Thanks ,

I guess I don't know as much as I thought I did about this.

I just hope people don't have to take a harsh treatment because someone says they're healthy enough to handle it, be it age, liver condition etc..who are they to say? Just having the illness and all its problems is enough to deal with.

Dz, like most things, there are never simple answers.  Having been infected almost 40 years ago, I had non A non B hepatitis.  About 20 years ago we learned about hepatitis C.  By the late 90s Ifn/ribavirin.  Side effects sucked, but my LFTs normalized, bought time.  The key is clearing virus, the only good virus is a dead virus.  Triple therapy is not easy, for me after LFTs rose, it was a chance at clearing virus, yeh, almost killed me, couldn't move, had to quit.  I actually think that it would have worked if I could have tolerated it.  Olysio and Sovaldi are very recent, who wouldn't prefer them, I was negative by week 2 and after 11 weeks, minimal side effects, normal LFTs, etc.  Of course that is great.  In the meantime, cirrhosis, low platelets etc.  I would have gone through hell to clear virus earlier but we deal with the hand we were dealt.

Can I just ask out of my own ignorance, why do some have to take these terrible treatments when others are available that seem nearly harmless yet every bit or more successful. Is it because you had already been in the course of therapy so you just complete it? It seems I see many on their multiple failed treatments yet they still get put on another try with the same harsh drugs. Is it a cost thing with ins..or are things evolving so fast, that it's where a person falls into the R&D loop of the latest thing....I was deemed untreatable at diagnosis 2 yrs ago, until I heard about in Dec. the Cosmos trial or study....whatever, and that was when I went to my liver team and lobbied my opinions and what i knew, and said why not me? That was Jan 10th and I was prescribed the off label tx of sov/Olysio . Finally got it and started 3/5 after to denials. I'm cirrhotic and on the list so I've never had tx options, but I say even if I wasn't, why wouldn't everyone be given the best available med with the least sx ? as it sounds like many of you are suffering much worse than I am and I don't understand that. Like I said in the start of my post I apologize if I am ignorant about some of these things and I almost feel guilty that so many are suffering thru what I know all to well about ......except the transplant yet anyway. Peace to all.

jimbob -   Gotcha. I was wondering the same myself. Robert's not the first I've noticed being treated using a variation on the guidelines. Off-off-label, if you will. I suspect it to be physician/insurance-dependent.

Robert -   Wanted to welcome you to the forum, as well. Playing golf every day, are you noticing any sun/heat sensitivity with the Olysio? I've noticed it myself and was just curious. Hoping you continue to do well and can golf for 84 days in a row. ;)

wayne

Thanks Wayne.

I was actually aware of that but didn'see anywhere that Bigguy was INF intolerant. So, just thought I'd ask. 

jimbob

New member of group. Started Solvaldi/Olysio March 15th. 2014. so far, no problems, played 18 holes of golf today.

My Blue cross medicare drug plan paid most and Walgreens helped me fing a group to pay my copay.

I was infected in 2007 at the VA hospital in Miami during a colonoscopy.

Dr. Eugene Schiff and Dr. Lenox Jeffers of University of Miami are my great doctors.

Geno 1A

71 yr old male, treatment naive, Fibroscan  F5.6

Update: Now day four of off-label treatment and I have played golf every day with no side effects. Se

jimbob wrote:

---

I am curious. I see that you are 1a and was wondering how you got the Sovaldi/Olysio combo. I asked my docs about that tx, but they wouldn't try as they stated insurance guidelines required INF and RIB w/ the Sol.

---

jimbob -   Just wanted to point out that the Sovaldi/Olysio combo, w/ or w/out Riba, is available for the Interferon ineligible according to current guidelines.

http://www.hcvguidelines.org/sites/default/files/full_report.pdf     --  See section #26

Pierre said-"after 2 weeks (down from 2 million to 25!)"

Wow Pierre, that is so amazing.  I better pinch myself again to make sure I'm not just dreaming.   This really does seem too good to be true... Breakfast, 2 pills, sunblock...the end.

-Ev

"

Hi Ev,

I was lucky & got my doctors to prescribe a VL test when I wanted to during the 2 years I knew I had HCV & before tx started. Today is my 1/2 way point on Sovaldi/Olysio & I'm seeing my doctor for tests including a VL test. I had one after 2 weeks (down from 2 million to 25!), & when he suggested I come back after a month & didn't even think of asking to have another test done after another 2 weeks. I do think that the drs feel very positive about the treatment & as I was not very anxious, but rather pleased & optimistic after the first one, waiting for a full month & thus save some money made sense. I'll post my results as soon as I'll get them, the day after tomorrow most likely.

Avanti!

Pierre

Fixed that auto correct- 

Hi ev,

I had no idea the VL test was that expensive....I think I've only had 2 of those done to date, I guess I'm spoiled or just lucky to be able to have such good ins.( it's an expensive ins. plan though) that I have never even seen a bill, and man o man there has been a lot of tests and procedures in the past 2 +yrs, but I don't ask for any appts. or other tests then are absolutely needed, as I have been amazed at what they can to a person in the name of patient care, and every action does have a reaction....so for me less is more.

I also agree that more needs to be done to get med costs down, so it does not bankrupt people who just want to get well and be productive.

Groupergetter- They just don't feel our pain with all that waiting, do they.  It can be nerve wracking for sure.  About all you can do is try to stay distracted.  I know our Dr.'s office is super busy with so many starting TX right now.  His nurse seems overwhelmed by it.

Dzdayscomin-  Our nurse said that they were only planning to do the extra labs for the first round of people and later would plan to cut it back since everyone will become non-detectable and it only will matter if it is retained afterwards.  They decided this because most of the patients they are using it on right  now are a nervous bunch of people that have already been through TX failure and it would benefit them psychologically to see it working.  The cost of it all is astonishing though, and I would rather see some unnecessary corners if it meant that more could be treated.

-Ev

I found it interesting when they started me on the off label solvadi/Olysio when I asked if they were going to do a baseline VL test and they said no, I asked why and was told because everyone so far taking this tx has cleared it! 

That sure is encouraging.

It's a pretty large group of people too....from my understanding.

D

evangelin wrote:

---

Thank you Oldenslow. 

I am being blown away by Joe  feeling noticeably better after 1 week.  It feels unreal...like a really good dream.     We had a new baby and 12 yr. old when we found out Joe was sick and started on Interferon...It was a nightmare.   I am letting it soak in that there is really a reason for hope now.

Love your Hokey Pokey Clinic.

Best wishes for success,

Ev

 

Evangelin,  keep up the hope.  These seem to be some of the miracle meds folks have been waiting for.  Many here like Joe (me included) have been through many months of agonizing treatment only to relapse  Happy for both of you.    I know how much this means.  I pray he will find SVR. 

A bit put off by my docs.  I had my first blood work done Monday and specifically asked they put results on their portal where I could access the info.  They called today and left me a vm saying the results were in...go figure??? 

I know it sounds weird but day 1 at 3:30 I started on this combo.  When I went to bed that evening I could feel the virus being cut off.  The headaches are beginning to subside, but still have insomnia.  Make sure Joe stays out of the sun or is covered when going out.  I got burned this weekend and isn't pleasant.  We are truly fortunate to be starting on this regimen.  Give Joe our regards. Hoping you have a joyous new life together.

---

Thank you Oldenslow. 

I am being blown away by Joe  feeling noticeably better after 1 week.  It feels unreal...like a really good dream.     We had a new baby and 12 yr. old when we found out Joe was sick and started on Interferon...It was a nightmare.   I am letting it soak in that there is really a reason for hope now.

Love your Hokey Pokey Clinic.

Best wishes for success,

Ev

Hi evangelin and welcome to the forum. Thanks for posting! Sorry to hear of your husband's treatment history. Sadly, it's not an uncommon story. Personally, I wouldn't worry much about the baseline viral load. It bounces all over the place and doesn't mean much until one gets on treatment. I would focus instead on the excellent chance that his VL will disappear in a relatively short period of time using the new meds. Most of those reporting results are showing undetectable virus in as little as 2-4 weeks. They are also reporting very minimal side effects using the Sovaldi/Olysio regimen. Like you and Joe, I find myself most grateful for the opportunity. Wishing you the best.. ;)

wayne 

Hi Robert,

Welcome to the Forum, and it's good to see another 'old guy' on treatment. With such a short history and a good Fibroscan score, you should do very well.

Glad to hear you can still play golf while on Rx. I couldn't play during my 48 weeks of hell. My handicap went from 9 to 14, but is now back to 8, 13 months after finishing the drugs. SVR is great, as I am hitting the ball further than I did 10 years ago. All the best.

New member of group. Started Solvaldi/Olysio March 15th. 2014. so far, no problems, played 18 holes of golf today.

My Blue cross medicare drug plan paid most and Walgreens helped me fing a group to pay my copay.

I was infected in 2007 at the VA hospital in Miami during a colonoscopy.

Dr. Eugene Schiff and Dr. Lenox Jeffers of University of Miami are my great doctors.

Geno 1A

71 yr old male, treatment naive, Fibroscan  F5.6

I've been following everyone here on Olysio Sovaldi and decided it was time to introduce myself. 

My husband (Joe) has been fighting this for 10 years.  He is a geno 1b and has 4 failed TX behind him.  The one before this was with Victrelis.  Previosly, he failed to respond with high dose peg-intron & Riba (Ideal trial, Infergen & Riba, tried to outlast virus with Pegasys, Riba, and adjuvant Alinia and stayed on it for 65 weeks...never even became non-detectable .   He actually did respond on Victrelis but relapsed and liver was worse than when he began.  Now, that is the sordid history and the only thing I should add is that Joe already had early cirrhosis 10 yrs ago when he was diagnosed with HCV, so his liver has been badly beat on for a long time. 

Joe started Olysio/Sov. (no Riba for geno 1b) last Monday on the 10th.  He has not really had any SX worth mentioning which is hard to fathom.  We just received his baseline viral load and I was quite surprised that it was only 513,000 IU/ML.  This is much lower than expected.  Once, the Dr. (Liver transplant Dr. so he says the bad ones) told me that in some cases, the viral load goes way down when the liver is too far gone to sustain the virus well.  I might not be getting that exactly right, but it was something close to that.  I hope that isn't the reason for the lower viral load.  I want to believe instead that this is a good thing that has happened instead.  Not having to take Riba again was also a good thing.  Joe, like many of you, is overdue for something to work in his favor.

We are very thankful for another opportunity for victory. 

I am overjoyed to see some of you ex-non-responders feel like winners, finally.

(((Hugs to you all.)))  This is all quite exciting!

Ev

Thanks for the encouragement and refill suggestions!  Ya'll sound so positive, even though navigating through the fog of unknown results!  I get antsy just waiting for my copy of all blood tests, and I have a few.  GatorMan, Tig and Oldenslow, thanks for cheering me on!

I am at day 29. I had my 4 week blood draw yesterday. I see the doctor 3/31/14 for results. I am feeling great; no complaints. I probably will call for my results next week, just because I can't wait till the 31. But maybe it's best to wait and have the doctor tell me. I am still scared that the meds won;t work. I am trying to believe. 

Rybronco wrote:

---

Darkstar,

Keep it coming!!!  Great news!!

Maddie- Can't wait to see the UND for you as well.

 

Rockon!!

---

 Thanks, RYbronco.  Hope we all reach UND @ EOT 12 weeks.  What a great gift that would be.

Like all things related to insurance it is a bizarre process.  I don't completely understand what happened with my approval.  But my insurance company listed 3 refills and I just went with the flow.  I actually have all of the medicine in hand so I am set.  Absolutely agree with ordering each month early.  This months pills cam with a day to spare even though I had ordered two weeks before.  I ordered my last meds as soon as the month before arrived and now I am set.

In regards to the steroid cream, it makes no sense for the two drug combination.

I have been in the sun and was careful because of the warnings.  But no problem on my end.

Hi Anna,

Certainly good news on the approval and copay. It's hard to believe that two pills a day can cost ~$28k for 4 weeks retail, and you only end up paying $30 with insurance and copay assistance. Wayne is absolutely correct about lining up the refills as soon as allowed. My refill stress was nothing compared to Dragon Slayer, but at least by starting early, we had time to solve the problem before running out of meds.

As far as the HC cream, all I can say is that I don't itch anywhere that I didn't prior to starting treatment (no Riba), so I think Tig is correct. Olysio may increase the potential for sunburns, but prevention, e.g. suntan lotion or avoidance, is probably the best answer.

I hope that UND and SVR are in your lexicon in the near future!

Mark,

  I am Highmark Community Blue in Western PA. 

According to my doctors office the other day, they Community Blue have declined the last three off label treatments that my gastro practice has submitted to them.  The declined reason was treatment not approved by FDA.

One of the two may get approved based on the fact that they are not a Interferon candidiate (that was my situation as well).

However,  I have heard that the regular Highmark coverage and the local UPMC are still approving the off label tx.  I have no real facts on HighMark and UPMC just heard this. 

Hep-C Dragon Slayer wrote:

---

Congrats Darkstar,  Stay Strong. 

Tig,  

First congrats to you as well. Reaching SVR after that long haul.....  FANTASTIC !!!

The cost breakout for my treatment was:

Olysio     $22098.88

Sovaldi    $27970.06

Riba        $1143.61

Insurance paid Sovaldi and Riba for all three months, only paid two months of Olysio. 

I paid $6500 out of my pocket for my final 28 days of Olysio.  This was after some help from the pharmacy and the drug company. 

I may have been able to get addition financial help from some coupons but because the decision was down to my last three pills of the second 28 day cycle, I did not have enough time to fight that battle.

I am in week 10 of tx and still UND.  No major sx to mention, just same little ones we have all been having.

My Hemaglobin problems from week 5, 6 and 7  (dropped to 8) was handled well by the reduced Riba from 1200 a day to 900 a day.

Back to normal numbers last CBC.

 

---

 Do you mind me asking which insurance you have that declined to pay the 3rd month? I have Anthem Blue Cross and heard they have declined or made the 3rd month supply hard to obtain. Thanks. 

Congrats on the approval and copay news, Anna. If I may suggest something...  contact the pharmacy providing yours meds, find out the earliest possible order date for your 2nd month's supply and order them on that day. Do the same thing with month #3. You will create a little cushion for yourself should there be shipping delays for one reason or another. Best of luck with your treatment. ;)

wayne

Hi Anna,

The reason they included the HC cream is likely due to it's standard inclusion in many treatment "packets" that do include Ribavirin. Ribavirin causes rashes and skin irritations in many patients. My pharmacy used to include small single use packets with my Riba with every shipment. Your treatment drugs shouldn't cause any of those issues, particularly the rectal problems caused by Incivek. Good luck with your upcoming treatment!

Tig

Recd. solvaldi and olysio today.  Will start on 3/26 for 12 weeks.  No Riba.  However, why would they include a tube of Max Strength Hydrocortisone cream?  Scary, after reading posts about rectal problems, on other topic boards! For possible sunburn, maybe?

Best Part:  it took my doctor 2 days to get approval for tx and my copay is $30/month for both.  The Universe is generous with me, thankfully.  I am so encouraged by all the previous posts here.  Thx to all for taking time to post good stuff!  (and, thx to UHC for quick approval)

I'm excited reading the fantastic results from you guys!  My husband was approved for sovaldi/olysio/riba for a 12 week period.  It took about 5 weeks for final approval.  Meds will be coming Tuesday.  My doctor said I'll be able to wait till the end of this year for even "newer" treatment.  I'm so hopeful and congrats to everyone reaching SVR and UND...Can't wait for us to say that too!

Congrats Darkstar,  Stay Strong. 

Tig,  

First congrats to you as well. Reaching SVR after that long haul.....  FANTASTIC !!!

The cost breakout for my treatment was:

Insurance paid Sovaldi and Riba for all three months, only paid two months of Olysio. 

I paid $6500 out of my pocket for my final 28 days of Olysio.  This was after some help from the pharmacy and the drug company. 

I may have been able to get addition financial help from some coupons but because the decision was down to my last three pills of the second 28 day cycle, I did not have enough time to fight that battle.

I am in week 10 of tx and still UND.  No major sx to mention, just same little ones we have all been having.

My Hemaglobin problems from week 5, 6 and 7  (dropped to 8) was handled well by the reduced Riba from 1200 a day to 900 a day.

Back to normal numbers last CBC.

darkstar wrote:

---

I would like to tell you that there is a clear rationale, there isn't.  Cosmos did 12 weeks and there are not comparisons with 16 weeks.  Given the lack of side effects, we simply decided to add a buffer.

---

 Congrats as well, darkstar. I've lobbied the doc for an extra 4 weeks, but am doubting approval. Should find out the first week in April.

Darkstar,

I'd like to add my congratulations too. I'm surprised you were able to get an additional 4 weeks approved for your current off label treatment as well. That's an additional $28,000 worth of Sovaldi alone! I haven't seen what the price breakdown on Olysio is yet, but it can't be cheap. It's amazing that some people can't get approved at all, some get denials after treatment has begun and others experience no difficulty whatsoever. We need to see some uniformity and equal access to these drugs and to treatment in general. Good luck!

Tig

Darkstar,

Keep it coming!!!  Great news!!

Maddie- Can't wait to see the UND for you as well.

Rockon!!

I guess it makes sense to be UND as long as possible to eradicate this monster.   And as long as you are able to get approval for the meds, why not, right?  I was only approved for 12 weeks so that will be it for me. 

Maddie,

I would like to tell you that there is a clear rationale, there isn't.  Cosmos did 12 weeks and there are not comparisons with 16 weeks.  Given the lack of side effects, we simply decided to add a buffer.

Sweet indeed! Congratulations darkstar! 

What rationale did doc give for additional 4 weeks?  Don't mean to pry but just wondering. 

I'm just glad you are still UND.   

Had my 8 wk. bloods drawn today. Now the wait for results.

Long discussion, planning 16 weeks, so 6 to go.

Such great news, Darkstar.  So glad you continue to be UND.  You must be near end of tx soon.   Very happy for you.

Maddie

Just got my 10 week labs back.  HCV undetectable, AST/ALT normal!!  How sweet it is :)

Get home from work and see Rybronco posting GREAT results.  Fantastic.  Time to kick this stuff to the curb.   Hoping my platelets get a boost, every time I hit my arms above the wrist I get bruising.  Those taking this combo are really fortunate.  I emailed my doc and PA to let them know how much I appreciate  helping me to get on this regimen.  SVR all the way baby.

I see that everyone is feeling better even prior to getting UND confirmed. No question that the new medications are so much better at improving quality of life during tx versus 48 weeks of misery with inf/riba. It's really good to feel good!

Congratulations Rybronco, pierre and Tornado, lets keep the good lab results along with feeling better a permanent thing!

Wow! Tornado -- great. I'm finishing my fifth week of tx today. Already posted the good results after 2 weeks earlier -- my dr. didn't schedule a 4-week check, but wants me back after 1 month, i.e. week 6 of the treatment -- will get & post new results next week. So for the first 5 weeks, no side-effects to speak of (though a tooth that had been loose for some time finally called it splitsville -- weirdly enough my wife checked some teeth charts & it is the tooth associated with the liver). My sleep patterns aren't any worse but not any better either since starting tx, though I seem to have better appetite -- for food, but also for work, etc. General energy is higher, probably a psychological result from the sesne of seeing light at the end of the tunnel -- hopefully.

Rybronco,  Great results!!!  These meds are so amazing. 

I am at day 24, feeling great. No noticeable side effects. I test this Friday (4 week draw). My fingers are crossed, but I am feeling confident. My urine has not been dark since starching these meds. I have had hep c since I was 15 years old, 40 years. I've started to think what life will be like when I am free of hep C. I think I am getting a taste of it now, but after I am off meds completely and the meds clear my body, I think it will be like a new lease on life. I'll have the energy to do things I avoided. I am just sitting here dreaming. 

Great news, my friend!  UND soon for you, I'm sure.  Amazing stuff, isn't it?

Just got VL results: Baseline 2-20-14 prior to tx was 7.8 mm, as of 3-6-14 vl is 80. All LFT's and blood counts are normal

Sov/Oly is knocking it down hard.  I won't kid you, I was praying for UND at 2 weeks. Looks like I will have to wait for the 4 week draw for that.

Feeling good and no sides this week.

Rockon!

REALLY happy for you Gatorman, hoping my blood work is similar to yours.  Check your pm. 

Rybronco, senderton, Mark Y, and all with this nasty virus hope this crap gets behind us.  This combo and others coming this year appear to be really effective with not nearly the side effects.  At least people don't have to suffer terribly for long periods only to fail treatment.  Good luck to all, hoping for SVR.

For those already doing an interferon/riba and other combo(s) hang tough.  I know how hard this can be.  I did this for long months only to relapse.  Second time around damn near killed me, and I was younger then.  Keep the faith, and never give up hope.  Just a matter of time, for all of us.