Hep C Discussion Forum

Karen · Karen

FRIDAY, NOVEMBER 2, 2012 FDA Hepatitis Update - Victrelis (boceprevir) labeling update On November 2, 2012, the Victrelis (boceprevir) package insert and Medication Guide was updated to include postmarketing information about serious acute hypersensitivity reactions observed during bo...

JoAnneh · JoAnneh

Since starting triple tx in May my tongue hurts! And I am on shot 25 of 48! Any suggestions? I use sensitive toothpaste And doc prescribe mouth wash too. Is this staying till I stop tx? I have slept all day after my 25th shot too. To think some stop at 24 Oh I just need to focus and be thankful for any chan...

J2theB · J2theB

http://www.change.org/petitions/gilead-sciences-a-phase-iii-collaboration-for-the-treatment-of-hepatitis-c

pootinlady · pootinlady

went to new Dr. this morning and she wrote on my paper work hep c w/coma, acute nos what does that mean??

grey · grey

Hi everyone, I am new to this forum. I don't know where to start, but I feel like I need to get this off my chest. I have a father who is diagnosed with Hep C, the worst type. He went through almost 1.5 years of treatment and apparently his chances were good of getting rid of it (non detectable after some time)...

Neil_Canuck · Neil_Canuck

I got my week 12 results yesterday and still showing 40 copies. RN says good result and continue on to week 24. I had been informed here that I needed to be UND at week 12 to continue on but the Merkk fact sheet says otherwise. My levels are below 100 IU/ml so therapy continues. Discontinuation of Dosing B...

Marfa · Marfa

I went thru pegasys/ribavarin treatment few years ago and got cleaned after having hcv for all my life (got it from a blood transfusion after my birth). Unfortunately due to labor complication with my son, he got it from me too. I have been monitoring his liver thru blood tests annually and they were pr...

Michaele · Michaele

God bless all of you suffering with this disease, on tx , off tx , caregivers. After alot of thought Ive decided to delay treatment. Im not as strong or as brave as all of you , and I darn well know I would stop. So rather than ruin my chances for cure in the future by developing mutant strains, Ive decided to...

lobo11 · lobo11

I have appoint with VA Doctor Oct 4, 2012 . I can barely walk or talk, don't drive so. Oh yea, I don't drink or smoke. The only thing I know is I am Genotype 1a. OK saw Doctor on Oct 4, he said my ALT scores in blood tests had come down far enough that I did not need the treatment right now, and he would test my blood...

mallani · mallani

I don't qualify to post in the Post Treatment section, but with a numbers of members coming up, this is worth a thought. Those who are lucky enough to get the magic 'SVR' news, will rightly feel proud and optimistic about the future. The advice they get about followup will vary, and everyone will have an...

greenqueen · greenqueen

One of the newest medications used to treat chronic hepatitis C virus (HCV) infection is Incivek (telaprevir). Incivek is a protease inhibitor, taken with peginterferon and ribavirin, and used for HCV patients with genotype 1. A common side effect of Incivek is anorectal discomfort, including a...

JoAnneh · JoAnneh

My skin is tingling and burning very badly on lower arms Feels like fire, any suggestions? Triple tx w/ Invicek 7 weeks. Took third dose Of Invicek 30 minutes ago. No rash just burning Thanks, JoAnne

Clifford · Clifford

looking for a good MD (GI, Hepatologist, GP) on west side of LA pref in SM/Venice areas. If you have any suggestions please let me know, thanks. C

12Step Guy · 12Step Guy

Due to an overstock situation, we will be selling all excess personality liabilities, shortcomings and irritating characteristics. Because of a recent infusion of over $60,000 from a local pharmaceutical company we ended up with an overstock. Don't miss this opportunity to stock up. Our ove...

jwmaher · jwmaher

Hi, I'm oon a countdown. I come off the interferon and ribaviron Nov. 2nd, ten days later I come off the ribaviron. I've been undetected for some time now but have come across a glitch, so to speak. The test I had before the last one showed absolutely no trace of the virus. The lasts test camae back wit...

Neil_Canuck · Neil_Canuck

Just got an email from public health nurse who is my treatment coordinator. Your week 8 viral load showed only 33 copies of the virus were left. When you started therapy you had 4 million copies of the virus. So, that is good news. I hope you are feeling well. If there is any side effects or concerns, pleas...

DavidC · DavidC

Hello, I am 30 years old and 67 kg , I am sure to start treatment or not. I will share with you my test results. And by the way , I wish the best to all of you get well soon and let this goddamn HVC die : Genotype : 1b Viral load : 3662170 and here are blood results don't know if you are familier with them but here we g...

pootinlady · pootinlady

Long story short, my daughter ans 2 year old gran daughter will be moving in with me in 2 months and her soon to be ex has been messing with her head about my hep c and passing it on to my grand daughter. While exposing anyone is always a great concern I would never think of doing that to my granddaughter! So I w...

libgirl07 · libgirl07

Hey guys! I'm trying to figure out what interferon was used in 2003. I can't remember I was only 18 and left all that to my mother to figure out. I wondered if there is a better interferon being used nowadays..

greenqueen · greenqueen

From the Hep C Trust........ This week we went to BBC’s Broadcasting House to record our BBC Radio 4 Appeal. Out of thousands of applications, we were one of 52 charities that were chosen this year. We are all thrilled at the opportunity - the team at the Trust have put so much work into the campaign with i...

Bills · Bills

(The HCV Coalition for "The Cure".) who originate the Petition against Gilead sends me updates on Progress I think They did a good job of stating the reason for the petition up front It's about Gileads greed to have it all while we wait and use Peg-inerferon and Ribaviri. Website is...

andrzej · andrzej

I found out I have hep 6 yrs ago, started treatmnet back then. There is a stigma associated with hep c and as a result I told no one but my wife. Started treatment again do to Invivek, still not advertising, but have told a few more folks. Just wondering what others are doing and if you've been open, what r...

LC · LC

I had my youngest son tested for HCV and we got his results back today - negative! Such a relief!

:

...

cobalt191 · cobalt191

i was wondering whether you can use cannabis whilst on pegasys treatment thanks in advance cobalt191

mallani · mallani

After having HCV for 20 years or more, some of us may have developed liver palms and/or liver skin lesions. Although typically associated with alcoholic hepatitis and cirrhosis, they may be found in any chronic liver disease. Liver palms-' palmar erythema'. This is blotchy redness of the palms of t...

TazKat · TazKat

my alt is 160 my ast 108 that is the most they have ever been since i have kept up with those numbers. well i would have finished treatment 2 weeks agao had i styed on it. but the tooth was killin me. well tooth is still in my mouth. decided to have all the upper (most are capped) pulled & just get dentures...

Lon · Lon

Hello, I have Genotype 1, 3 Million VL. I'm holding off on treatment until next year with hopes of 7977 becoming available. I'm 59 and work out at the gym 4x a week, takes vitamins, eat healthy and get 8 hours sleep a night. I can't seem to make it through the day without a 2 hour afternoon nap. My body be...

12Step Guy · 12Step Guy

Yep, your assignment should you accept it is to learn half smiling or smiling like the Mona Lisa. Why, well first its fun to do. Second it's a great way to confound others and third it's a great expression to use when someone asks you how you're doing? Have fun enjoy the day!

Mary Jane · Mary Jane

Nervous as a cat on a hot tin roof... Was told to wait and take ALL the drugs at one party, so with said and my personality, I can't join into tonites festivities of Friday nite Dart Club I know I can't wait another week, so I guess I will do the Saturday nite Budda belly hookie pokey... Please remember I...

mallani · mallani

Assessing and treating HCV is a complex problem. Ideally, we want an Hepatologist who is experienced in Rx and Sx, up-to-date, sympathetic, willing to answer questions (even if they come from forums or the internet) with adequate Pathology, Radiology and other Speciality backup. Some of us are lu...

Topic		Started By	Replies	Views	Last Post
	FDA Hep Update (Preview) FRIDAY, NOVEMBER 2, 2012 FDA Hepatitis Update - Victrelis (boceprevir) labeling update On November 2, 2012, the Victrelis (boceprevir) package insert and Medication Guide was updated to include postmarketing information about serious acute hypersensitivity reactions observed during bo...	Karen	1	798	Nov 5, 2012 by Biggyb
	Fussy!! 48 weeks! (Preview) Since starting triple tx in May my tongue hurts! And I am on shot 25 of 48! Any suggestions? I use sensitive toothpaste And doc prescribe mouth wash too. Is this staying till I stop tx? I have slept all day after my 25th shot too. To think some stop at 24 Oh I just need to focus and be thankful for any chan...	JoAnneh	14	1054	Nov 5, 2012 by JoAnneh
	Please sign this petition (Preview) http://www.change.org/petitions/gilead-sciences-a-phase-iii-collaboration-for-the-treatment-of-hepatitis-c	J2theB	35	8537	Nov 4, 2012 by Cinnamon Girl
	new DR (Preview) went to new Dr. this morning and she wrote on my paper work hep c w/coma, acute nos what does that mean??	pootinlady	6	1278	Nov 1, 2012 by Cinnamon Girl
	Hepatitis in the family (Preview) Hi everyone, I am new to this forum. I don't know where to start, but I feel like I need to get this off my chest. I have a father who is diagnosed with Hep C, the worst type. He went through almost 1.5 years of treatment and apparently his chances were good of getting rid of it (non detectable after some time)...	grey	4	1316	Oct 27, 2012 by Biggyb
	Week 12 results (Preview) I got my week 12 results yesterday and still showing 40 copies. RN says good result and continue on to week 24. I had been informed here that I needed to be UND at week 12 to continue on but the Merkk fact sheet says otherwise. My levels are below 100 IU/ml so therapy continues. Discontinuation of Dosing B...	Neil_Canuck	10	973	Oct 25, 2012 by mallani
	Tx for 9 year old - go for clin trial or wait? (Preview) I went thru pegasys/ribavarin treatment few years ago and got cleaned after having hcv for all my life (got it from a blood transfusion after my birth). Unfortunately due to labor complication with my son, he got it from me too. I have been monitoring his liver thru blood tests annually and they were pr...	Marfa	8	1543	Oct 18, 2012 by Bills
	Decided to put off Tx (Preview) God bless all of you suffering with this disease, on tx , off tx , caregivers. After alot of thought Ive decided to delay treatment. Im not as strong or as brave as all of you , and I darn well know I would stop. So rather than ruin my chances for cure in the future by developing mutant strains, Ive decided to...	Michaele	9	1226	Oct 17, 2012 by LC
	Advise needed, please (Preview) I have appoint with VA Doctor Oct 4, 2012 . I can barely walk or talk, don't drive so. Oh yea, I don't drink or smoke. The only thing I know is I am Genotype 1a. OK saw Doctor on Oct 4, he said my ALT scores in blood tests had come down far enough that I did not need the treatment right now, and he would test my blood...	lobo11	4	1055	Oct 16, 2012 by greenqueen
	Followup after SVR (Preview) I don't qualify to post in the Post Treatment section, but with a numbers of members coming up, this is worth a thought. Those who are lucky enough to get the magic 'SVR' news, will rightly feel proud and optimistic about the future. The advice they get about followup will vary, and everyone will have an...	mallani	2	828	Oct 15, 2012 by news
	Anal Itching and Other Anorectal Complaints (Preview) One of the newest medications used to treat chronic hepatitis C virus (HCV) infection is Incivek (telaprevir). Incivek is a protease inhibitor, taken with peginterferon and ribavirin, and used for HCV patients with genotype 1. A common side effect of Incivek is anorectal discomfort, including a...	greenqueen	15	2040	Oct 12, 2012 by gatekeep
	Skin on fire- -suggestions? (Preview) My skin is tingling and burning very badly on lower arms Feels like fire, any suggestions? Triple tx w/ Invicek 7 weeks. Took third dose Of Invicek 30 minutes ago. No rash just burning Thanks, JoAnne	JoAnneh	6	994	Oct 11, 2012 by Lornadoone57
	REQ: MD on west side of Los Angeles (Preview) looking for a good MD (GI, Hepatologist, GP) on west side of LA pref in SM/Venice areas. If you have any suggestions please let me know, thanks. C	Clifford	2	768	Oct 9, 2012 by Clifford
	Fall - Negative Personality Overstock Sale (Preview) Due to an overstock situation, we will be selling all excess personality liabilities, shortcomings and irritating characteristics. Because of a recent infusion of over $60,000 from a local pharmaceutical company we ended up with an overstock. Don't miss this opportunity to stock up. Our ove...	12Step Guy	7	1029	Oct 9, 2012 by Shep
	question? (Preview) Hi, I'm oon a countdown. I come off the interferon and ribaviron Nov. 2nd, ten days later I come off the ribaviron. I've been undetected for some time now but have come across a glitch, so to speak. The test I had before the last one showed absolutely no trace of the virus. The lasts test camae back wit...	jwmaher	3	708	Oct 2, 2012 by greenqueen
	Week 8 results (Preview) Just got an email from public health nurse who is my treatment coordinator. Your week 8 viral load showed only 33 copies of the virus were left. When you started therapy you had 4 million copies of the virus. So, that is good news. I hope you are feeling well. If there is any side effects or concerns, pleas...	Neil_Canuck	3	711	Oct 1, 2012 by mallani
	Please give me your advice and suggestions..not sure to start treatment or not (Preview) Hello, I am 30 years old and 67 kg , I am sure to start treatment or not. I will share with you my test results. And by the way , I wish the best to all of you get well soon and let this goddamn HVC die : Genotype : 1b Viral load : 3662170 and here are blood results don't know if you are familier with them but here we g...	DavidC	6	1023	Oct 1, 2012 by LC
	really angry! (Preview) Long story short, my daughter ans 2 year old gran daughter will be moving in with me in 2 months and her soon to be ex has been messing with her head about my hep c and passing it on to my grand daughter. While exposing anyone is always a great concern I would never think of doing that to my granddaughter! So I w...	pootinlady	11	1322	Sep 26, 2012 by Mary Jane
	Typical treatment of 2003 (Preview) Hey guys! I'm trying to figure out what interferon was used in 2003. I can't remember I was only 18 and left all that to my mother to figure out. I wondered if there is a better interferon being used nowadays..	libgirl07	1	800	Sep 26, 2012 by mallani
	The Hepatitis BBC Radio 4 Appeal - Sunday 23rd September 2012 (Preview) From the Hep C Trust........ This week we went to BBC’s Broadcasting House to record our BBC Radio 4 Appeal. Out of thousands of applications, we were one of 52 charities that were chosen this year. We are all thrilled at the opportunity - the team at the Trust have put so much work into the campaign with i...	greenqueen	1	828	Sep 23, 2012 by greenqueen
	GS-7977 (Gilead) and (Bristol-Myers Squibb) Daclatasvir Update (Preview) (The HCV Coalition for "The Cure".) who originate the Petition against Gilead sends me updates on Progress I think They did a good job of stating the reason for the petition up front It's about Gileads greed to have it all while we wait and use Peg-inerferon and Ribaviri. Website is...	Bills	4	2214	Sep 23, 2012 by TazKat
	Do You Cover Up? (Preview) I found out I have hep 6 yrs ago, started treatmnet back then. There is a stigma associated with hep c and as a result I told no one but my wife. Started treatment again do to Invivek, still not advertising, but have told a few more folks. Just wondering what others are doing and if you've been open, what r...	andrzej	11	1422	Sep 22, 2012 by Daook
	One down, one to go... (Preview) I had my youngest son tested for HCV and we got his results back today - negative! Such a relief! :...	LC	2	661	Sep 22, 2012 by LC
	using cannabis (Preview) i was wondering whether you can use cannabis whilst on pegasys treatment thanks in advance cobalt191	cobalt191	25	4010	Sep 21, 2012 by brisscoss
	Liver palms and liver spots (Preview) After having HCV for 20 years or more, some of us may have developed liver palms and/or liver skin lesions. Although typically associated with alcoholic hepatitis and cirrhosis, they may be found in any chronic liver disease. Liver palms-' palmar erythema'. This is blotchy redness of the palms of t...	mallani	1	1569	Sep 20, 2012 by Neil_Canuck
	Very Very Depressed today!! (Preview) my alt is 160 my ast 108 that is the most they have ever been since i have kept up with those numbers. well i would have finished treatment 2 weeks agao had i styed on it. but the tooth was killin me. well tooth is still in my mouth. decided to have all the upper (most are capped) pulled & just get dentures...	TazKat	6	997	Sep 18, 2012 by mallani
	Fatigue Question (Preview) Hello, I have Genotype 1, 3 Million VL. I'm holding off on treatment until next year with hopes of 7977 becoming available. I'm 59 and work out at the gym 4x a week, takes vitamins, eat healthy and get 8 hours sleep a night. I can't seem to make it through the day without a 2 hour afternoon nap. My body be...	Lon	18	1672	Sep 17, 2012 by goggsmackay
	I'm declaring Monday - Smile like the Mona Lisa Day (Preview) Yep, your assignment should you accept it is to learn half smiling or smiling like the Mona Lisa. Why, well first its fun to do. Second it's a great way to confound others and third it's a great expression to use when someone asks you how you're doing? Have fun enjoy the day!	12Step Guy	3	740	Sep 17, 2012 by Bills
	Hey Lucy.. the 1st BOX arrived today (Preview) Nervous as a cat on a hot tin roof... Was told to wait and take ALL the drugs at one party, so with said and my personality, I can't join into tonites festivities of Friday nite Dart Club I know I can't wait another week, so I guess I will do the Saturday nite Budda belly hookie pokey... Please remember I...	Mary Jane	10	1001	Sep 16, 2012 by LC
	How to choose your Hepatologist- if you can. (Preview) Assessing and treating HCV is a complex problem. Ideally, we want an Hepatologist who is experienced in Rx and Sx, up-to-date, sympathetic, willing to answer questions (even if they come from forums or the internet) with adequate Pathology, Radiology and other Speciality backup. Some of us are lu...	mallani	1	858	Sep 16, 2012 by LC
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