Hep C Discussion Forum

falcon · Newbie

RE: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?

Marypetrecz · Senior Member

David, my dad was a car guy. He restored a 1934 ford convertible with a rumble seat.....sold it and bought a 1962 corvette...with a rag top and hard top. He died in that car,...the guy behind him said he slumped forward, drifted to the side of the road and was gone.....wind in his hair, sun on his face....in a car that he loved...we still have the car...but it's on blocks...someday one of the kids will get it and it'll be bqck on the road....but for now...it's safe and out of sight. Enjoy your cars....when ever dad stopped to get coffee he had a slew of guys drooling over it....he enjoyed the social ness of owning a car like that. Low tech, high torque......blammo.....it's an old corvette!

Marypetrecz · Senior Member

I totally agree David. I however opted for a slow down.....we bought a samll farm, I have my horses....a few are crippled nd very old....some are rideable and show quality...I rode show hunters..in all there are 6 that I care for, I had left my home and am further from my family than I like. I was private. Now that I'm almost officially cured...I am wanting my life back. I want to show horses and be around my old friends and family....I want to go out to dinners, and go to movies...I'm glad I did it this way.....I ate better....clean water abounds..lots of physical exercise....rescued animals...cared for my mother during her last yrs...but was away from the invitations....and the hustle of my old life...

now, I want to go back....well be selling the farm and moving into a smaller house that requires no maintence....no more farming...the horses are being put together and re homed..the older ones will be officially retired to retirement farms near our new home. Nd the show quality horses will be my show horses...and I will compete agian. I will re-connect with my dear friends and family...I will live my life as fully as possible. Hep for me was terrible.....it slowed me down....it took my life away.....it stole my energy and joy. everything had become a chore and I was struggling to have normalicy......I don't know how being "cured" will feel.....I'm finding joy and desire agian.....so I'm hoping for a happy ending, thanks to the miracle meds and my wonderful team from Hershey.

.

skewedButNotBroken · Senior Member

David

Your story is similar to mine. In 1992, I found out I had hep c but I kept on partying until 1999. Then I started to feel poisoned after a typical night of partying. I went to the doctor and my ALT/AST were high and the doc wanted to test me for hep c. I already knew I had it, but I went along and had the test anyway. The doc told me that I would probably be dead in 10 or so years if I didn't change my way of life. So, I abruptly stopped all of the bad behavior, I changed my diet, I started exercising, I became obsessed with natural cures. I tried the various Lloyd Wright protocols--some of which did normalize my ALT/AST levels but I felt miserable all of the time. I tried ultra-violet irradiation treatments, Chinese acupuncture/pressure, massive doses of vitamin c, you name it and I probably tried it. Nothing worked. I have continued to live a healthy life style, but this disease has been getting progressively worse despite my best efforts to contain it. I have felt sick and miserable 99.9% of time since 1999. I have always hated and despised this miserable disease and just knowing that there is a cure out there waiting for me brings such hope.

I will admit, however, that I would have probably crashed and burned without having been afflicted with this disease, and I too have grown up so-to-speak during my battle with this disease, BUT now I am ready to slay this dragon before it slays me.

My new doctor (Dr. Paul Martin) is in the process of trying to get me approved for the S/O protocol so now it's hurry up and wait...

David F · Member

I just want to share with you all how I handled this disease and how it changed my lifeWhen I first found out I was positive for the anti body's I was sure that I had cleared the disease (1999) as I was always a very healthy person and always felt I was special and would never die. I worked very hard and did not take enough time to enjoy life.That was meant for some time in the future.After I found out that the virus was active in my body I was more let down by my perceptions of myself than the disease itself. After a period of morning I got back on the horse and did everything I could do to keep the sword of Damocles from dropping. I took milk thistle daily and many other eastern and African old remedies . But most of all I did not drink. I made friends with my disease and made friends with myself.I know it sounds crazy but this reality check changed my life for the better.I was measured in my embrace of this knew found freedom but was convinced that the future was now.I took vacations,I used to just get payed for them and go to work.I lived more,I loved more,I bought an old Corvette and drove to Florida just for the heck of it.I'm on my forth one now and don't regret a thing.I take the time to listen to what people have to say and have become more selfless.So has this disease changed me ? Yes , for the better.And as I stand on the doorstep of divorce from my little friends that have shared my body with me for at least 35 years I bid them sweet ado as I have learned how to live.And in doing that I have learned how to die.Fulfilled.

Marypetrecz · Senior Member

David, my feelings also. I felt euphoric,,,,,,wonderful. I'm down to 2 days of meds.....I've been knocked down at this point,,,,,just tired and achey,....I feel like the meds have turned on me,,,,but that's fine. Im almost done,..mental clarity is sky high....and my vision is better. So I know I'll be great again. I'm getting my life back, I cleared at four weeks and feel cured. If I relapse, I'll be surprised.....but I also know that if I do....I'll get other meds. We are all fighting this dragon and we all will win. Do I hear a woot woo? You bet I do!!!!

skewedButNotBroken · Senior Member

David F. wrote

As my health returned it was as if new life was being poured into me. Such feelings of well-being. My vision and hearing are sharp and my reflexes are fast and controlled. My hand no longer shakes when I write.

--This sounds like sweet poetry to me. It is sooooooooooooooooo encouraging to hear words like this!

-- Edited by skewedButNotBroken on Sunday 3rd of August 2014 01:06:40 PM

David F · Member

Rob, Thanks much for the reply. I will keep you all posted on my progress. I knew these drugs were working after the first few days of treatment. I had adapted to being ill for so long that it became my normal and just stayed happy and pushed my body everyday. As my health returned it was as if new life was being poured into me. Such feelings of well-being. My vision and hearing are sharp and my reflexes are fast and controlled. My hand no longer shakes when I write. This disease must do more to the body than just the liver.

-- Edited by David F on Saturday 2nd of August 2014 11:25:47 PM

-- Edited by David F on Saturday 2nd of August 2014 11:41:29 PM

Fireman Rob · Senior Member

Hi David,

Nice LFT's! That's impressive for 4 weeks. What were they before tx? A brief narrative in your signature line is great to see exactly what your situation was/is if you feel comfortable?

Thanks for sharing such great news as there are a few of us on this same, wonderful tx. Let's cross our fingers for SVR!

-Rob

David F · Member

54 yr.old male. So thankful my Doctor got me approved for Sovaldi and Olysio only. Started treatment on June 27 '14. First labs at 4 weeks. Alt 17 Ast 20 and , are ya ready , undetectable . Viral load close to 8 million before treatment. So happy. Absolutely no side effects unless you call , well it's hard to explain, I feel so vital, so mentally clear. I feel like a teenager again. I'm not SVR yet but have every confidence I will be. Was worried about sun sensitivity but had no problems at all in the Caribbean for a week. Want to thank all of the brilliant researchers and scientists who brought this salvation to us. If you have a Doctor who wants to put you on Rib. and interferon with these drugs find another Doctor. 1a.

Huey · Guru

Fireman Rob wrote:
Isis,
Yeah, it was so wierd. Once I started drinking a couple of cups of coffee in the morning for a couple of days or even every other day, I felt so much better! I was missing it anyway and owe some good advice to Gator Man as his doc that was involved with the cosmos trials for S/O encouraged coffee during and after tx.
I have elected to stay on my Dr's VL test schedule which is one VL test at EOT and a second at 12 weeks after tx. That second test is going to be a stressor! So I don't currently know if I'm UND or not but it doesn't seem to really matter when UND occurs during tx.
My ALT/AST have both dropped to around 30 as of my four week labs so I'm sure this is working. I'll be posting when I finish these meds on September 1. Thanks for looking out!
-Rob

My Mother Lived on coffie, I would be beckoned to bring it to her soon as she got up , She didn't care if it was cold , she just won'ted it Black , Sgrong and NOw.

Fireman Rob · Senior Member

Isis,

Yeah, it was so wierd. Once I started drinking a couple of cups of coffee in the morning for a couple of days or even every other day, I felt so much better! I was missing it anyway and owe some good advice to Gator Man as his doc that was involved with the cosmos trials for S/O encouraged coffee during and after tx.

I have elected to stay on my Dr's VL test schedule which is one VL test at EOT and a second at 12 weeks after tx. That second test is going to be a stressor! So I don't currently know if I'm UND or not but it doesn't seem to really matter when UND occurs during tx.

My ALT/AST have both dropped to around 30 as of my four week labs so I'm sure this is working. I'll be posting when I finish these meds on September 1. Thanks for looking out!

-Rob

Isiscat2011 · Guru

Hi Rob:

That's an interesting note about drinking coffee. I have read before that coffee helps not only during tx but also with HepC in general. I don't know the science behind that though. We will have to ask Malcolm about this. lol

I'm glad you are feeling better. I've been wondering how you are doing. Thanks for catching us up.

Hi Finbar: I also read that the rash/skin side effects tend to be worst in the first 4 weeks. That is what the Olysio drug manufacturer told the FDA at the Oct. 2013 approval hearing, anyway. They advise to stay clear away from sun during the entire tx. Wear sunscreen, hats, etc.

Fireman Rob · Senior Member

Good to hear Barry and hopefully it stays that way. I have four weeks left and it started out a little rough for me. I experiencing a few sfx initially but they were tolerable. I started drinking black coffee about six weeks into tx and my sfx almost disappeared instantly. I can't really explain why this happened? Overall, I still have sore joints, especially in my knees so report back if you have any of that. This is a great tx IMHO and I'm sure much more tolerable than Peg/Riba so enjoy the ride. The past couple of weeks have been great as I have been working long hours and almost feel normal again.

I will echo what has already been said about staying well hydrated. If you don't, you will likely experience a nasty headache. I drink between two and three liters of water a day And this has helped tremendously. Keep us posted and good luck with your tx!

-Rob

Dzdayscomin · Senior Member

Finbar wrote:
Started my S /O on July 30th and no side effects so far. lets hope it stays that way

Drink lots of water and you will reduce the chance for headaches, and be careful in the sun, you will burn fast even if you are not prone to burn. plus I hear you can get a rash though I've never had it.

Take note of something now since you just started....do you have any joint or muscle pain? or arthritis type symptoms?

Then please let us all know at the EOT if you experience any of these sx after tx...

Also to you others that had enough foresight to think about that prior to starting tx... do you suffer now or at least have discomfort? The cure is worth it, but I just want to know from more people as they start this combo

Finbar · Member

Started my S /O on July 30th and no side effects so far. lets hope it stays that way

Audreyanna · Veteran Member

Such good points! They act like they're afraid to prescribe them since they have that hard core reputation. Especially anything without acetometephen. There were all kinds of people trying to stop FDA from approving a stronger pain drug for burn patients. They approved it but can you imagine letting burn victims suffer in excruciating pain because someone might abuse it? I think it's crazy!

i know my muscles are atrophying some from just trying to sit and be comfortable, forget about working out in any form!

i will ask for something to use on a regular basis. Thanks for your insight.

Dzdayscomin · Senior Member

I just hope others have the courage to ask their Dr. and put aside the stigmas that go along with using these drugs because it can really help a person actually be healthier, because the activity increases appetite, and in turn better nutrition results in better physical body health, as opposed to being sedentary and having atrophy destroy the body.

Isiscat2011 · Guru

Hi Duane:

I understand and agree completely that nobody should have to live in pain. No explanation needed for me; it is between you and your doctor. I'm just happy it helps.

Dzdayscomin · Senior Member

Audrey and Cat , it is an opiate, oxycodone 5 mg immediate release, and I was afraid too....but I was told that when these meds are used for pain and not recreation they are very effective, and those people that truly need relief do not suffer the same addictive responses.

So far this appears to be true, if there is one addictive feature it would be the loss of feeling like doing anything that requires any level of physical activity when I don't take it, and not some sort of high.

I'll admit there is a very short term euphoric feeling when a person first takes this med. but that goes away after using it overtime to the point where now I don't even notice it.

Look I'm looking at a future that will most likely require a transplant at some point...when that will be is unknown, because at the MELD level I'm at it could take years and then again it could be a sudden downturn and be more emergent, but either way I suffer until that day comes, and even with that transplant, it does not mean all the damage done is suddenly reversed and ill be pain free.

The point is I shouldn't have to live what life I have in pain, and any good Dr. will understand that if you speak truthfully and honestly about what your going thru.

Cat you bring up a very valid point about build up of the drug due to poor metabolization, which is why we went this route as opposed to an extended release type of the same medication.

I hope that explains it well enough but each person has to make there own choices.

Audreyanna · Veteran Member

Its funny but I HAVE actually put my lawn chair in my living room. It was just in the way too much and its old too so looked ridiculous! Ive switched couches and chairs but nothing was better. I use pillows strategically and dont watch as much tv as I like, which is good. Hard to be on the computer long either. Use my ipad more than brand new iMac. :(

Isiscat2011 · Guru

Audreyanna wrote:
wow, Isiscat. I think I might feel claustrophobic in it, although it does look comfy if you don't plan on getting up often! thanks.

I was just joking around. Wouldn't expect you to put that monstrosity in your home. Not sure of its comfort either! smile

Isiscat2011 · Guru

Duane:

Nothing is perfect but the solution you worked out with the new doc sounds very good to me. You can't be active if you are in too much pain and activity helps so much with everything from pain to digestion.

There is a huge stigma about narcotic pain relievers. Some people abuse them but most do not and they can make a huge difference in quality of life and ultimately in long term outcomes. As to liver damage, as long as the dosages are kept to a minimum, your liver should be able to process it just fine. It is usually not the narcotic but other things in the pills that can cause the biggest problems, e.g. acetaminophen. Not all contain those other things, however. The big issue is toxicity because they can build up in your system since the liver isn't doing its job as effectively.

I am really pleased that you met up with this doc and this sounds like a great long term as well as short term plan.

Audreyanna · Veteran Member

So Duane, what kind of pain pill is it that have no withdrawal? I'm very interested. The ones i have make me feel great - normal and ambitious but since they're opiates I'm afraid of them. I did try Lyrica which was great except I was so hungry - no, starving - all the time! I can't gain more weight as I need to lose at least 20 already. I was really disappointed because they worked so well.

Audreyanna · Veteran Member

wow, Isiscat. I think I might feel claustrophobic in it, although it does look comfy if you don't plan on getting up often! thanks.

Dzdayscomin · Senior Member

Audrey, early on I was referred to palliative care, and there they were to work with me to improve my quality of life, well I kinda didn't like that much after the 1 month stint with Effexor for anxiety etc... so I quit going and those types of meds. and changed my PCP to a doctor that specializes in adults with chronic health issues, and this was the best thing I ever did!!! we talked about all my health problems, that most likely are all caused by the ESLD and ( Cirrhosis ) and talked about pain and what made me feel better.

So we talked about different meds and stigmas I had about using them and so forth, and we came up with a plan that provides me pain meds. and I take them daily they are small dose immediate release pills that after taking it for a while provides great short term relief without the buzzy feeling, and it allows me to do things I have no chance of doing otherwise and it has completely changed my situation from one of not wanting to do things to having true ambition to be more active.

With that said there is a price to pay for this, as it only masks the pain, so the day after lots of activity ( working in the yard) etc..you can feel pretty rough and sore, but I just continue the med cycle and what I'm finding out is the increased activity is rebuilding my muscle mass so although the arthritis is still a problem the muscle pain is less. my last BMI was 26 which is pretty good for a sick old guy.

I have been doing this for 8 months now, and I can stop taking it for a week with no withdrawal symptoms, but I don't like to, because the other pains can be debilitating, and my doctor agrees that if this works and I am responsible in the use, and it improves my QOL, then the benefits outweigh the risks...Although I feel it has very little effect in my abilities to drive etc...I don't do that until at least 8 hrs after the last dose to be sure I'm safe. I also signed on Controlled substance contract with my PCP so that he is the only one that can prescribe narcotic medications, and to only one pharmacy this prevents the abusive side some people have to pill shop

This may not work for everyone but in my situation it is the perfect solution to go on when there are so many things that are wrong.

Duane

Isiscat2011 · Guru

Look, it is Audrey relaxing in the perfect chair. How would this look in your living room?

http://dreamchairs.net/wp-content/uploads/2013/11/zero-gravity-massage-chair-reviews.jpg

Isiscat2011 · Guru

Ahhh...the search for the perfect chair. The older I get the more I am willing to sacrifice things like interior design for comfort. Not entirely, but I'm definitely more flexible on the issue. I'd be tempted to give that perfect lawn chair a place inside the house. Maybe not front and center but in some comfy spot. Or you could make the lawn chair the focal point and call the room "Outdoor Chic." lol As they say "You can't change the wind but you can adjust the sails."

Have you ever tried zero gravity chairs? Most of them look a bit tacky but I've never known anyone who didn't find them comfortable. And, you can fold them up and put them away! Architectural Digest won't be beating down your door to take photos of your magnificent taste but that's the price we pay for comfort.

Audreyanna · Veteran Member

Oh yes, Duane. I am in pain most of the time! Shoulders, neck, hips. It's horrible! Especially when I get a headache too! Plus we aren't supposed to take ibuprofen which helps the most. I've had it most my life but it's getting worse. But I think I've had hep c since my early 20s so.....I do get pain pills but try not to take them much unless it's really bad as I figure they're bad on the liver too. Probably not as bad as OTC pills though. What do you think about that?

ive had pain epidurals (until they noticed my platelets were low and I could have been paralyzed!) and go to physical therapy and chiropractor at least once, usually twice a week.

it does seem worse since the treatment, but maybe it's just because I'm older. Also, I used to sit outside in a firm lawnchair and watch tv before the meds and sun/mosquito itching issues, and I can't seem to find an indoor chair that is firm like a lawn chair so that could be why too. It hurts so much more when I sit in my lazyboy or any number of chairs I have bought and swapped in the years. Within 5 minutes I feel the pain, starting from hips and works it's way up! The search for the perfect chair has always been an issue and joke.

It's been a week off treatment today so I think I'll sit outside and see if I feel better! I honestly don't know if it's the meds or the sitting circumstances causing more pain. I feel for you. Hope it gets better. Oh, when I get cramps, I guzzle water and they go away.

Dzdayscomin · Senior Member

Audreyanna wrote:
good news!! My end of treatment labs came back non detected!! woo hoo!!

That is awesome! As far as testing I have 5 more weeks to wait for 8/26 which will be my EOT + 12 weeks to see if I made it! to the SVR club !

I also have just slightly elevate AST and ALT and very low platelets, but everything else in the testing is good considering my level of cirrhosis, meaning they are not all normal but they are steady and although out of range there is some consistency.

Joint pain, cramps and nerve pain continue to be my biggest problems, activity helps while your active but you really pay for it after...if this is what people with arthritis feel like each day that's a huge drag on a persons psychological well being.

Audrey you and I have somewhat similar situations..... are you noticing an increase in what feels like arthritis or joint pain different than before the S/O tx ? I tend to think it's more the liver damage than the tx, but with so many others reporting these aches and pains I'm wondering if there may be something to this??

Duane

pierre · Member

Take heart Groupergetter you'll slay the dragon on the next round. There will be new & even better treatments soon, & my sense is that the prices will (have to) come down so that insurance will pay. Hang in there!

It was 12 weeks post-tx for me yesterday will go & get tests done early next week only, as I am traveling in the south of France right now. In fact, wont be back in the US until September, so will do them here & send results to my NY doc.

I had tests done at end of tx, then after 4 and after 8 weeks (on doctor's orders, though I did insist, as he was willing to wait 12 weeks after the test at end of tx I suggested that psychologically it was better & useful to do the tests & that good results would improve chances of maintaining UND.) Still UND after those 8 weeks, so feel confident enough, but now eager to get these final ones done. Will do the set here in France at my own cost (though that means less than 100 bucks here...).

Pierre

Isiscat2011 · Guru

Groupergetter wrote:
When you reach the 4 week mark UND the odds for SVR really increase.
No worries, about asking me anything. Just very frustrating to relapse. Hoping I get another opportunity. Not sure if my insurance will cover it. Be well.

Hi Groupergetter:

I wouldn't worry about being denied on the basis that the drugs failed. There is no evidence that Sovaldi cannot be effectively used a second time. So, you should be in the same position as any other patient in this respect. An exception would be if your policy had an annual maximum that it will pay but most policies do not.

The big coverage question will be whether F-3s/F-4s are treated first and the answer may depend on the specific payer (Insurance/Medicaid/Medicare). A second question is when Interferon will be entirely abandoned and I'm hoping the answer to that is very soon.

I am absolutely certain you will get another opportunity with all oral DAAs.

Groupergetter · Guru

I think it's a matter of what the doc orders, and what the insurance will pay for. There appears to be a move towards less testing to keep costs down. While we all want to eliminate the uncertainty, in the end it won't affect the result....only how soon we know it. Hope all on, and nearing EOT reach SVR.

Audreyanna · Veteran Member

Thanks Dee Dee. Guess I'll have to find out for sure.

Dee Dee · Senior Member

Audreyanna wrote:

Sorry to keep posting today but I was under the impression I don't get blood work again until 12 weeks after end of treatment. it is still every 4 Weeks I assume? And the next one (4 weeks after EOT) is when my odds for svr really are good because it's without the meds, I guess? Makes sense. Ooh so nervous.

My doc didn't suggest sooner than 12 weeks , but I've seen many test at 4, 8 and 12 weeks!

Audreyanna · Veteran Member

Sorry to keep posting today but I was under the impression I don't get blood work again until 12 weeks after end of treatment. it is still every 4 Weeks I assume? And the next one (4 weeks after EOT) is when my odds for svr really are good because it's without the meds, I guess? Makes sense. Ooh so nervous.

Dee Dee · Senior Member

Hi! I finished treatment on June 13th and did the viral load test and came back undetected as well. I called my doc the other day and asked when I should come in to be tested he said 3 months from the end of treatment. Guess he's waiting til the last possible date to test. It'll be a long wait .. Ugh. Anyway .. Just wanted to say that most of my aches and pains have stopped. Maybe a little left in the hips but that could just be my age. I'll post again in a few weeks ... think I'm gonna ask to be treated at 8 weeks rather than 12.. Saying my prayers that we all get good news. And Groupergetter.. I'm praying for you too buddy.. You'll be free of this virus come October.. For some reason I am taking it for granted that I will relapse too. I will actually be shocked if I come back undetected .. If so we will both be back at the docs office getting new meds! Best wishes to all.. wink

Groupergetter · Guru

When you reach the 4 week mark UND the odds for SVR really increase.

No worries, about asking me anything. Just very frustrating to relapse. Hoping I get another opportunity. Not sure if my insurance will cover it. Be well.

Audreyanna · Veteran Member

Thanks everyone.. I'm pretty happy! Still nervous though. It's not over yet.

Groupergetter,

I'm sorry to have been so insensitive asking you about the relapse percentages. Just realized you relapsed after being undetected at end of treatment. Thank God October is close and you can get rid of this dragon once and for all! Hang in there.

Fireman Rob · Senior Member

Congrats Audrey!

Keep us posted.

Isiscat2011 · Guru

Very good news, Audrey.

Audreyanna · Veteran Member

Thanks, Groupergetter. I know I read somewhere on here about a 1% chance of relapse but was that after end of treatment bloodwork or the last, 12 week after viral load results? I'm hoping it's a 1% chance after end of treatment. That way I can quit worrying. Lol. Never got this far before on those other treatments. I am so relieved but still kinda of nervous.

Also, my protein was a little elevated, which is a first, along with alkaline phosphate and alt and ast barely elevated. Guess that's the cirrhosis. Platelets still low too.

anyway, not complaining - just afraid to rejoice yet.

-- Edited by Audreyanna on Tuesday 29th of July 2014 02:08:35 AM

Groupergetter · Guru

GREAT NEWS biggrin biggrin hope and pray SVR is in your future.

-- Edited by Groupergetter on Tuesday 29th of July 2014 01:47:05 AM

Audreyanna · Veteran Member

good news!! My end of treatment labs came back non detected!! woo hoo!!

Isiscat2011 · Guru

TomF wrote:
I sympathize with your need to say these things to convince yourself that S/O will work for you. But there are people here who have completed S/O and who have done everything right, and have still relapsed. When you post please consider their feelings as well.

Very insightful and well said, Tom. It unfairly blames others who treated with S/O and relapsed due to absolutely no fault of their own.

As to the disparaging comments about Interferon/Riba treatments, I think everyone recognizes that Interferon based treatments are far from the ideal, but people are doing the best they can and some people actually don't have much choice.

Isiscat2011 · Guru

Dzdayscomin wrote:
I read an article yesterday that stated Gilead has cured 9000 people with Sovaldi so far since it's release.
Can't recall the cost but I thought it was in the (5.7 billion) not sure how that adds up? I only come up with around 756 million based on 12 weeks of treatment. 9000x84x1000=
I guess what I like to hear is 9000 cured regardless of how much it cost and I plan on being on that list come Aug 26th

Unless they are wrapping some other costs in there???

Hahahaha.... we think alike. I saw that too and was thinking about crunching the numbers to try to determine real world SVR rates. There is also a number for scripts written (I'll have to check that) and that number would be more relevant in the SVR calculation. Not sure how much it tells us yet though without knowing when tx ended. Another variable is what the tx combo was.

TomF · Member

>>near perfect 100 like the OS combo alone

>>if your taking the Golden OS alone and still experience some bad side effects/symptoms Id bet 10-1 odds your in one of the following catagories

bluegene, if only life were so simple. Do everything right and nothing bad will ever happen to you.

I sympathize with your need to say these things to convince yourself that S/O will work for you. But there are people here who have completed S/O and who have done everything right, and have still relapsed. When you post please consider their feelings as well.

S/O is so much better than anything available a year ago, and we are poised to make several more huge leaps within in the next year. S/O is not our last chance -- it is just the best the doctor can prescribe at the moment.

That said, we should do everything we can to improve the odds of S/O working for us. You have a good list of things that may help. biggrin

TomF · Member

>>not sure how that adds up?

Perhaps there are a lot of people who are currently treating or are finished but not yet EOT+4. I know we are a small sample, but many of us fall into this category.

It that is indeed the case, we should see this number jump to 60000+ in the next quarter. :)

Dzdayscomin · Senior Member

I read an article yesterday that stated Gilead has cured 9000 people with Sovaldi so far since it's release.

Can't recall the cost but I thought it was in the (5.7 billion) not sure how that adds up? I only come up with around 756 million based on 12 weeks of treatment. 9000x84x1000=

I guess what I like to hear is 9000 cured regardless of how much it cost and I plan on being on that list come Aug 26th

Unless they are wrapping some other costs in there???

jimbob · Senior Member

Bluegene --

I tried for the OS combo but my doctors wouldn't even try as my tx regimen was determined by my ins. I had no choice as I was tx naive. Fortunately, it was for 12 weeks , and not the 48 so many suffered through.

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