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Avatar universal

undetected VL week 4

Very happy, this will help me get through the misery they call treatment.  Started neupogin tomorrow and procrit shortly thereafter.  They halved my peg this past friday to 90.  Hope to increase it this coming friday.  My riba is still reduced from 1000 to 800. Mayo doc says if you do 80% of dosing you have same chance of SVR at 100%.  

I had a really tough week end.  Thought I couldn't go on.  But like my buddy Spectra says, don't get caught up in the moment, because it will change.  He was right.  Today I went to work, it was better and then this news.  Sure helps.
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Avatar universal
Congratulations!!! I am so happy for you. I too just got good news today.  :)
Helpful - 0
1654058 tn?1407159066
I jus love rereading ur post and the comments.  The thot of dropping dosage petrified me. I totally admire your courage. 2 things - first I was told 48 was a minimum for prior tx and/or tx naive w ESLD. Second Im still not getting this ANC thing. If it's absolute differential, I'm at 1.3 on gran#, down from 2.5. Is that it?
I'm jus so pleased w ur UND. That's where we gotta focus, right? Good going. :) karen
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Avatar universal
Thanks spectdad
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1735424 tn?1357433558
Keep holding on and happy thoughts!!!!!
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Avatar universal
Judy..Others have chimed in on the dose reduction...so I have nothing to add there. ..however I see you say you are doing only 24 weeks.

I am not sure about your prior treatment status..however I believe I remember that you were a partial responder that stopped treatment at week 12 with still having viral load(like myself on first treatment).. The Incivek labeling says that all partial responders should do a full 48 weeks  regardless of viral load this time at week 4 and week 12.

Did your doctor say because you were UND. at week 4 you should do only 24??

It seems like other doctors are also saying this in contrevention to the recommended dosing by Vertex.

Just wondered if this is the new dosing regime?

Best to you..
Will
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Avatar universal
If the procrit makes your hgb increase you will feel better. it takes 2-4 weeks for the procrit to work unlike like the neupogen which increases your WBCs and ANC immediately.
-Dave
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Avatar universal
That is definitely awesome news, congratulations.
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Avatar universal
Today is week 9 on Incevik and I am feeling awful. But -- undetected so worth it. Just started procrit yesterday at 9.1. Every bone in my body hurts. Last time I treated I was on neopogen and I assumed that was what was causing the bone pain. My doc did not lower peg, but has cut the ribo from 800 to 400 for the first week of procrit.

Does any one know if the procrit makes you feel better, or does it just stop the hemoglobin from dropping further?
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Avatar universal
It's all about timing. Reducing anything before und is not a good idea and personally and in my opinion should be an absolute last resort.

Judy you know my take on it, Since you don't have critical HGB (10.1) and your ANC is .81 and your getting neup and procrit this week I really don't understand why they are reducing you, Maybe the Riba while you get the procrit, but the interferon in half before they even had your pcr result, WTF?

Even if it's mayo clinic some other respected hepatologists are much more aggressive then them and I believe (not positive) that the in the telaprevir studies does reduction for ANC was .5.  You want to make the very likely 24 weeks count. Not getting enough riba could very well effect getting to und or the chance of relapse. They don't have 100% SVR, so I would do all I could to take the full dose personally.
-Dave
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1717054 tn?1316712653
"The riba and peg can be reduced.......... Not the same for the PI though"

Thanks, Can-do, I am well aware of this fact.  Pcds said in her post that the drugs being reduced were only the INF and RIBA, not the PI.  That news can be encouraging for those that are getting the SOC drugs reduced.
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190885 tn?1333025891
good news.....my third through 5 week were so tough...now in week 8 i'm fine....i have sx but nothing i can't deal with.....billy
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1768199 tn?1323617936
Wonderful, wonderful news.

Sherry
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Avatar universal
12 VL is the one that tells if I can do 24 weeks.  This 4 wk test is my first hurdle.  I now face rash phase as I am in week 5 and it's week 6 that the rash starts to show its self.  Regarding the 80% rule.  My doc says they have done studies at mayo that show 80% of meds is as good an outcome as 100%.  Meanwhile I stressed I HATE DOSE REDUCTION.  I took an extra riba this morning since I'm getting my neupogin today an might as well knock .2 off my HGB so my insurance will pay for the procrit.  I plan to do a full dose of peg this friday even though I know the doc is going to suggest 135 of peg.  What do you all think?  Sort of scared not to do what doc says, but I rather save my dose reduction for a more critical time, like if the procrit doesn't hold my HGB up.
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1654058 tn?1407159066
Just have to add.. With all the dose reductions n SE talk tonight. He also said "Sometimes we chicken one day. Feathers the next."
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1654058 tn?1407159066
Bravo for you! What a hope filled day!! I'm jus hitting the reduction part. Wow! You've inspired me! "Keep the faith baby n we're all gonna share in the gravy." a random quote my dad used to say. Congratulations!!!! Woohoo! Karen :)
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789911 tn?1368636783
big hugs and congrats to you!!!  
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223152 tn?1346978371
great news pcds.  This means short treatment as long as you are still clear at 12, right?  Very good.  It is intersting that two doctors -- yours and gerbil's are saying that doing 80% of the Pi is adequate for SVR.  I wonder if it is fact
frijole
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Avatar universal
I am so happy for you Judy. You've dropped 5 grams of hgb in three weeks and your still working, you're pretty amazing. Even if it's a mayo doc, I find the instructions to take 1/2 your peg disturbing since this is your second time treating especially since your anc is low but not crazy low, your about to start neup and your platelets are good. Very conservative at mayo. Regardless, I have faith you will SVR since you have your RVR. We are rooting for you!
-Dave
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1253246 tn?1332073310
yahooooooo!!!!!!I knew it!!!!! cindy
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1652596 tn?1342011626
great news for you.  i'm so happy for you.  as of friday i, too, am UND!  woohoo!!!  take care, belle

  
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1669790 tn?1333662595
Congrats to you!  You must be enjoying this great news.  Once you get the rescue drugs worked out, hope the rest goes easier for you.  
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Avatar universal
Great news for sure, Looks like your well on your way.

elpasolady........"Encouragaing news about reduced dosage can have the same SVR chance.  Someone out there worrying, needs to read this"

The riba and peg can be reduced.......... Not the same for the PI though
Helpful - 0
244899 tn?1313624639
That is great news, it will all be over in no time. I'm sure once the rescue drugs kick in you'll be feel in fine. My next goal is getting to the 12 week hurdle to stop the incevik, hopefully that will lighten the sides. Great job. Keep it up. Joe
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Avatar universal
That is great news!!! Stay the course....you can do this. You give us inspiration!!!

Thanks~

Vann
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