Hep C Discussion Forum

Isiscat2011 · Isiscat2011

The 65th Annual AASLD meeting will be underway soon. For docs who are unable to attend in person there is webcast option for a 2 hour presentation on HCV tx. Just thought the agenda might be of interest to us patients as well. I especially like the presentation about "Showing Interferon the Do...

Sierrajen · Sierrajen

The Specialty Pharmacy called and told me that my first 30 days of Harvoni will be here on Nov 5th. I am quite excited to be rid of this thing that haunts my life and threatens my health. I am hoping for the best and will let you know how it goes as time goes on. I'm not a big talker but I watch here and read I w...

Don't forget non-USA members! · mallani

Hi all, I'm a bit ashamed of the Forum lately. Most posts are about personal problems accessing Harvoni. I can understand this is difficult in these early days after approval, but don't forget this is an International Forum. There are non-US members out there, struggling through treatment, and nee...

Angel67 · Angel67

Well finally all my test results are back and they look pretty good. I am not really sure what they all mean (I can barely count to ten...thank god for my fingers!) Anyway, here they are.... Fibroscan 7.6kpa IQR 1.1, 83% success rate ALT 52 AST 31 AFP 12 Viral load 1000,...

darkstar · darkstar

Abbvie is going to be presenting data on their three drug combo in early November. They filed at the same time that Gilead filed Harvoni for approval. Does anyone have an opinion on the relative efficacy of the two combos. Abbvie's coho is three instead of two drugs!

shadow10cats · shadow10cats

I think that it is very narrow minded of the ins companies to base criteria for treatment on how damaged your liver is. (Taking nothing away from anyone who is this sick so please don't take this the wrong way) Altho I am lucky that I have maintained a pretty healthy liver since being diagnosed in 2004; I...

JLynch30 · JLynch30

https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Pharmacy%20Resources/Harvoni_Medical_Necessity.PDF

Trainhopper · Trainhopper

So on Wednesday of next week I go in for biopsy.... I know its a standard procedure and all but if its just a needle ð then why the heavy sedation for up to 12 hours? Just has me worried is all... Can someone walk me through what happens.... Am I going to be awake? Called my gastroenterologists office and hav...

Mugsy · Mugsy

Here I was, so smug and happy all my ducks were in a row and the much sought after Harvoni would be delivered to my door any day now. So I called Walgreens specialty to see if they had any idea when it would get here. They said I was denied because my insurance(Regence) wasn't contracted with them and it was s...

JLynch30 · JLynch30

I was just looking online for different healthcare guidelines

darkstar · darkstar

It is amazing to me that my insurance is slow to provide Harvoni. In the past, FDA approved drug for an FDA approved indication where there are not any alternatives was a very simple situation. You could get the drug. There is no good reason for the availability to be stalled. However, in my case, th...

Trainhopper · Trainhopper

So my new Dr. is cool. Her name is Seyyad.... But she had a hunch of what might be my problem.... well, educated guess anyway.... She said after 10 or more years of I.V. drug use, she sees people with vascular problems due to scared veins. And I do have really scared veins... It takes a good blood tech to dra...

Bombeni · Bombeni

What are hep c people allowed to use as far as narcotics to treat chronic pain, long term? Has anyone experienced this situation? What do gastroenterologists say about using narcotics, and which ones if any do they approve? i appreciate any advice.

wmlj1960 · wmlj1960

I know nothing about insurance etc and don't know where to find an answer to this question. I've had limited luck finding out anything at the Medicaid office. I have Medicare that pays most (80% I think) of my Dr bills etc. and Envision Rx Plus for medicine, and Medicaid fits into the picture somehow, bu...

Trainhopper · Trainhopper

So... In my endless search to feel better, I was just at my Doctors. She stopped lactulose 30ml. x's2 daily, like 10 days ago. More labs were done friday. My ammonia lvl is higher then it's ever been, and on top of it all my doctor told me I needed to follow up with my G.I. Well my G.I. is keeping me on the back b...

mallani · mallani

Hi all, I must admit that I'm confused about the message Gilead is sending to the Genotype 3's. In the Prescribing Information for Harvoni, it states that Ledipasvir has reduced activity against Genotypes 2 and 3. However, the ongoing Electron2 Trial (Harvoni +/- Riba for 12 weeks), gives 100% SVR r...

Josh Haynie · Josh Haynie

still numb the taste and smell of blood ... do not like hard upper denture took it out have a wet rag in my mouth catching blood .. may or may not go to work in 5 hours... took 1 vicoden and 2 ibuprofen 10 minuets ago.... this sucks but it is not the end of the world best that i try to ignore it as much as possible b...

Josh Haynie · Josh Haynie

Feel better :)

Isiscat2011 · Isiscat2011

Just a few thoughts: If you don't have a doctor's appointment make one. If you do have a doctor's appointment wait for it. If you have seen your doctor and are awaiting tx approval give the process a reasonable amount of time. If your health can afford to wait until the Harvoni dust settles then wait a wh...

Josh Haynie · Josh Haynie

getting all my upper teeth or whats left of them ripd out tommorow... sounds like a good time... hope they are very generous with the novacane.... spose to not smoke for a day or 3 ... proably will anyway... itll take a good week or more to initialy heal then months to really heal... ima try to eat fish st...

Gator Man · Gator Man

I got a call from my doctor with EOT +26 week results (I had to cancel my 24 week appt.) and I'm still UND-all lab values in the normal range. He used the c word for the first time, "cured". Hooray!!! We were chatting about the Harvoni release and its impact on treatment. The doctor said that if I...

patiently_waiting · patiently_waiting

I have done some poking around about this on the web but haven't found anything conclusive. I'm wondering if Malcolm or other knowledgeable folks on this site know the answer to this. I'm wondering what a person's lab results for all the typical tests one would get for HCV or other liver disease woul...

Matt Chris · Matt Chris

This will be a thread leading up to the first FDA approved all oral HCV treatment for GT-1's Hopefully it's contents will be the what, how, why, who and when of getting ready for treatment with Gilead's Sciences Sofosbuvir & Ledipasvir. Please join in as their is much to get ready for. matt -- Edit...

tomyboy · tomyboy

Hi all, Just reporting in. We went to Mt Sinai on Sept 11th for Tom's CT liver scan and he is still cancer free. It was also one month to the day that he started the ribo and solvaldi combo. Dr in city was happy to hear that Tom started the hep c treatment but was surprised his gastro didn't wait for new tr...

Josh Haynie · Josh Haynie

i havent drank since 6-4-14 next Gastro apointment is December 1st.... thats 6 months... at that point you can apply for DAA.... if denied obviously i will challenge or say sumthing like If my liver isnt damaged enough i will get it there it may take 10 or 20 years but it will get done.... beating Hep C i...

robertsamx · robertsamx

Does anyone know the side effects of ABT-450/r/ABT-267 With ABT-333 AbbVie has a trial going on now and a good friend of mine has been asked to come in for screening visit. Please, any info on this woulk help. Thanks RC

shadow10cats · shadow10cats

I have no idea when my insurance company will have Harvoni available for me to take, but I have a discount coupon all printed out and sitting in front of me just ready for my Dr. to provide the prescription! I have CDPHP (NYS employees plan HMO)I imagine when they provide it, Harvoni's cost for me will be...

Huey · Huey

I think we can show an SVR in all the major genotypes now. lets see, Geno 1a's include Basse,D-Day's coming,Tig,Maddie,Kellie,Dee,Suzi, Pizza, Geno 1b's are Pi, both hubby and wife, Peter,Gater and Mallani, Geno 3a's myself and smccune, and I think Marktrux is a geno 2.

wmlj1960 · wmlj1960

I got the link to THIS article from the Hepatitis Central news letter: Over 8 percent of hepatitis C patients taking Sovaldi (sofosbuvir; Gilead) are failing to complete their full, 12-week course of drug therapy, a dropout rate roughly four times that observed in clinical trials. They are wrong...

skewedButNotBroken · skewedButNotBroken

Before I started therapy, if I ate a big meal of any type, 12 hours later it would still be sitting in my stomach or at least it felt like that, but now if I eat a large meal 4 or 5 hours later I'm hungry again. This is a major change for me. My ALT has dropped to 25 and my viral load is < 15. Consequently, I find m...

Topic		Started By	Replies	Views	Last Post
	Showing Interferon the Door (Preview) The 65th Annual AASLD meeting will be underway soon. For docs who are unable to attend in person there is webcast option for a 2 hour presentation on HCV tx. Just thought the agenda might be of interest to us patients as well. I especially like the presentation about "Showing Interferon the Do...	Isiscat2011	9	1221	Nov 4, 2014 by Isiscat2011
	I got the call this morning. (Preview) The Specialty Pharmacy called and told me that my first 30 days of Harvoni will be here on Nov 5th. I am quite excited to be rid of this thing that haunts my life and threatens my health. I am hoping for the best and will let you know how it goes as time goes on. I'm not a big talker but I watch here and read I w...	Sierrajen	8	1295	Nov 2, 2014 by Cinnamon Girl
	Don't forget non-USA members! (Preview) Hi all, I'm a bit ashamed of the Forum lately. Most posts are about personal problems accessing Harvoni. I can understand this is difficult in these early days after approval, but don't forget this is an International Forum. There are non-US members out there, struggling through treatment, and nee...	mallani	11	1135	Nov 1, 2014 by Angel67
	Finally the results of one million test...I wonder what they mean? (Preview) Well finally all my test results are back and they look pretty good. I am not really sure what they all mean (I can barely count to ten...thank god for my fingers!) Anyway, here they are.... Fibroscan 7.6kpa IQR 1.1, 83% success rate ALT 52 AST 31 AFP 12 Viral load 1000,...	Angel67	11	1247	Nov 1, 2014 by Angel67
	New Abbvie drug (Preview) Abbvie is going to be presenting data on their three drug combo in early November. They filed at the same time that Gilead filed Harvoni for approval. Does anyone have an opinion on the relative efficacy of the two combos. Abbvie's coho is three instead of two drugs!	darkstar	12	1766	Nov 1, 2014 by Isiscat2011
	Harvoni & Treatment Criteria (Preview) I think that it is very narrow minded of the ins companies to base criteria for treatment on how damaged your liver is. (Taking nothing away from anyone who is this sick so please don't take this the wrong way) Altho I am lucky that I have maintained a pretty healthy liver since being diagnosed in 2004; I...	shadow10cats	16	3168	Oct 31, 2014 by Josh Haynie
	It looks like United healthcare is on the job (Preview) https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Pharmacy%20Resources/Harvoni_Medical_Necessity.PDF	JLynch30	5	1278	Oct 31, 2014 by Miss B
	kinda worried...... (Preview) So on Wednesday of next week I go in for biopsy.... I know its a standard procedure and all but if its just a needle ð then why the heavy sedation for up to 12 hours? Just has me worried is all... Can someone walk me through what happens.... Am I going to be awake? Called my gastroenterologists office and hav...	Trainhopper	10	938	Oct 31, 2014 by Scruffy
	Dizzy from the runaround (Preview) Here I was, so smug and happy all my ducks were in a row and the much sought after Harvoni would be delivered to my door any day now. So I called Walgreens specialty to see if they had any idea when it would get here. They said I was denied because my insurance(Regence) wasn't contracted with them and it was s...	Mugsy	7	1318	Oct 30, 2014 by Mugsy
	Not sure (Preview) I was just looking online for different healthcare guidelines	JLynch30	0	613	Oct 30, 2014 by JLynch30
	Access (Preview) It is amazing to me that my insurance is slow to provide Harvoni. In the past, FDA approved drug for an FDA approved indication where there are not any alternatives was a very simple situation. You could get the drug. There is no good reason for the availability to be stalled. However, in my case, th...	darkstar	3	803	Oct 27, 2014 by Isiscat2011
	1 problem Identified (Preview) So my new Dr. is cool. Her name is Seyyad.... But she had a hunch of what might be my problem.... well, educated guess anyway.... She said after 10 or more years of I.V. drug use, she sees people with vascular problems due to scared veins. And I do have really scared veins... It takes a good blood tech to dra...	Trainhopper	16	1256	Oct 25, 2014 by Mugsy
	What about pain management? (Preview) What are hep c people allowed to use as far as narcotics to treat chronic pain, long term? Has anyone experienced this situation? What do gastroenterologists say about using narcotics, and which ones if any do they approve? i appreciate any advice.	Bombeni	1	679	Oct 24, 2014 by Dzdayscomin
	Medicare Supplemental Policy Enrollment. (Preview) I know nothing about insurance etc and don't know where to find an answer to this question. I've had limited luck finding out anything at the Medicaid office. I have Medicare that pays most (80% I think) of my Dr bills etc. and Envision Rx Plus for medicine, and Medicaid fits into the picture somehow, bu...	wmlj1960	9	2272	Oct 24, 2014 by Groupergetter
	Ammonia Level of 197 ug. (Preview) So... In my endless search to feel better, I was just at my Doctors. She stopped lactulose 30ml. x's2 daily, like 10 days ago. More labs were done friday. My ammonia lvl is higher then it's ever been, and on top of it all my doctor told me I needed to follow up with my G.I. Well my G.I. is keeping me on the back b...	Trainhopper	34	2897	Oct 22, 2014 by Trainhopper
	Genotype 3? (Preview) Hi all, I must admit that I'm confused about the message Gilead is sending to the Genotype 3's. In the Prescribing Information for Harvoni, it states that Ledipasvir has reduced activity against Genotypes 2 and 3. However, the ongoing Electron2 Trial (Harvoni +/- Riba for 12 weeks), gives 100% SVR r...	mallani	5	1403	Oct 22, 2014 by Angel67
	TEETH POST OP (Preview) still numb the taste and smell of blood ... do not like hard upper denture took it out have a wet rag in my mouth catching blood .. may or may not go to work in 5 hours... took 1 vicoden and 2 ibuprofen 10 minuets ago.... this sucks but it is not the end of the world best that i try to ignore it as much as possible b...	Josh Haynie	7	1518	Oct 21, 2014 by wmlj1960
	TOOTH update (Preview) Feel better :)	Josh Haynie	0	572	Oct 21, 2014 by Josh Haynie
	Patience (Preview) Just a few thoughts: If you don't have a doctor's appointment make one. If you do have a doctor's appointment wait for it. If you have seen your doctor and are awaiting tx approval give the process a reasonable amount of time. If your health can afford to wait until the Harvoni dust settles then wait a wh...	Isiscat2011	6	752	Oct 21, 2014 by Isiscat2011
	TEETH (Preview) getting all my upper teeth or whats left of them ripd out tommorow... sounds like a good time... hope they are very generous with the novacane.... spose to not smoke for a day or 3 ... proably will anyway... itll take a good week or more to initialy heal then months to really heal... ima try to eat fish st...	Josh Haynie	4	962	Oct 21, 2014 by Josh Haynie
	S/O vs. S/L (Preview) I got a call from my doctor with EOT +26 week results (I had to cancel my 24 week appt.) and I'm still UND-all lab values in the normal range. He used the c word for the first time, "cured". Hooray!!! We were chatting about the Harvoni release and its impact on treatment. The doctor said that if I...	Gator Man	19	1447	Oct 16, 2014 by wmlj1960
	Cirrhosis and Lab Results (Preview) I have done some poking around about this on the web but haven't found anything conclusive. I'm wondering if Malcolm or other knowledgeable folks on this site know the answer to this. I'm wondering what a person's lab results for all the typical tests one would get for HCV or other liver disease woul...	patiently_waiting	13	2076	Oct 15, 2014 by Dzdayscomin
	Count Down to Oct 10, 2014 log / What we must do to be ready for Sofosbuvir & Ledipasvir ( 1 2 ) (Preview) This will be a thread leading up to the first FDA approved all oral HCV treatment for GT-1's Hopefully it's contents will be the what, how, why, who and when of getting ready for treatment with Gilead's Sciences Sofosbuvir & Ledipasvir. Please join in as their is much to get ready for. matt -- Edit...	Matt Chris	55	5722	Oct 14, 2014 by Beacon
	Mt Sinai (Preview) Hi all, Just reporting in. We went to Mt Sinai on Sept 11th for Tom's CT liver scan and he is still cancer free. It was also one month to the day that he started the ribo and solvaldi combo. Dr in city was happy to hear that Tom started the hep c treatment but was surprised his gastro didn't wait for new tr...	tomyboy	14	1482	Oct 14, 2014 by tomyboy
	Future Choices of Stupidity ? (Preview) i havent drank since 6-4-14 next Gastro apointment is December 1st.... thats 6 months... at that point you can apply for DAA.... if denied obviously i will challenge or say sumthing like If my liver isnt damaged enough i will get it there it may take 10 or 20 years but it will get done.... beating Hep C i...	Josh Haynie	21	1932	Oct 13, 2014 by Huey
	Question on AbbVie trial M14-222 (Preview) Does anyone know the side effects of ABT-450/r/ABT-267 With ABT-333 AbbVie has a trial going on now and a good friend of mine has been asked to come in for screening visit. Please, any info on this woulk help. Thanks RC	robertsamx	1	1033	Oct 11, 2014 by LC
	DISCOUNT COUPON FROM GILEAD FOR HARVONI (Preview) I have no idea when my insurance company will have Harvoni available for me to take, but I have a discount coupon all printed out and sitting in front of me just ready for my Dr. to provide the prescription! I have CDPHP (NYS employees plan HMO)I imagine when they provide it, Harvoni's cost for me will be...	shadow10cats	3	2939	Oct 11, 2014 by LC
	SVR by genotype. (Preview) I think we can show an SVR in all the major genotypes now. lets see, Geno 1a's include Basse,D-Day's coming,Tig,Maddie,Kellie,Dee,Suzi, Pizza, Geno 1b's are Pi, both hubby and wife, Peter,Gater and Mallani, Geno 3a's myself and smccune, and I think Marktrux is a geno 2.	Huey	2	775	Oct 11, 2014 by maddie
	I hope this 8% Sovaldi Tx dropout rate is legit? (Preview) I got the link to THIS article from the Hepatitis Central news letter: Over 8 percent of hepatitis C patients taking Sovaldi (sofosbuvir; Gilead) are failing to complete their full, 12-week course of drug therapy, a dropout rate roughly four times that observed in clinical trials. They are wrong...	wmlj1960	9	1035	Oct 10, 2014 by mallani
	I find myself slipping into bad eating habits (Preview) Before I started therapy, if I ate a big meal of any type, 12 hours later it would still be sitting in my stomach or at least it felt like that, but now if I eat a large meal 4 or 5 hours later I'm hungry again. This is a major change for me. My ALT has dropped to 25 and my viral load is < 15. Consequently, I find m...	skewedButNotBroken	20	1843	Oct 9, 2014 by Huey
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