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Author Topic: New here with question  (Read 13212 times)

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Offline annabanana

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  • Posts: 16
New here with question
« on: May 14, 2014, 01:49:20 pm »
Hi Everyone,
I have been browsing the board trying to learn more about treatment and the path this disease takes.  I was diagnosed in 2002 with type 3A.  I am not sure how I became infected, but I guess at this point it doesn't matter.

I have never tried treatment because it was so rough, my doctors didn't feel I needed to.  My viral loads have always been low (400,000 or less) and all my tests are normal.     I realize that doesn't mean the virus isn't damaging my liver.   Only issue is mild fatty liver, but I am about 40lbs overweight...could be related to HepC too. For the most part I don't even know I have the disease although it may be wreaking havoc on me inside.

Fast forward to 2014 and the new nifty treatment that may eradicate the virus from my  body. 

As I have researched, and knowing I will have 24 weeks of Solvadi and Ribavarin, I wonder if it makes sense to wait for the new treatments and see if they will be a bit less harsh to handle.  The Ribavarin scares me a bit.

What can anyone tell me about the new treatments that are going to be available?  Does it make sense to wait or move forward...the scripts have been approved and my insurance is great so the Sovaldi will only cost about $75 a month.  I have read Express Scripts is going to essentially "boycott" Solvaldi once the new treatments are available because it is so expensive.

Glad to have found a place where there are others who are or who have faced the same challenges.   
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New here with question
« Reply #1 on: May 14, 2014, 03:16:58 pm »
Hi Anna,
We will have a number of drugs coming out the end of this year, and the beginning of next. The question that you probably most need answered is, "Which one(s) will be approved for geno 3a?" There may be a couple of them, and I suggest you keep up with the latest by following the HCV Advocate Pipeline http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs.html 
Waiting for ribavirin-free makes sense, assuming your doc says you can wait, especially since these drugs are coming soon. I was treated 3 times - the last was with sofosbuvir, ledipasvir, and ribavirin, and I wan't too fond of the ribavirin.
I am not too worried about Express Scripts - Gilead can't afford to lose the insurance money, so they will strike a deal. Plus, the competition from other drug makers may change the price point. 
Good luck with your decision.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mpetrecz

  • Member
  • Posts: 50
Re: New here with question
« Reply #2 on: May 14, 2014, 03:25:53 pm »
Hi, I'm Mary.  I have 1a....and have just started the olysio and solvaldi today.  I know there are more drugs coming out, but my doctor started me on this.  I had a terrible reaction to the peg and ribo.  I'm very thrilled to be on these drugs and am surprised to see so many people on the solvaldi and ribo and or interferon,,,,,the side effects on olysio and solvaldi are supposedly easy to handle if  there are side effects at all.  I'm used to fatigue and am avoiding the sun and wear dark glasses.....hoping for no side effects and cure in 12 weeks.,
I really am wondering why so many people are on the old meds with the solvaldi.  I don't know anything about the new meds to be released...except that my doctor said they are the same as I'm on now,

Offline Mike

  • Member
  • Posts: 999
Re: New here with question
« Reply #3 on: May 14, 2014, 05:37:46 pm »
Hi Mary,

Solvadi is the game changer and the treatment results for genotype 1a with SOL+INTF+RIBV are state of the art for those who can tolerate INTF.

SOL+SI (Olysio) treatment protocol is for those who have failed previous triple tx interferon-based treatment, those who can't tolerate interferon or those with significant liver disease. Treatment outcomes are close (not quite as high) as those using SOL+INTF+RIBV. The side effects are less, however.

The real breakthrough will be when Ledipasvir and Sofosbuvir are approved in combination (Oct 2014), as the efficacy is much greater then SOL+INT+RIBV for genotype 1a.

Note the common thread of all 3 protocols: Solvaldi. The question is: What happens to those who don't experience  SVR12 with Solvaldi?

The short answer is: Nothing. There are no treatment protocols for those who fail treatment with Solvaldi (in any combination).

To answer your question as to why people are still being tx'd with old meds + SOL: SOL+INTF+RIBV is the most effective treatment on the market for genotype 1a and has a highest success rate.

Best wishes, Mike
« Last Edit: May 14, 2014, 05:41:44 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mpetrecz

  • Member
  • Posts: 50
Re: New here with question
« Reply #4 on: May 14, 2014, 05:47:01 pm »
Thanks Mike.  I was unde the impression that the solvaldi and olysio combo was the highest cure rate.  Now I know differently.  I can't go back on the peg and ribo, so it makes sense to do these two.  There was confusion in the beginning, the pharmaceutical thought I was getting the solvaldi and ledipasvir with the solvaldi.  So ledipasvir is the new drug?  I'm just so thrilled to be on the two meds I'm on,  thanks for clearing that up for me....

Offline Mike

  • Member
  • Posts: 999
Re: New here with question
« Reply #5 on: May 14, 2014, 06:03:48 pm »
Solvadi is amazing. I just finished 12 weeks of SOL+INTF+RIBV. The side effects weren't as bad as my previous treatment (I completed 48 weeks of INTF+RIBV in 2001), which were horrible.

I was  apprehensive to start INTF again because of my previous experience. But when my GI and I looked at my clinical picture, this combination gave me the greatest chance for full clearance (we looked at SOL+SIM [Olysis] x 24 weeks  but the numbers weren't as good for my clinical picture).

I figured 12 weeks was doable and started in January. I was undetectable at week 4 and week 12 (EOT). I'm now waiting for the post 12 week treatment blood work and the coveted SVR12 = cured.

I find out in early July. 

Best wishes, Mary. The Solvadi is what will make the difference and you'll be undetectable soon!

Mike
« Last Edit: May 14, 2014, 06:06:17 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mpetrecz

  • Member
  • Posts: 50
Re: New here with question
« Reply #6 on: May 14, 2014, 08:13:16 pm »
O Mike I'm so happy for you and hoping for the best news post 12 weeks.
Well sovaldi is a wonder drug for sure,.... How are you feeling , if you don't mind. I'm an equestrian that has been out of the saddle for almost 15 years, thanks to hep c.  I am hoping to be able to get my strength and endurance back and start riding again.  I am fine for 15 minutes...but then pay for 2 days.  I want to be able to ride for hours and be able to show......I have to be strong enough to do that.  That is my goal.
I realize everyone is different.....but I am just wondering.....

Offline iana5252

  • Administrator
  • Member
  • Posts: 187
Re: New here with question
« Reply #7 on: May 14, 2014, 09:40:52 pm »
The American Association for the Study of Liver Diseases (AASLD) just recently updated their recommendations based on the latest treatments now available. Here is Hep's page that breaks down the options for genotype 3...

Hepatitis C: The Basics - What treatments are available?
http://www.hepmag.com/articles/2512_18756.shtml

There will likely be even better options later this year and early in 2015 if waiting makes sense for you. Make sure you discuss with your doctor.

Offline annabanana

  • Member
  • Posts: 16
Re: New here with question
« Reply #8 on: May 15, 2014, 12:07:14 pm »
Thank you for the comments.  I have tried to research what other treatments are coming up around the bend, but the info is confusing...hard to read the pharma jargon.  My Dr. said the new treatments for GT3 that should be available in the fall may or may not be combined with Ribavarin.  I have a 10 year old and don't want to be incapacitated for 6 months because of the Ribavarin.  If that is the only choice then I will have to suck it up and do it, but waiting 5 months for a less caustic treatment may be worth the wait...

What are the new drugs that are coming available, specifically for GT3?

Thanks in advance!
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline Coach

  • Member
  • Posts: 69
Re: New here with question
« Reply #9 on: May 15, 2014, 01:43:43 pm »
I also have GT3a. And was in pretty much the same situation as you AnnaB low viral count fatty liver feeling fine... I started ribavarin and sovaldi 5 weeks ago and have been doing great on it.. Taking the riba after breakfast and dinner with tons of water. I do the sovaldi around 4 in the afternoon. After 1 week ALT went from 60-30 and is 25 now and the AST from36 to 21 and is 24 now...My Viaral count at the start was 133529 which is low. I just got back the viral at week 4 and it is ZERO. The only issue right now is my red blood cell count has dropped slightly. Will keep an eye on it with more blood work..Good Luck , I hope this helps in making your decision..

Offline Mike

  • Member
  • Posts: 999
Re: New here with question
« Reply #10 on: May 15, 2014, 04:21:07 pm »
Hi Mary,

I've been feeling great (best in years) and attribute this to clearing the virus. I have a lot more energy, clarity of thought and so forth. Heck, I'd even cowboy up and ride a horse!

My only concern is relapsing and I have to wait until to July to find out if I slayed the dragon for good (SVR12)!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mpetrecz

  • Member
  • Posts: 50
Re: New here with question
« Reply #11 on: May 16, 2014, 06:37:38 pm »
Nana banana, I raised 3 children as a single mom and I can relate.  I I didn't know I had hep c.....and it got progressively harder and harder....but I did it.  As a grand mother now, I have to say, do what will put you in the cure %.  You'll have a long life and it will be of wonderful.....I'm a believer in if fighting for what you want and need.  As you figure it out..step up.  You know I'm for you and I'm sure a lot of People in all walks of your life are too.

Mike you made me so happy.  If you feel,like you can ride, then I know my goal is in my reach.  I'm waiting with you ... You will be all cleared.....I don't want to say what my doc told me,,,,but it's good for all of us....there will be no relapse.  We are the lucky ones....

 


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