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Post Info TOPIC: epclusa


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RE: epclusa
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mmmm, wait a minute Tig, hold that thought - I may be interested yet, since I've taken up trying not to smoke lately, liqour somehow is starting to look pretty good to me for some reason. Save me a seat anyway, I'll let ya know. hehe

Poor Woody!, I'm tromping all over your good thread with my stupid jokes, sorry - back to you now.

So, your friend, the one who took the harvoni cure, what was his experience like, what does he think about you getting treated, do you two guys discuss these things?

I am glad it sounds like you are in pretty good shape (we think, and hope and trust you are) and if you are feeling good this may be quite so if all your labs are showing things are not looking too radicial. But this does not detract from the hard truth facing you, that you have an infection which needs to be treated and will have to be treated. What is good (as Tig mentions) and as you convey - is that right now perhaps with odds working against you, you are in a fairly good stable health state right now - lucky, and therefore an IDEAL time to get rid of this long-standing infection that your body has been subjected to - while you are feeling good, and are not getting any worse. Do not wait until labs/imagings/tests look less good, until you are not feeling as good, or are just getting plain older and tired-er! No time like the present to get treated!, best ever really, with these new super drugs. You should not be afraid of them, you should be afraid of liver failure or HCC in the future if you do not get treated. Take advantage of these good times, and good timing.†

In retrospect (man, did I EVER feel lucky that my HCV was not discovered until 2015 - even though I am sure I had it since I was about 17!) Had it been discovered earlier, very likely I would have been subject to doing some of the older drug treatments, the hard and harder ones - I certainly lucked out with getting in my drug trial, and I got the some of the best, newest drugs Gilead has ever created! Things have changed in the DAA world these last few years, and you lucked into it too. I think you will be FAR better off without being a GT3 any longer than you have too, things can change funnier and faster and sometimes all of a sudden for us GT3's (sometimes) sometimes moreso than other GT's - keep that in mind too, in your timing/planning. Its good you are muling your decision over and still considering a possible start date, hopefully pretty soon. My fingers will be crossed for you that this decision starts to become easier for you.

You could wait many decades, only to keep reading nothing but reports on how the current DAA's are helpful and not harmful. A longstanding GT3 does not have the luxury of choosing to wait too long for tretament, you are potentially gambling/dodging a bullet while waiting, those tactics will not work forever.

There are many GT3's out there who would lunge at a chance to get the epclusa you were offered. 12 weeks of treatment is an investment and insurance in your health future.

Proactive is a better tac, but I do understand your fear of the unknown - I think that is sometimes the largest enemy (fear and fear of the unknown), standing at the edge of pool about to make your first dive-in feeling, but as far as enemies go HCV is the greatest one to beat. I think you will end up finding you will enjoy life better, longer, healthier, and more, with less stress and worry by getting cured sooner.††biggrin



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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no booze cruise biggrin



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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Ya Woody, me too with not drinking or taking stuff that is or may not be liver friendly...

I wouldnt even let them inject me with a pain med for an xray, when I fractured my elbow...(vacuming †the ceiling of all silly things) because I was so paranoid about my body being able to process whatever it was.

I had one dram of scotch when my brother died and a wee mouthful of something when my mother died. Other than those two instances, I havent had any booze in 34years.



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer†

Tig


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Darn, I guess this rules out the Booze Cruise I was planning for all of us this Summer!†wink



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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oh yea, i had one doctor who said i could have an occassional drink even with hcv at 25+ years

blankstareconfuse†, um, no thanks anyway



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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Good Tig brings up the point about individual conditions, degrees of liver damage sustained, recovery of functions, etc. post-cure, and about how it is always best to have these discussions with your doc about drinking (like in your friends case).

I was flabbergasted when my doc (we, both celebrating my cure) said to me I could have an occasional drink if i wanted - (I bet he gets MANY poeple who WOULD wish to be able to drink again!). What really shocked me was that I had already told them (repeatedly) pre-treatment that I was a complete (almost forever non-drinker) - hm, I†thought I†had made that very clear to them, numerous times, as they grilled me so thoroughly pre-trial on my conditions and habits, diet and meds!!!!! ( hm, maybe he gets MANY people who fib or underestimate their drinking history, and he knows they underestimate their alcohol intake, I sit shoulder to shoulder with many folk there in that clinic who need methadone and such for other habits that are pervasive!) Alcohol use is SO pervasive in many societies, so, maybe my doc may have adopted a† safe generalized "assume" some possible use, or hx of?

Anyway, during one of our happily-cured doc appointments, he says ... "I could have an occasional drink"! Um ... what for? um .... I don't drink, um ... I don't want a drink?† heehee. I just betcha he has an occasional drink himself and understands the possibly misplaced importance people place on drinking, or the pleasure or addiction people derive from it. A very understanding hep doc i would say, mine! I am sure you will find some docs who will allow an occasional drink and other docs who will go by "dump it, don't you EVER bother to drink again". You may get many variables from docs, and, everybody IS different as far as what and how well their liver "dysfunctions" improve after SVR. C.



-- Edited by Canuck on Tuesday 19th of June 2018 03:20:58 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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same here woody, glad you are taking care of your liver



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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ya i also think that drinking a lot of alcohol with or without hep c is not good. i haven't had any for almost 20 years and i don't take anything that i know will be hard on my liver. tylenol,etc.



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Welcome Woody,

Treatment is a breeze compared to the old regimes. As Tig said, relapse after SVR is pretty unlikely.

Saying its safe to start drinking again after harbouring the silent, damaging HCV virus for umpteen years and then being privileged enough to be cured by the amazing,( and expensive) new treatment, is downright delusional in my opinion.

I hope you decide to do the treatment, as long as you drink water during it, the side effects are quite minimal and endurable.†

a.



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer†



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Hi Woody,

IMO and that of my hepatologist if you have Hep C you should not drink alcohol period. Alcohol accelerates the damage the virus does to your liver. It is like pouring gasoline on a fire. Even after taking Epclusa and achieving SVR you should avoid alcohol period. If you have the opportunity to take Epclusa and it is affordable please do so. Best wishes!



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Male, 65, Dx 1990, GT 2a/2c. Pre-treatment VL 11,500,000, ALT 10, AST 18, Fibroscan F3, 12.4 kPa. Rx 12 weeks Epclusa, SOT Mar 8, 2018, EOT May 30, 2018. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18.

Tig


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Hey Woody,

There has been disagreements in usung the word cured. The proper term is Ēsustained viral responseĒ or SVR. The end point of treatment is to achieve SVR12, which is a sustained viral load <15 IU/ml, and considered undetectable after the 12th week following the end of treatment. Once achieved, the immune system is able to keep it undetected, which for all intensive purposes is considered cured. I know how peculiar it sounds, but that has been the rule for years and years. Actually, the professionals consider the chance of relapse following SVR12 to be .5% and likely drops further in the following years. In the many years I have been following the statistics and here, I havenít spoken with one person that has relapsed. There are exceptions and there are reports where someone has had an Immune system failure and relapsed, but itís extremely rare. The chance of someone reinfecting themselves is far more likely than relapsing. Once a person achieves SVR, they stay thay way. I donít worry about getting hit by lightning and relapsing falls below that, IMO!

The school of thought on alcohol use after SVR has been to avoid it. That train of thought has softened in recent years. However, anyone with higher stages of fibrosis and certainly those with cirrhosis should avoid it forever. Some Doctors have decided that the occasional drink after SVR shouldnít present any problems. Thatís a discussion to have with your doctor. It depends on your overall health and that of your liver. Excess use is going to slow down or stall that desired healing!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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woodytwoshoes wrote:

hi, ya i had both fibro scan and ultrasound. said both tests looked good.


†wow, sounds like it is buying you some time to think it thru anyway.. i look forward to seeing your #'s when you get them.

so, now just relax into your life and see how you feel when the time is right.



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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hi, ya i had both fibro scan and ultrasound. said both tests looked good.



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well, some tests can appear normal. it's tests like the fibroscan, and fibrotest [blood test for fibrosis] that paint a clearer picture.

in my opinion, the use of alcohol or certain drugs on a liver that has suffered for 25+ years is just not wise. the liver is trying to repair itself from damage of the virus even if the virus is gone.

my doc wants us every 6 monts on labs and ultrasounds.

i hope they did a tumor marker plus a fibrotest on you [both blood tests].

did you have an ultrasound or mri on your liver?



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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thanks for the quick reply, im gene 3, no idea when i got infected, prob 30-40 yrs ago. i don't have my medical info. but i will get a copy as im seeing the internist at the end of june. they say im healthy, whatever that means, when i opted out of the epclusa program the nurse was not concerned, she said i appear quite healthy from my stats. I have a buddy who did Harvoni and he says he's cured and i asked him if they were going to keep testing him every 6 months or once a yr. He said no he's cured and he can use alcohol again if he wants. this somehow doesn't seem right?



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woody, if you read signatures on posts you will see lots of long time cures.

would you mind adding your signature with things like genotype, year contracted, what stage if any of fibrosis........this also helps ppl answering your question.

but i waited till the right time at work to take my harvoni and i've worked most of† time, going home early, calling in once and going home sick twice........my job isn't very physical tho; still if you could get the winter lay off that would be a perfect time



-- Edited by 5-1-18 on Sunday 17th of June 2018 07:25:38 PM

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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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Hello again Tig, i am a little concerned with the use of the term cured with regards to these drugs. they say virus free after 24 weeks is a cure? I have heard of it coming back after a year, that it can hide in the lymph nodes and come back in the future. I guess i would like to hear from some long term cures from hep c. How long have folks been on these new drugs?

Thanks



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well thanks for the info, i will reassess my situation after my next dr. visit. I am 67 and still working in construction so i need all my energy and i hear the epclusa does make you lethargic, i can't have that happening until late Sept. when work slows down. i may do the treatment then.

thanks again



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Tig


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Thalidomide was and still is a potent drug. It's still prescribed, too. Certainly not for anything HCV related though. There are articles that show it can actually exacerbate Hep C. It's use in the early days lead to a lot of birth defects and is now considered an X class of drugs during pregnancy, similar to Ribavirin in teratogenic activity.

I recommend asking for copies of your lab reports and keep them. They can prove valuable in the future. Here in the US, they have to provide copies upon request. Itís a patient right.†

My opinion is firmly in favor of you accepting treatment with one of these new DAAís if offered. Iím from the old school drug treatment class, twice on the Interferon protocols which were far harsher than any of these all oral treatments. Iím in my 60ís, too, and realized we donít have too many decades left in this ol world. I have lost too many friends that felt great one day and were either contemplating a transplant or were diagnosed with cancer a year later. I didnít want a future laden with that possibility, so I took the opportunity to try treatment and it worked. I feel better for it and am glad I did. Itís far easier now and I recommend you going in with an open mind. Good luck on your appointment.†



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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smileHello again, ya I've had hep c for years, first diagnosed when i was around 30. i have seen specialists (internal med guys) over the years and they have all told me that i would die from something other than hep c related illnesses. I have another appoointment with my internist June 30. so will see what he recommends. I know all the doctors are dancing on the tables over these new drugs but im old enough to remember Thalydimyde and the results from that approved drug. I have type 3 and my fibro scan was ok. I don't have the test results from my blood work and i will get a copy from my Dr. next visit. They only orally share this stuff with me. I see most of you on here have all that info.

I guess im just a bit leery of big pharma and Drs in general as they get to bury their mistakes and i have had some experience with mis diagnosis in the past not related to hep c

Thank you for replying its good to know we are not alone with this and its great to talk with folks who have the same concerns as i do.



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Hi Woody,

Pleased to meet you. I am also around your age. (seems a lot of us here are of the same generation) Since these DAA's have only been around a few years, I am afraid you will not find any long term studies. I am in Australia and our government would like to wipe out this virus entirely and will treat all sufferers. They believe that it is far better to treat all of us baby boomers now rather than having to cover the cost that cirrhosis and liver cancer later. People like you are I who were fairly non symptomatic are far better off to be treated now before our livers deteriorate further. This deterioration can happen rapidly they now know, so best to treat it now.

I personally am half way through my 12 week Epclusa program and doing very well. Hope you do whats right for you. All the best!



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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yea,i made the decision to treat due to my liver needing to be cured from the disease cos it was not gonna make it if i didn't go for it.

i know a lot of ppl that treated [harvoni, but basically the same kind of medication with the same warning] and got cured, giving the liver a chance at a healthy outcome

and it's hard to blame the drugs when the liver is already in such bad shape. plus they predict that even without treatment we could go on to getting cancer.

if your liver is in good shape you might be able to put it off awhile, but it won't repair itself.

how long have you had hepC? what condition is your liver in?

good luck with your decision, i know it's a hard one to make.



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



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Tig has made many good points here - you should give his words and the concept of treatment more thought, and, do some more reading. He is right, there is a lot of info on the site about epclusa and all the other new DAA's.

Perhaps you have not found much to read on the angle you wish to explore (about treatment itself causing you harm?), maybe because there is a lack of evidence to support that theory. Perhaps, on the contrary, this is why we see the abundance of studies that ARE available, that DO attest to the lessening of risks, and health improvements seen after HCV has been treated. I have read MANY studies which actually show that it is having/harbouring HCV that ends up causing liver failure and liver cancer! Perhaps you are looking at HCV the wrong way. HCV is the enemy here, not the treatment for it. (my opinion). Perhaps you are looking for answers to the wrong questions? Keep reading, keep an open mind, and I think you might change your mind - maybe you should chat this over with your doc again?†

You and I are not that far apart in age, I wonder how long you might have had hep c, or when you got diagnosed - you say you have been going for 'bloodwork" - that's good, whatever happens, do keep doing that! What GT are you? I suddenly found out I had it in 2015, only realizing then that I had had it since about age 17! A GT3a, I was very well-cured in 2016 (in a trial) of Vosevi (which is epclusa +VOX). If you have questions, want to share, or just hash out (out loud) what is perplexing you - fire away. We would be all ears and we will try to help if we can.† : )† C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)

Tig


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Weíve got a lot of information here on the forum related to Epclusa. Use our search function at the top and youíll find it. If you have specific questions, weíll do our best to answer them.

There has never been an easier time to treat and cure Hep C than right now. The treatments stalled for decades before these new DAAís and many of us thought like you are now. We hoped for something better to come along. I did two rounds of the old Interferon protocols and got lucky the second time. Iíve got friends that tried and tried to get treatment and were denied. Some of them are dead, some have had transplants and some are hoping they get lucky and are approved for care. Donít wait too long, Hep C can cause cancer and will damage a number of systems the longer you wait. Your viral load means very little because it rises and falls like the tide. Many people feel fine and have perfectly normal blood tests, until the one day they donít. This is a slow and progressive disease that destroys more than your liver. I see it happen all the time...

Better to treat it while youíre still feeling good. By the time you arenít, who knows how much additional damage couldíve been avoided. Think about it, very seriously before putting it off. Thatís just an opinion from someone that has seen all sides of this issue. Good luck!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ† †Lab Ref. Ranges

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HI, new here, was going to start Epclusa tomorrow but have decided against it. I can't find any long term studies that show it won't cause cancer, liver failure etc. I am pretty healthy and have a low viral count. I think i will keep getting blood work done and keep an eye out for any changes for the worse. I would appreciate any info on Epclusa users.

Thanks



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