123 said
Jun 20, 2013
My son tested negative and I'm still waiting on the results for my daughter. I am so happy that his test was negative but a part of me is still all stressed waiting for her results. She is only 3 and I don't know what I'm going to do if she has it. Her doc is supposed to call today. I'm so nervous. I also haven't been to the specialist yet...my insurance was having issues but now it is resolved and I see the doctor July 1st. I'm so ready to start treatment and hopefully get rid of this stuff...AGAIN. Over the past few years I have had fatigue and body pain/frequent migraines etc and now I know it's likely due to the virus. I can't wait to feel good again one day :)
Cinnamon Girl said
Jun 7, 2013
It`s what we`re here for, Angie! We`ve been through it ourselves so we know what it`s like trying to make sense of it all. You`ll be fine, once you`ve done the treatment and hopefully cleared the virus you`ll have a new healthy life ahead of you! You`re going through a stressful time right now with all this going on as well as the divorce, but things are looking up, especially if you get good news from the kids` results, which is highly likely going from our experience here on the forum.
Keep moving forward step by step, it`s all coming together for you! And you`re welcome to vent any time!
AngieV123 said
Jun 7, 2013
I am so worried my kids may have it but I know that it is better to know so that I can have them monitored/treated if they have it. If they don't have it I will be insanely happy. That would just be the best thing ever right now :). With all this going on I am also going through a divorce and any good news is so very much appreciated. I know my liver has at least has enough time in it to care for my kids until they reach adulthood and that is all I could ever ask for. That made my day to get the news about my sonogram even though it wasn't a perfect result. It is so nice to have a forum I can vent on and be open about my situation with people that understand. Thank you Jill for answering my questions. You are a sweetheart!
Cinnamon Girl said
Jun 7, 2013
Well, it`s possible to develop fatty liver with any of the genotypes but for some unknown reason it`s more prevalent with genotype 3. The good news is that it`s likely to improve or be reversed once the virus has been treated and cleared. And it`s the same with fibrosis, yes, once the virus has gone your liver can repair itself to a large extent. All in all, not a bad result at all then!
Thinking of you having your kids tested next week, you`ll feel a lot happier once that`s done.
AngieV123 said
Jun 6, 2013
Thanks for the reply! Wow, I didnt know a genotype of HCV could cause fatty liver. I asked if she knew my genotype and she said that she didn't test that. I guess I will have to wait to find that out. I also have my kids scheduled for testing next Thursday. Praying that comes back negative. I would be so happy if they were negative and my liver is still in decent shape. Fibrosis can be reversed, right? I know that cirrhosis can only be slowed down. I was relieved to find out I had no masses and that the bile duct looked clear as well. Phew!
AngieV123 said
Jun 6, 2013
Hey guys. I got the ultrasound of my liver back and as far as they can see the only issue with it was it was a fatty liver. Something I can change, fortunately! I'm not sure how accurate a sonogram is in detecting fibrosis or cirrhosis so I'm afraid to get too happy about it. I also asked my doctor how high my viral load is and it's just above 3 million. So, it's considered high :(. I see the specialist Monday morning and hopefully he gets the ball rolling with the treatment. Is it mandatory to have a biopsy prior to treatment? Hope all of you are well!
Cinnamon Girl said
Jun 6, 2013
Hi again Angie, well, your viral load isn`t too bad actually, 3 million isn`t that high compared to what many people here have (or had), and a viral load count below 5 million is often considered to be medium.
An ultrasound can detect the scar tissue which happens in cirrhosis, but it won`t detect fibrosis. A biopsy would give a much clearer picture of the health of your liver, and many people do get one done before starting tx, but not everyone does. That`s something you could mention to your doctor on Monday.
A fatty liver suggests that you have genotype 3 as it`s more commonly found with that genotype. Yes, you can do a lot to help that by diet and exercise.
Best of luck with your appointment next week, let us know how it goes. ~ Jill
AngieV123 said
May 17, 2013
That is a huge relief to hear that all your children tested negative. My kids are 3 and 9 right now. I'm getting a liver sono today then my next step is the specialist on the 10th. My doctor will give him all the blood work results and I'm sure I will know my genotype then. Not sure why I was never told it before.
Cinnamon Girl said
May 17, 2013
Welcome Angie!� � I have another reassuring story for you. My 2 kids were young teenagers by the time I was diagnosed but they both tested negative too... and bear in mind that my husband also had Hep C.� We must both have been infected before the kids were born, so it was a big relief that they were ok.�
Best of luck with your test results, and feel free to share your story and how you`re feeling anytime here, we all understand!
Keep in touch!� ~ Jill
JoAnneh said
May 17, 2013
My 2 children tested negative for Hep C and I had C-sections and they were 17 And 11 when I found out I had Hep C! I was honest with my children and I have been Sober for 26 years. Rejoice that we have a great chance of beating Hep C. I was on treatment 11 years ago Didnt clear the virus. I finished 48 weeks on Triple tx w Invicek and have cleared the virus. If we stay cleared 6 months post tx, then it's Considered gone or SVR. When I took treatment 11 years ago, I Stopped tx at 9 months cause it wasn't clearing Virus. If virus was UND I would be on tx 12 months. This is same as Malcolm. But what matters most is beating this virus. Genotype is important to know. Welcome, glad you found the forum. It has meant so much to me and you Start caring about those who walk the road w you On thus forum. A lot of success stories.
chatterbox said
May 17, 2013
hi Angie,
Just want to let you know that I found out I had Hep C when my children were 14, 16 & 17 in 2007. I was terrified that I'd "killed" my own children. By that age I had expereinced a lot of boo-boos and had even shared razors with my 2 girls. After all, I'd tested neg on HIV and Hep C wasnt a thought in my brain.
I had them tested under a guise of a 'checkup' because I didn't know how to tell them that their mother (their old brownie, girl scout leader, baseball mom, etc,etc) had been into hardcore drugs in a previous life. My kids were all negative. They are fine. My husband too. In all those yeasrs, of parenting and being a wife - lots of blood. Don't worrry.
Last yeaar I did the triple treatment and am now undetectable. I had to tell them that I had Hep C. The second you look that up on internet it says transmitted by using neeedles or getting a transfusion. I considered telling them that I had aquired it by saving someone's life in a bloody car accident but opted for telling them the truth. I had made a mistake when I was young.
Turns out they'd seen plenty on the 70's and thought nothing of it.
Angie, We all freaked out. Welcome here. You're not alone.
Biggyb said
May 17, 2013
Welcome Angie, most of us have had a streak of bad luck but hopefully it's all gonna change. Keep us posted..
Loopy Lisa said
May 16, 2013
Hi Angie,
you've had such a stint of bad luck it seems unfair doesn't it. Well a lot of us are on the same journey all hoping for the best outcomes. Researchers have made huge break throughs in understanding the kenetics of the virus since your first treatment plan, and things have improved 100%.
There are quiet a few people on this forum participating in trials that are showing impressive results and halving treatment times by up to 50%.
Any time you have any worries, or need some supporrt, this is what this forum is for.
Let us know how you are doing. :) x
Zlikster said
May 16, 2013
Hi Angie and welcome
lately things in modern medicine are progressing nicely in development of new direct acting antiviral drugs without interferon, so you might finally get rid of hcv for good!
keep us posted with yout results/test
AngieV123 said
May 16, 2013
I don't mind that you were curious. It feels good to share my story. I don't have anyone to relate to outside of this forum. I will be sure to let you guys know what I find out.
mallani said
May 16, 2013
Hi Angie,
Thanks, and sorry to be inquisitive. A lot of us ignore the disease and hope it will go away. At your age, the prospects of successful treatment are excellent. I also had 2 courses of the old 3x week interferon, but relapsed.
I ignored it until I developed cirrhosis and hopefully have cleared the virus with my last 48 weeks of treatment. Your Ultrasound will be normal, but let us know your Genotype and Viral Load when you get them.
We are here to support and help with any questions. Good luck.
AngieV123 said
May 16, 2013
Ok..I had a blood transfusion in 1981. That is the only way I could have gotten it to my knowledge. I was premature and my blood became septic, so they did the transfusion. I found out in 1998 when my school had a blood drive and I donated blood that my blood was unable to be used due to the findings of HCV. I initially refused to accept that I had this and the only thing I really did regularly was get liver function tests. They were always normal. I did see a specialist. A couple of years later I came to my senses. I was still under my father's military insurance until I turned 21 so I figured it would be best to do it before then. Prior to the treatment, they did a liver biopsy that showed no damage, only signs of inflammation. I was never made known of the Genotype or my viral loads.The treatment I took consisted of three injections a week and 6 pills a day (3 in the morning 3 at night). After 6 months of that I tested clear of HCV. After that, I kind of ran with it. I got what I wanted to hear and I rarely saw a doctor and never again a specialist. Whenever I did go to a doctor they would send me for liver function tests/ blood work and as far as I knew, I still did not have it. I had my first child in 2004. My second in 2010. She did say I was clear of hepatitis but in my mind I wonder if they in fact checked me for C. Maybe I'm paranoid. Also, I think that there is always the chance it came back later in the pregnancy. I had obstetric cholestasis with my second child. It's where the hormones of pregnancy cause the liver to malfunction and bile salts build in the blood stream and cause itching. It makes me wonder if the stress on my liver brought the HCV out of dormancy. I will get both my kids tested in any case because it will make me feel better to be sure. Once again, call me paranoid. I keep fearing that no one ever restested me even when I told them I once had it. I have had many doctors ignore it and I was foolish enough not to ask because many parts of me was afraid to know. This all may sound a bit mixed up but I do hope I make some sense. I decided to go to a doctor this year because my migraines were bothersome and I haven't felt right. She ordered blood work and my ALT was elevated. It remained so after 2 more tests so she sent me for a HCV test and that is how I found out that I have it and my viral load is high. I see a specialist June 10th with a liver sono tomorrow.
mallani said
May 16, 2013
Hi Angie,
Welcome to the Forum. I'm a bit confused about your story.
You were diagnosed in 1998 and had a liver biopsy in 2001. Do you know your Genotype? You then had treatment with Interferon and Ribavirin- was it for 6 months or 12 months? Back then, 12 months was standard for all Genotypes. You then tested 'negative'. Was that 6 months after you finished treatment? You would have been under the care of an Hepatologist to receive Ribavirin, as it would have just been approved. Surely there was followup. You speak about the fluctuations in ALT with fish-oil etc so you must have had blood tests. I'm surprised you did not have a followup VL test. Your midwife told you you did not have hepatitis during screening so presumably you had a VL test done when you had your children. Now, last Monday, your doctor told you it's back and you have a high Viral Load. Why did you have your recent blood test, and why would your doctor do a VL test? Sorry for the questions but it's an unusual story.
AngieV123 said
May 16, 2013
I am so sorry to hear about getting the diagnosis instead of IVF you were planning.. I can imagine that to be pretty crushing.You are right that maybe my liver did have a chance to recover from the first time around at the very least. I guess I was thinking more that I could have had this for 32 years straight minus that one break and that after that long I'm sure to have damage because of my raised alt as well. I suppose that even if I went just 6 months without it that my liver inflammation would have had time to heal enough for me to be more like a person whos had it 12 years vs the collective. That really helped me to relax a bit Lisa..thank you! Also, yes I will feel TONS better if I get my kids checked and that's clear. I just need to stop stressing the worst case scenario and take everything one step at a time. Thank you all so much for helping me clear some anxiety for the time being. I'm so glad I decided to join a forum.
AngieV123 said
May 16, 2013
When I first found out I had it at 17 I ignored it because I couldn't fully get over my disbelief. I finally came around a few years later and started the interferon and ribovarin. I responded in the six months and was able to function as normal while on treatment. . I just found out on Monday that I have it again and I have no idea how long it's been back. I'm hoping I spent most of the 12 years without it. I really appreciate the feedback. I've just been in a panic mode of what ifs driving myself nuts. :)
Hi Angie, I did the triple treatment with Incivek. Worst part for me was the fatigue, I think it increased the Riba rage and you have to keep am eye on the rashes if any pop up. Everybody gets different sx, hopefully yours won't be bad. Like you say it's only 12 weeks and if it doesn't work new stuff will be coming and at least it will help you until then. That's the way I looked at it when I began. Good attitude.
I figure I've had the disease since 1980 +\- and tried the mono therapy in 96 after testing positive then. I didn't complete that therapy because I failed to clear and got anemic. There wasn't anything else available at the time, so I went back to living life on life's own terms. I treated myself pretty well, but I wasn't perfect by any means. I drank alcohol and put myself on every herbal supplement that even remotely helped liver function. I continue to take Milk Thistle even though there are some that disagree with its value. I have always had excellent Liver function studies, and felt that part of it was a result of how I took care of myself. I could've been better by all means, but I got lucky as compared to many I've crossed paths with. Whatever decisions I might make in the future will be done with a lot more research and inner reflection. Whatever choices you make, make wise ones. Good luck to all!
Your correct Tig56, that most medical professionals and most forums do not support herbal treatments for Hep C.
I have 2 close friends who did use herbal treatments (milk thistle & a strict diet) and succeeded.
I asked my hepatologist who did not deny that it is possible, but rare.
If I ever get it back (heaven forbid!), I will try herbs before repeating tx again.
Good for you Angie for being proactive in your health! Your kids are healthy, so just take it day by day. No need to worry.
Hi Angela, Congrats on starting the new treatment. I'm on the last 9 weeks of the treatment. Let me know if you have any questions. I posted about my sx. I had a lot of them. Doable though. best, Kellie
Congratulations Ken on the svr! That's awesome.
Hi Angela,
Good luck with treatment. At your age I hope the side effects are minimal, and you have an excellent chance of SVR. Keep us posted. Cheers.
Angie I want to wish you all the luck in the world. I was on the two drug treatment at one time and the dr told me it was not working for me. I started the triple treatment last July. So that but me in the 57% range. I am six months post treatment and I am HCV free. I hope that makes you feel better. These drugs effect everyone different. I am going to tell you they KICKED MY BUTT. Stay strong and hang in there. There are a lot of GREAT people on this board for you. God bless.
Ken
Glad you know what your genotype is now, Angie, and 1a is pretty much what you expected to hear. You`re bound to be feeling apprehensive, that`s only natural, but you can be sure of getting plenty of support here. We have many members who have had experience of treatment with incivek and they will be very happy to share advice and tips on dealing with the side effects.
Best of luck and keep us posted! You can do this!
Good luck to you!!! I know we will be hearing alot more from you in the future. Just keep a positive attitude cause you can beat this thing.
angie.
so happy to hear both your children are hep-c free!
my beloved sister ,didn't believe in traditional medicine. about 7 years ago she was magically undetected after working with herbalists.
i myself believe in traditional treatments and am on my 2nd round. my sister never did tx. also both her kids are viral free. somehow i gave you the belief i don't believe in treatment. sorry
sandy,ucbgal
Tig, thanks for the info.
angie,
she was a free spirit/hippie who stretched the truth. i know she took milk thistle,and gave up all alcohol. i believe giving up the alcohol and never working a day in her life,less stress,may have cleared her. prior to her tragic car accident she sounded and looked the healthiest i've ever seen her.
sandy,ucbgal
I believe most conventional medical professionals are going to loudly nix the idea of herbal cures for HCV. I think they have a supportive role for some patients unable to take conventional treatments or choose not to, but the jury remains out in many people's minds. Here's an article that may provide an introduction to it.
http://www.webmd.com/hepatitis/features/hepatitis-c-alternative-treatments?page=1
angie.
so happy to hear both your children are hep-c free!
my beloved sister ,didn't believe in traditional medicine. about 7 years ago she was magically undetected after working with herbalists.
i myself believe in these treatments. thus she never did tx. also both her kids are viral free.
sandy,ucbgal
angie,
just wanted to let you know it is a shocker when you find out you have hep-c when donating blood. for myself i was diagnosed right after 9/11.
have never done i-v drugs,but enjoyed snow . that's my most likely point of contact or my allergist when i was much younger. only myself and one other sibling went to the same allergist. she also had hep-c .
whatever you decide i only wish you the best. you have 2 children and the triplex is a very long and tedious/rigorous treatment.
the beauty of the tx is that you have an 87% curable range. unfortunately those of us who've had prior treatment have only a 57% curable range. i wasn't informed of this until the day prior to my 1st dart. anyway,i'm certain i'd have faced this challenge. fortunately you have a lower viral load and enzymes.
keep strong and follow all the advice re:side effects.
sandy,ucbgal
Excellent news, Angie!!
Really pleased for you, I remember how relieved I felt when my 2 kids tested negative!
Best of luck with your appointment on 1st July, hopefully you should have a better idea of your tx options after that.
Keep us updated!
I hope to get to know you guys better. :)
great news! i was so relived when my mom n gf got negative results on hcv markers.
i got fatty liver (a bit) from genotype 3. Before i knew my gt, i had fatty liver as a good sign that its gt3. I was right. As Jill said, fatty livers is most common in gt3 (but why, we still do not know).
i hope you get on some interferon free thetapy and evict that pesky liver occupier for good ;)
medical science in last 2 years is really maing some great developments with new and really effective meds witohut old school interferon bombardment ;)
all the best
That's great news Angie, good luck on the future.
Thats the best news I have heard all day! Now its time to concentrate on you and getting better, and I am gonna get better too!!
ToniB... Hello, it does sound like we will be starting treatment close together! Perhaps we can help each other get through it. I have yet to get a start date on mine but I'm sure it won't be too far off from when you begin. I have to get a bunch of info still. I have been thinking of starting antidepressants too..I actually already have them because my doctor and I were going to see if they would work for lessening my migraine attacks. Celexa is the med. I also have anxiety and always have had it so I'm sure it will be of much help to me..especially once tx starts. I have been waiting to start them until after I get the ok from the specialist that I am to see on the 1st. I don't want to take anything that I may have to stop or switch. I'm not positive on this but I don't think anyone with HCV is recommended to take extra iron if it isn't needed via doctors orders.
Hi Angie, I am also new and I have my appt on July 1 for my "starting" blood test. I am all set with my meds they have been approved from my insurance co, and I am gonna start on Friday July 5.
I wanted to let you know that I also had my 3 children tested and they all are negative. I wish you all the luck with your sons results.
I am thinking seriously of starting an antidepressant prior to my start date, so when I go for my appt on 7/1 I am gonna get a prescription for that. I am feeling very anxious already and if I get any symptoms from the antidepressant I don't want to be thinking its from the HCV therapy.
I am gonna be on the triple therapy with the peg interferon and the ribavirin start and on the 29th day I will start the victrelis. And yes I am scared to death too!
I wanted to write to you because it seems like you and I will be starting together.
Someone told me that I should not take alot of iron because the interferon does not work well with high iron in the blood, but I don't know too much about it.
lol i need to start writing this stuff down for my doc appt.
hope you keep in touch!
Hi Angie, brilliant news that your son`s test was clear, what a relief for you! Now all you need is some good news about your daughter`s results, and then you`ll be able to relax and start preparing to start treatment. Good news that your insurance is on track now.
You`re bound to be feeling anxious, anyone would be...let us know how it goes. Thinking of you...Jill
It`s what we`re here for, Angie! We`ve been through it ourselves so we know what it`s like trying to make sense of it all. You`ll be fine, once you`ve done the treatment and hopefully cleared the virus you`ll have a new healthy life ahead of you! You`re going through a stressful time right now with all this going on as well as the divorce, but things are looking up, especially if you get good news from the kids` results, which is highly likely going from our experience here on the forum.
Keep moving forward step by step, it`s all coming together for you! And you`re welcome to vent any time!
Well, it`s possible to develop fatty liver with any of the genotypes but for some unknown reason it`s more prevalent with genotype 3. The good news is that it`s likely to improve or be reversed once the virus has been treated and cleared. And it`s the same with fibrosis, yes, once the virus has gone your liver can repair itself to a large extent. All in all, not a bad result at all then!
Thinking of you having your kids tested next week, you`ll feel a lot happier once that`s done.
Hi again Angie, well, your viral load isn`t too bad actually, 3 million isn`t that high compared to what many people here have (or had), and a viral load count below 5 million is often considered to be medium.
An ultrasound can detect the scar tissue which happens in cirrhosis, but it won`t detect fibrosis. A biopsy would give a much clearer picture of the health of your liver, and many people do get one done before starting tx, but not everyone does. That`s something you could mention to your doctor on Monday.
A fatty liver suggests that you have genotype 3 as it`s more commonly found with that genotype. Yes, you can do a lot to help that by diet and exercise.
Best of luck with your appointment next week, let us know how it goes. ~ Jill
Welcome Angie!�
� I have another reassuring story for you. My 2 kids were young teenagers by the time I was diagnosed but they both tested negative too... and bear in mind that my husband also had Hep C.� We must both have been infected before the kids were born, so it was a big relief that they were ok.�
Best of luck with your test results, and feel free to share your story and how you`re feeling anytime here, we all understand!
Keep in touch!� ~ Jill
Hep C and I had C-sections and they were 17
And 11 when I found out I had Hep C!
I was honest with my children and I have been
Sober for 26 years.
Rejoice that we have a great chance of beating
Hep C. I was on treatment 11 years ago
Didnt clear the virus. I finished 48 weeks on
Triple tx w Invicek and have cleared the virus.
If we stay cleared 6 months post tx, then it's
Considered gone or SVR.
When I took treatment 11 years ago, I
Stopped tx at 9 months cause it wasn't clearing
Virus. If virus was UND I would be on tx 12 months.
This is same as Malcolm.
But what matters most is beating this virus.
Genotype is important to know.
Welcome, glad you found the forum.
It has meant so much to me and you
Start caring about those who walk the road w you
On thus forum. A lot of success stories.
hi Angie,
Just want to let you know that I found out I had Hep C when my children were 14, 16 & 17 in 2007. I was terrified that I'd "killed" my own children. By that age I had expereinced a lot of boo-boos and had even shared razors with my 2 girls. After all, I'd tested neg on HIV and Hep C wasnt a thought in my brain.
I had them tested under a guise of a 'checkup' because I didn't know how to tell them that their mother (their old brownie, girl scout leader, baseball mom, etc,etc) had been into hardcore drugs in a previous life. My kids were all negative. They are fine. My husband too. In all those yeasrs, of parenting and being a wife - lots of blood. Don't worrry.
Last yeaar I did the triple treatment and am now undetectable. I had to tell them that I had Hep C. The second you look that up on internet it says transmitted by using neeedles or getting a transfusion. I considered telling them that I had aquired it by saving someone's life in a bloody car accident but opted for telling them the truth. I had made a mistake when I was young.
Turns out they'd seen plenty on the 70's and thought nothing of it.
Angie, We all freaked out. Welcome here. You're not alone.
Welcome Angie, most of us have had a streak of bad luck but hopefully it's all gonna change. Keep us posted..
Hi Angie,
you've had such a stint of bad luck it seems unfair doesn't it. Well a lot of us are on the same journey all hoping for the best outcomes. Researchers have made huge break throughs in understanding the kenetics of the virus since your first treatment plan, and things have improved 100%.
There are quiet a few people on this forum participating in trials that are showing impressive results and halving treatment times by up to 50%.
Any time you have any worries, or need some supporrt, this is what this forum is for.
Let us know how you are doing. :) x
Hi Angie and welcome
lately things in modern medicine are progressing nicely in development of new direct acting antiviral drugs without interferon, so you might finally get rid of hcv for good!
keep us posted with yout results/test
Hi Angie,
Thanks, and sorry to be inquisitive. A lot of us ignore the disease and hope it will go away. At your age, the prospects of successful treatment are excellent. I also had 2 courses of the old 3x week interferon, but relapsed.
I ignored it until I developed cirrhosis and hopefully have cleared the virus with my last 48 weeks of treatment. Your Ultrasound will be normal, but let us know your Genotype and Viral Load when you get them.
We are here to support and help with any questions. Good luck.
Hi Angie,
Welcome to the Forum. I'm a bit confused about your story.
You were diagnosed in 1998 and had a liver biopsy in 2001. Do you know your Genotype? You then had treatment with Interferon and Ribavirin- was it for 6 months or 12 months? Back then, 12 months was standard for all Genotypes. You then tested 'negative'. Was that 6 months after you finished treatment? You would have been under the care of an Hepatologist to receive Ribavirin, as it would have just been approved. Surely there was followup. You speak about the fluctuations in ALT with fish-oil etc so you must have had blood tests. I'm surprised you did not have a followup VL test. Your midwife told you you did not have hepatitis during screening so presumably you had a VL test done when you had your children. Now, last Monday, your doctor told you it's back and you have a high Viral Load. Why did you have your recent blood test, and why would your doctor do a VL test? Sorry for the questions but it's an unusual story.