Congrats Gator!!!

Glad you still got your UNDies on! I can't wait to say the same, still waiting for results of 2 week Vl. 

Groupergetter - I too experienced the virus-letting on day one and two of tx.  I totally agree with Maddie, sides are very manageable.

Welcome Senderton.

Congrats, Gator.  May you be forever UND!   I go for 8 wk check later this week.

Welcome Senderton.  Glad you are here.  It seems most sides do level off after the first couple of weeks.  Very manageable.

Excellent news, Gator!  Once in the club, no one's allowed to leave. ;)

Welcome senderton and Groupergetter. The most significant sx that I've had from the combo without Riba is a sunburned nose this past weekend, which could be from the Olysio. I only lasted six weeks on Peg/Riba before my LFTs went through the roof. I agree senderton that Sovaldi/Olysio is a walk in the park by comparison.

My doctor called with the eight week lab results and I am still UND!. LFTs are also in the normal range. Three weeks left of medication to stomp the HCV for good!

I started Olysio and Solaldi 11 days ago and will have my first viral load taken on Friday. I see most everybody has had success with this off label combination. I am hoping to be another success. I am genotype 1a with compensated cirrhosis. I was a treatment failure on Interferon, Riba and Incivek. I failed so fast that I was taken off after only one month. I have no idea how anybody survived 48 weeks of that poison. I didn't enjoy the short time I was on it. I didn't work the entire month. The new Olysio and Solaldi combo is a walk in the park in comparison. I have had fatigue and insomnia but have been able to work almost full time.

Hi Groupergetter, welcome from me also. I'm on the same combo as you are, started 2/14 and had the same side effects, headaches and insomnia which seemed to get better after the first week. My Viral load went from 3.7 million to 244 after 7 days, I'm waiting on my week three results now. Wishing you success with all of this!

Thanks Maddie, very encouraging and exciting to read the blood results of others here.  My doc didn't prescribe the Riba for me.  Have had some headaches and insomnia but not too bad.  Hoping this fog I've been living in for years lifts, and I get my energy back.  Praying this gives SVR for me and others, and all those with HCV will have quick access.  

Welcome to the forum, Groupergetter.  Glad that you found us and that you were able to start on this protocol.  Are you on Sovaldi/Olysio with or without Riba?  These are great drugs that quickly knock down the VL.  Hopefully, they will kill off the virus permanently and we can all celebrate SVR. 

There is also a new member section if you would like to introduce yourself to all others on this forum.

Just started this treatment regimen on Monday.  As most here probably already know studies show this combination therapy very promising.  I know it sounds weird but the first day I started these meds if felt like the virus was being stopped cold.   Have had some headaches and insomnia but not too bad.  First blood work due the 17th can't wait for the results.  My ALT and AST have been high and my platelet count low.  Reading the positive posts here give great hopes for SVR.  I'll try and keep posting to share results.  Best wishes for speedy results and recovery.  Be well.

Glad that your LFT's are back to normal after all these years.  Thanks for letting us know about others' results, as well.  It seems so promising, GatorMan.  Now if we can all hold UND for 12 weeks after tx.  That would be so fantastic. 

Rybronco, I know the anticipation you must be feeling until you get the vl results.  I'm confident your's will be way down.  These meds appear to beat the vl down pretty quickly. 

Just got 2 week LFT labs back...still waiting on the VL though. ( I'm chomping at the bit for that one) I'll post it when I get it.

All LFT's Within Normal Limits....AST 18, ALT 19, Alk Phos 63, Albumin 4.6, Billirubin,direct 0.16, Billirubin, total 0.5.  I don't have the VL test back yet but this drug combo is quickly doing wonders for my poor little liver.

Waiting for my 8 week lab results which I should have on Monday. Got a copy of my 4 week result showing normal LFTs for the first time in well ... almost forever!

Talked to my Doctor about the ongoing Sovaldi/Olysio trial. He has over 40 patients currently enrolled. A few dropped out of the trial for insurance or other reasons, but not one because of sx. Also, all have become UND or had significant log reductions at 4 weeks.

Good to hear, Tornado.  Hopefully all on these meds will continue to post blood test results here.  Good luck on the 4 week draw. Have a great weekend.

I am at day 20 now, everything going well, I test at 4 weeks, fingers crossed. My sun burn is healing.

I was in Florida for a week and got a terrible sunburn on my forehead and nose. I didn't realize the sensitivity to sun exposure, so, yea, stay out of the sun.

We'll i am about to complete my 9th week on Sovaldi and Olysio tx. Results week two were vl count down to 383 from 8 million. Week four results i was undetected with liver functions within normal range. Week 8 still undetected with all liver functions in normal range. Bilirubin was 14 before tx now .09.

      Only side effects i have experienced has been red eyes but not so bad. 3 weeks left to go and then 4 weeks clearing my system of Olysio. I have been staying indoors to avoid exposure to sunlight. The times i have went out to Dr's office i have covered up like a mummy. Dont want to take chances. 3/5/2014 just started week 10. Labs next week follow up visit the 19th...will keep you all posted.

Geno type 1a Diag. July/2013 Vl ct 8 million. Started tx peg/rib/Vic...Null responder week 5...stopped tx.Started Sovaldi/Olysio without Riba Jan 1,2014 Had bad reaction to Rib/ My Fib. was stage 3 last time checked.

Rockon Tornado!

I'm right behind you at day 13 today. Labs tomorrow, will post results.

Today is day 17, no noticeable side effects to speak of. I think (just my non doctor opinion) is that the reason I am feeling better is because my viral counts are way down or hopefully undetectable and also my liver labs are improved, which with all this combines to make me feel better. I have not gotten any labs yet since I've been on the Sovaldi/Olysio. I go the 14th of march for 4 week on meds lab draw, and follow up for results 3/31/14. I am acting like my life is changing for the better. I also just returned from a weeks vacation at West Palm Beach Florida's beaches. So, that makes me feel better too. I will keep posting as time goes by.

In a word...FANTASTIC!!!! 

Thank you all!!!  My how the discussions have changed in such a short period of time.  I do hope the riba question gets answered quickly as it clearly changes the side effect profile significantly!  What is also remarkable is that these drugs are only the tip of the iceberg.

Congrats Darkstar,  nice update.  Soon to be SVR....

Rybronco,  Hang in there before you know it you will be day 28, 56 and 84.  Stay Strong and good luck.

Gator Man,  we are that close, depending on weather, I go Monday March 3rd for that 8 week draw......

Great to hear, darkstar.  That AFP drop is amazing.  My AFP was cut in half at week four, but was nowhere near as high as yours to start.

Great news darkstar with all your numbers. I haven't had "LFT's are normal" in thirty years. Week 8 draw for me is March 5.

Awesome Darkstar!!!

The numbers and vl elimination by this new all oral combination is nothing short of remarkable.  I'm thankful I have the opportunity to try them (day 9) and hopefully follow suit with everyone.  Thanks for the post. 

Week 8 draw, still undetectable, LFTs are normal, AFP has gone from 230 to 10

Rybronco wrote:

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Thanks for the insight Dragon Slayer.

Hey Mark, are you having labs drawn q week?  If so, please keep posting your numbers.  I go for labs this Thursday, I will post them when I get them. 

---

 Yes, I'm having labs drawn weekly. I go in today for end of week two, I'll post them asap.

Hep-C Dragon Slayer wrote:

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For those that are on the combo of Sovaldi and Olysio:

Be in front of your third refill.

It seems that the original order gets approved by insurance claim clerks whom are following paper guidlines submitted by the pharmacy and then the second month creates an exception guidline that can be over riden by a local management team.

The third refill goes up to a group of account reps that review medical reasons, FDA guidelines and cost overage decisions. 

This process can eat up 15 days and before you know it you are down to 4 or 5 pills left in your second 28 day cycle.

Some insurance companies have approved the 3rd refill based on doctors input, scientific results and patient blood reports.  Some (in my case Community Blue) have denied the final 28 days based on the FDA not approving the off label approach.

Stay positive in the HCV fight:    Great news,  IT WORKS and results from all of us have been outstanding from week 2 on.

I hope the rest of the combo tx bloggers do not have the insurance set back I did but do not close your eyes for a minute......

---

I couldn't agree more Dragon Slayer. After my problems with the first refill "campaign", I placed my second refill order when I still had 25 pills left from the first. CVS/Caremark at first couldn't find my prescription, told me it was in the works, couldn't be shipped out for a certain number of days, needed re-authorization and then finally was denied. The only reason I found out about the denial on February 14th was staying on hold with them for 30 minutes while they found a supervisor to consult. My doctor was notified on February 17th and I requested the refill on February 3rd, so 14 days before I was officially "notified." Got the 2nd refill Tuesday and ran out of the 1st refill today. 

Thanks for the insight Dragon Slayer.

Hey Mark, are you having labs drawn q week?  If so, please keep posting your numbers.  I go for labs this Thursday, I will post them when I get them. 

Thanks for the heads up, DragonSlayer.

For those that are on the combo of Sovaldi and Olysio:

Be in front of your third refill.

It seems that the original order gets approved by insurance claim clerks whom are following paper guidlines submitted by the pharmacy and then the second month creates an exception guidline that can be over riden by a local management team.

The third refill goes up to a group of account reps that review medical reasons, FDA guidelines and cost overage decisions. 

This process can eat up 15 days and before you know it you are down to 4 or 5 pills left in your second 28 day cycle.

Some insurance companies have approved the 3rd refill based on doctors input, scientific results and patient blood reports.  Some (in my case Community Blue) have denied the final 28 days based on the FDA not approving the off label approach.

Stay positive in the HCV fight:    Great news,  IT WORKS and results from all of us have been outstanding from week 2 on.

I hope the rest of the combo tx bloggers do not have the insurance set back I did but do not close your eyes for a minute......

Rybronco wrote:

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It is awesome to read all the posts.  I can't stay away from this forum....I access it on my ipad from work and at home.  Things are changing soooooo fast and the updates coming from Tornado, Maddie, Mark Y, Oldenshow, Pl52, and Gatorman (and others) are just abosolutely exciting to me.  Congrats Oldenshow and Mark Y on your significant VL reductions.  Look forward to hearing about everyone's reductions or eliminations.

I am on day 6 of Olysio/Sovaldi without riba and feeling pretty darn good.  Some nausea in the mornings after dosing but that's it.  It's sounds crazy, but I think my body is responding to the treatment...I have no lab results to support that as of yet, but I think I feel it.  Weird  huh.? 

 

Not really weird Rybronco, I felt about the same way. Remember, I think I'm the only one that had labs done at week one and my VL dropped from 3,700,000 to 244 in just 7 days on the same meds as you. I'm hoping it works as well for you! 

---

It is awesome to read all the posts.  I can't stay away from this forum....I access it on my ipad from work and at home.  Things are changing soooooo fast and the updates coming from Tornado, Maddie, Mark Y, Oldenshow, Pl52, and Gatorman (and others) are just abosolutely exciting to me.  Congrats Oldenshow and Mark Y on your significant VL reductions.  Look forward to hearing about everyone's reductions or eliminations.

I am on day 6 of Olysio/Sovaldi without riba and feeling pretty darn good.  Some nausea in the mornings after dosing but that's it.  It's sounds crazy, but I think my body is responding to the treatment...I have no lab results to support that as of yet, but I think I feel it.  Weird  huh.? 

all this sounds like wunnnnnnferl (lol) news. i go to doc monday. it is time for 6 month check up anyway. so how convienent if i get told i can maybe start new meds soon depending on insurance & assistance from drug co. guys i want to slay the dragon. tired of thinking about it every day of my life. i want to be free!!!!!!  Maybe it is all our time for healing.. There is a commerical out here in the state about hope for hep c. it is being looked into sooo much. bout time.. love u all, Tazkat  

null responder to riba /interferon 2002& 2005 relapsed after incivek 2012 genotype 1a

An early congratulations Mark Y. It's amazing how quickly Sovaldi/Olysio works in eliminating  VL.  I had not seen one week results with the combo, but it clearly works fast! I believe that good VL news is also in your near future Tornado! Good luck Blueyes! Based on what I've seen with forum members, I think you will be through with tx before any significant Riba side effects kick in that are more than an irritant.

Tornado wrote:

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I am at day 10 on Sovaldi/Oylsio. I am feeling pretty good. No problems. Thanks for the support from this site, and the people that post. Thanks Tim

---

 Just wanted to check in and share my results to help everybody else keep the faith. I started the Sovaldi/Olysio  on Feb 14th and went in for my first labs 1 week later on Feb 21st. I got my results back today and my viral Load went from 3,700,000 to 244 in one week! I go back in on Feb 28th for week 2 labs. I will post those results as soon as I have them. I'm wishing everybody here success!  

I am at day 10 on Sovaldi/Oylsio. I am feeling pretty good. No problems. Thanks for the support from this site, and the people that post. Thanks Tim

OldenSlow, congrats on the 4 wk results.  Great news.  Probably be UND in a few days if not already.  As you said, the number that really counts is EOT 12 weeks.  We're all hoping for UND for that one.  

Blueyes, glad you got the new meds.  Good luck! 

A 4 week VL @ 62 is great OldenSlow, close to a 5 log reduction. The demon stomper is doing it's job. Who would have thought a couple of years ago that we would be seeing these numbers just by taking 2 pills a day for 28 days.

We are at the UND Club door awaiting your arrival!

Will be starting my tx. tomorrow.

400 mg. Sovaldi/150mg. Olysio/1200 mg. Riba./12 wks.

Sounds like we are the next generation of pioneers to recieve all oral tx.

I feel lucky and grateful to become one of this group.

 A little concerned about the Riba sx.

   Will keep posting , Hopefully all goes well.

Dan

Update:  My 4 wk VL came back @ 62.  Not UND, but I'll take it.  Given how well entrenched my cirrhosis is, I knew it would be a dogfight.  It's week 12 and beyond that counts, anyway.

Thanks GatorMan, Rybronco, OldenSlow,pl52 and Tornado.  I am so grateful and hope that we all reach SVR real soon.

great to hear, I am at day 10, I can't imagine how thrilled I would be to have UND at 4 wks. I am happy for you.

Thanks Wayne!  That's really good to hear.   It's such a daunting experience to navigate your way around all of these things and I for one am so damn grateful to have you guys providing your experience to us who are new here.  I had to look up "specialty pharmacy"...now I know what it means..Will keep you posted on what happens from here.  Thanks again!

If your insurance carrier has put you through to OptumRx, you should be in pretty good shape.  They are the specialty pharmacy providing the meds for me.  So far, so good.  My copay for all three of same meds has been $59/mo.  I will be ordering the third month's supply soon and will find out if there's going to be any denial of payment problems.

I will say that, although my doc's office went through setting me up with the coupons initially, for some reason Optum didn't have the Olysio information when I ordered the first refill.  I had to call Olysio to verify that I was in their system and call Optum back with the appropriate numbers, etc.  No idea what that was about.  They have been easy to deal with via phone, as was Olysio, so no further complaints.  I wouldn't be surprised if this all happens for you quicker than you expect.

Regards and good luck :)

wayne

Congrats Maddie on the 4 weeks results!  Way to go!  Thanks for the info and link.  I'll check it out now.  Gator Man, I read what you went through and I hope that is resolved for you.  I can't imagine the stress of being denied a "refill".  I would have been out of my mind!  Well, what happened this morning is my husband called his insurance, and asked if the medications are covered.  They said yes, gave us a number for Optimum RX and said the dr. has to request it.  So I passed the info on to the doctor's assistant and we'll see what's the next order of business.

Started Sovaldi/Olysion this past Friday without riba.  Now day 4 and doing well, mild nausea and occassional mild headache only.   This is a stark contrast to the last tx which included inf and riba. So nice ( no not nice...freaking awesome!!!) to hear the responses related to reducing this virus to UND levels from Tornado, Maddie, Pierre, and others!!! I am anxious to follow suit. 

Crossing my fingers and saying prayers that I can also respond to this therapy.  I can't help but think about swallowing the equivalent of my mortgage payment each morning. I thought I would have to fight my insurance company for this off-label regimen, however, they approved it right away.  I do however, have a nurse practitioner that is spot-on and can navigate the denials and appeals processes like an expert.

Great news maddie and pierre. Looks like everyone is lining up to get into the UND Club (you'll be there shortly pierre). The more, the merrier!

If you can get a specialty pharmacy handling the meds pl1952, you should be in good shape. As I posted elsewhere, my problems started when a big chain took over my prescriptions after initially being filled by a local specialty pharmacy. I hopefully have that resolved for my final month since they are supposed to ship today after their refill denial ten days ago. Fortunately, I still have a few days lefts of meds. The moral of the story, start early on refills!

Just got my 4 week on tx blood results...UND!!!   So went from 1.9M @baseline, to 70 @2wks, to UND @4wks.  I am so happy and relieved that I am responding to these meds.

pl1952, I didn't have to get approval of the meds myself.  My doctor and his staff and Specialty Pharmacy worked with my insurance company to get it done so I don't have any further tips for you.  However, in this link to a conversation about the meds, TIG gave some links on how to get assistance with the cost.  http://hepcfriends.activeboard.com/t56144514/treatment-cost-and-insurance-companies/  Many on this site have tons of info, so I'm sure they will be able to help with more tips.

I'm excited that my husband is going to start treatment of Sovaldi/Olysio/Riba.  Was told it will take about 4 weeks to get everything, paperwork, calls to insurance companies, etc., done. 

I'm reading that Sovaldi/Olysio is "off label".  Am I going to have a fight on my hands with insurance?  Here's what my husband has been told what to do:

Monday, February 24th call your insurance and see whether or not they would be willing to cover the following medications:
Medication 1: Olysio (the other name for it is Simeprevir)
Medication 2: Sovaldi (the other name for it is Sofosbuvir)
We'll also start you on ribavirin, but that is a rather old medication, so that shouldn't be a problem with your health insurance.

Any suggestions, tips, advice that might be helpful?  Thanks in advance..

pierre wrote:

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Heard from my hepatologist yesterday re results of bloodwork after two weeks of S/O treatment: VL down from 2 million to 25! Wow! now of course hope in another month it will be UND & will stay that way! But only, as they say, time will tell... (Will keep you informed) Meanwhile I have a very positive "side-effect" psychologically & physically feeling energized & ready to boogie... 

---

 Wow, this is great news Pierre, congratulations! I'm on day 9 of the Sovaldi/Olysio and went for my 1st labs yesterday so I will have that report in a few days. I came down with a bad cold the beginning of the week so I'm not sure if I have any side affects or how I feel from the meds. Good luck to you!