A Little Encouragement

[kconn14]

Just thougt I'd post that after 18 weeks of Tx I am SVR! I'm 65 with geno type 1b and started with a vl of over 10,000,000. Stage 3 bridging cirrhosis.
I think it's important that those of us who are successful share so everyone doesn't get totally overwhelmed with all the bad things that can happen, like I was when I first started looking. Yes, bad things can happen, but so can good things and being a glass 1/2 full kinda gal I wanted to add this post for some balance.
I hope you can find this helpful on your journey.

Karen

[kconn14]

Thank all of you for your helpful information - I never take offense to knowledge. I have tried to show some of the study info to my doc but he's a resident and wants to stay with what he knows. He has extended treatment to 72 weeks - that is total isn't it? Not an additional 72?
UND at 18 weeks - I'm still jazzed!
Even tho I'm tired all the time, I'm very fortunate in that I'm still working full time and I also prepare income taxes so I'm really busy right now. It's taking a lot to stay on top of it this year but I'm almost to the 15th.
Life is good and it's good to know there are others out there with valuable information to share.

Karen

[Marcia2202]

Hi,

Again, I would like to congratulate you on still being clear after 18 weeks of tx.

I have been reading through this thread and can see that there is quite a lot of confusion. I would like to help clear it up, so please do not take any offense. I know that all the terminology and milestones of treatment can be confusing in the beginning, but we are all here to help.

I will take a quote of what you posted and explain it.

'I also read that there have been studies that show people who have cleared the virus by the 24th week have about a 99% chance of being SVR the rest of their lives.'

I believe that you have misunderstood this concept. The 24 weeks is meant for AFTER treatment. If you are still UND (undetected) 24 weeks post treatment (also called SVR) You are cured, meaning that you probably have even a bit more that 99% guarantee to be SVR for the rest of your life = cured It is very rare that people relapse after achieving SVR 24... Thats what they call it in studies


If you clear by 4 weeks of treatment (this is while one is on treatment), you have a 90% chance to achieve SVR once you finish treating. The later you clear, the more the % goes down.

Now I would like to ask you when did you become undetected the first time during treatment? It is very important for you to know this, as it determines how long you should treat.

Could you let us know when the doctor had you tested and what the results were?

Rooting for you,

Marcia

[mj6000]

Many people have to extend their treatment and since you went UND later than some it is something to consider and ask questions about.This forum is a wealth of knowledge and you are lucky to have found it. You will be pleasantly surprised that some people in here know more than many Doctors.So post questions and you'll see.

[nygirl7]

Whatever they called it, perhaps UND, there is no evidence of the virus at 18 weeks of Tx. I will continue the Tx for the prescribed amount of time just to be sure.

Oh no KConn Trinity is right.  I did not get to UND until about the same point of time as you and I had to do 72 weeks of treatment.  You see it's not just that we get to undetectible but that we train our immune system to kill any of the virus that just might not be showing up as "detectible".  This is why the rates for a geno1 are about 50%.  the other 50% doesn't truly get to UND but believe that they are and then when they do off the meds - BAM relapse.

The encouragement here is that you DID get to UND albeit a bit late to the party (like me so I understand too).  But now you seriously have to consider extension.  There are major major studies out there that show the closer you get to UND at week 4 the better your chances are. Then another says if you are not UND by 12 but before 24 extending is the best thing you can do to bring back up your chances.

I know that this sounds totally bummer but it's the truth.  Nothing matters more than knowing these things when you are on treatment so you can REALLLY get to SVR which means cured for good :)  Does it totally suck to have to extend?  Yup. Is it worth it? Yes I've been cured now for over three years and thank God for that every day.

Please see if you can google up the Berg Study and the Sanchez Tapias study excepts.  You can print them out (they are pretty easy to understand) and bring them to your doctor. Believe it or not some doctors know LESS about the new studies than the folks in here (but the folks in here care more because they've been in the same shoes that you are and know how it feels!)

Please.

Debby

[Trinity4]

Don't mean to be a buzz kill here but the sooner you clear the virus as in before or at 12 wks, the higher the odds of attaining SVR.  If you clear between 12 - 24 wks you are considered a slow responder (that would be me) and extending treatment to 72 wks is usually recommended.  A rapid virological responder (RVR) which is UND by 4 wks has the best chance of SVR.  Those who clear by 12 wks have around a 45% chance of SVR and those who clear by 24 wks and continue with treatment to 48 wks have around a 15% or less chance of SVR.  (not sure about that percentage, may be a little higher but I don't think so)

The earlier you become UND, the better the chance of achieving SVR.

I am keeping my fingers crossed for you.

Trinity

[Bill1954]

Wow, I only just now saw the good news; thanks for posting this, and good luck as you go along. This is good news for others considering treatment; these meds are more than smoke and mirrors, they really are effective :o)! My biggest complaint was fatigue as well; I never really became ill per se… could have slept for several years, though, had I let myself!

Good luck, and keep in touch—

Bill