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Avatar universal

Hope 20 weeks is enough

Went to re-order my meds today and found out that I have no refills after 20 weeks.   The descion was part made because of those studies being posted about EVR.   My doctor wants to stop me early at 20 weeks vs 24.   I am happy to get off... but also very nervous about relapsing for not going the rest of the 4 weeks.
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92903 tn?1309904711
We're going to regroup at 16 weeks.

Funny thing is, I think I feel better than most - or avg. at least.

Looks bad - feels good. <small>...nevermind</small>
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Avatar universal
I'll say it again. My biggest mistake was putting my trust in one DRs. opinion and not following my own God given gut feelings.If you have any reservations on this discion, do not stop and get another opinion. It sounds that you really do question this 4 weeks. I think I would have to do the full proven 24.All insurance pays for second opinions. Don't make YOUR discion until you feel comfortable, that you are doing what is best for you.
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Avatar universal
Given how fast all your bloodwork has dropped - and now you say platelets too,perhaps the 24 weeks is the kindest thing you can do for your body.  It sounds like you are in very good hands.
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92903 tn?1309904711
Keeping the options open. Definitely don't feel like I'm being used as a ginnea pig. Docs don't have all the answers I'd like - but they have me best interest at heart. They would let me do the 48 I'm sure.

New data combined with my 4 wk RVR causes them to re-evaluate their original 48 week recommendation. They question value to be gained from the extra 24 weeks. Doc tossed out 2% as possible enhanced chance of SVR for 6 mos add'tl tx. Hence Risk v. Reward discussion in other thread.

FWIW, this is an office widely known for their aggressive treatment stances.
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Avatar universal
How very true, NY girl.  As I have posted in the past, being a blood donor in the late 70's and early 80's (and most proabaly already hep C positive myself), I often wonder about the consequences of what I thought was a humanitarian jesture.   I have even thought of running an anonymous ad in the local paper -- something to the effect "if you had a blood transfusion in this town in the late 70's or early 80's you might have hepatitis C."  I think anyone who has ever had a blood transfusion should be tested
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Avatar universal
I have a feeling if they tested everyone in America...it would be MUCH higher a number than anyone ever suspected.  How many of us had no idea we even had this and found out by accident?

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Avatar universal
Mistybean
I am sorry they are pulling the plug, but you certainly have had some rough weeks and are ready to get on with your life.  What is the doc's plan for PCR's?  Soon I hope.  Here's a toast to your future and forever SVR.

Goof-
You are thinking 24?  I thought because of the liver damage you wanted to push for 48.  I do feel like they are using us as guinea pigs.

Miked
Good article, I hope it doesn't get pulled.  I am most grateful just to see more news on Hep C lately.  I do wonder where they draw those 11 million figures from.  In my opinion, unless they add Hep C detection to the normal blood testing, they will never know the exent of the infection.
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Avatar universal
very interesting article....

but isnt it funny how the chance to make some BIG money might save many of our lives....thank god for Capitalism right????
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80575 tn?1207132364
Oops...my bad.
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Avatar universal
Wow that would make me so angry - doesn't he know you are mistybean not guineapig?

It sounds like you have it under control right now anyway and we will ALL be sending you repeated good thoughts and prayers that it was!

Being a 2 you have a great advantage anyway so let's just believe that was enough anyhow!!!!!!!!!!!!   :)

PS Interesting article...I wish I had invested and I pray it comes through. 2009 well I will be SVR and cured by then but I will pray it works for the OTHER people who need it (not you guys on the board cause you'll all be cured with me) I mean those OTHER guys that we don't know.
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Avatar universal
12 was the Italiano study, 16 the Aleman(german) study.
I have read some articles from WHO that frequently comment of cost effectiveness during this epidemic, it makes me wonder if some of that is influencing the decissions of these countries to change their recommendations.
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99052 tn?1270983520
I thought I read where they were doing 12 weeks now for some of the 2a. over before you knew it cool.
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Avatar universal
Anyone in the Ideal study able to get off early for RVR/EVR?

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96938 tn?1189799858
That was my first thought too. The alarming number though is 4 mil infected now, 10 mil in ten years.  And that's just in the US. Dollars and people numbers are just boggling. The world needs more than just meds for HCV.
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Avatar universal
You're probably fine with 24 weeks but if it were me I'd push my doc for the full 24 because: (1) the short course studies were based on non-detectible at week 4 and you didn't test till week 5; and (2) it's not like the difference between 12 and 24 -- it's only 4 more weeks of meds. That said, if you're having a bad time with sides, then I'd lean more toward stopping at 20. But if your decision is to go on, I see no justification (insurance/medical) stopping treatment at week 20 based on a week FIVE PCR. So demand the extra four weeks if you want it, laugh them away if you don't. All the best luck. I have a feeling you'll be fine in any event.

-- Jim
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Avatar universal
hey misty, you definately don't "HAVE TO" be his guinie pig if you don't want to...you could always get a second opinion from a dr that is more cautious.

it should be "your" decision. it is your liver and your life...

there is certainly enough debate over this that you could ask your dr if you can go the whole 24 weeks...if he says no then get the second opinion...
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Avatar universal
I read the same article, I think the times are off. For example, with VX-950, they have a 2009 launch. That might be right, but it is confusing to most, because that would make the actual approval date before that. Approval is scheduled for late 2008 if all goes well. VRTX looks to want to hit the ground running, as they will be producing registration batches starting next year. They are not waiting around.

SGP looks off for this reason: They may be 3 months ahead of VRTX in starting phase II, but their trials need 24-48 weeks and they are doing 6 month followups. If you add 1.5 years for phase II, 1.5 years for phase III (assuming one started right after the other, which doesn't happen, and assuming the 48 week trial time + 6 month followup), NDA filing for 6 months. That would put approval at late 2009, with a launch after that. If they want SVR, in phase II, they should use a 3 month followup using TAM which carries the same chance of SVR as a 6 month less sensitive test, then do 6 month in P3.

Albuferon is in late Phase II, so 4 years to approval might be a bit too long.

I don't know exactly how they got their numbers, and no one knows if it will be right. On the surface, I could come to a different conclusion, but company guidance would be more important.
For arguement's sake, let's say VRTX and SGP are about equal in the clinic (SGP is ahead by 3 months right now). If VRTX's trials will take 3 months vs. 6 to 12, and they will save 3 months on P2 follow up, it wouldn't make sense to have the same launch date.
BIG ASSUMPTIONS above, as those are best case scenario timelines. More will be known after P2.

If Albuferon is in late P2, they only need P3, which would be 1 year +6 month follow. I am not sure how close they are to phase III. I don't know if they get priority review or not, so 5-11 months for approval. 2010 looks definitely doable, but maybe before.
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Avatar universal
Good advice.  But the way I look at it is .. if I failed after not completing the entire set of shots than what is  next?  Anyway..maybe 20 shots is enough for me.   thanks
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Avatar universal
I am a 2a and was non detect at around 5 weeks when I test.  ND again at week 16.  Most likely I am still non-detect.
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92903 tn?1309904711
There's a lot of that going around! My docs are also enthused by my 4 week RVR. It looks like I'll probably go 24 based on adv. fibrosis, but maybe not the 48 we were looking at. These Docs seem to like 16 weeks for some 3A's with RVR.
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Avatar universal
That is some interesting article!


(whispering) watch out, MH was deleting posts they deemed copywrighted, I have seen it happen more this latter part of the yr, don't know why. Please don't take it as criticism, ok?
keep up the good job!
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Avatar universal
It is scary, but hopefully it was enough, I guess you are one of his guinea pigs for the new protocol, but then, we all are to an extent. A month pcr will be a pretty good indicator of SVR, ask him for it.
good luck
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96938 tn?1189799858
Guess that's good news/bad news.  If you are done make sure the doc Rx's a sensitive PCR at treatment end a month after.  Good luck.  If I recall, your were non-detect at wk 4 and later? Geno 3A?
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