Hep C Discussion Forum

mallani · mallani

Hi all, This is prompted by another thread, 'Liver damage and repair'. We are all aware that SVR is as good as we can get. The tiny risk of relapse is enough for some to say 'We are not cured- just successfully treated'. We tend to concentrate on the liver. We look at blood tests and are happy to see normal li...

Tig · Tig

Hi Everyone, We so often discuss the impact medications and/or supplements have on our liver health. This searchable website, courtesy of Livertox and the NIH, is very comprehensive and if I may say so myself, a great find and excellent resource for all of us dealing with HCV and the ongoing concerns...

mallani · mallani

Hi all, I'm sitting on the boat, it's 36C, steamy, with not a breath of wind. For once, I wish I was in the Northern Hemisphere.<1% of Forum members will be interested in this, so be warned. I've been wondering about retreatment options after relapse after previous NS-5A treatment (Daclatasvir, L...

Scout · Scout

On my last visit to the doctor we discussed the regional significance of genotype and the area we live in the world. For example North America is a lot of genotype 1, etc. So where are you from what is your genotype? I'm in the US and have genotype 1 A.

mallani · mallani

I have had a few PM's about the difficulty in treating cirrhotics. This has been discussed before, but I'll make this a 'Sticky'. Firstly, only 20-30% of HCV patients will develop cirrhosis, and it usually takes 20-40 years. There are some predisposing factors, such as Genotype 3, obesity, diabete...

mallani · mallani

Hi all, RAV= Resistance Associated Variant. Also called mutations, treatment-induced variants or viral polymorphisms. When infected by HCV, we know there is a dominant viral structure called the 'Wild-Type', and it has a family of very similar viruses, with substitutions of an amino acid or two...

mallani · mallani

Hi all, I haven't done a technical post for a while, and for some this may be of interest. I have been fascinated by Sovaldi (or PSI-7977, then GS-7977) for the last 2 years . Initial claims about it's action (subsequently often repeated by Gilead Sciences) made me question why it could not be used as mon...

mallani · mallani

Hi all, I've been meaning to do a post on this for some time, and was even going to send it to a Journal, but couldn't be bothered with all the Bibliography, rewriting, references etc. I've been through that before. Cirrhosis ( from the Greek- 'yellow condition') has long been regarded as the end stage o...

Iris Dragonfly · Iris Dragonfly

Ever since about 2 or so months after my treatment I started getting a itchy scalp. It has progressed and gotten worse since then, and I'm coming up on my 3 year blood draw so it has been going on for nearly 3 years now. It has made my hair fall out to the point you can see my scalp a few inches beyond my hairline...

Tig · Tig

I found an interesting article on the benefits of coffee in fibrosis reduction. Drink up! A Cup of Joe

david1806 · david1806

Hi all... I haven't been to this site for a long time, in fact I just spotted it in my bookmarks and thought I would leave a message. So about 3 years ago I was lucky enough to get the "newest" treatment - the one in which if I still tested negative 3 months after the treatment finished - then boom, that's...

Tig · Tig

Hi Everyone, I received this message today from NOhep. They're a big voice and advocate for all Heppers. I know several of you have some real hair splitting stories, so I thought you might like to share it and maybe win a door prize, lol! The World Hepatitis Alliance, NOhep and the London School of Hygi...

sleestak · sleestak

Our Innate Immune system after DAA treatments has been an area of concern. I've been trying to keep my finger on the pulse on this topic - not much has been put out. The links below obviously didn't work so you will have to paste them into your browser. The MAIT cells in relation to COVID19 is an area of co...

Nirav · Nirav

Hi Everyone, Hope you and your family are doing well in this pandemic. Just messaged to check about your health and well being. It's been a long time since we haven't been in contact. Times are tough here in india and specially in Mumbai. Hope the situation is under control in your country. I have...

JLynch30 · JLynch30

Yes, I am still ding well after successful treatment! A 5 time loser on Interferon finally beat the dragon on Harvoni! I am wondering if anyone heard anything on liver fibrosis reduction after successful treatment? Are there any cirrhosis studies going in with new treatments? Thanks and I am gl...

Beetree · Beetree

HI Just diagnosed, haven't had the live-virus result yet, I'm still pretty ignorant .... New words to learn: cryoglobulinemia I knew about, but not membranoproliferative glomerulonephritis. Q1 ) I read that Sovaldi was too expensive for the NHS. Does anyone know if that's still the case? Q2a)...

LamontCranston · LamontCranston

I am still alive, and other than the fact that my appetite for vast quantities of food has continued unabated, my health has been generally good, no surprises. The chronic gut issues I had that I think were HepC related are nearly resolved, not totally, but I have only the occasional icky gut day, so I am...

Beetree · Beetree

HI everyone. I'm 63, male, overweight. In the UK. No risky behaviors. Little alcohol Mild blood condition (Von Willebrands) so evidently contracted HCV in 1980 from blood products. (Cryoprecipitate) 1981, HCV test "inconclusive" (uh?) 1982. HCV test negative. Someone new at the hospital wher...

Cheddy · Cheddy

Hi Gang, I thought I would start a new thread for health updates. We have a lot of posts here about flu, bronchitis, and other ailments that plague us. How lovely to have the care we feel for one another. I truly appreciate the support and suggestions. But, I can't tell the topics from the treatment ti...

NickE · NickE

Have been HCV+ for over 30 years now but only diagnosed 2008. Can't remember how long I have been 'clumsy' (catching my foot on the pavement, kicking objects rather than moving around them) but have only very recently been made aware of Perpheral Neuropathy and its relationship with Hep C. Recent yea...

Iris Dragonfly · Iris Dragonfly

Hey folks, I got a notice a few weeks back about being a part of a class action law suit. It is for patients who were denied treatment because they did not have a high enough firbro score. I'm not sure I can find the notice at this point, the chaos of X-mas all the people and having to move stuff around to accom...

Greg D · Greg D

To my wife Linda for her love and support. https://www.youtube.com/watch?v=EImVucJO7Ok

Verylucky7 · Verylucky7

I was infected with hepatitis c when i was a child, but successfully cleared the virus. Now my blood tests show antibody positive but persistently PCR undetectable. My doctor told me that i have no risk of developing liver disease in the long term and can be reassured. In this situation, is it possibl...

Enavigo3891 · Enavigo3891

Hey all - anyone invited to the NVHR Patient Summit in Atlanta GA at the end of July?

tanner · tanner

I sure hope this is starting a new topic wherever I'm supposed to start one, but hopefully this is it. Started Epclusa this weekend. Happy to be on this trek with all of you. Throwin' on my hiking boots, going up that mountain and coming back down on the other side, C free! -- Edited by tanner on Monday 11t...

Iris Dragonfly · Iris Dragonfly

Hi folks, When ill with the virus I felt like I was always getting almost sick and all the time tired. Since treatment I haven't experienced that as much but when it does hit me I feel as though I have the virus again, my throat gets sore, I'm achy, low grade fever, headache, stomach ache and general blaaaa...

Tig · Tig

Good news on the HBV front! Novel vaccine with Viread induces T cell immune response in chronic HBV Boni C, et al. Gastroenterol. 2019;doi:10.1053/j.gastro.2019.03.044.May 31, 2019Researchers found that treatment with a combination of Viread and GS-4774, a yeast-based therapeutic vacc...

Tig · Tig

I received this article today and while it might be hard to swallow, it sounds like it has merit. The study size was small, I wonder why... HE is a terrible condition, let’s hope this is the beginning of better control. Let me know if you have trouble opening it. VIENNA – Patients who swallowed fecal micr...

Story behind user name? · Daook

What is the story behind your user name? Mine is- my Jamaican friends pronunciation of my nick name "The Hook". :)

Michaele · Michaele

HI , Once again I come home to the group for help. I used to have a list of meds safe for use by those with Hep C and/or liver disease . Im trying to find a blood pressure meds that is safe for folks like us , and would like to hear from anyone on HBP meds approved for use by people with our conditions . I have to wo...

Topic		Started By	Replies	Views	Last Post
	STICKY: Can I be cured of Hepatitis C? (Preview) Hi all, This is prompted by another thread, 'Liver damage and repair'. We are all aware that SVR is as good as we can get. The tiny risk of relapse is enough for some to say 'We are not cured- just successfully treated'. We tend to concentrate on the liver. We look at blood tests and are happy to see normal li...	mallani	8	6908	August 11th by katymcbride280
	STICKY: LIVERTOX DATABASE: MEDICATIONS & SUPPLEMENTS (closed) (Preview) Hi Everyone, We so often discuss the impact medications and/or supplements have on our liver health. This searchable website, courtesy of Livertox and the NIH, is very comprehensive and if I may say so myself, a great find and excellent resource for all of us dealing with HCV and the ongoing concerns...	Tig	2	5465	Nov 16, 2018 by Tig
	STICKY: RAV's at the NS-5A site (Preview) Hi all, I'm sitting on the boat, it's 36C, steamy, with not a breath of wind. For once, I wish I was in the Northern Hemisphere.<1% of Forum members will be interested in this, so be warned. I've been wondering about retreatment options after relapse after previous NS-5A treatment (Daclatasvir, L...	mallani	18	8192	Sep 9, 2018 by Tig
	STICKY: Where are you from? What Genotype? ( 1 2 3 4 ) (Preview) On my last visit to the doctor we discussed the regional significance of genotype and the area we live in the world. For example North America is a lot of genotype 1, etc. So where are you from what is your genotype? I'm in the US and have genotype 1 A.	Scout	182	53430	Apr 10, 2018 by Ziggy65
	STICKY: Why are cirrhotics difficult to treat? (Preview) I have had a few PM's about the difficulty in treating cirrhotics. This has been discussed before, but I'll make this a 'Sticky'. Firstly, only 20-30% of HCV patients will develop cirrhosis, and it usually takes 20-40 years. There are some predisposing factors, such as Genotype 3, obesity, diabete...	mallani	13	10385	Oct 13, 2016 by dmoceri31
	STICKY: Understanding RAV's- effect on treatment and re-treatment selection (Preview) Hi all, RAV= Resistance Associated Variant. Also called mutations, treatment-induced variants or viral polymorphisms. When infected by HCV, we know there is a dominant viral structure called the 'Wild-Type', and it has a family of very similar viruses, with substitutions of an amino acid or two...	mallani	6	8737	Jan 28, 2016 by Tig
	STICKY: Understanding Sovaldi (Preview) Hi all, I haven't done a technical post for a while, and for some this may be of interest. I have been fascinated by Sovaldi (or PSI-7977, then GS-7977) for the last 2 years . Initial claims about it's action (subsequently often repeated by Gilead Sciences) made me question why it could not be used as mon...	mallani	38	13483	Jan 10, 2016 by Tig
	STICKY: Cirrhosis in HepC. Do we need a better Grading system? (closed) (Preview) Hi all, I've been meaning to do a post on this for some time, and was even going to send it to a Journal, but couldn't be bothered with all the Bibliography, rewriting, references etc. I've been through that before. Cirrhosis ( from the Greek- 'yellow condition') has long been regarded as the end stage o...	mallani	0	5978	Mar 1, 2015 by mallani
	Does treatment alter your genes? (Preview) Ever since about 2 or so months after my treatment I started getting a itchy scalp. It has progressed and gotten worse since then, and I'm coming up on my 3 year blood draw so it has been going on for nearly 3 years now. It has made my hair fall out to the point you can see my scalp a few inches beyond my hairline...	Iris Dragonfly	45	480	6 days ago by 5-1-18
	Liver Fibrosis and Coffee (Preview) I found an interesting article on the benefits of coffee in fibrosis reduction. Drink up! A Cup of Joe	Tig	3	53	7 days ago by 5-1-18
	CURED!! (Preview) Hi all... I haven't been to this site for a long time, in fact I just spotted it in my bookmarks and thought I would leave a message. So about 3 years ago I was lucky enough to get the "newest" treatment - the one in which if I still tested negative 3 months after the treatment finished - then boom, that's...	david1806	3	794	August 17th by katymcbride280
	NOhep wants your personal HCV story (Preview) Hi Everyone, I received this message today from NOhep. They're a big voice and advocate for all Heppers. I know several of you have some real hair splitting stories, so I thought you might like to share it and maybe win a door prize, lol! The World Hepatitis Alliance, NOhep and the London School of Hygi...	Tig	6	417	May 2nd by hrsetrdr
	Innate Immune system after DAA treatment (Oct 2020) (Preview) Our Innate Immune system after DAA treatments has been an area of concern. I've been trying to keep my finger on the pulse on this topic - not much has been put out. The links below obviously didn't work so you will have to paste them into your browser. The MAIT cells in relation to COVID19 is an area of co...	sleestak	1	312	Jan 11, 2021 by Tig
	Affordable Medicine's (Preview) Hi Everyone, Hope you and your family are doing well in this pandemic. Just messaged to check about your health and well being. It's been a long time since we haven't been in contact. Times are tough here in india and specially in Mumbai. Hope the situation is under control in your country. I have...	Nirav	3	468	Sep 10, 2020 by Harry
	Remember me! (Preview) Yes, I am still ding well after successful treatment! A 5 time loser on Interferon finally beat the dragon on Harvoni! I am wondering if anyone heard anything on liver fibrosis reduction after successful treatment? Are there any cirrhosis studies going in with new treatments? Thanks and I am gl...	JLynch30	5	553	Jul 28, 2020 by wmlj1960
	United Kingdom - specific issues (Preview) HI Just diagnosed, haven't had the live-virus result yet, I'm still pretty ignorant .... New words to learn: cryoglobulinemia I knew about, but not membranoproliferative glomerulonephritis. Q1 ) I read that Sovaldi was too expensive for the NHS. Does anyone know if that's still the case? Q2a)...	Beetree	13	619	Apr 8, 2020 by Tig
	One year after The Cure (Preview) I am still alive, and other than the fact that my appetite for vast quantities of food has continued unabated, my health has been generally good, no surprises. The chronic gut issues I had that I think were HepC related are nearly resolved, not totally, but I have only the occasional icky gut day, so I am...	LamontCranston	6	1344	Apr 7, 2020 by LamontCranston
	Just diagnosed - what can I expect? (Preview) HI everyone. I'm 63, male, overweight. In the UK. No risky behaviors. Little alcohol Mild blood condition (Von Willebrands) so evidently contracted HCV in 1980 from blood products. (Cryoprecipitate) 1981, HCV test "inconclusive" (uh?) 1982. HCV test negative. Someone new at the hospital wher...	Beetree	6	583	Mar 30, 2020 by 5-1-18
	Health Updates - Among Friends ( 1 2 3 4 5 … 10 ) (Preview) Hi Gang, I thought I would start a new thread for health updates. We have a lot of posts here about flu, bronchitis, and other ailments that plague us. How lovely to have the care we feel for one another. I truly appreciate the support and suggestions. But, I can't tell the topics from the treatment ti...	Cheddy	473	13066	Feb 13, 2020 by Harry
	Peripheral neuropathy and Hep C (Preview) Have been HCV+ for over 30 years now but only diagnosed 2008. Can't remember how long I have been 'clumsy' (catching my foot on the pavement, kicking objects rather than moving around them) but have only very recently been made aware of Perpheral Neuropathy and its relationship with Hep C. Recent yea...	NickE	3	677	Jan 31, 2020 by Harry
	Class action law suit (Preview) Hey folks, I got a notice a few weeks back about being a part of a class action law suit. It is for patients who were denied treatment because they did not have a high enough firbro score. I'm not sure I can find the notice at this point, the chaos of X-mas all the people and having to move stuff around to accom...	Iris Dragonfly	8	745	Jan 15, 2020 by Tig
	People I look up to (Preview) To my wife Linda for her love and support. https://www.youtube.com/watch?v=EImVucJO7Ok	Greg D	1	720	Oct 12, 2019 by Tig
	Can I still infect someone if I have cleared the virus on my own? (Preview) I was infected with hepatitis c when i was a child, but successfully cleared the virus. Now my blood tests show antibody positive but persistently PCR undetectable. My doctor told me that i have no risk of developing liver disease in the long term and can be reassured. In this situation, is it possibl...	Verylucky7	4	857	Sep 29, 2019 by Observer
	NVHR Patient Summit - Atlanta GA (Preview) Hey all - anyone invited to the NVHR Patient Summit in Atlanta GA at the end of July?	Enavigo3891	14	1631	Sep 6, 2019 by Love22
	Tanner's Trek with Epclusa ( 1 2 3 ) (Preview) I sure hope this is starting a new topic wherever I'm supposed to start one, but hopefully this is it. Started Epclusa this weekend. Happy to be on this trek with all of you. Throwin' on my hiking boots, going up that mountain and coming back down on the other side, C free! -- Edited by tanner on Monday 11t...	tanner	116	4531	Aug 10, 2019 by Cheddy
	Let's talk about fatigue (Preview) Hi folks, When ill with the virus I felt like I was always getting almost sick and all the time tired. Since treatment I haven't experienced that as much but when it does hit me I feel as though I have the virus again, my throat gets sore, I'm achy, low grade fever, headache, stomach ache and general blaaaa...	Iris Dragonfly	4	1082	Jun 22, 2019 by 5-1-18
	Hep B Updates (Preview) Good news on the HBV front! Novel vaccine with Viread induces T cell immune response in chronic HBV Boni C, et al. Gastroenterol. 2019;doi:10.1053/j.gastro.2019.03.044.May 31, 2019Researchers found that treatment with a combination of Viread and GS-4774, a yeast-based therapeutic vacc...	Tig	1	987	Jun 2, 2019 by Canuck
	Cirrhosis and Hepatic Encephalopathy (Preview) I received this article today and while it might be hard to swallow, it sounds like it has merit. The study size was small, I wonder why... HE is a terrible condition, let’s hope this is the beginning of better control. Let me know if you have trouble opening it. VIENNA – Patients who swallowed fecal micr...	Tig	2	1045	Apr 18, 2019 by Observer
	Story behind user name? ( 1 2 ) (Preview) What is the story behind your user name? Mine is- my Jamaican friends pronunciation of my nick name "The Hook". :)	Daook	68	4695	Apr 3, 2019 by LamontCranston
	HBP Rx and other meds safe for use with liver disease (Preview) HI , Once again I come home to the group for help. I used to have a list of meds safe for use by those with Hep C and/or liver disease . Im trying to find a blood pressure meds that is safe for folks like us , and would like to hear from anyone on HBP meds approved for use by people with our conditions . I have to wo...	Michaele	4	1069	Mar 28, 2019 by Michaele
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