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Post Info TOPIC: update - day 6 of Sovaldi + Riba


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RE: update - day 6 of Sovaldi + Riba
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I'm sure it is primarily riba-driven. To what degree the other drugs may be contributing, I can't say...   wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 



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thanks oldenslow.  i hope i dont get to hg10,if i do then they will back off riba. do you think or know if the third rx your on -the olysio is contributing to your hg drop or is it all because of the riba?   RC



-- Edited by robertsamx on Saturday 22nd of February 2014 06:12:02 PM

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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hey Robert...  Just to give you a point of comparison:

Baseline Hgb: 14.8
2 weeks into tx: 13.6
4 wks: 12.2

I believe this is normal and expect them to fall further. With your ticker troubles, you will be monitored very closely.

Liver enzymes:

Baseline AST:  84   ALT:  71
4 wks:   AST:  31   ALT:  21
  
RBC's and WBC's down across the board. Bilirubin has spiked. This is all good, within reason. Something cool is going on in there. :)



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 



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Hey Rob! Those are some fantastic drops in your numbers - congrats!! I'm no medical professional but based on what I know I think you're absolutely fine on your HG - you started with a fairly high baseline. I know 15 is the high end of the "normal range" on all my papers.  I believe you're fine all the way down to a 9 or 10 - granted that's when you really start to feel some side effects such as fatigue but I do not think they start tapering your Riba until you get there. I can tell you that my baseline HG was 13.2 and my doctor specifically said "you ARE going to get anemic" (not if, or might, he said ARE) and he said that he expects a 3 point drop over the length of treatment. I guess I'll back up, he said, "you're at 13.2 which is good because I expect a 3 point drop which would bring you to 10 and then we won't have to adjust your Ribavirin".  However if for some reason he's wrong and I drop more then of course we'll cross that bridge when we get there. Either way, you're still higher than my baseline, with your drop so I wouldn't think much about it if I were you! As for the drop being a good sign; yes I believe the theory is that if you're HG is dropping that means the Riba is working. Obviously your meds are working - look at your VL!  biggrin

Why are you getting weekly blood draws? Is it just because you're on a trial or do you have an underlying medical condition they're concerned about?

I will be getting blood draws (CBC) every 2 weeks but VL's only on the week, 4, 8, and 12 draws. Tuesdays are my day throughout treatment - I started treatment on Tuesday 2/11 and my blood draws and doc visits are all on tuesdays except my week 12 doc follow up will be on a Thursday.  So this coming Tuesday I will go get my blood drawn - should have the results by the end of the week and I will post.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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enavigo, cant wait to see your results, got mine today   best of luck (treatment) to you   RC

RESULTS OF WEEK ONE BLOOD DRAW, WELL ACTUALY 11 DAYS INTO TREATMENT BLOOD DRAW.  AFTER   11 SOFOSBUVIR, AND 60 RIBA, MY RESYLTS ARE AS FOLLOWS---

BASE LINE   HG 15  PL 144  ALT 290  AST 130  BR 0.6  LIPASE 769  AMYLASE 241  V LOAD 5,660,000  LOG 6.75

DAY 11        HG 14.1  PL 178 ALT 118  AST 56  BR 0.9  LIPASE  76   AMYLASE 76     V LOAD 1,490         LOG 3.17      V LOAD ONE THOUSAND FOUR HUNDRED NINTY 

I"LL TAKE THOSE RESULTS ANY DAY. I HAVENT BEEN UNDER 125 ON MY AST FOR 30 YEARS   MY ALT IS ALWAYS OVER 200. 

TODAY WAS THE WEEK TWO BLOOD DRAW, WELL ACTUALY 18 DAYS INTO TREATMENT AFTER 18 SOFOSBUVIR AND 105 RIBA. WILL GET THESE RESULTS BY END OF NEXT WEEK AND WILL POST. AFTER STUDY NURSE TOLD ME MY RESULTS MY BLOOD PRESSURE SHOT UP TO 180/105 FREAKED HER OUT BUT IT SETELED DOWN AFTER 30 MIN"S. I GOT PRETTY EXCITED WITH THE NEWS.

MY HG DROPED FROM 15 TO 14   ANY CONCERNS?? INPUT HELPFUL ON THIS, I THOUGHT I READ THAT A DROP AT FIRST WAS A GOOD SIGN, BUT IT WOULD LEVEL OFF AFTER A COUPLE WEEKS??   I DONT WANT TO CUT BACK ON REBA EVER, BUT THE OLD TICKER WACKS OUT ONCE IN A WHILE SO DR IS REALLY WATCHING MY HG.    FEELING GOOD   THANKS ALL RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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So today is day 12 and today was a good day. Its kind of funny how some days I feel side effects and then there's days like today where I have energy, no headache, no itching and it turns out to be an uneventful day!

I have got some interesting coincidences coming up in dates corresponding with my treatment and I'd like to think that's a good thing. I just realized I'll finish the first 4 weeks (day 28) on my 31st birthday! I'll get labs and hopefully a VL the following day (no 2 week VL for me). And as I've previously mentioned, I'm in the process of building a house; we met with our builder yesterday for our "pre-framing meeting" and he gave us our ECD - 5/5/14 ... That's day 84 - my last day of treatment!!



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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I was specifically told to take the Riba with full meals and not just snacks. And I too was told that your  body will adjust at some point - that doesn't mean the sx will definitely go away but some will. I have been keeping a notebook with the times i've taken the meds as well as what food I took them with to help me see what works and what doesn't. I also put in that notebook the sx i've experienced that day. At this point, nothing I'm experiencing is really unbearable or unmanageable so I will bring it all up at my 4 week f/up visit unless something major occurs before then at which point I will notify the doc.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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Its most likley the RIBA causing the upset. I was told that I must snack at pill time or I surley would get upset stomach. It seems that they also told me that your body will adjust to drugs and it will get better??      HOWEVER  I   AM   NO   DOCTOR   AND  YOU  SHOULD  TELL YOUR  DR.  WHAT   SX   YOUR   HAVING     do you tolerate gluten??

RC      



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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aaah gotcha! The weird thing is, the hot food isn't giving me indigestion. I used that as an example as it's often the cause of it yet despite how much of it I eat I do not normally get indigestion. I'm getting it off things like crackers and cereal. But it's livable, nothing too intense. I did however today send out an SOS for Benedryl! I woke up with blotches on my face and neck and I had "the itch" all over - I tried to ignore it but about 40 minutes into my day it became absurd. I was out of benedryl and nobody at work had any. Thankfully a friend who hadn't come in yet was nice enough to stop at the drug store for me!

I am one full week into it, took my evening dose of day 7 a few hours ago. 11 more to go... I got this!



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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No  I"m not saying that the spicey hot food you eat will affect your treatment or outcome. I"m saying that if  I  had a upset stomach from taking RIBA and or PEG and even thought that the spicey food was contribuating to my upset  stomach  It would be a no brainer to knock off the spicey food while on treatment!  RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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robertsamx wrote:

I was trying to say that treatment is so short now days on this combo that giving up the hot spicy foods is a small price to pay for UND   RC


 Understandable... but is the idea of Hot Sauce/Spicy Foods negatively affecting treatment a shot in the dark or do you know something. This is the first I have heard about the "type" of food I eat while on treatment waying negatively or positively on treatment.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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Thanks for the updates guys, some of us have to do 24 weeks on this combo, but it seems a lot less troubles than the old therapy. It seems you can all maintain a pretty good standard of living still. It is appreciated all the postings! :)



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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I was trying to say that treatment is so short now days on this combo that giving up the hot spicy foods is a small price to pay for UND   RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hi Kristen,

I have had stomach upset, even before treating.     Ginger ale has worked to relieve some of the indigestion.    I love spicy foods also, but I am trying to avoid anything right now that will cause unnecessary distress.  Hot wings, Jalapeno's, spicy sausage, etc...   Chocolate is my weakness, it's upsetting my stomach right now, maybe this will cure me of that particular addiction!

 

Day 15 for me & so far, so good!!!

 

 



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GT 2  VL on 10/23/13 7.2 Million; AST 55;ALT 79;AFP 3.2; Started 12 weeks Riba/Sovaldi 2/2/14 - Results Undetectable at 12 weeks!  



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Kristen,

Thanks for the update. smile   It's interesting the variety of sx being reported, as well as the degree to which people feel them, if at all.  Seems like the only thing predictable is that nothing is predictable.  

Week 4 of tx for me (Sovaldi/Olysio/Riba).  Week 1 -  some itching and insomnia, not much else.  Week 2 -  the itching resolved into a non-issue (started moisturizing more regularly), but the insomnia continued.  Week 3 - Started sleep meds, which have helped with the insomnia, but started feeling an overall decline in energy.  Had to back off considerably on my exercise schedule to accomodate it, whatever it was/is. Woke up yesterday (day 22) feeling pretty darn good and it has continued into today.  Still can't run with any intensity, but can make it work. RBC's dropping, maybe?  I don't know.

Digestive issues have been there, but minimal.  I do take 150 mg of generic Ranitidine (Zantac) daily with dinner.  It's clear the stomach doesn't like these meds, but manageable so far.  I know it's imperative that I take them with food.

There is a general feeling of restlessness or nervousness to everything, for me, which is probably Riba-induced.  I don't care for it much, but am thankful it will be of relatively short duration and is manageable, thus far.

Take care,

Wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 



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.... I think your post got cut off.

why should I lay off the hot sauce and spicy foods? the treatment is only _______?



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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KRISTEN, I KEEP SALTEEN CRACKERS BY MY RX. I HAVE ABOUT 5 TO 6 CRACKERS, DRINK 6oz OF WATER ABD THEN TAKE MY PILLS. I DO THIS AT 5 AM AND 5 PM. ITS NOT A LOT OF FOOD, JUST A LIGHT SNACK AND IT WORKS FOR ME.  I TRYED NOT SNACKING ONCE AND DID NOTICE  A RUMBLE/UPSET BELLY.  I HAVE HAD A SLIGHT ITCH  BUT NOTHING BAD OR THAT LASTED LONG. NO HEADACHES, BUT I DRINK LOTS OF WATER.  MY BIGEST PROBLEM IS NOT SLEEPING, IM WAITING FOR DR TO OK SLEEP AID. YOU MIGHT WANT TO LAY OFF THE HOY SAUCE AND SPICEY FOODS, REMEMBER THE TREATMENT YOUR ON IS ONLY



-- Edited by robertsamx on Monday 17th of February 2014 12:13:18 AM

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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hi Everyone,

I was just sitting here reading up on everyone's progress and upcoming treatment regimes; I figured I'd drop in with an update on my status. I am only 6 days in so I understand my body is getting used to the meds still.

So far no insomnia issues, sleeping pretty well actually. Mild intermittent headaches started day 2 but I realized quickly they can be controlled (somewhat) by adjusting my water intake. I have had "the opiate itch" 3 times where i wanted to rip my nose off my face, thankfully those incidents were brief. Yesterday my forehead broke out like a teenager (really not a flattering look on me). What's got me annoyed right now is that for the last three days I've gotten indigestion or heartburn in the late afternoon and I never get that; regardless of what I eat. I'm a huge buffalo sauce/hot sauce fan and even after that, I never get indigestion. The last three days I've gotten it after eating anything, even Ritz crackers; its just enough to be annoying. And this evening, I am looking at the clock as I write this, my PM dose is due in 30 mins and I DO NOT want to eat. Not because of the indigestion but because I'm just not hungry. I guess I'm going to take this evening's Riba on a snack instead of a full meal and see what happens.

Regardless, I am fully aware that on the scale of possible side effects - i'm still way at the bottom and doing real well. Just wanted to throw my experience out there for all those preparing for treatment.

Hope everyone enjoyed their weekend!



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 

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