Author Topic: Is 16 wks Tx of Sofo/Riba enough for a G3a like me? (Read 15562 times)

Jazz · « **on:** January 04, 2015, 10:48:59 pm »

Hi all,

I'm in my 12th wk of a 24 wk Sofo/Riba trial. However, the Riba made me anaemic by wk 3, therefore I was prescribed a dose reduction, from 1000mg to 600, and as I have continued to be anaemic, I have remained on that amount.

By wk 4 virus was 'undetected', and has remained so since. AST, ALT, platelets etc are all now within normal range.

If my Hgb falls below 9 I am off the trial, no rescue meds. To be honest there is a part of me that just wants to finish the meds at wk 16, as I am so tired, which in turn makes me feel miserable.

The stats that Lucinda posted re: anaemia and successful SVR for G3s at 16 wks lend support to my thinking (http://www.natap.org/2013/hepDART/hepDART_15.htm). My doc says anaemia is a positive indicator for successful SVR.

So will 16 wks of Sof/Riba, for a Riba induced anaemic like me, be enough to kill this virus forever?

Any thoughts appreciated. Would appreciate your input too, Lucinda.

May you all have a virus free future!
Best, Jazz

Lynn K · « **Reply #1 on:** January 05, 2015, 12:48:38 am »

Hi Jazz

I know the treatment can be tough but speaking as a 3 time null responder to interferon based treatment and a relapse to Sovaldi Olysio, I would try to stay the course if you can the last thing you would want to do is end treatment early only to relapse and have to fight your insurance to get treated again.

Best wishes to you no matter what you decide

Jazz · « **Reply #2 on:** January 05, 2015, 03:02:47 am »

Thanks for your reply Lynn. I will try to stay the course, but as I'm on a trial, if my Hgb falls below 9, I will have no choice in the matter.

However, you read rightly - the way I feel at the moment, I dream of discontinuing at 16 wks but I won't unless they throw me off the trial due to low Hgb levels.

Ribavirin, what a hoot - Not!

All the best

Lynn K · « **Reply #3 on:** January 05, 2015, 03:07:29 am »

Hang in there Jazz

You are tougher than you know. Hopefully your blood tests have gone down as far as you will.

Rah rah go Jazz you can do it! Go team Jazz!

Jazz · « **Reply #4 on:** January 05, 2015, 03:25:03 am »

ha ha! Thanks for the giddy up Lynn

Jazz · « **Reply #5 on:** January 07, 2015, 11:09:12 pm »

And all strength to you Lynn! I hope this time you nail the beast!

ranjankoyn · « **Reply #6 on:** January 08, 2015, 03:53:35 am »

Quote from: Lynn K on January 05, 2015, 03:07:29 am

Hang in there Jazz

You are tougher than you know. Hopefully your blood tests have gone down as far as you will.

Rah rah go Jazz you can do it! Go team Jazz!

I got my six week draw last week it came back <15 still detected im on 24 weeks harvoni why do some saythat they are cured.

Lynn K · « **Reply #7 on:** January 08, 2015, 04:17:41 am »

I haven't noticed anyone say yet they are cured on Harvoni unless I missed that at least not unless they took Harvoni on a clinical trial. Otherwise Harvoni hasn't been available long enough for someone to have completed 12 weeks of treatment plus a 12 week post treatment wait to see if they have made SVR12 which is considered cured.

Many have posted they are considered cured SVR 12 after completing treatment with Sovaldi and Olysio or some other Sovaldi regime like Sovaldi ribavirin.

I was undetectable at 4 weeks but not everyone is UND right away. I bet you are UND on you next viral load test.

Good Luck

ranjankoyn · « **Reply #8 on:** January 08, 2015, 04:26:10 am »

I thought when you viral count went from 9000000to 15 they were not detected I am

Lynn K · « **Reply #9 on:** January 08, 2015, 04:34:49 am »

Results can be posted as in my case "HCV Not Detected"

There is a notes section on my report that may explain:

"The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"."

Basically there could be a detection of the virus but the test viral load limit is 15 IU/mL so if you had say 5 IU/mL the test might detect the virus but the quantity is less than the range of the test to quantify the result. For quantitative think quantity of.

Hope that helps

ranjankoyn · « **Reply #10 on:** January 08, 2015, 04:43:47 am »

thanks

Feetfried · « **Reply #11 on:** January 13, 2015, 04:38:28 pm »

Im 60. Texas... Will start Sovaldi and Olysio this wk. Gen3. 6 mil VL.... LOOKING FOR SVR 12.....Good luck.....

CE · « **Reply #12 on:** January 13, 2015, 06:54:33 pm »

Feetfried, are you genotype 3? I thought Olysio was only for genotype 1.

Feetfried · « **Reply #13 on:** January 13, 2015, 07:10:03 pm »

Gen 3.....had this hep about 30 years. Olysio used for all types. Ive seen quite a few posts from those using the combo Sovaldi/Olysio. Gilead was stopped by FDA I believe from manufactoring a combo pill. It just amounts to whatever your Dr. wants to prescribe. Dr. has final say in what scripts he writes.

CE · « **Reply #14 on:** January 13, 2015, 07:19:38 pm »

I'm sorry. I just don't see that anywhere.

Feetfried · « **Reply #15 on:** January 13, 2015, 07:26:47 pm »

I use google alerts to keep up with the ever-evolving hep c treatments. Especially the gen 3 as typically it is more difficult to treat.

Feetfried · « **Reply #16 on:** January 13, 2015, 07:29:40 pm »

The issue of money seems to have taken the stage lately as Sovaldi real moneymaker. Treatment for the combo Im using is 150K. Thankful for insurance.

CE · « **Reply #17 on:** January 13, 2015, 07:34:46 pm »

Yeah, my treatment is $150k too. My insurance covered all but $640! Good luck to you!

Feetfried · « **Reply #18 on:** January 13, 2015, 07:37:42 pm »

My treatment for 3 months. 12 weeks. So far my only problem has been with CVS specialty pharmacy. Out of pocket expense is 0. Sovaldi provided 7000 for co-pay.

lporterrn · « **Reply #19 on:** January 14, 2015, 02:41:23 pm »

Hi Feetfried,
I am very curious about your doc's treatment, and will be watching how you do. I am not challenging it - just curious, since it goes against current HCV treatment (and retreatment) recommendations for GT 3 which specify that simeprevir-based regimens should not be used for GT 3. http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection

For those who aren't aware of off-label provisions, the doc gets to choose the treatment. Insurance doesn't have to cover it. Presumably your doc has a good reason for this, and I'd love to know the research behind it since GT 3 patients are contacting me a lot, desperate for help. I just can't find compelling evidence for this.

I wish you the very best. Please keep us posted - Even though it is considerably off-label, I'm rooting for you. May I suggest that when you start treatment that you start a new thread (or even a blog) so it will be easier for GT 3s (and curious me) to follow.

Feetfried · « **Reply #20 on:** January 14, 2015, 02:47:30 pm »

Keywords here are treatment naive patients. I am not treatment naive. Sovaldi/Olysio treatment effective in 94%...hepmag.com....... Contact e-mail.. Gary10325@gmail.com

lporterrn · « **Reply #21 on:** January 14, 2015, 02:55:33 pm »

Probably even more neglected than GT 3 is the GT 3 with previous treatment - all the more reason I am looking for info. No protease was recommended for retreatment of GT3: http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

Feetfried · « **Reply #22 on:** January 14, 2015, 03:10:04 pm »

I say treatment naive .....actually it was 1995 or so. Treatment with peg-intron and ribovirin .....I only lasted about 2 wks or so after quitting treatment.

lporterrn · « **Reply #23 on:** January 14, 2015, 03:11:53 pm »

Yes, absolutely closer to treatment-naive than treatment-experienced.

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Author Topic: Is 16 wks Tx of Sofo/Riba enough for a G3a like me? (Read 15562 times)