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Avatar universal

short course tx and riba question/ other posts too!

Hi All, any insight on this is greatly appreciated.  I am geno 2, and cleared by week 4.  I have been on 800 riba eventhough that is NOT weight based for me, i'd be up to 1000.  Anyway, prior to starting tx, I asked to do weight based riba especially if I was going to do short course of tx.  Doc said it wasn't necessary.  Now, I talked to my NP today and he said well, I have talked to the doctor, and if you are going to do short course tx, then I think you should up your riba until the end to decrease odds of relapse.  Does anyone know of any articles about short course of tx and riba dosing?  I am a little bit afraid since the riba has been wreaking havoc with me the past few weeks, but I can definitely handle it if it increases chances of SVR.  I don't know why this is throwing me for a loop. In a way, i'm kind of just mad because this is what I asked for from the beginning and NOW they are telling me it is a good idea.  ARGHH.  
As far as length of tx, here is my very unscientific decision.  I will get my 12 week pcr, which I will not get the results of until about 14 weeks.  At that point I figure I might as well finish out my current batch of meds, which would bring me to 16 weeks.  I feel more comfortable with 16 than I do with 12 and I am optimistic that in my case, 24 is not necessary. I realize this may seem like crazy logic to some of you, but ummm I blame brain fog!  
So, any ideas about whether upping the riba from now until the end makes sense?  
Thanks so much for all of your support and insight!
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Avatar universal
goof
it sounds like you were an underachiever or the teacher did not like your jokes!

I know it does not make a material difference, except to the lonely RVR who did not SVR, to him or her it matters. I promise I am not trying to nitpick to annoy you...this time.
I find it very encouraging that people can get back to their normal life faster than with the standard course, and free of HCV.
WHen is your due date? 3/11? I can't remember if you are getting a 4 wk PCR?
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Avatar universal
My understanding is there were more drop-outs in the longer course group which cancelled out the slightly higher relapse rate in the shorter course group, resulting in identical SVR rates.

To take it to the extreme to illustrate the point -- let's say each group ("A" -short course)  and ("B" - standard course) had 10 cohorts. You could have a 90 per cent relapse rate in group "A" and a 10% SVR rate. At the same time, you could have a 0% relapse rate in group "B", BUT if no one was able to finish treatment, then you would have a 0% SVR rate. In other words, it's the SVR rate that should be the focus, as the drop out rate can be misleading. Again, the conclusion of the study is that the SVR rates were identical in both the short and standard course groups when virus was non-detectible at week 4.

You may agree or not agree with the findings of the study, but to say that the shorter course had a higher drop out rate -- without explaining the context --  can lead those who have not read the complete study to a misleading conclusion.  

-- Jim
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92903 tn?1309904711
Oh Puhleeeeeze. We are *dealing* with statistics. That's why  more than one cohort is typically included in a study.....

It's rather normal to aggregate the experiences of hundreds and use that info to treat individuals, rather than taking the experience of an individual and using it to treat hundreds.  

Let's take your numbers and say 98/100 of short txers SVR'ed and 99/100 long txers SVR'ed. Now let's suppose 2 extra late-coming short txers reach SVR. Does that make a material difference? Of course not.

It's great to read real life experiences of successful short txers here on the board, but for my money I'll look to the hundreds of patients in controlled peer reviewed studies for benchmarks.

BTW, my last math course was 10th grade geometry, and I got a 'D'. So take this for what it's worth.  

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Avatar universal
"statistically' is the key word? 98% v 99% is statistically identical, but there is still one or two people behind that insignificant statistical percentage? Of course, I took my last math class a long time ago.

It definetely has been very encouraging to hear the most recent guinea pigs report positive results! American guinea pigs...
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Avatar universal
Bless for being such a good mommy.

I am 1b, started on 800 Riba.  Tried to talk Doc into upping it to 1000 but he was insistant that 800 was okay.  12 pcr was nondetectable.

Next visit he was still saying 800 until the last minute when he said 1000.  

Point is, I noticed a difference in the beginning but acclimated quickly.  I did end up on Procrit and Neup tho.

I would think if you are this far and clear, why not go the distance with a bit more Riba to really serve the eviction notice?  A few more weeks now or possibly the whole thing later.  Children will always take a lot of your time.  My youngest is 22 and no where near maintenance free!  Just my thoughts.

missmiss
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Avatar universal
I'm on Paxill and it was one of the best things the doctor has done for me. Glad I started BEFORE treatment it's been a life saver literally for me.
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92903 tn?1309904711
As I recall (going from memory here) relapse rate was higher but SVR rate was statistically identical.
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116701 tn?1210259164
I'm at work so I don't have my Pegasus / Copegus package here but I think (key term) the instructional information warned against taking the Copegas (riba) without the Pegasus. I believe the chief side affect in doing so was risk to a particular portion of the heart / muscle. Again remember I am dilutional and can't spell. I know that this post is not about taking the riba solo but varying it should be the doctors call with the listed possible side affects. A good liver and a bad ticker ain't no deal. Now if someone can clear my brain fog on this issue have at it. This in no way reflects the opinion of the station or its management but is the sole opinion of the broadcaster. Dale the Dud. If you have an answer and it lengthy or the tread fills up you can send the answer to ***@**** . The riba has been the scary stuff for me since starting the treatment. Dale
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Avatar universal
a mommy; the relapse rate was not identical in the short tx group v the full course group, it was very close, though. There still were some RVR that relapsed, even if it was a very small group. You have a lot of other positive factors on your side. Being a mommy is definetely one big plus.
good luck
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116701 tn?1210259164
Lexapro Susan. My doctor finally made me start taking it at 12 weeks and man it cut the edge right off of me most of the time. It was so bad I couldn't stand the sound of a tv set on or my dog starring at me licking his chops. Now is a much better place. Glad my doctor saw something and reacted to it. I hope you can get ride of the thing because I know how uncomfortable it can make you in your own skin. I hope this stuff holds up for me. Best wishes, Dale
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Avatar universal
I got brainwashed early (before tx) and I like our dear friend JIM take extra right now - I would be at only 800 weight based but ASKED to do the manufacturer recommended 1000 to get the extra bit of everything I can

I only want to do this once you know? On tx night I have to admit I even pop and extra one. Sick yeah...that's me but since I am trying to cut down on the ice cream a bit now...I think I'll substitute the Riba ;-)

It's a pain having the sx but...I would do anything to help my chances of SVR since I am a 1A and 1B.

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Avatar universal
Hi tx buddy,

Here's my thoughts, as we both started together on tx and are the same geno type.  First, how are you feeling?
I know you have small children and it must be hard to take care of them and your self when your not feeling good.
If I was in your place and doing ok, I would do the 24 weeks because I fear relapse more then any thing else. Many drs. have different opinions and the way I see it, who's right?  I don't know the answer to this and I don't think anyone can be certain they have the right answer.
This is just my thoughts on this matter my friend.

  Beagle
Helpful - 0
Avatar universal
Sorry it has taken me so long to respond back from the other day.  I posted before I left work that day and when I picked up oldest son from school he was not walking too well.  Strained his groin and pinched legimate that goes down his leg, in basketball and then when my youngest gets home he is sick with sinus, headache etc.  Needless to say I have been busy in and out of doctors office.

Strator:
I do get alot more tired these days with the drops.  I do go this Tuesday, to see Hemotologist.  I have noticed that before my counts drop I get really blurred vision, so bad that I get dizzy (like vertigo), then from what I have noticed the counts drop next and on that day I go home and straight to bed for about a 15 hour snooze and only get up to take meds; I am just too tired to get up.  After, about the second day my body seems to re-adapt itself and I can function again but, not at top speed. I get so frustrated when I cannot read things and have to back off; but, part of sx on tx.

Beamish:
Yes, we do need assistance sometimes with the rescue drugs.  I am very hard headed and thick skin; sometimes not a good trait.  The Ativan (Lorazepam) work wonderfully.  The hubby and kids are soooooooooooo Thankful for these little pills.LOL  The hubby has also warned the kids that it takes 2 hours before it really sets into my system; so stay clear for a while until it does its thing. LOL LOL

Nygirl:
Yes, the (lorazepam) is in the Valium/Xanax family and when it gets into my system I tend to get a little more relaxed and sometimes want to go to bed.  On the Paxil, I cannot take that particular brand of AD.  I get every side effect it has and to the point that I have no function ie motor skills.  Back then they took me off and put me on Prozac and that one I could take.  Do not know if I will give myself the shot for blood counts or if I will go into primary doctors office to get it.  I will find out on this Tuesday. On my eyes I have been told by three doctors so far that it is not permanent and not to go through too much expense on this until after tx.
You know, I would like to put your boss in a crate and address it to many, many destinations before he gets to that final destination (where ever that might be) and put No return address. Can you imagine (picture this) all the tumbling around and security checks and somemore flipping around in and out of air craft, more inspections and no return address. LOL That jerk would deserve every inspection point.
Well I do shot #10 tomorrow night.
OH! By the way did you watch LOST last night.  Oh my, it was so good.

cajun
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116701 tn?1210259164
10 blocks!that would be a dream come true to walk. Walking was my mental check out and recover plan for a lot of years and you take that away and its like a screen door on a submarine............dive , dive, dive. Everyone on here picking at me and being playful is a God send. They have so many hidden meanings to most comments it makes me think and rethink which is like exercise. You sound great though and please keep telling us how you are doing post TX. That is the biggest concern I have. I hope you paint a masterpiece tomorrow and if its got a monkey in it I'll figure it was me. Ha! Have a great evening and thanks for all your support through these days. Dale
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Avatar universal
im sure your going my some Italian study. I bet your eyes lit up just reading "free riba" you'll say and try anything to con someone out of their riba.

BTW you can keep your durn moths, i don't need them, im married. but wait a minute maybe we would make a trade there?
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Avatar universal
you know what i would do is up the riba  for the short amount of time you have left just to give it a good ole kick  because you are wanting more babies and the least amount of tx  you have put in your system is going to be better for your unborn baby ...so  what im saying is  push real good towards the end so you dont have to go back ...let this be the only round of  cell changing med you will ever have to take... how long will you wait after your off meds before trying for another one.... im so glad you have a short tx..i know what its like to want more babies i have 5 myself.



           God Bless
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Avatar universal
That's right, studies suggest a positive correlation between serum ribavirin levels and baby production :) Meet me under the bridge at midnight and you can exchange all your riba for some moth balls.

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Avatar universal
I'm having a bad case of the grouchy-grumps and major irritability lately.  My ability to tolerate minor annoyances is just not there.  Which in turn, makes me want to hide from everyone.  I don't see how anybody can stand me at the moment!

Susan400
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Avatar universal
I know what you mean, we all have days like that.  Maybe there is something the Dr. can give you if it's that bad. I think someone posted they were given something to help but don't remember what or who it was.

  beagle
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Avatar universal
Thanks for your input and support!  Yes, goldyn, the clock is ticking and i'm itching for more to love!  I have to wait 6 months after tx to start trying for more kiddos.  It is definitely doable.  :)  They are truly a blessing for sure!  Exhausting as anything, and sometimes frustrating (my daughter is 2) but completely magical and amazing!  

Beagle- Thank you for your input!  The relapse rate is identical  (according to some studies) independent of tx length if clear at 4 weeks. It's hard to poison myself any longer than necessary!  I guess we will see what time brings.  
In fact, I just did jab 10 tonight.  Tx is kicking my butt this week, so the thought of only 6 more seems quite right at this point!  I am going to up the riba starting in a couple of days and see how that goes.  

Hoping to kick it in to the end.  I do realize how extremely fortunate I am to be responding well and have these options.  Somtimes I feel bad posting here because I know I have it so good.  Please know that I keep each and every one of you in my thoughts and prayers and will always continue to pray for your SVR!
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Avatar universal
Sorry tx is kicking your but this week, if having a hard week too.
Don't feel bad about posting how well your doing, it's what we all need to hear and it gives hope to all.
How much riba will you be taking?  I do #10 Sunday, I'm right with ya.

   Beagle
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Avatar universal
ha!  thanks for the laugh.  I think most people on here would be throwing that stuff into the ocean :)
Thanks for your support.  That article that jim posted made me feel better about the whole thing actually.  Going to keep looking for more info!
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Avatar universal
you said... because I am antsy to have more babies! :)
_______________________________________________________________

Not sure what ants have to do with it, but if riba makes a person want to have more babies. "YIKES" Im tossing all mine out NOW. Jim free riba here.

Good luck to you, your chances for SVR our great, whatever you decide to do.
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116701 tn?1210259164
You're right I remember he couldn't determine my treatment until he geno typed me. I am 1a. I was down on VL from 1.5m to 827 at 12 weeks and he said to just continue with Peg, riba and nupogen as is until I see him in May. Lot of blood work in between but he was pretty confident about it. Thanks for the feedback or at least the brain fog clearing. Best to ya! Dale
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