Hep C Discussion Forum

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.

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

 , um, no thanks anyway

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

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.  

Hey Woody,

There has been disagreements in usung the word cured. The proper term is ”sustained viral response” 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 haven’t 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 it’s extremely rare. The chance of someone reinfecting themselves is far more likely than relapsing. Once a person achieves SVR, they stay thay way. I don’t 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 shouldn’t present any problems. That’s 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!

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

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?

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

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. It’s a patient right. 

My opinion is firmly in favor of you accepting treatment with one of these new DAA’s if offered. I’m from the old school drug treatment class, twice on the Interferon protocols which were far harsher than any of these all oral treatments. I’m in my 60’s, too, and realized we don’t 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 didn’t 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. It’s far easier now and I recommend you going in with an open mind. Good luck on your appointment. 

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!

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.