Were you told ribo was needed with Harvoni

[GP7852]

I have been fighting for a very long time to get meds.My workplace changed companies as of the new year and got rid of my enemy,the hated Cigna and I have gotten approval from my new company.My Harvoni arrives tomorrow morning.I am a lifetime non responder geno 1a stage 4 cirrhosis.I finally cleared on sovaldi-olysio only to relapse immediately after stopping.My doctor origionally said he wanted me on 24 weeks of the Harvoni along with ribavirin.I said good,I wanted them to throw the kitchen sink at me.I wanted as much artillery as my body could stand because I believe if they bomb me with everything they have got this virus will be killed and never return.My doctors office told me today that they had a meeting with the people from Harvoni and were told that since I am doing the 24 weeks the ribo wasn't necessary and so I am going just with the Harvoni.I told them they are the doctors and they know best but inside I am sad that I am not including the ribo.I am almost tempted to buy it online.Does anybody have info about the ribo being beneficial when it is added to the Harvoni?

                                       Thanks for your input    Glen

[GP7852]

Thanks Pat-I will be keeping my eye open for that info
                          Glen

[patra_]

That, of course, is for 1a with cirrhosis, and prior tx, failed or relapse.  Not talking about treatment naive, or 1b.

[patra_]

I went to the AASLD site today.  It listed Latest HepC treatment -medication and it still show the 24 weeks Harvoni.  I couldn't find where the Riba is listed.  Either it hasn't updated yet, or I misunderstood the info on the Webinar.  I am going to try to call the phone # listed on the Registration form tomorrow and see if I can get hold of someone who can tell me how to pull up the slides, from both of the presentations, 1-6 and 1-16.

IF I am able to find nything, I will either post a copy, OR write down the link info.  Keep your fingers crossed.

Pat

[GP7852]

Just day 3 for me-I will let you know if this route that was prescribed for me is working.First bloodwork is in the mail.I really am confident I will clear.Its the relapse I am concearned with.I would of wanted as much artillery as possible to pulverize this virus so badly it wouldn't want to return to me.My doctors office had a visit from the people that make Harvoni and they told him the ribo wasn't necessary if you are doing 24 weeks.I guess you cant argue when you hear it from the horse's mouth.
                              Good Luck   Glen

[Dee1956]

Hey there! Really happy for you! So glad to hear you are getting treated.
Take Care
Dee

[His way]

GP
I am in the same boat as you. My Doc and I had decided on the Harvoni and Riba. She called the other day and said she had decided I should do only the Harvoni because the data results on 24 weeks was about the same. She was the one who had originally pushed for the Riba, so I was surprised. My script got held up at the specialty pharmacy over Christmas/NY, hopefully I’ll have it next week.
I also live in NJ, am stage 4, with prior relapses

[Dee1956]

Hey there!  I am really happy for you.  I know how hard this has been for you.  Also wanted to say that you have to trust your doctor.  When I treated with Incivek, Peg and Riba, the guidelines for someone like me a relapser was 24 weeks, it further said those with cirrhosis "may" do better with 48 weeks. While all around me were doing 48 weeks and encouraging me to do the same My doctor said, it is either going to work or not, I am not putting you through an additional 24 weeks of Interferon.
This is not to compare tx's but to say trust your doctor.
I thank God every day that I "only" ha ha had to do 24 vs 48.  I don't think I would be here.
Again, I am so very happy and I know how hard it has been for you.  I try to think everything happens for a reason.  Think of all the people who have followed your story (not posting) who are learning how to get their own tx.  Congratulations!

[GP7852]

Thanks Dee-and thanks for remembering,its been a long while since I started this fight and I am so relieved it's over.My mind can relax for 6 months before the stress starts again.The stress being the relapse.I finally cleared for the 1st time ever on the sovaldi-olysio 12 week treatment.If I cleared on that I now have the confidence that I will clear with 24 weeks of Harvoni.My main concearn is will I stay clear.I don't have the knowledge to understand how the virus won't return after I stop the Harvoni with nothing in my system to fight it.So my fear is not clearing,its starting this whole process of fighting all over again if the virus returns.Well,lets enjoy 6 months of not thinking about it.

                             Hope you are doing well D      Glen

[patra_]

Glen, I wish I could!  I followed AugustineMama's  (I think, I have no short term memory, thanks to INF, but that is another story) instruction.  That told me to download Adobe, which I (my husband) already had.  I, too, have been looking for a way to access the printed slides, as the treatment recommendations by the AASL are listed and quite clear.

Maybe someone here can tell us how.

Another method might be to go to the American Association for the Study of Liver (Liver Disease) anf dind their recommendations, as that was really what this webinar was all about.  

I will see if I can find that as it is a website I have been on before.  Will let you know if I have success and info there.

[GP7852]

Pat
Please direct me to the webinar info about the benefits of adding the ribo so I can print it out and show my doc
                                     Thanks    Glen

[Dee1956]

I am so happy to hear you medication is on its way, this is wonderful news.
You must be so proud of yourself for fighting.
This is a roller coaster ride from dx to tx and beyond
Take Care
D

[Dee1956]

Great news!  I am very happy for you.
Dee

[flyinlynn]

Hi Glen Hi Pat

Finally getting Ribavirin shipped overnight will have it tomorrow. So for better or worse I will be starting Harvoni / Ribavirin on Tuesday to coincide with first day of Harvoni week 10.

On Monday 1/19 I will have 9 weeks complete of Harvoni only with 15 weeks of Harvoni Ribavirin to go.

What doesn't kill you makes you stronger!
Lynn

[GP7852]

I missed it Pat-I work till 6 am so I get to bed around 8am and was in dreamland during the webinar.Maybe you could tell me if anything was mentioned as far as the benefits of ribavirin combined with Harvoni or non benefits of it.Happy to report that today was my first day of Harvoni and never felt a thing.A far cry from the early days of mid evil torture my doctor has put me through.
                                       Glen

[GP7852]

Kim
I'm with you,believe me.I would love to have the ribo along with the Harvoni so much I was even contemplating getting it on my own online.My doctor who really stays on top of all the drugs that are coming out actually had the people that make Harvoni at his office.Even though he origionally wanted me to take both the Harvoni people told him that 24 weeks of Harvoni does not need ribo.For now I am going with the program.I know that I am the hardest of the hard to try and rid themselves of this blasted disease and if I don't see the desired progress after a few bloodworks I am going to start raising hell.If I should clear and then relapse after 24 weeks I will be very resentful to say the least that they didn't allow me the ribo.

                                                    Glen

[patra_]

Glen:  DO sign up for that Webinar.  Even though it is aimed at the AbbVie and it's Viekira Pak, if it is anything like the first one, there is much to take away from it that applies generally.

hepcandme & flyinlynn:  Amen and Amen (and an extra one for Glen)!

From the first of these one of the General things I believe was excellent was that they have found, are using Ribavirin again, that from AbbVie's studies, etc, Dr. S said the Riba DOES make a difference.

Glen:  You might site that first Webinar (Jan 6th ) to your Dr and ask him to access that info and prescribe the Riba.  it can't hurt to ask AND you are giving him something from research to back up your request.

All:  Agree with all, kitchen sinks, hot coals and retreatments til SVR!  Come on SVR for all!

God treating and good health!

Pat

[RickDDay]

in the same boat as you, end stage, 1A, etc. went through first two 'triple therapies', only to mutate into relapse.

I started Harvoni on 10-22-14. No riba because I'm taking the 24 week regimen. in my 13th week.

4 weeks into treatment the virus was gone. My ALT and AST levels are in the normal range, something I have not seen in a blood lab since 2000. The mess the PEG made of my blood is slowly coming back into normal ranges. No more leg edema.

Best thing I can say about the triples was it caused my hair to darken. Kind of strange being almost 60 and no gray hair. Nary a side effect, especially compared to the Fangs of Dracula (my pet name for PEG/riba).

All I am waiting for now is to complete treatment and baby my liver back to some semblance of normal function. I'll be waiting for you at the finish line, Lynn!

[Livelife777]

Hi Glen.  Happy to see you've been approved and moving forward with Tx.
Know your past history as we all started this journey together and felt so bad when the 3 of you relapsed.  Lynn, Linda and you!!!
I know how important this next go-round is for the 3 of you and the significance of getting it right is beyond comprehension.  Have seen the devastation and destruction emotionally and physically for everyone whom has relapsed.
My personal opinion is to push for the Riba.  At this time you want to do everything humanly possible to eradicate this ***  You may want to give a shout out to Hector as his opinion is beyond valued.  From getting to know you on-line I know this added Riba would if nothing else give you piece of mind.
On the hand, the Harvoni for 24 weeks seems rather encouraging. Unfortunately these new meds are in their infancy and we don't have a clear past record in which to back them up. I'm still tho going to stick with my guns and say go for the Riba.  Not only did I take it with Sovaldi and clear, but felt that it wasn't as bad as everyone said it would be.
You know we are all pulling for you!
.....Kim

[hepcandme]

Amen sistah!

Glen, I should have used the word webinar. Tomorrow morning - in post a few down from this one:

http://www.medhelp.org/posts/Hepatitis-C/New-Webinar-1-16/show/2435071

You can sign up still, I'm sure. I did notice that the sponsor was Abbvie so, if I feel like I am not getting anything out of the webinar or that they are trying to ell their product, then I'll just log out

They may not choose to answer a submitted question that doesn't have a clear cut answer

Presumably most who participate will be in the medical field

[flyinlynn]

Yes Linda

Agree with everything you said hot coals and all! And my gut also says 24 weeks could have don't the trick. But my favorite remark was

"after we achieve SVR this summer"

Can I get an amen brothers and sisters!

Damn the torpedos and full speed ahead!

Lynn

[GP7852]

Hi Linda
I am not familiar with the conference you are attending but I would love to hear what you heard about the benefits or non benefits of Harvoni with or without ribo.Would you be kind enough to relay that info on to me in this thread that I am writing on now.It would be deeply appreciated.
                                          Glen

[hepcandme]

You'll do fine, Lynn!

It's still a matter of not enough data GP. There are some small studies that show no improvement with adding Riba and other small studies that encourage its continued adjunctive use

I have posted this very question for the conference tomorrow morning so I hope it is answered

Throwing everything at the disease is great but also not all that scientific, hehe

But as part of the duo (Lynn and me) that would walk over hot coals to achieve SVR, I'm going to throw the Riba at it too.

We belong to a smaller group of people who relapsed on S/O and have liver disease.  A smaller bucket of people make for smaller scientific data sets so, after we achieve SVR this summer, those collecting the data will have more evidence of Riba's continued efficacy

My instinct is that we would have cleared if we had done 24 weeks of S/O but, we were the test cases and sadly, even the docs say - yeah, we probably should have done that for 24 weeks

Keep us posted about what you decide to do and I am really rooting for you!

~ Linda

[GP7852]

Boy oh boy Lynn-I was afraid to hear stuff like that.I can't fight city hall but if I am not getting the desired results after a few bloodworks I am going to request the ribo.There was so much work and time that went into getting the Harvoni that I must be allowed to give this my very best shot cause there might not be another.
                                            Good Luck   Glen

[flyinlynn]

I have seen that 12 weeks of Harvoni with riba is about equal to Harvoni without riba for 24.

I am like you a multiple null responder GT 1a with cirrhosis how relapsed on Sov Oly 12 week treatment.

I started on Harvoni for 24 weeks on Nov 18th and started asking my doctor about adding riba in late Dec for as you said bring out the artillery.

She did say wish we had thought about that before treatment. But finally getting the script processed at Express Scripts today. As far as I know at the moment if I have the Riba next week my treatment will be 9 weeks of Harvoni and 15 weeks of Riba Harvoni Just hope I can hack it.

Lynn