Hep C Discussion Forum

robertsamx · Guru

RE: For those of you who are cured..

Loopy Lisa · Guru

Pablito wrote:
I think it's good to retain a degree of healthy scepticism until the deed is done. There is a culture of positivity on this forum, which is very useful stance to adopt. However, studies show that 5% of people don't achieve SVR, as you know, and that figure is probably slightly larger in the real world outside of clinical trials.
So that's one in twenty of us. Should that scenario prevail it's far from the end of the story though. Longer treatments with different combos of DAAs seem to work for those who have failed prior DAA treatment with SVR rates of 80-90% in this sub-group so between round 1 and a potential round 2 you are looking at less than 1 in a hundred people not achieving SVR. And even then with so many new DAAs being developed and not to forget the option of adding in ribavirin I suspect that at the current rate of development medicine should be able to achieve SVR for all; notwithstanding cost of and access to treatment.

That is indeed true. After my last attempt my virus actually had a party and replicated to over 15 million, I was just on 1 million before. Although viral level is no indication of cure rates, nor makes much difference, with the new DDA's.

If I fail this attempt, I would just move onto the next set of DDA's, eventually there will be a cure that works. :)

I was actually thinking about people whom have achieved SVR 24 weeks, that suddenly have the virus again years later without possibility of re-infection. There is evidence that active viral particles have survived, but can remain undetected until the immune system fails to keep them in check. It is actually rare, but it has also been documented. I believe it has more to do with pockets the virus can hide in and usually associated with damaged livers apposed to non. There is a bit of disagreement between specialists on this topic, although there is evidence it has occurred. For that reason alone I will always be cautious just in case.

Tig · Admin

This is a question that is open for discussion just about everywhere you want to look. There are thousands of articles and responses to different medical blogs and forums that continue to contest the possibility of remaining infectious after durable SVR. Most information I have read is dated. I've got studies on file that are two or more years old and still refer to SVR as an undetected viral load 24 weeks after the end of treatment. We now know that SVR is based on a 12 week undetected RNA viral load. So the research is always fluid and changing.

The current thought of potential for infectivity following SVR is mired in a gray area. There are physicians, such as Dr. Lynn E. Taylor, a specialist and researcher at Brown University, that believes SVR absolutely removes the possibility of transmission following a durable SVR. There are others that feel that SVR, while almost certainly eliminates the possibility of relapse to a <1% rate and may drop further in the years following. I, like many, believe relapse following SVR is more likely to be from reexposure to the virus than a "reactivation/relapse" of your previous infection. It's so rare it's almost unheard of. With that said, there is a hesitation in many circles that say "cured" is confused with "durable remission". SVR reduces your viral load to a level undetectable by modern testing and allows your own immune system to keep the virus at bay. Research has shown that sporadically detected HCV viremia can represent infectious virus, but shouldn't be used to justify virologic testing beyond SVR.

Whether this represents a reason to be afraid of your blood, is a decision you have to make. Personally I would say it's not worth the fear due to the unlikeliness of it happening. What you should do is understand that even though the possibility exists in some minds, it doesn't in others. Certainly if you had a chronic infection and it was left untreated, the high viral load leaves absolutely no doubt that you should be very careful of your blood exposure to others. After SVR, your viremia is essentially non existent, with the possibility of a few stragglers floating around, below the level of quantification and easily kept that way by your own immune system. In today's world, anyone's blood is to be avoided, not because they had HCV at some point in their life, but because we don't know what anyone has been exposed to. Having worked in the medical field, it is stressed that you are cautious around anyone's blood or secretions. That's why you see everyone donning gloves when they may come in contact with bodily fluids. It doesn't matter who they are or what they may or may not have, it's simply protocol now. Blood to blood contact is the primary point of transmission of HCV. The risk of it after SVR should be considered too low to be concerned with, but in my own life, I will continue to be careful whenever I cut myself and I will continue to use my own grooming items, like nail clippers, razors, etc, because the simple fact remains, I used to be infected with HCV. A 1:10 solution of bleach and water is the absolutely best cleaning agent to be had. I continue to soak my metal grooming items in that solution when I feel it's warranted and it makes a great household disinfectant, for everything. Cheaper than buying all that fancy stuff in the stores. A reusable spray bottle and your household laundry bleach is all you need.

During treatment it is suggested that you change your toothbrush along the way and razors too. After the first undetected result, it becomes less necessary on a continued basis and more of a good idea. Once you achieve SVR, then you're back to your old routine. I found, when I was shaving, (I gave that up a couple of Christmases ago), the simple task of changing my razors more frequently, made me realize that I had been such a tightwad by trying to get every single shave and then some out of my blades. Once I started changing more frequently, I realized shaving with a newer blade more often gave me a better shave and less irritation. Unlike Pablo, I use the store bought disposables, so it wasn't so hard on the wallet!

Don't lay awake at night worrying about this stuff, it'll drive you nuts. Use common sense and just get in the habit of always being cautious around blood. Whether it's yours or someone else's. It's not just your blood, but everyone's blood that needs to be treated with caution.

Pablito · Senior Member

I think it's good to retain a degree of healthy scepticism until the deed is done. There is a culture of positivity on this forum, which is very useful stance to adopt. However, studies show that 5% of people don't achieve SVR, as you know, and that figure is probably slightly larger in the real world outside of clinical trials.

So that's one in twenty of us. Should that scenario prevail it's far from the end of the story though. Longer treatments with different combos of DAAs seem to work for those who have failed prior DAA treatment with SVR rates of 80-90% in this sub-group so between round 1 and a potential round 2 you are looking at less than 1 in a hundred people not achieving SVR. And even then with so many new DAAs being developed and not to forget the option of adding in ribavirin I suspect that at the current rate of development medicine should be able to achieve SVR for all; notwithstanding cost of and access to treatment.

Loopy Lisa · Guru

An interesting question. I went out and bought several toothbrushes today. disposable razors, and sensitive plasters just in case. I actually think I am aware of infecting someone, but also becoming infected with something else, but I am not cured yet.

I think because there is a VERY small sub group of people than have been proven to harbour stray cells, and for some reason their immune system suddenly doesn't keep them in check - re-infected and detectable, it is something that sticks in my mind too. I think because of that I will always be cautious and probably test every year to make sure.

I don't doubt the majority are cured, but who knows who are the unlucky ones? Better safe than sorry. x

-- Edited by Loopy Lisa on Monday 30th of May 2016 05:03:38 PM

Pablito · Senior Member

Hi Skimily

A good question and one that has been asked quite a few times on here, most recently by myself.

So I asked my doctor from the trial this very question at the 2nd visit. He said, in principle, one could reinfect oneself after SVR by using an old razor blade that contained HCV from before, but that the chances are very slim.

I've still got a week to go of the trial so as a precaution I've disposed of each razor blade after shaving, which is a bit expensive as I use the fancy Gillette one that are about 8 pounds for a pack of four in the UK. I'll probably do likewise for a couple of weeks after the trial. I've changed my toothbrush every week, and I floss after I've brushed my teeth, which feels odd but there's less risk of a speck of blood getting on the brush.

Re antibodies, they will never go away once your body has come in contact with HCV. But antibodies are not the same thing as the virus...they are just your body's response to it.

Bw

Pablo

Skimily · Member

Do you ever stop being afraid of your blood?

I have read that once an individual is cured, the antibodies still show, but there is no longer risk of transmission to another individual.

Since dx in December, I bought everyone in the house their own set of nail clippers n such. And I tell my son things like "we don't share that kind of thing." Granted, its not a bad practice at all to not share such personal items, but I never worried about it before dx.

Now, if I cut myself shaving or my cuticle bleeds while trimming - a little part of me panics.

I may be eventually cured from the trial I am on - And I wonder, will I ever stop being afraid every time I see a little bit of my blood?

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