Hep C Discussion Forum

patiently_waiting · patiently_waiting

I'm supposed to find out if I can start treatment on Thursday and time is passing like molasses. It doesn't help that things are really slow with work right now. The Mavericks lost last night so they're out of the playoffs. Another week till the next Game of Thrones episode. I'm trying not to obsess...

Tig · Tig

Hi Everyone, I've made some additions and updates to our list of payment assistance programs here on the forum. The thread is closed to additions and commentary because we wanted to keep the information readily available and prevent it's loss in a lengthy post count. Wayne (Oldenslow) gave me some n...

Matt Chris · Matt Chris

Hello All I am bringing this thread up now because I finally was informed via email from Abbvie / Turquoise II Trial doctor that my relapse was not caused from Rav's / Virus mutations. This is significant because I was UND at treatments end and for 2 or 3 weeks after (proved by blood tests) but on week 4 pos...

patiently_waiting · patiently_waiting

So here is my historical lab results for ALT/AST. I have absolutely no explanation for the extreme jump in November of last year. I haven't drank alcohol nor am I taking any medication other than Benadryl and the occasional ibuprofen. I take Benadryl almost nightly for sleep but I've been doing th...

jimbob · jimbob

I have accepted an invitation to play golf around May 17. By that date I should be 10 darts into tx. I have hit a couple of small buckets of balls recently, but have been either covered, or somewhat in a shaded area. Hitting ball after ball made me a little dizzy and winded. Of course I'll have breaks in bet...

Lizzy · Lizzy

IF YOUR HEALTH IS STRONG, SAY "NO" TO TREATMENT WITH INTERFERON - BUT CONTINUE TO SEE YOUR GASTROENTEROLOGIST - EVERY TIME INSISTING ON THE NEW TREATMENTS - WE NEED A MASS MOVEMENT OF PATIENTS REFUSING THIS TREATMENT - THE ONLY MEDICINES WE SHOULD PERMIT DOCTORS TO TREAT US WITH ARE THE NEW...

Cinnamon Girl · Cinnamon Girl

An interesting article which raises many questions of cost/health benefits and moral obligation to prisoners and the wider community. Here are some quotes from the article, to read it in full follow the link...`If used widely, a new generation of antiviral drugs has the potential to wipe out the d...

Matt Chris · Matt Chris

http://democrats.energycommerce.house.gov/sites/default/files/documents/Martin-Gilead...

mallani · mallani

Hi all, There are many questions on the Forum about fibrosis regression after SVR. This is a complex subject. Three genes have been identified, that hasten fibrosis progression in HepC. Hopefully, this is only of academic interest, as most patients will now be cleared of the virus before cirrhosis...

suziq · suziq

Benitec Proceeds With First In Man Trial for TT - 034: A Single Injection To Treat Hepatitis C Posted: 14 Jan 2014 10:02 AM PST Hepatitis C Trial To Proceed 1/14/2014 9:04:01 AM Sydney Australia, 14th January 2014: RNAi - based therapeutics company Benitec Biopharma Limited (ASX: BLT) today anno...

patiently_waiting · patiently_waiting

I'm curious what experiences folks have had in getting approved for the Sovaldi/Olysio combo, given it's off-label. I've read several reports here of people getting approved and some who haven't. I'm thinking maybe we can compile a list of who is approving and who isn't. I'll start the list wi...

patiently_waiting · patiently_waiting

I have a very high viral load of 23mil. I have yet to read any other posts by anyone who's had a viral load this high. Is there any information on how this may affect the outcome of treatment using the new meds that are coming out?

michele · michele

I posted this in the wrong forum before, I am learning this sight :) !!!!! Hi guys, I haven't been here in awhile, my new gastro is very persistent so she encouraged me to start treatment, she says the new med that would be great for me is solvidar (sp) and riba kit, my viral load is 2147500 geno...

ss · ss

Has anybody had a problem with the bladder with red spots tht show their cells have been abnormal due to triple therapy

TazKat · TazKat

Yay. pharmacy folks called me & i have been approved for the sovaldi interferon & riba treatment. just got to work on assistance with the riba & interferon co pay. coapy for sovaldi is only 5$. i had been dreading this, but when they actually told me i was doing the happy dance. this is 4th a...

Liamc · Liamc

Hi, went for an interview today for an Abbvie trial coming up, its called Abt 333/Abt267 2nd generation n55a inhibitor plus rbv has any one any knowledge of this treatment? thanks

Karen · Karen

My friend called today to let me know that she went for a general physical which included basic blood work. There was one test she did not recognize...HCV. When asked about this, the doctor told her that running a test for hep c is now standard protocol for her age group... I was amazed and very pleased...

hyrulehero08 · hyrulehero08

Listen to this interview about a man living with Hep C. Pretty inspiring stuff: bit.ly/manschool14 Living with the Disease -- Edited by Tig56 on Saturday 29th of March 2014 08:08:21 PM

Tig · Tig

This may help those interested or having questions regarding the liver function tests. This is a PDF file that does a decent job of explaining the LFT's and the various functions involved. I hope it helps to educate and clear up some of these often confusing test results. LFT's: Sorting out the Diagno...

TazKat · TazKat

I hve been itching (am not on any treatment) nurse practioner gve me this stuff to drink twice a day .to see if liver was doing this terrible itch to me. I really can't tell if it is doing anything. just wondering if anyone here had ever delat with this.. Taz

Barnacle · Barnacle

I don't know what might be causing this but last week I had an MRI done on my liver. The tech went to put the IV in and had trouble getting a good vein. As a result I had a big bruise. My platelet count is down around 71 so that accounts for the bruising but with all my recent bloodwork and lab tests the technicia...

Barnacle · Barnacle

I have not started treatment yet (another week) and I have heard itching can be a Sx but I'm already there big time. Every night around 8ish I start to itch first like spider webs on my face and upper body then all over skin crawling. I am having trouble sleeping and see most every 3am roll past on my clock. I...

tomyboy · tomyboy

Please excuse this lazy writer and I hope I find you all in good health and spirit. It's been a while since I have visited this forum. Just wanted to update and ask a few questions. Tom and I recently went for his three month liver CT scan. This was our third check up and the cancer hasn't returned and we ar...

roguebobby · roguebobby

Hi, I'm a 25 year old who has had HCV for 4 years. I would really like to begin treatment, but for three years now every time I've gone in for testing, my initial round of blood work has fairly high viral load, but then each time my doctor has had me come in again to determine a genotype, hoping to begin treat...

aprileee · aprileee

Just so everyone knows (if you didn't already) just because a company mails you your meds from a completely different state, doesn't mean that they are not a "local retail pharmacy." Makes zero sense. How was I supposed to know that? You would think my doctors office would know that they we...

catnapt · catnapt

Hi I have not been diagnosed with Hep C, in fact, I haven't been tested yet. I'm just really curious if someone could have Hep C for decades and not know it? Dr says I need to be tested, even though I'm 58 and the last possible exposure would be over 35 yrs ago (did dabble a little in drugs as did many of my gener...

JoAnneh · JoAnneh

dropping by to report how good I feel at 11 months post treatment/achieved SVR. I feel better now than I did before starting treatment. My treatment was hard and it took till now for me to feel brand new! Spring is arriving and I am working out and experiencing good energy levels! So grateful for stre...

MusicMan · MusicMan

Hello everyone. I've enjoyed reading your posts. I suppose I will just dive right in. I didn't know I was infected with Hep C until my wife and I were trying to have a baby through IVF. Apparently my blood test showed the anti-bodies and now my world has been turned upside down.I have a factor 8 deficiency...

findingthecure · findingthecure

Hi, I cleared the virus using a new clinical trial but I have a friend of mine who is on victrelis and wants to know if he can stop it two weeks early. He's on the Response Guided Therapy and is due to end at 28 weeks, but feels like his doctor is hinting that he can stop any time he wants to (he has three weeks to g...

gerewolf · gerewolf

Julia has been waiting for the new medicines to come out so she won't have to take interferon. Now we read that the new medicines will cost $1000 a pill! Is this really true? Will the new medicines be too expensive? Will insurance not pay for them? thanks.

Topic		Started By	Replies	Views	Last Post
	tic........toc (Preview) I'm supposed to find out if I can start treatment on Thursday and time is passing like molasses. It doesn't help that things are really slow with work right now. The Mavericks lost last night so they're out of the playoffs. Another week till the next Game of Thrones episode. I'm trying not to obsess...	patiently_waiting	4	798	May 6, 2014 by jimbob
	PAYMENT ASSISTANCE PROGRAMS (Preview) Hi Everyone, I've made some additions and updates to our list of payment assistance programs here on the forum. The thread is closed to additions and commentary because we wanted to keep the information readily available and prevent it's loss in a lengthy post count. Wayne (Oldenslow) gave me some n...	Tig	2	694	May 1, 2014 by Fireman Rob
	End of Treatment Strategy & Recommendations (Preview) Hello All I am bringing this thread up now because I finally was informed via email from Abbvie / Turquoise II Trial doctor that my relapse was not caused from Rav's / Virus mutations. This is significant because I was UND at treatments end and for 2 or 3 weeks after (proved by blood tests) but on week 4 pos...	Matt Chris	8	1508	Apr 28, 2014 by Gator Man
	I can't explain my lab results (Preview) So here is my historical lab results for ALT/AST. I have absolutely no explanation for the extreme jump in November of last year. I haven't drank alcohol nor am I taking any medication other than Benadryl and the occasional ibuprofen. I take Benadryl almost nightly for sleep but I've been doing th...	patiently_waiting	20	1626	Apr 28, 2014 by mallani
	Question (Preview) I have accepted an invitation to play golf around May 17. By that date I should be 10 darts into tx. I have hit a couple of small buckets of balls recently, but have been either covered, or somewhat in a shaded area. Hitting ball after ball made me a little dizzy and winded. Of course I'll have breaks in bet...	jimbob	6	816	Apr 26, 2014 by jimbob
	If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon (Preview) IF YOUR HEALTH IS STRONG, SAY "NO" TO TREATMENT WITH INTERFERON - BUT CONTINUE TO SEE YOUR GASTROENTEROLOGIST - EVERY TIME INSISTING ON THE NEW TREATMENTS - WE NEED A MASS MOVEMENT OF PATIENTS REFUSING THIS TREATMENT - THE ONLY MEDICINES WE SHOULD PERMIT DOCTORS TO TREAT US WITH ARE THE NEW...	Lizzy	9	1118	Apr 25, 2014 by Groupergetter
	Should Prisoners Get Expensive Hepatitis C Drugs? (Preview) An interesting article which raises many questions of cost/health benefits and moral obligation to prisoners and the wider community. Here are some quotes from the article, to read it in full follow the link...`If used widely, a new generation of antiviral drugs has the potential to wipe out the d...	Cinnamon Girl	15	1364	Apr 22, 2014 by tomyboy
	Gilead & Sovaldi Under Attack by Fed & State Government (Preview) http://democrats.energycommerce.house.gov/sites/default/files/documents/Martin-Gilead...	Matt Chris	13	3119	Apr 21, 2014 by Fireman Rob
	Cirrhotics after SVR (Preview) Hi all, There are many questions on the Forum about fibrosis regression after SVR. This is a complex subject. Three genes have been identified, that hasten fibrosis progression in HepC. Hopefully, this is only of academic interest, as most patients will now be cleared of the virus before cirrhosis...	mallani	7	1638	Apr 19, 2014 by mallani
	One Shot Cure Clinical trials start approved by FDA (Preview) Benitec Proceeds With First In Man Trial for TT - 034: A Single Injection To Treat Hepatitis C Posted: 14 Jan 2014 10:02 AM PST Hepatitis C Trial To Proceed 1/14/2014 9:04:01 AM Sydney Australia, 14th January 2014: RNAi - based therapeutics company Benitec Biopharma Limited (ASX: BLT) today anno...	suziq	15	2203	Apr 17, 2014 by jimbob
	Insurance Company Policies on Sovaldi/Olysio (Preview) I'm curious what experiences folks have had in getting approved for the Sovaldi/Olysio combo, given it's off-label. I've read several reports here of people getting approved and some who haven't. I'm thinking maybe we can compile a list of who is approving and who isn't. I'll start the list wi...	patiently_waiting	13	2353	Apr 17, 2014 by Tig
	High Viral Load (Preview) I have a very high viral load of 23mil. I have yet to read any other posts by anyone who's had a viral load this high. Is there any information on how this may affect the outcome of treatment using the new meds that are coming out?	patiently_waiting	1	614	Apr 16, 2014 by Caryn
	THIS IS HAPPENING SO FAST (Preview) I posted this in the wrong forum before, I am learning this sight :) !!!!! Hi guys, I haven't been here in awhile, my new gastro is very persistent so she encouraged me to start treatment, she says the new med that would be great for me is solvidar (sp) and riba kit, my viral load is 2147500 geno...	michele	8	1345	Apr 16, 2014 by Tig
	Men only (Preview) Has anybody had a problem with the bladder with red spots tht show their cells have been abnormal due to triple therapy	ss	3	906	Apr 11, 2014 by Tig
	YAY!!! Got accepted!! (Preview) Yay. pharmacy folks called me & i have been approved for the sovaldi interferon & riba treatment. just got to work on assistance with the riba & interferon co pay. coapy for sovaldi is only 5$. i had been dreading this, but when they actually told me i was doing the happy dance. this is 4th a...	TazKat	4	648	Apr 8, 2014 by TazKat
	First interview for trial (Preview) Hi, went for an interview today for an Abbvie trial coming up, its called Abt 333/Abt267 2nd generation n55a inhibitor plus rbv has any one any knowledge of this treatment? thanks	Liamc	4	1423	Apr 5, 2014 by Liamc
	We are making progress (Preview) My friend called today to let me know that she went for a general physical which included basic blood work. There was one test she did not recognize...HCV. When asked about this, the doctor told her that running a test for hep c is now standard protocol for her age group... I was amazed and very pleased...	Karen	1	623	Apr 4, 2014 by Tig
	Hepatitis Interview (Preview) Listen to this interview about a man living with Hep C. Pretty inspiring stuff: bit.ly/manschool14 Living with the Disease -- Edited by Tig56 on Saturday 29th of March 2014 08:08:21 PM	hyrulehero08	9	1458	Mar 30, 2014 by Cinnamon Girl
	Liver Functions Tests (LFT) Explained (Preview) This may help those interested or having questions regarding the liver function tests. This is a PDF file that does a decent job of explaining the LFT's and the various functions involved. I hope it helps to educate and clear up some of these often confusing test results. LFT's: Sorting out the Diagno...	Tig	1	761	Mar 28, 2014 by Matt Chris
	has anyone ever heard of cholestyramine for oral suspension (Preview) I hve been itching (am not on any treatment) nurse practioner gve me this stuff to drink twice a day .to see if liver was doing this terrible itch to me. I really can't tell if it is doing anything. just wondering if anyone here had ever delat with this.. Taz	TazKat	9	1249	Mar 26, 2014 by TazKat
	collapsing veins? (Preview) I don't know what might be causing this but last week I had an MRI done on my liver. The tech went to put the IV in and had trouble getting a good vein. As a result I had a big bruise. My platelet count is down around 71 so that accounts for the bruising but with all my recent bloodwork and lab tests the technicia...	Barnacle	3	900	Mar 26, 2014 by TazKat
	Night itches HELP! (Preview) I have not started treatment yet (another week) and I have heard itching can be a Sx but I'm already there big time. Every night around 8ish I start to itch first like spider webs on my face and upper body then all over skin crawling. I am having trouble sleeping and see most every 3am roll past on my clock. I...	Barnacle	9	1740	Mar 24, 2014 by Barnacle
	Hi All (Preview) Please excuse this lazy writer and I hope I find you all in good health and spirit. It's been a while since I have visited this forum. Just wanted to update and ask a few questions. Tom and I recently went for his three month liver CT scan. This was our third check up and the cancer hasn't returned and we ar...	tomyboy	3	766	Mar 24, 2014 by tomyboy
	Viral load too low for genotyping (Preview) Hi, I'm a 25 year old who has had HCV for 4 years. I would really like to begin treatment, but for three years now every time I've gone in for testing, my initial round of blood work has fairly high viral load, but then each time my doctor has had me come in again to determine a genotype, hoping to begin treat...	roguebobby	2	775	Mar 22, 2014 by Cinnamon Girl
	US health care system is wacky! (Preview) Just so everyone knows (if you didn't already) just because a company mails you your meds from a completely different state, doesn't mean that they are not a "local retail pharmacy." Makes zero sense. How was I supposed to know that? You would think my doctors office would know that they we...	aprileee	3	811	Mar 21, 2014 by Tig
	possibly stupid question? (Preview) Hi I have not been diagnosed with Hep C, in fact, I haven't been tested yet. I'm just really curious if someone could have Hep C for decades and not know it? Dr says I need to be tested, even though I'm 58 and the last possible exposure would be over 35 yrs ago (did dabble a little in drugs as did many of my gener...	catnapt	5	1009	Mar 18, 2014 by Cinnamon Girl
	Post treatment (Preview) dropping by to report how good I feel at 11 months post treatment/achieved SVR. I feel better now than I did before starting treatment. My treatment was hard and it took till now for me to feel brand new! Spring is arriving and I am working out and experiencing good energy levels! So grateful for stre...	JoAnneh	15	1070	Mar 17, 2014 by newmex
	Really Scared! ( 1 2 ) (Preview) Hello everyone. I've enjoyed reading your posts. I suppose I will just dive right in. I didn't know I was infected with Hep C until my wife and I were trying to have a baby through IVF. Apparently my blood test showed the anti-bodies and now my world has been turned upside down.I have a factor 8 deficiency...	MusicMan	58	4703	Mar 13, 2014 by MusicMan
	Stopping Victrelis Early (Preview) Hi, I cleared the virus using a new clinical trial but I have a friend of mine who is on victrelis and wants to know if he can stop it two weeks early. He's on the Response Guided Therapy and is due to end at 28 weeks, but feels like his doctor is hinting that he can stop any time he wants to (he has three weeks to g...	findingthecure	6	866	Mar 13, 2014 by Gracie
	Are the new medications by Gilead too expensive? (Preview) Julia has been waiting for the new medicines to come out so she won't have to take interferon. Now we read that the new medicines will cost $1000 a pill! Is this really true? Will the new medicines be too expensive? Will insurance not pay for them? thanks.	gerewolf	1	978	Mar 11, 2014 by Tig
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