Anyone try the 12 week Sovaldi treatment?

[andyhawaii123]

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

[andyhawaii123]

You hit the nail on the head on that one.

Stopping Drinking (removing the primary cause of the liver disease) allows a lot of Alcoholics to improve dramatically from the unpleasant symptoms of Cirrhosis (going into remission). Of course it's never gone, there is no cure for the fibrosis thus far. But the symptoms may go away if sober for years.

This, unfortunately, is a double edge sword. While Sobriety may have taken away the symptoms and secondary conditions, The Alcoholic Mind will spring into action as it sees the opportunity. To many alcoholics, this means "Well, now that I'm OK, I can drink again".

The disease of alcoholism, as AA puts it, is "Cunning, Baffling and Powerful. Without help it is too much for us" The Disease of Alcoholism, being "Of Body AND Mind" erases from memory the Near Death condition of times past in favor of grandiose  ideas of how much fun and good times drinking gave. And while fully aware they have cirrhosis, they drink. Twenty years ago a Doctor would have just scratched his head and gave up. Alcohol is probably one of the worst Addictions.

One of the greatest lessons AA preaches is to never forget you last drink. It day has to be remembered every day, because as you say "There's no pill for it."

Sarah, I thank you for your understanding and compassion to a condition which baffles many. It is very kind hearted of you. Maybe these words, along with helping me, may find someone else needing the same understanding. For the young it is a very difficult concept. Again, as AA says "It's simple, but not easy.

God bless you on this day of our lord. I will put you in my prayers, hoping for you and everyone a Happy, Healthy New Year!

Andy

[Sarah1949]

I've heard a few people talk about how once they quit drinking that they were able to get back to being healthy in time. This in spite of having Hep C. I think alcohol is so much worse than Hep C, but then that is just my own experience and stories I've heard from others. Plus, alcoholism may be the more difficult of the two to defeat since there are no pills to cure one of it. So, I admire you greatly for being able to quit and congratulate you on your near one-year of sobriety.

Merry Christmas to you also Andy!

[andyhawaii123]

Thank you for the good wishes.

I am End Stage Cirrhotic, to a very severe extent, having had the TIPs procedure to by-pass a large portion of  portal vein blood flow around my liver, as the scar tissue fibrosis simply wouldn't let normal blood flow thru (Very Severe Portal Hypertension).

However, my cirrhosis is caused by Alcohol Abuse, not the HepC. (of course I don't drink any more - 1 yr. sobriety will be on 1-13-15) Thru all of the Hospital stays, six surgeries, 5 months in a Skilled Nursing Facility, my body has always fought and kept in check my HepC 1A. My Viral Count is extremely low; currently only 15,700, almost undetected. That's why they are doing 12 weeks, but as I said my insurance approved six months if need be.

I asked my Doctors why it never went full blown when I was so sick and weak earlier this year, and their answer was "Don't question miracles Andrew". Now that I have gone from decompensating to compensating, and the new drugs are available, my doctor's want to eradicate the HepC, so it doesn't pop up and kill me or (there biggest concern at this point) bring on Liver Cancer. (Since my insurance already paid $765,000 in medical bills this year, I guess another $95,000. didn't surprise them...lol) Actually, it seems Medi-Care will pay for Harvoni for anyone with End Stage (Cirrhotic) Liver Disease. Sign up now though, because that could change,

I wish everyone a Merry, Merry Christmas on this day of the Lord.

Andy

[AugustineMama]

Hey Andy it is a cakewalk. My third time around. I too have cirrhosis and am connected to a transplant center. They are thinking if I can rid myself of the virus I may be able to avoid transplant which is the goal. I became UND during week #6 and was still UND at EOT week #4; my EOT week #8 is fast approaching and I hope it stays the same and I am SVR? In any event, If not I will jump right back in and do anything to rid myself of the virus. I think Harvonia is going to work for you. Let's all beat HepC in 2015.

[Sarah1949]

That is so encouraging Andyhawaii123.
I'm happy for you.

The only thing I wonder about is if you have cirrhosis shouldn't it be for 24 weeks?

[andyhawaii123]

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.

[keepingOnkeepingOn]

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'

[Dbzc2]

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

[Dbzc2]

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

[Ranmann]

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

[aritzr]

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 .

[andyhawaii123]

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

[Sarah1949]

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.

[keepingOnkeepingOn]

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.

[AugustineMama]

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.

[AugustineMama]

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

[andyhawaii123]

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

[andyhawaii123]

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

[keepingOnkeepingOn]

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.

[keepingOnkeepingOn]

You CAN get it like that but it' not prevelant. It must be blood to blood.

[keepingOnkeepingOn]

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.

[andyhawaii123]

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

[AugustineMama]

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.

[andyhawaii123]

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