Sovaldi Olysio -- Geno 2

[Verdugo]

It's been a while since I've been here!  Like many others I've been waiting for meds to improve before treating.  Looks like that day has arrived.  Going to discuss my options with my doctor on the 21st.  

Has anyone on this forum been approved to treat with either Sovaldi or Olysio in the following circumstances:

Never treated
Genotype 2

Hoping this won't be a fight for me with the doctor and insurance.  Interested in hearing your experience.

Cheers and thanks.

[Livelife777]

Congratulations.        It's awesome don't you think.    Just knowing the virus is gone really changes your outlook.   Very happy for you.     How are you doing on the side effects?     Have learned a few tricks that might help.     Always take your meds with foods that have a lot of fat.    Helps with nausea.     Eat 5-6Xs a day as the meds mess with your glucose (sugars) which keeps you from feeling as tho you have low blood sugar.    Low blood sugar makes you feel fatigue, dizzy, spaced out, and overall crummy.   Hydrate .  Take naps, try to reduce stress and take walks to improve mental well being.   Wish someone had mentioned these before starting the meds.   Well I have 10 days to go and then I'm done.     Yesssss.    Had blood drawn today and the hmg actually went up to 10.9.   That's a relief.   Still UND.    Time does fly so hang in there.        Kim

[Smmyers]

I'm on day 30 and just got back my HCV RNA quantity test, not detected!

[Livelife777]

Labs today and hmg is at 10.5.      Docs aren't to worried so onward we go.  Virus UND so that's the key.     Let us k ow how your labs come out.    Kim

[Livelife777]

Going in for blood work tomorrow and seeing my doc after.     Always get the results the same day.       Will let you know how it goes as I'm bordering on anemia.     Done on April 7th so can't wait.        How have you been feeling on it?      Any sides?     Mine kinda come and go but very minimal to sometimes bothersome.    Try to stay busy and that helps.      Will keep you posted.         Kim

[Smmyers]

I would be curious to know your test results Kim, I'm going in March 18th for my first tests.

[Livelife777]

Hi there.    Hope your doing well with your treatment.     Have more blood work next week so will let you know how it goes.    Try to stay involved since distraction has made the time go by quickly.     Make sure to hydrate LOTS as that helps with side effects.....Kim

[Smmyers]

Thanks Kim for your words of encouragement!!!

[Livelife777]

Hi there.       Same treatment and going into week 7.      Piece of cake so far.     You should have few side effects.      I have had a little fatigue mostly but that seems to have settled down.     Watch you Hmg as that tends to go low with the Ribv and they will draw blood every few weeks to keep an eye out.    Mine is 11 right now and believe after 4 weeks tends to even out.    Congrats on starting the meds and try not to worry about the sides.         Kim

[Smmyers]

I am starting treatment today, never been treated ether. I'm GT 2b, viral load 69 million, 20yrs with virus.  Just took 3 200mg of ribivarin and will take my first 400mg Sovaldi and end the night with 3 more ribivarin for day 1.   God bless!!!

[Livelife777]

Mayo called today.      2 weeks since treatment.      Geno 2.     Virus gone!!!!!

[Aussielee]

Good luck with your tx.

[Aussielee]

I know a some people that are geno 1, from another group I belong to that, with varying degrees of liver dameage that have been approved for Sovali & Olysio off label that are doing 12 weeks tx. Guess it's up to your doctor & insurance company. Can hurt to ask.

[Livelife777]

I am also geno type 2 never treated.     Go to Mayo clinic.     Their protocol for type 2 is sovaldi/ ribavirin.         Take it for only 12 weeks.     Been on it 2 and not to bad.    Hope you have good insurance.     The sovaldi alone cost 90 grand for the 12 weeks.      Really ***** if not covered.     Cure rate 90% and higher.       Guess insurance comp. are coughing up the money instead of paying for transplant.       K

[somuchmore2]

Thank you.

Sorry about long delay in saying that.

Hope all is going well for you and best wishes to you.

[Verdugo]

Thanks for your reply.

Just got back from the hepatologist's and it looks like I can start anytime I want.  I will have to get insurance approval but my doctor seemed optomistic.  

So for those of you wondering if you can treat with Sovaldi (G2, never treated), the answer appears to be yes.

BTW, he also mentioned that the Pharma's quoted cure rate is often 5-10% inflated in clinical trials.  Still a very good rate for G2s.

V.

[HectorSF]

With a platelet count in the 60s only your hepatologist who knows the extent of your cirrhosis and any other health issues can determine what treatment may be appropriate for you.

Since we are still in the interferon world for G1s adverse events including blood level issues while treating need to be monitored and managed.

The options are difficult for G1 cirrhotics because some can have serious issues treating with peg-interferon. So treatment should be determined by the hepatologist who is caring for the patient and knows all relevant medical information about the patient.

The new Gilead treatment with Sovaldi has the best rates of cure for cirrhotics compared to previous treatments but then there is the issue of the peg-interferon and ribavirin and their side effects that will be there for the 12 weeks of treatment. Since you already have low platelet and HGB that can be a show stopper.

To do nothing and wait a year for interferon and ribavirin free treatment is a risky  bet. Having cirrhosis increase the likelihood of developing (HCC) liver cancer as you wait. And the is always the possibility of decompensating. Which all makes the hepatologist evaluation of the stage of your cirrhosis critical.

Personally I would try the treatment if you are healthy enough to. You can always stop if the side effects become to difficult.

Other options are:

1. Find a interferon free trial

2. Have insurance pay for Olysio and Sovadi and find a hepatologist that will manage this off-label treatment.

3. Could try Sovaldi and Ribavirin if you can find a doctor to treat you for 24 or 48 weeks. The odds of cure are about 61% from a study I was in. In the worse case you are cured but your liver will get a break from the hep C destroying more of your liver. For me that "break" allowed me not to decompensate and complete all 6 of my cancer treatments before transplant last year.

Talk to your hepatologist and find out if and what treatment would be of benefit to you.

Best of luck!
I hope this helps.
Hector





Please refer to your hepatologist at your transplant center.

Hector

[somuchmore2]

Oops!

1a
TT
failed ribra 2
relapsed telpivar
plalets 60's
hgb wbc etc low
59 years old
compensating

[somuchmore2]

Where do you think folks like me stand with new medicine?

I perceive holding pattern until late 2014.

Your thoughts?

[HectorSF]

Yes the day has arrived for genotype 2 patients. I would think any knowledgeable doctor would suggest treating for 12 weeks with Gilead's Sovaldi and ribavirin treatment. The cure rate is 97% in patients that haven't treated before according to trial data. It doesn't get any better currently. A virtual cure! You have the best genotype for current treatments.

This treatment is the first all oral treatment for hepatitis C with greatly reduced side effects compared to all other treatments that require the taking of peg-interferon. No more injections and all of the resulting side effects!

Olysio is only for genotype 1 patients and treatment is for 24 or 48 weeks.

For you the choice is easy.

You will soon be hepatitis C free!
Hector