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Post Info TOPIC: Anyone hear of dropping Riba @
TimS44


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RE: Anyone hear of dropping Riba @
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Hi Mallani,

 

 Thank you for the explanation. It was indeed an ARUP lab they used. Perhaps because I already had a genotype done and on file there, they weren't looking for the same specificity. 

I agree with you about dropping the Riba. Though I am afraid about not dropping and doing my next labs and my dr. panicing and really cutting the dose. Unfortunately his staff has made it impossible to discuss this with him until my next appt. on Thursday. So I have cut  down most days. I have been using the Gracie method, the days I feel stronger going up to 1200, others at 1000. I do plan on getting an explanation this week and hopefully an ok, even if a reluctant ok, to continue 1200mg full time. I will keep you all posted. Thank you again, especially where my medical team has made information so difficult, to be able to get such good info here has been invaluable. It is so greatly appreciated!

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
TimS44


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Hi Tig,

 That was indeed the pre-tx blood work. Sorry I didin't mention that. From there, their was almost 5 weeks for the insurance approval, med ship and teach appt. I am excited about the vl drop and I'm anxiously awaiting my next test. I'll be sure to post here soon as I get it!

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
mallani


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Hi Tim,

Only part of your report can be seen. However, you appear to have the ARUP Lab. Genotype test. This uses a 'target' from the 5'UTR end of the virus. As you can see from the enclosed link, differentiation between Geno 1a and 1b is often not possible using this test. An additional 'target' from the NS-5B region is required. The Roche, Abbott and Siemans tests do 3 different sequences, allowing accurate Genotyping. If you were 1a in the past, you still are.

http://ltd.aruplab.com/tests/pub/0055593

Personally, I would refuse to drop my Riba dose, and demand to see evidence why it is needed. Up to you.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hey Tim,

I started counting from your first test date, but I guess that was your pre -treatment work up. A 6 log drop in 4 weeks is great. You can smile about that! I see your test listing that as 1a/b, but sure don't know why. It's either 1a or 1b, can't be both. At least I've never heard of that before and I'm unable to find it referenced anywhere. Malcolm or Jill may have more information or can confirm that. I guess you could've contracted both genotypes seperately, but I've never heard of someone being infected with 2 different HCV genotypes at the same time. I'm going to be surprised if you aren't undetectable at your next VL test. I would bet on it! Keep fighting, you've got that dragon going down in flames! Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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TimS44


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Hi Tig,

 I am beginning week 4. These results are my week 2 labs. A nurse called me after these came in and said the Dr. wanted me to drop the riba from 1200mg to 1000mg. Seemed odd to me, because I have seen ppl on here with much lower numbers here soldiering on. I asked the nurse and she pulled because the "Dr said so". I have an appt with him next Thursday and hope to get a better explanation. I know I have Genotype tested in the past and it said 1a. The Dr and I have discuss being 1a, but the lab result I have hear literally says 1a/1b? I attached a pic. Hope I did that right wink

 

Tim

 


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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
Tig


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Hi Tim,

Those numbers are still quite good, the Hb drop is indicative of things moving in the right direction but not low enough (<10) to warrant a dose reduction. The VL drop is very good. What week are you approaching, 8? Your platelets are showing a slight increase and with the other numbers showing mild anemia. What has your doctor revealed and what is your current Riba dose? The other thing is your genotype. You're either a 1a or 1b, not both. What does the result say specifically?

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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TimS44


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Hi All,

 

 Just got a paper copy of my blood work. Original VL 37.6 million.log 7.58. 2/25/14 VL 138 log 2.14

                1/06/14                                  2/25/14

RBC        5.74                                      4.35

WBc        6.79                                      4.92

Hemoglobin  17.0                                13.1

Hematocrit    50.7                                37.9

mcv               88                                    87

platelet count 307                               331

Also seems I am Genotype 1a/1b? as opposed to 1a.

 

 Didn't know if having a clearer picture gave anyone any thoughts about droppping the Riba or if still seems unusual. Thanks everybody. Staying positive and thinking about the viral load drop!

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
TimS44


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Thanks Dragon Slayer, That is encouraging news. All that shoveling was killer. I also work as a telephone lineman which is a very physical job , especially in this weather, and have felt the effects but I really didn't want to drop so soon. I feel like I could've made it longer. I hope to have a conversation with my doctor, not the office nurse, in the coming days. We'll see where that goes and how we proceed from there. Thanks again! Tim

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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
Hep-C Dragon Slayer


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I am on day 50 of Sovaldi, Olysio and Riba (1200).  My hemoglobin dropped to 10 for two weeks (weeks 5 and 6) and my doctor cut my Riba down to 900 mg a day.  I take a 600 in morning and half a pill in the evening.  My weight is 190.  In week 7 my hemoglobin rose to 13.2.  Simple chores like shoveling that mass amount of snow we got was a killer to me when my hemoglobin was at 10.  I have Sarcoidosis in lungs and liver so I cannot take the Interferon and Sarcoid itself  causes shortness of breath.  Add the Riba which causes shortness of breath, I was a hurting 54 year old.

 I was okay listening to my doctor, it worked, I was able to still do my father and husband and job tasks.  I feel better and I have been undetected since week 2, 4, 5, 6 and 7.

 



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GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14
TimS44


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Thank you Malcolm, Sandy, Sally and Zlikster,

 It seems obvious this a bit unusual to be dropped. I am going to continue on 1200 mg and ask for an appointment to come in and discuss why this should happen. Requesting all my blood labs tomorrow. I still have enough Riba to take at full dose for two weeks. I'll just have to resolve this before my next Rx refill. Thanks everyone for their help, thoughts and experience. I'll keep you all posted.

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
ucbgal


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tim,

just read your post & am baffled by the nurse's comment. i concur w/ jill's statement about not reducing dosage until the hemoglobin drops

to 10. anemia is not fun whatsoever but there are rescue drugs to avoid it. perhaps you can suggest an rx for procrit instead of riba reduction.

this issue was a serious concern for me during my tx. at one point my hgb went down to 6.0 & i was off riba for 10 days. basically i trusted my instincts, didn't always follow drs. orders , even doubled up procrit shots towards the end !!!!

i'm 2 mo. eot and still am dealing w/ low cbcs and hgb. i have the mediterranean anemia. life is good fro i'm hcv free!!!!

good luck & be well.

sandy,ucbgal



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Zlikster


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Yeah my hepa didn't liked i was for first 3 months with 11-12 Hgb, she said the more toxic (level wise Hgb n RBCC) ther better Riba works. According to my weight i should/could have been on 800mg for a start, but she started with higher dose with Riba and espec. with PegIntron. I wish she didn't dropped riba (for almost 4 weeks i was on lower dose). I had lsevere weight loss tho, so that might be the reason.

In any case, good that you have told em you are will to go for Procrit or transfusions. If they see you are that motivated they will maybe push it bit more. I had to obtain Neupogen shots on my own so i could stay on interferon bit longer.

all the best buddy



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
globetrotter


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Hi 

I too was told that dropping Hb is a good sign that you are responding positively to treatment. My Hb went down to 9.0 and as long as I coped ok my team didn't want to drop my dose just to give me the best chance. Go armed with protocol guidelines!

 

Sally



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
mallani


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Hi Tim,

Sorry to hear your medical team are unhelpful. You can demand to know your blood test results, as they belong to you. You also must be assertive and be able to quote the Sovaldi and Riba prescribing information to them. At 93 kg you should be on 1,200 mg of Riba, and for 12 weeks, you should stay on that. Be firm.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
TimS44


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I appreciate that Gracie! True enough, I guess it's working. I do have enough riba to get to 3/4. My next appt is 3/6, maybe I'll just keep plugging along. 

Agreed Wayne, mystifying.

 I went to this hospital (almost 2hrs away) specifically for Hep C treatment. They have been cited multiple times in US news' top hospitals in the US. As well as other national rankings. Feeling a bit disappointed right now though.

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
OldenSlow


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I guess I'm with everybody else, Tim. I don't get it.  My week 4 RBC's were 3.7/Hb 12.2 and there's been no talk of dose reduction. And I'm doing 1200 mg/day at 155 lbs body weight.  In the absence of other issues, I'm mystified..

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

 
Gracie


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If it makes you feel better, anemia means it's working ... :).

RIBA reduction is usually done when hemogloben is below 10 as others have mentioned. 

I'd wait to talk to your doctor and get a complete blood count and explanation. I'm sure there must be a logically reason. Either that or a mistake. 



-- Edited by Gracie on Monday 24th of February 2014 10:56:39 PM

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
TimS44


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Thanks Jill,

 And that's what we discussed, dropping if I should go below 10. The nurse was not receptive to questioning. Tomorrow I will call and get a copy of the full work up and maybe get someone more receptive. Again she said at 4.1 I'm borderline anemic and "that means you'll get very sick" Grrr. Because I don't research what could happen to me or understand big words like anemia.no

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
Cinnamon Girl


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If your Hgb is 13 then I can`t understand why they want to lower your riba dose, Tim.  And a Rbc of 4.1 is only just below the normal range.

The protocol according to Gilead`s prescribing information states that the riba dose should be reduced to 600 mg/day if the Hgb level drops to  <10 (less than 10). 

Here`s a link to that information, scroll down to section 2.2 `Dose Modification`... 

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
TimS44


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Hi RC,

 No other issues outside the Hep. Other than that reasonably healthy and and reasonably fit. Pretty disappointed right now.

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
robertsamx


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Tim   do u have heart troubles?  something like wolf park white? or tacca, any electro trouble with your heart will  cause  DR to slow you down on riba, try to stay as high  on riba as u can, 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   
TimS44


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Just called them Hg @13.0. The nurse said they were dropping me because RBC's were down to 4.1? I tried to express how much I wanted to stay @1200. I got the "This is what we do here" Grrr. I am continuing @1200 for now. (Because I am willfull and riba ragey!!!furious)(or maybe I'll just relax and reluctantly follow orders...we'll see what a couple hours does) Thanks Guys again!

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
TimS44


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Thanks for all the replies. It seems my thoughts are being echo'd here. I had an appt. on Friday, my first. We discussed prescribing protocol (may have made that up but it was something to that effect) of solvaldi was to cut the riba in half if you fall below a 10.0. I told him I didn't want to cut no matter what and are there any other options? Procrit, EPO Whatever. He said well, you should be no where near 10 this early and probably not during such a short treatment. @Scruffy I have lost 5 lbs or so but I am still much higher than guideline for 1200mg (I am 205lbs) @Cinnamon Girl I am currently @1200mg. Nurse got a little pi$$y when I began to ask why and what was my current count. I am going to call back and ask for more explanation. I did want to post here and see what the thoughts were. If maybe there was another indication for dropping that I was unaware of. I mean overall I feel pretty good and just got home from work. I feel as though I am adjusting better to the meds and it's not time to reduce them. We'll see. I'll keep you posted. Thanks very much for the input and listening to me vent a bit.

 

Tim



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Genotype 1a. Triple therapy Interferon/Riba and Solvaldi. Initial VL 37.6 mil. Week 2 138. Biopsy 2/2. pre tx AST 37. ALT 60. 
Scruffy


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Hi Tim

Have you lost any weight?? Riba dose is by weight that could have a bearing. I wish my HB was 13. I'm at week 37 and my hb dropped back down to 8.2 last week. Its been as low as 7.2 and I had to transfuse but Doc only mentioned a riba reduction. As long as I don't complain hes kept me on the full dose.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Gracie


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Mine was reduced when I went below 10 (9.8). It's been above or close to 10 since. I'd check on that for sure. Mine weren't as high as yours when I started treatment.

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Zlikster


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don't let em reduce your Riba! If they see you are motivated and willing, they might keep u on full dose.

i had to fight with my hepa not to reduce from 1000mg to 800mg when i was @ 10.9, but she reduced it anyways :/ (not blaming that case for my relapse, but still i was prepared to go under 10 with full dose)

best





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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Cinnamon Girl


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Hi Tim,

I`m surprised your doctor is talking about reducing your ribavirin dose so soon and with such good Hgb counts.  The published treatment protocol for Sovaldi treatment recommends reducing the dose only when the Hgb drops below 10.  So are you on 1200 mg of riba at the moment?

I would definitely question that.  In my opinion you want to stay on as high a dose as possible, especially as you`ll only be on these drugs for 12 weeks.

Best of luck, and let us know how you get on.



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
TimS44


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Dr just called after first labs on Friday. He wants me to drop my riba down to 1000 mg. so asked was my rbc's dropping? The nurse said not too bad. Your at 13.0 from 14.0 seems early to drop, no?

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