Aa
A
A
A
Close
Hepatitis C Community
13.4k Members
10805050 tn?1420935520

Anyone try the 12 week Sovaldi treatment?

Has anyone had experience with the new 12 week drugs? Specifically  Sovaldi and Olysio? I saw my Hepatologist at the UCSD Liver Center today and he stated since my liver is now under control and compensating he wants to address my Hep C 1a.  Somehow when I went through 7 months in hospital and Skilled nursing facility from major Cirrhosis problems cause by Portal Hypertension, my Hep C never attacked.  My viral load is extremely low at 15,283. I have never had treatment for it and my liver seems to be fighting it, the Dr. says.  Of course it could pop it's nasty face at me at any given moment, so I am definitely interested in treatment.  Apparently UCSD School of Microbiological Medicine  had some tie to the testing of the new drugs and my Doctor wants to start me on a treatment plan starting in Dec. or Jan.  I know the Zovaldi costs $1,000. per pill ($84,000 for the 12 weeks), but it's a lot cheaper than a transplant.  He said if my insurance companies gripe too much the UCSD Medical School may be able to kick in some funds.  I just wondered if anyone out there has done it, and What I could expect...Cure, Side-Affects, Insurance issues etc.  Any help will be greatly appreciated.  As always I wish everyone the Best.
Andy
29 Responses
683231 tn?1467323017
Hi Andy

Many of us here were treated with Sovaldi and Olysio which is off label usage not per the prescribing instructions for either medicine and can make it a little harder to be approved. Many here also treated with Sovaldi Ribavirin and interferon which is per the prescribing information for Sovaldi. Many were cured of hep c. Some relapsed. Some had side effects many did not.

I treated with Sovaldi Olysio. Unfortunately I was one who relapsed post treatment probably due to my somewhat advanced liver disease as I was diagnosed with cirrhosis in 2008 after having hep c for most likely 30 years. The more damage you have the harder to treat.

Has your doctor mentioned Harvoni? It was just approved on 10/10 for treatment of genotype 1 cirrhosis. It is one pill a day and for treatment naive patients your treatment could be as short as 8 weeks.

Look around the site and read some posts I am sure you will learn a lot that way.

A link was started about what treatment people did and their results an unscientific survey but still interesting here is the link to that post

http://www.medhelp.org/posts/Hepatitis-C/SVR--or-Relapse/show/2281769

Good luck
Lynn

683231 tn?1467323017
I just reread your post I didn't realize you have cirrhosis. Your liver is under attack from hep c that is why you have cirrhosis it was caused by hep c which has been attacking your liver every day and will continue to do so until you get rid of the virus.

It is very important you treat and get rid of hep c if you can as soon as you can. Cirrhosis is a serious medical condition which causes an increased risk of liver cancer, or liver decompensation also called end stage liver disease (ESLD) requiring a life saving liver transplant.

I would defiantly look at Harvoni. Since you have cirrhosis you would be prescribed 24 weeks because as I mentioned people with cirrhosis are more difficult to treat.

Best of luck
Lynn
10805050 tn?1420935520
Harvoni, is among several drugs they are considering for my treatment of Hep C.

  I suffer from Multifactorial Cirrhosis of the Liver primarily caused by Acute Alcohol Abuse combined with chronic Anemia due to malnutrition. Basically I was drinking like a fish and never Eating.  That's why so many secondary conditions hit me so fast (2 massive esophageal bleeds, 1 Lower GI Bleed, uncontrolled Portal Hypertension requiring a TIPS procedure, Acites, Hepatic Encephalopathy, Alcoholic Disorder with Pancytopenia and Bone Marrow Suppression, 2 Acute Respiratory Failures, Pneumonia, Alcoholic Pancreatitis... the list goes on.)

While all this was going on my liver somehow was able to keep the Hepatitis C virus at bay with extremely low Viral counts(15,283). I do understand that the stand alone term "Hepatitis" applies to anything that causes inflammation of the liver.  Now that I'm out of the woods of suddenly dyeing  at any moment, they are going to treat my Hep. C (This all happened since Jan of this year.)  My concern all along has been that I would improve my Alcoholic Cirrhosis only to be hit hard by the Hep.C virus.  That fact was never overlooked.  They just had to prioritize my treatment, many decisions being life or death.
  
These new drugs are quite exciting, and god sent.  They are currently working on oxidation antagonists that they hope one day will reverse the scar tissue fibrosis of many forms of cirrhosis.  Things look very promising.  I just wonder what my insurance company thinks? Hopefully they take into account a transplant runs about $600,000. I'm so glad to hear from you and you have positive results! Thank you, and I wish you and yours the Best.

Andy
Avatar universal
I would do it Andy! Im avyoung mother who has young dauhters and may be pregnant again. I just started in a hospital and wasnt warned about a hep c patient properly and timely enough. I found a sharp mark on me after my shift and am scared. People likexme would be grateful. p.s. it was my first day on the jib! :( God Bless Andy
Avatar universal
I am presently treating with Sovaldi and Olysio and was the virus was undetected at 4 weeks. I am now in my 7th week and unlike many people on these drugs have had serious fatigue but I am also 67 years old and have cirrhosis. The advantage for me in the S/O is that I don't have to take Ribavirin or Interferon. I refuse to treat with either of those drugs.

You are very fortunate to have such good support from your doctor.
10805050 tn?1420935520
I'm with you on that one,any side effects for 3-6month s beats the old 18 months of  interferon injections in the gut. 2 of my friends did that. It cured them bbut knocked them out. They both compared it to Kemo. Thanks for your input, i wish you the best. Andy
Avatar universal
I just finished the 12-week combo and am Undet at this point. It was a cake walk compared to the others. I can honestly say I did not have any symptoms.
10805050 tn?1420935520
Hi Mama, I'm so glad to hear the treatment worked for you.  I have heard, and researched the drugs and have seen nothing but good results.  If I may ask, did your insurance give you any problems? I have Medicare / MediCal coverage in San Diego, and I know my doctor had to go to bat for me to get the Xifaxan.  That $1800/month is nothing compared to the cost of these new drugs (and they were all Fast-track to the Market). I assume all I can do is wait for my Doctors to determine the best treatment course for me and then worry about the insurance coverage. I'd hate to have to fork over retirement funds, but if that's the deal, so be it.  Again, Thank you for your help and concern. I wish you continued success and all the best.
Andy
Avatar universal
I'd jump for the opportunity. Waiting is dangerous. Your symptoms make you eligible. The only other thing they require is over 6MM viral load but hey, if you can get the drugs do it. What's a brief dull headache or fatigue when the symptoms of varices, bleed-outs, portal hypertension, cirrhosis, anemia and no hope are worse than any treatment sides from new drugs. In my last 3 weeks of S/O there was no fatigue. I'm good to go. I urge you to go for it. Turning that down would be foolish. Your doc knows S/O cures people. 95% success rate.
I'm glad I went on the S/O marathon of hope train.
With all your damage I would not wait. "Slow moving" virus? That can be debated. At some point it speeds up and it's all downhill from there.
It's been a long tedious road but I'm feeling much better than I have in several years. I had to decide to wait or to jump on the S/O treatment in the middle of summer. I jumped on it. At some point there is no time to wait.
You can't believe how just the virus alone is making us all so sick. We tend to blame symptoms on the liver damage. Once this damned dirty parasite left my body I realized how sick it alone causes us.
Harvoni is iffy so far. There isn't enough of info about actual cures.  S/O has had many cures. Seize the moment.
My 2 cents
The next best thing comes out in January by AbbVie. We are all getting cured one way or another. AbbVie is now taking over. I know the Pharmacists for AbbVie. 2015 is going to a good year for heppers.
You'll have to stop drinking while on treatment. Someone here says it's like pouring gasoline on a fire. That's a good way to put it.
Good luck.
Good luck.
Avatar universal
You CAN get it like that but it' not prevelant. It must be blood to blood.
Avatar universal
So when he writes your script and paperwork for Ins approval, you'll have to have all the tests first. All in all it takes up to 2 months to complete the tests and script and all. So don't panic if there seems to be a delay. It's part of the process. Harvoni and Abbvie may be the same. It's all a process until you actually get the meds delivered to your door. From there out your on your way to board the marathon of hope train and killing this parasite.
10805050 tn?1420935520
Hi,

Thanks for all the input and good hope.  My Hepatologist is a Transplant Surgeon at UCSD Liver Center and quite a man. I trust his judgment impeccably. I moved to San Diego from Honolulu to be in his care.

And, as you said, the even newer drugs  are ready to hatch as they have all been given Fast-track statues with the FDA.  UCSD's Hepatology Dept. is holding a symposium in the next few weeks specifically to have round table discussions with other Liver Center Heads and the various Manufactures of the Drugs with everyone weighing in on the new Drugs.  (I'd love to be a fly on that wall).

That was the only reason my Doctor is waiting till December or possibly January.  He wanted to make sure the best available options were considered before starting me on a regime. I feel confident I can roll the dice another month or two.  And should problems arise, the Doc would immediately shift gears.  He brought me back from the dead twice so far and I am very comfortable with his choices.  He got me from a MELD of 24 down to 7, and from decompensating to compensating.

I'm more afraid of the insurance companies...lol...lol...

Thanks again for all the positive insight everyone has provided. Please keep me abreast of any new developments you all may find out there on the web.  I trust my doctor, but I certainly do my homework as well.  

I wish everyone the best.

Andy
10805050 tn?1420935520
PS. Haven't had a drink since Jan 13th ,2014.  The day a Mallory-Weis Tear  opened in my esophagus and I Bled out.  That was the first symptom related to alcohol I ever had.  It literally scared the hell out of me. I bled so hard they had to transfuse me in the ambulance, then I died on the endoscopy table and thank god they managed to get me back.  Then I clung to life by a thread for months...That day marked enough of the booze for me.  They say you have to hit a bottom....I had no idea my bottom was so deep..

Andy
Avatar universal
No. Mayo Clinic ordered it thru their transplant center and the declined and by the next day they overturned it. I had the pills in hand within 1 week
Avatar universal
It is all in the hands of the offices. They know how to get it when regular GI docs don't. I have Humana Medicare thru employer, and I paid $50 a month.
Avatar universal
I've had many of those bleed-outs but not from drinking. It's from liver, spleen and portal hypertension. My esophagus is scarred from all the banding. It's EZ to die during a bleed-out if you don't get to the hospital in time. Jan 13 you'll have 1 year of sobriety if you stay off the alcohol.
Avatar universal
Just want to let you know that I also have Medicare (Original) and the same as Medical - it's called Extra Help here in Oregon and in many other states. What took a long time for me to gain approval was not insurance but rather my doctor's office. I was denied the first time because they needed another test but was approved upon appeal. Medicare and Extra Help paid for the entire cost for me.

Also, what amazes me is that since starting the Sovaldi and Olysio is my labs. Not only am I undetected but I also have perfect labs. Nothing is high. Nothing is low. Everything is normal. And I have had cirrhosis now for at least a couple of years.

I am not an optimistic person by nature but I'm afraid I do have high hopes. We shall see.
10805050 tn?1420935520
Thanks Sarah, I understand their are evaluations and hoops, but you're right, my doctor has an NP and 2 RNs in his office, and one of the RNs does nothing but insurnce and benefits management to make sure everything from transplants to medications is handled properly. The problem with MediCal is they have a new review system for all prescriptions over a certain threshold, and I unfortunately don't think the state employees overseeing it have a clue. My fear was they would pay for interferon and not the new ones. I am lucky and still have the old Medicare A B & D, and they pay their share for anything without question.  When I posted the question I honestly thought I would hear nothing but coverage nightmares. It seems to be the exact opposite, with companies deeming it a preventive and necessary cost. That is such a relief to me. You have no idea how scared I was they would have a cure right in front of me and I was unable to buy it.Thanks everyone.. I will sleep easier (even though in a reversed pattern...lol..) - I wish everyone the best. Andy
11107696 tn?1415361497
my lady just finished her treatment of Sovaldi and ribivrin for 12 weeks and did not miss 1 day of work she said she felt like she had the flew a couple of times but was not really bad. she has some chirossis and it worked for her so far she has one more apt in dec and if all go's well she is cured.she was not even grumpy (er than other days). although its expencive it seems worth it .
Avatar universal
I am in week 6 of S&O and on 11/7/14 my tests showed target not
detected. In 4 weeks my enzyme levels dropped from 150 to 30.
I believe I've had Hep C for 30 years and have cirrohosis, I had a
yearly physical and found out I am positive. I had all the tests and then my
GI sent me to what he said was the best hospital in the state. It took me 2 months to get in but they had me on the meds in 2 weeks. 12 weeks free
meds thru the manufacturer. I went from very low to UDT.Plus all my labs are normal, I could not believe it. If insurance won't cover the meds find
a doctor or clinic that will, the worst side effect for me has been being
tired all the time, but its worth it. Good Luck, Randy
9662954 tn?1405606159
I did S&O for 12 weeks and I no longer have the virus. I do have cirrhosis issues that came on fast and hard about six months prior to doing this treatment. My only wish is that I had not put my doc off for three months because I was so mad about the cost. In the end, it only cost me $90!

However, damages prior to, I guess priceless. Really. If I were you I would do it before your cirrhosis symptoms get worse.

Sincerely,
Debe
9662954 tn?1405606159
I forgot to mention side effects. Eat when you take the pills an you'll avoid nausea. The worst of any od the potential side effects peak at week 6 and then it is what it is.  Fatigue and a wired tired feeling were the other two. I did feel a bit spacey, but that might have been HE? I'm not sure. After I stopped the meds I felt much more active and since have been trying to get used to the cirrhosis meds.  So no virus and hopefully normal once I get my diet and meds re the cirrhosis settled down.

Best wishes, Debe
Avatar universal
Just back from docs and labs. Got word about some success numbers with S/O. Can't say the amount though it's big. My calculations have it at a 98% success rate from their office. That's heartening. Not everyone fails to reach SVR with S/O. I got the number and not from some article on the web. Prior mitigating factors for UD and SVR are key. Just sayin'
10805050 tn?1420935520
UPDATE:
My doctor prescribed HARVONI for 12 weeks, and my insurance covered all prescriptions for the drug written thru June 2015. They didn't even bat an eyelash...approved upon UCSD's first request.  Yeeeeh Ha !!!!   Going to start the treatment after the New Year! One more major step on the road to remission of End Stage Liver Disease. That you Lord.
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.