Starting Sofosbuvir GS 5885 - Hepatitis C

Cheesegrater

May 03, 2013

Matt wrote:
"We are not guaranteed of 100% success rates in all cohorts and in all likelihood the results may point towards certain groups needing 12 weeks in order to be more certain of success.
We get perhaps a $100,000 dollar treatment, some of us get cured for free where no other chance of cure for them currently exists.  All that is asked of us is compliance. "

Some good ideas here.
I would tend to agree with you that getting into SOME of the more recent trials has been a sweet deal for many of the participants.   However, making a fully informed decision before signing on to a trial is impossible for the participant.  They have a lot of homework to do often from smaller and shorter safety and tolerability or dose finding trials. Even when previous trials point to high success rates in handfuls of certain classes of patients it still may require a small leap of faith to sign onto a trial.
The full risk of a treatment may not become obvious for several years AFTER a drug has been on the market.

These are new treatments and there is always the chance that once enough long-term data has been collected it may turn out that some or all participants may develop other health issues from exposure to treatment.  Even if they clear the virus.

And if they fail to clear the virus in a clinical trial, they then have a good chance of having various strains of the virus that are now resistant to one or more of the compounds used in the failed treatment and that may reduce their chances of success when treating in the future.

Cheese

Willy50

May 03, 2013

To: Cheesegrater

Actually, it was me that wrote that, but I agree I wrote enough for the past several posters.

I had been in a trial before an so had read through trial agreements.  You are right though; there is a lot there. In may case in many cases we do not have the document for weeks to ponder. I had mine the weekend before and perused it the night before, but it was pretty much as I expected.  The nurse who signed me up then went over it orally with me.  To some extent, it is straight forward enough that if you can't understand it, you should not participate.

As is always the case, we cannot always think of all the possibilities of what could happen or exactly how the medical facility will respond.

I sometimes mention my father who was a Vioxx patient.  He died from taking a drug which was approved for 5 years.  Sometimes being FDA approved is not 100% safe.  Even current treatments have their element of uncertainty.  You've certainly noticed that people react quite differently to the same treatment.   I'm not so sure that many people expect what they get.  You are correct though....we will see.  I liked this because a number of people came before me. That looked like an element of safety.

In the case of resistance..... it may not matter at all if the treatment causes resistance issues if you cure everybody you treat.  : )  That was a joke, but the cure rates are getting pretty close to 100% and the 7977 does not impart much resistance.  Even the protease inhibitors which were known for more resistance seemed to revert back to wild type after a few years. the 7977 allegedly does not impart many of resistance issues, or so they say.

~willy

gerard11

May 03, 2013

We are all in the same church just different pews!!!! I begged and pleaded with my Mayo Doc's to get me in a Gilead trial!!!! i have to fly across the United States monthly to  see my trial Doc's. I would have walked, flown , run anywhere I had to to get into this Gilead trial.  We all have a life threating disease and it sounds like we have all treated many more times than we care to recall. I believe we have all taken toxic drugs trying to kill the Hepititas C virus. I have taken Interfreon and suffered thou lthe horriable side effects like rest of us....
My treatment journey has lead me to this site. I have stated many times how I feel about what this site and what it  means to me. I have meet the most unbelievable, giving, honest, unselfish people ( Hector!!! #1) here, and feel so fortunate to have found you guys and share your knowledge. My prerspetive has changed treating and  being sick with Hep C. I want to give back to this site. I want to help with my friends, community, and others who can learn from my experiences with treatment.
Gilead has a lot going on on this site. All of us that are in trials, can help others who are afraiid, or need to learn more before they can make a informed decision . I have gotten so much info about the Gilead trials I knew it had to be for me, and i got it from this site!!!!!! I am Hep C undectable because of the knowledge I picked up here about Gilead.!!!!!!!!!!!!!!
I therefore take this site and Gilead very seriously. I only want to clear my Hep C and be able to calm the fears or enlighten anyones knowledge about treatment. I personally would not want to say to someone that I stopped my trial X-amount of weeks early,  because I felt that  was enough treatment for me. to influnance a decision without some science behind it would make me very uneasy.  Gilead needs this info and will follow up for years to come. . I chose Gilead, they never came to my door and asked me to join a Hepititas trial. Hope we all achieve SVR12!!! Good health to us all and God bless !!!!!!!

Renee543

May 04, 2013

To: gerard11

Gerard. I so agree with what you said. I too had a weekend to look at the paperwork for the trial and was totallly confused. I did what I did last time when on the Tele, I came to this site and found Hector who helped me so much last year. He is a wonderful person and I say a prayer for him every night. I think we all have the same concerns and hopes here. I put my trust in God and my doctor. I worry too, not only if I relapse (because it took me to week 6 to clear and I have that hard to cure genotype and phenotype.)
But I worry about the meds causing other problems that I did not have to start with. I really had no symtoms (symptoms) to speak of and was healthy except for the 50 million virsuses living in my liver. But to me, it's still worth the chance to be cleared .I mean it was this or wait till the virus finally won the battle with my body. I have lived with this disease from when I first found out it 1995. Waited till last year to try the Tele which did not work.
I have pondered all the same questions everyone else has but I am still glad for my decision to give myself a "chance", even if it does not work out. And still have my fingers crossed for myself and everyone else on this wonderful site who I know, knows just how I feel. Good luck to everyone!!!!

grateful_to_be_here

May 04, 2013

It's no ones obligation to provide us with a cure. There is no entitlement on our part. For 12 years I watched and was offered several different treatments and tried to get into several trials but declined anything with an interferon component.

This is a new road for me & I don't have the benefits or handicaps many of you have experienced over the years. I am in week three of 24 with RIBA.

My study liaison told me last week that for many the insomnia goes away after the first month - we shall see I slept like a baby last night. Might be that I arrived in Conn. where there is no daily stress & the weather is cool at night. Here to celebrate my dad's 85th birthday, a man who had his first heart attack in his 50's and a triple by pass before 60. His dad died at 56. He never thought he would be here today. Life is rich with surprises.

As I look at the ads on tv for pharmaceuticals I often think - why in the world would any informed person take any of these drugs after hearing the list of side effects? I mean really - and these are approved for public consumption.
This one makes you sleepy but might cause suicide - that one will gives you an erection - but it might turn into gangrene.

Health care has to be the biggest industry in this country flowed by the military industrial complex - regulated? Well sort of Gilead was given a Form 483 from the FDA this week raising concerns about their manufacturing procedures in Foster California.

I have made a decision from my gut about this trial - there are no guarantees in life but the hope of living out my years without HVC is pretty compelling.

Again I apologize for making a judgment about compliance yesterday but I believe if I committed to be part naively or not I should be compliant.

Willy50

May 04, 2013

To: grateful_to_be_here

I wouldn't over worry the post yesterday. I have seen the same topic discussed elsewhere. One has to wonder and worry more about is seeing as this is not an approved drug yet.  One particularly thinks about it when you are doing 24 weeks but the company is looking into a large scale trial of 1/3rd the duration and without riba.  It is a valid concern. I know some people really do not tolerate riba well.  It's why some people could not treat w/ SOC.

I am in the same trial arm as you and I hope we both fare well. I know that the effects of riba will accumulate.  So even though it may not kick our butts today, we may be feeling it more as the days and weeks wear on.

Sometimes it's just good to be able to express what we are thinking about, wondering or worrying about.  Expressing our thoughts sometimes is a way of releasing some of our worries.  Getting feedback also helps us better understand various views.

willy

grateful_to_be_here

May 04, 2013

To: Willy50

Thanks Willy

Most of what I read about RIBA is vague with respect to side affects - it seems most of the side effects are attributed to the older protocols with interferon - like skin rashes.

I feel like I am looking for the boogeyman - can anyone direct me to side effects of RIBA alone?

grateful_to_be_here

May 04, 2013

Just went back and retread the past 30 days. Matt you have answered a lot my questions about current effects of RIBA. Thanks

Willy it looks like you and I are on parallel trajectory here - same time line within days and same arm.

Willy50

May 04, 2013

To the best of my knowledge riba has always been used to treat HCV with IFN. Early treatments for HCV did include IFN but NOT riba, so one can infer some differences there. On occasion doctors have also discontinued riba and just tried to treat with IFN

Riba has been used in other treatments but I am afraid to compare in non-HCV related treatments. the best example I could recommend is looking at the current Gilead trials, since I believe the Abbvie interferon sparing trials all contain ribavirin.

willy

grateful_to_be_here

May 04, 2013

To: Willy50

Thanks.
For further comparison I am

60 - naive - 1a - stage 2 - began treatment 4/17

Willy50

May 04, 2013

To: grateful_to_be_here

Astounding.  I will be 60 in one month, 1a, stage 2 began TX 4/17.

Now tell me you aren't a C/T il-28 genotype and you don't live in my hometown.  : )

It does look like there are a few similarities.

grateful_to_be_here

May 04, 2013

Genotype 1a - and I live in South Florida

Enlightening if not a little alarming link
Pelion to Gilead to stop using ribavirin

http://www.change.org/petitions/gilead-sciences-stop-withholding-this-cure-for-hepatitis-c

Link to updated trials schedule

http://hcvadvocate.blogspot.com/p/blog-page_6169.html

Willy50

May 04, 2013

To: grateful_to_be_here

I don't find that link alarming in the least.

There was an expansive discussion of it in this forum and I have seen the petition rebutted in another forum as well.
http://www.medhelp.org/posts/Hepatitis-Social/Daclatatasvir--Sofosbuvir/show/1908299

Further..... since Gilead seems to have proven that the can cure in 8 weeks without riba (in a small trial cohort) it would seem to me that it may become the shortest and quickest route to approval.

I'm not sure the work is being done to define whether riba can be eliminated especially in short 8 week treatments, but where Lonestar is turning out 95-100% cure rates in 8 + 12 week treatments it does not seem to me time to march on Washington; more like time to have some herbal tea and exhale slowly.

I think of this as in informed forum..... in 2 months 6 people have signed the petition, and some of it was just to be a good sport.

If riba truly isn't needed to treat HCV, Gilead will drop it.  It very well may happen, but not before proof exists.  The petitioners want to take the action before the trials and proof is gathered.

It seems to me that if you could cure people in 8 weeks but with ribavirin it would not be the worst thing I could imagine.

Meh.

willy

grateful_to_be_here

May 04, 2013

To: Willy50

Thanks for the background.

Renee543

May 05, 2013

To: Willy50

My doc told me their next trials are for 8-12wks without riba.

Willy50

May 05, 2013

To: Renee543, all

I'm not sure how this will post and I cannot preview it here or modify it. I hope it is understandible when viewing, but all arms in a very small trial hit 95-100% SVR (SVR-4's abd 8's; not SVR-24's), One can always visit the page via the link for the complete article.-willy

http://seekingalpha.com/news-article/6421611-gilead-reports-interim-data-from-phase-2-lonestar-study

etails from this study will be presented at a future scientific meeting.
Treatment

Treatment
Duration
Population Results
Sofosbuvir + ledipasvir 8 weeks GT 1 treatment-naïve 95% (19/20) SVR 8
Sofosbuvir + ledipasvir + RBV 8 weeks GT 1 treatment-naïve 100% (21/21) SVR 8
Sofosbuvir + ledipasvir 12 weeks GT 1 treatment-naïve 100% (19/19) SVR 4
Sofosbuvir + ledipasvir 12 weeks GT 1 treatment-experienced 95% (18/19) SVR 4
Sofosbuvir + ledipasvir + RBV 12 weeks GT 1 treatment-experienced 95% (20/21) SVR 4

nobodyone

May 05, 2013

To: Renee543

I have Benedryl and it helps me sleep...sometimes it is the children's dose also, but it does help..clinic said I could have Ambien, i said no thanks... I did get a good nite's sleep last night..this starts week 3 for me..1B, hep for 35 years about, no inflammation, no scarring, normal labs, just had Hep C..probably 35 years. On another forum..Clark is SVR 24...6 months off of gilead, RBV and BMS drug... all labs are normal, he feels great, has more energy, etc.. i started Gilead, 24 with RBV...I am closely watching results coming in and will follow my gut.. Good luck to all....PP

Renee543

May 06, 2013

To: Willy50

Thanks Willly. That sounds hopeful so far. I am in that last grouping. I am in Texas and they have had several of these trials going on for some time now. My doc thought this one was the best one for me to try and get in on and luckily I did. Though was not happy to hear I was with the riba; After two weeks off meds, I still do not have energy. I'm hoping my hemoglobin goes back up soon.
Do you have any idea how long the riba stays in our systems? I know last year when I was in the Tele trials the rash on my elbows stayed for months afterwards.

Willy50

May 06, 2013

To: Renee543

I mentioned to my NP that I was a little down even after one week.  She said eat some red meat.  I discounted this, since I KNOW my iron was fine.  Even so..... when Istarted thing of the amount of blood I had given. I thought.....why not?  I'm going to end up cured anyway.  there are some things I no longer may have to sweat as much.

I bought a few teeny steaks and have eaten them, and I almost imagined I felt a little better, just less draggy.  Some of it may merely becoming used to the riba; adjusting.

One of those.... will it help? Could it hurt type posts. : )

Two weeks; you still have riba in the system.  Drinking water and light exercise may speed its removal, but time will do it for sure, just not overnight.

matt2200

May 06, 2013

To: all those reading this thread

willy, your comment (3 may) after my last comment is very reasonable thinking

and yes, i am on the riba arm)))))

i am from generations of lawyers so it comes naturally i'm sorry to say)))

i understand i am lucky to be in this trial NO DOUBT...

as for doctors, i'll drop a name..try BRUCE BACON so it is easy to agree most, if not all of us are under the care of the best in the world..yes, we are damned lucky.

but i have to live in the body that while they may be curing, they may also be destroying or making the resulting years of my life more miserable...so there is a trade off

i have a quality of life thing going over longevity..i would rather live a shorter life with less pain and agony than a long one with all the resulting discomfort , aches and pains of getting older..

add whatever RIBA does to the system (i am more concerned about Riba than i am the gilead drugs), as this is my 2nd round with Riba..48 weeks a decade ago and now another potential 24 weeks...

my spine has dried out, i have clicking vertebraes, i have kidney problems which will only get worse with Riba

so, maybe i am taking riba for no real reason?  or, maybe 12 weeks is enough?  so take 12 more weeks so some drug company (i remind you, has let people die because of the at least year long delay Gilead has caused by trying to develop their own dug instead of working with Abbott)

that last reference was to the "i have seen friends die" comment someone made...we all have seen friends die...maybe some of them would be alive now had Gildead gone forward with Abbott and TODAY we have a FDC approved SOC that is 100% effective...(think that one over).

my week 10 blood draw is coming up..i have been asking my doctors and study nurse if there have been any relapsers ..(people who were UND at week 4, remained UND until end of treatment at week 12, with or without riba and then relapsed at any point post TX)

..i know there is not a lot of data, but if by my week 12, if all the data show no relapsers and my doctor thinks i am cleared and cured, i will have a hard time continuing to take a drug i may not need, and harms my body.

i understand the desire and need for data..there will be enogh data from the rest of the world wide trail to give them the data they need, and in fact, i will still be a part of that data: "however, one participant dropped out for unknown reasons, yet has remained SVR by week 12" (hopefully).

or, it could say "one participant dropped out at week 12 was was found to have a viral breakthrough and has relapsed" ...

instead of a year or more delay of getting a 100% effective treatment to market as Gilead has already done at least twice, they will know if 12 weeks was enough for a 1g relapser...or not

from what i hear, there are no relapsers (from PEG/riba years ago) in a 12 week arm..we are all in the 24 week arm...

now i will go back and try and respond to other points brought up in your post and subsequent comments..

IF i drop out, i will at the very least go to 12 weeks so i have at least completed a 12 week arm..i may even go 16 weeks or 20 weeks..or i may finish out the trial..

i asked about dropping the riba at week 12 and was told they would rather me drop out completely..

i know of others who have simply reduced or stopped taking the riba but have not told the study people..to me, this skewers the data more than dropping out....

again, it IS AMAZING we are all responding...to go from 3 mill to not quantifiable in one week is great..i went from about that to <25 in one week also, UND by week 4 draw...and remain UND with week 10 draw this friday..

Grateful to be here, thank you and i apologize for coming off as harsh.  i wish i had turned down the Peg interferon and riba TX i did years ago..you are smart to have waited..as mentioned before, i am paying and will continue to pay the price for that failed treatment, although it DID help, however brief...

it is a struggle for me deciding what to do and i may finish the 24 weeks because i do NOT want to have to do this again...and i may not be able to get in a free program when they do have a 100% effective TX....that's the gamble i take if i drop out

cheese, thank you for expanding on the unknowns we face taking these experimental drugs (we all know what riba does)..  that is one of the concerns i have while going through the decision process ...

gerard...wow!  i drive 30 minutes and they even time my appointments so the bridge is not backed up at rush hour...  i see your point about being lucky to be in the trial...(i feel the same way) but damn!  you have to fly cross country?  wow

renee, your results are of particular interest to me..while you are not a relapser, you did 12 weeks of the combo drug with riba, correct?  please keep us informed and good luck! this is great.i am confident you will remain SVR

back to grateful...at week 9 plus one day, i am tolerating fairly well...it is not fun waking up not being able to breathe easily and then trying to fall back asleep..i feel myself waking myself up as i drift of to sleep, feeling like i cannot breathe and to sleep is to die or feels that way anyway..half the time i get up and watch something or read something boring on the internet and go back to sleep..and then i usually sleep well....i am glad i am not working..happy birthday to your dad

back to willy..ok, i'm gonna call you the voice of reason )))))...yes grateful, no worries...it's all good...  i am also thinking of Gilead doing the 8 and 12 week trials..one would think they would not do a 8 week trial if they did not have the data to support a successful trial...and here i am doing 12 weeks of TX for sure...are the other 12 weeks necessary?  wish someone could tell us but then i guess that's the point of these trials, but surely they have some clue..

back to grateful..thanks for the links..looking at them now....

back to willy..i may be cured at this moment..9 weeks of the combo with riba..but i will go 12 weeks for sure (at least)..are the next 12 necessary? i guess that is THE question of this thread, bottom line.

back to willy again...wow..what amazing results..the ONLY variable not included are relapsers like me...we were cleared with PEG interferon and riba only to relapse some weeks later after 48 weeks of treatment...that is almost a year....one would think even just adding one month to make it 16 weeks would surely be adequate....how different can it be for relapsers?

to nobodyone....good luck!  one good thing about the 24 week trial with riba..one would think that will FOR SURE be 100% effective...

back to renee..i asked my trail nurse abt riba ...she says it stays in your system 6 months (men are supposed to be extremely cautious about impregnating for that long post Tx)..she says the effects vary...1-3 months recovery...i guess it depends on your overall health and fitness..i am totally sedentary ..i used to work out, not fanatic but almost regularly and i cannot imagine even a 20 minute work out now..i get winded walking up a small hill..i avoid stretching because it will cause a muscle cramp, almost in any muscle..i know this is due to Tx...

i am 57, a fraction under 6 ft and weigh 180, they reduced from 6 riba to 3 (i am close to the cut off weight anyway) and i do feel better but still fatigue extremely easy...i figure post Tx it will take 1-2 months to feel better and another 3 to slowly work out and get back into toned shape...if i am lucky..

to recap, no worries, grateful to be here, so am i..i am grateful to be in this study..thanks for the info from all others..and to all other, good luck

i go for week 10 draw friday..i anticipate i will see yet another UND from the week 8 draw..i will certainly continue to week 12, if not beyond.

i hope more data comes in suggesting 12 weeks with riba is 100% effective cure for all types

matt2200

May 06, 2013

To: Willy50

willy,

it would be interesting to know, of those who did not obtain SVR in those latest results...what the circumstances were...were they UND by week 4, 6 or 8 or?

Willy50

May 06, 2013

To: matt

I'm working so cannot respond much.

keep in mind that the participants are somewhat cherry picked and we have no idea as to brakedown by subgenotype, il-28, etc.
Looks great at a distance but there are only 20 people per arm which can skew results in a big way.

grateful_to_be_here

May 06, 2013

To: matt2200

I re read your post several times. A lot of information and a lot to think about. I am early in the game and had not considered much of what you have learned.

Interesting for me, I was not sleeping after I began the trial drugs - the pattern was falling asleep around 11 - up at 2 for a couple of hours or longer then fitfull light sleep until 7 - if I was lucky maybe another hour after that. I came north from Florida this week and have been in Connecticut for the past 3 nights - it's 55 degrees and I have had 3 restful nights of perfect sleep. I am asmatic but have had no nasal or breathing issues. Sleep is essential to my well being so I am optimistic. I do take a generic 10mg singular tablet each night and have been encouraged to continue by my study nurse.

When I was first diagnosed I was defiant and angry. I exercised manically, went with a very strict diet with lots of chinese herbs from dr Zhang i lost 20 lbs and rode my bike 200 miles a week. It took me a few years to adjust. Ultimately i made big changes - divorced my wife and moved on with my life. My liver enzymes settled down and I took up sports car racing and generally went off the reservation. Lived with my foot on the throttle. For the first time I am optimistic I can chill a little - that its all going to be ok.

I go back for 4th week blood draw on the 15th and will give you all my results.

I am also grateful to have all of you to share with and to learn as I go.

Willy50

May 06, 2013

To: matt2200

Thanks for the response and the good humor. I thought I could tell that the riba was spiking you a little.

As mentioned, IMHO yours is a valid concern.  (by the way, the collaboration was w/ Bristol, not Abbvie)  The point however is we are trying to get cured so as to sidestep damage. In over treating with two unapproved drugs, combined with another drug that has it's own list of sides, we *could* be risking our health.  There just really isn't any long term data and not in any great numbers.

I have wondered it myself.I understand the trial is et up a certain way, but if they are cranking out 100% cure rates in 8 weeks w/ riba exactly what benefit does one get from the data?
If they are curing 100% with 8 and 12 weeks I see no differentiation in regards to efficacy; 24 weeks will also be 100%.

The question may be more along the lines of safety and tolerability.

I have to admit, if 12 weeks sounds wonderful....or 16. That is still double dosing compared to 8 weeks.  I guess it is a wonderful problem to have.

Sorry the riba is kicking your butt.... and I am glad they reduced it.

willy

matt2200

May 07, 2013

To: grateful_to_be_here, willy50

i thought i read Gilead did an abbott trial too but you are right about bristol.. i thought i read of 2 successful trials Gilead was in but backed out on the news of success and then they went out and bought out Pharmasett (sp?)...could be brain fog)))

it is great having an excuse for any bad or strange behavior: "hey man, i am on those experimental study drugs, remember? good thing my guns are locked up" or something even more crazy sounding.. people seem to settle down after i say something like that.

no matter when i stop the study drugs, i may not tell those around me so i can continue to use the excuse..there are upsides to this.

grateful, not sleeping well does not sound that bad ..but it is very annoying and is worse than it sounds....i find myself doing the same thing..sleep about the same time..wake about the same time..then if i cannot get back to sleep. do something and go back to sleep later..again so lucky i am not working yet have a small income

in a prior life i was Mario Andretti ..really..i think one of the best kills i have is i can DRIVE..had an M3 for awhile..some jacked up turbo volvos with suspensions, and currently ride a BMW K1200S..rode it across Germany, Poland and Ukraine last year....i also lived a full throttle life....over 3000 skydives, SEL private pilot. slalom water skier

now i am lucky to walk up the back yard and not fall over from fatigue and shortness of breath..so that quality of life thing has hit me hard.

i want to get this over with, celebrate by cautiously getting back into shape which just gets more difficult with every year, and if my small investment hits, along with my small income from a business i no longer manage, i want to go travel and splash down for 1-3 months in places like Constanta, Romania, Mexico, possibly south america, maybe back to europe..and live out the last years knowing i will die of something OTHER than HCV

wish i could be as disciplined about the food i eat

great documentary about eating right and health is "Forks over Knives"

http://www.forksoverknives.com/

i HIGHLY recommend forks over knives..probably the single most important docu that those of us with HCV can view.

off the reservation..i like that

i like to think i have lived the life i choose more than the life one lives

matt2200

May 07, 2013

To: all

PS this is a great forum and excellent source of information..everyone has contributed..it really is an informed board and we're becoming more informed as we share our experiences

grateful_to_be_here

May 07, 2013

To: matt2200

I have always been irreverent - never had a real job per se after the usual when I was young, washing dishes, painting houses, construction.
No college - went to schools the streets had good entrepreneurial instincts and a lot of luck. Got Into the commercial development business thirty years ago by accident and have never looked back. The growth of my business ended 10 yrs ago & I am hopeful I can make the income I have last to the end - though the actuarial - with lick - could change with this study.

Took up racing Spec Miata in SCCA at 55 and been obsessed until recently when I realized I could never run better than mid pack - there is no market for old slow race car drivers.

I am noticing over the past few days changes in my skin, small red rashes on my arms and an itchy scalp.

Correalation?

matt2200

May 07, 2013

To: grateful_to_be_here

i had a friend who is into cars and he let me drive his Miata. i can see where that is a good platform for racing.

i also took the road less traveled..some college, did the same jobs you did and others, got lucky with a photographic and video skill i have and made enough to finance my passions...just barely

never was responsible enough plus not finding the right woman to have a family.

i do like not having too many responsibilities and it has made dealing with this HCV thing much easier

i also have the red rashes very slight..scalp has it..my face and hands are drier..the riba dries you out from the inside...one reason i am concerned about my spine

spinal stenosis is no fun

kidney and pancreatic problems can be common with Riba

get pancreatic cancer and you're dead in a year or less

Renee543

May 08, 2013

To: matt2200

Hi Matt, well I know you and Grateful...are two guys but I do have a common thread as you two. Some college and started a couple of different businesses that were successful. The one I own now, I started about 20yrs. ago and it is doing pretty good considering this lackluster economy. But I too worry about the future being self employed. My job does require a certain amount of physical activity but luckily I do have time to come home and take naps if need be. (and they have been needed lately).
I also had the dry skin and rash (mainly on my elbows). But the condition that bothers me the most is my eyesight. I had an eye test just before I started the trial and I did need readers but my farsight was pretty good. My eyes have dried out to the point where I am constantly having to use eyedrops to lubericate them. Mynear vision is worse now and I cannot see far as well as I used to. I also had a vertigo condition that bothered me a couple of times a year before I started.Now it seems I get dizzy a lot. I am trying not to panic or blame everything on the trial. I am going to give it some time and see once the meds are out of my system if these conditions improve to at where they were pre-trial. I am concerned though.

gerard11

May 08, 2013

To: Renee543

Renee I too have experienced vision problems. Mine are the same as yours. I needed readers most of the time to read the paper, menu, ect. Now in the last few months ( I am in the 20 week of 24 week trial). I am 58 and couldn't determine if it was age or drug related, or both! I too have the shortness of breath from the RIBA, along with the fatigue. I hope like you these will subside or go away completely after trial is over. My last Sofosbuvir pill on 6-13-2013.

Renee543

May 08, 2013

To: gerard11

April 22nd was my last dose. Thank God!!! I was seriously considering cutting the riba out myself, just because my self preservation was starting to outweigh the trial. I too had the shortness of breath; which seems to have subsided somewhat. But still having fatigue/low energy. But I know the vision problem is because of the meds. Mainly because I had that eye test just before starting and then the trial doc sent me to an eye doc and I was re-tested and it was much worse. Eye doc didn't really know what to do, other than get stronger glasses and use eye drop all the time. Duh....
And I am beginning to think the meds are connected to my dizziness. I don't have it all the time, but enough to notice that it is bothering me. I know the trial doc will not do anything at this point. I was told Gilead will not be giving them the results of my blood work at my one month check. Which kinda ***** because I want to know. I especially want to know if my hemoglobin has gone up any in a month because it sure does not feel like it has. I would also like to find out if my liver enzymes have gone down because they told me once I quit the meds my enzymes would drop to the teens and be normal again. But other than going to a lab and getting my own lab work, how will I know this if they are not sharing results anymore? I think I may have to get vocal on this point. So I'm thinking if you relapse, you get a call and they say "hey bad news".....?
Sure hope I don't get that call.

rivll

May 08, 2013

To: renee,gerard,matt,grate

I finished my trial with sofosbuvir and riba 8 months ago and I too experienced vision problems and dry eye. Interesting, I had connected everything else in my life to the meds that one I really never thought about.
It has not improved much but what bothers me is that I used to devour books, read hours at a time and since tx I can only do a few pages at a time w/o my eyes experiencing fatigue.
This is a whole new world and I am so glad you all are talking about the effects.
All the best to you.

gsx1250fa

May 08, 2013

To: All

Haven't posted on here in weeks...anyway...8 week post Tx (gilead ledipasvir/sofosbivir/riba 12 weeks) blood draw is still und. Doc said I now have 98% chance of final svr. If 12 week draw comes back und it's is considered clinical cure with 6 mos und being the final chapter. For those who don't know my history I am a (hard case) 3 time null responder over the last 3.5 years. Anybody with a chance to enter the gilead study...jump on it. Hopes and prayers for all.

gsx1250fa

May 08, 2013

To: gsx1250fa

Oh...I am stage 5 of 6 ishak scale cirrhotic (beginning stage). Hi probability the cirrhosis is reversible as long as I stay undetected....so says the Doc.

grateful_to_be_here

May 08, 2013

To: Renee543

two weeks ago after the first week of meds I got a bad floater in my left eye and white flashes - like a detached retina. went to ophthalmologist immediately and he reassured me it had nothing to do with the trial - but how would he know? I have decreased vision in my left eye and a little blurring. Study coordinator assured me it wasn't meds.

I am going back for vision test in 5 weeks - always had 20/20 vision and I am required to have an annual exam and maintain pretty high standard of vision for my driving licenses. Will keep you posted.

went to get some cardio this morning in the stair well. 25 flights up and I was exhausted. Not a good sign - usually do 30 before I started on the meds.

other than that I feel good...

johnny679

May 08, 2013

To: gsx1250a

Great news , I really love to hear that , very good for you and also gives a lot more hope to all . I really hope that ledipasvir/sofosbivir/riba will be filed for fda this year some time .

gsx1250fa

May 08, 2013

To: johnny679

Thanks. I remember posting on this thread when it started back in January. Hoping all the Gilead study participants are doing well. Stats seem to be good at this point :)

matt2200

May 09, 2013

To: all

i also have vision problems but did not pay too much attention, thinking it is age, but i do know it is worse now and got this way fast

gsx, that is great news

grateful...25 flights of stairs? good grief!!! i might be able to walk 2 or 3

i am sedentary until this is over

matt2200

May 09, 2013

To: grateful_to_be_here

i have to wrap my head around this..

25 FLIGHTS of stairs, right?...i mean..is that like 25 FLOORS? or is it 2 flights per floor, for 12-13 floors?

the tallest building in my small town WAS (now they are not as tall) was 6 floors..and even as kids it was not easy to run up

i do think i read you said you got into fitness?

well now i feel near death..i wish i could run up 3 flights of stair, let alone 30

thanks.... now i am going to have to report depression at my next checkup....

nobodyone

May 09, 2013

To: gsx1250fa

How many weeks on treatment did it take for you to become undetected? I just got results of 2 week blood draw and it was less than 25 but detected. I am on 24 week Sofosbuvir and s5885 with RBV!

I am 21 days into treatment...Today I feel good, this has its ups and downs, but today feel good!

gsx1250fa

May 09, 2013

To: nobodyone

Hi there. I was also <25 (detected) at week 2...and UND by week 4. I was on the same drug combo (gs-5885 was renamed ledipasvir). This combination is very aggressive with few side effects...for me anyway. The riba doesn't bother me. 24 weeks should be more than enough. My Tx was 12 weeks...and I am a hard case with 3 attempt/failures over the last 3.5-4 yrs before the gilead study. Keep us posted.

matt2200

May 09, 2013

To: nobodyone

you did not ask but i am always willing to jump in, invited or not...lol

same here... week 2, <25...by week 4, UND. seems the majority clear the virus between week 2 and 4...some are clear by week 2.

i am in the ION-2, 24 weeks of the FDC and riba

it also appears that is a good indication of successful treatment..i do not think i have read anywhere that there has been a relapse of anyone who reached UND by week 4 and remained UND until end of Tx at week 12

my bet is 24 weeks with riba is a 100% cure...if not 12.

Gilead is testing 8 and 12 weeks, ION-3

gsx1250fa

May 09, 2013

To: matt2200

Absolutely correct. All participants in my study (with and w/o riba) who were und by week 4 have remained und thus far.

nobodyone

May 09, 2013

To: gsx1250fa

I will keep you posted. If it gets too hard I think I would ask to cut down dose of RBV or just quit at 16 weeks..Time will tell...Today I feel great, but there have been times when I just get really tired, but still this is doable!

nobodyone

May 09, 2013

To: matt2200

Yes but get liver cancer and you die right away hopefully..Go with your gut. When we see people just having to do 8 or 12 weeks, it just seems like why go through 24 weeks..just my thoughts.

nobodyone

May 09, 2013

To: matt2200

My dr had said if it were him, he would want the 24 week and with RBV because that gives you the best chance of SVR forever... but we have to wait and see how the 12 week people do... the 8 weeks deal makes a lot of people nervous..the drs..coordinators, etc...

still_above_dirt

May 09, 2013

To: Renee543

Regarding your May 8 post, what my research coordinator said was that you'll get a call from your research coordinator that says something like, "There was a problem with your blood draw so the lab needs me to retake it."

You're a little ahead of me on the treatment schedule, plus you were on the 12wk+RBV plan, right? (as in 12-wk duration?) I'm on the 12wk-no-RBV plan and took my last combo pill two days ago. So, wk6, wk8, and wk10 labs UND for me (but not wk4):

So, obviously, I don't have EOTwk12 results because the blood draw was just two days ago. Not sure if I'll get copies of blood chem tests or viral load resuls for EOT12 -- not even sure if my hepatologist gets that data back from the test lab or not.

Presuming no viral breakthrough between wks 10 and 12 and that I am still UND at wk12, it is my understanding that what happens next is if EOT+4 shows SVR4, that the testing lab mails a letter to my hepatologist's research office instructing them to go ahead and schedule me for an EOT+12 test. Otherwise, they get a letter that says to invite me in for a "sux-2-B-U" confirmation blood draw. Same fire drill at EOT+12 for subsequent EOT+24 test.

In the meantime, for me, just like you, the waiting game is on...

grateful_to_be_here

May 09, 2013

To: matt2200

When I was diagnosed at 50 I was 185lbs 5' 10" and sedentary. I went batpoop and exercised like a lunatic, rode my bike 100's of miles a week dropped to 160 lbs in top shape. But I was miserable, lots of demons, now I had HepC and my marriage was on the rocks.

Left home and after a brief stint of dating, that was rough, the 35 year olds dam near killed me, I met the women of my dreams and started much more normal exercise regimen. I am a fat slug again at 177 today. Did my 25 floors and it whupped me. I am hoping I can get up to 50 floors by next week but it's really hard right now.

I have been thinking a lot over the past few days as I process what I read here with all of you and we begin to compare notes, symptons/side effects.

I want to be careful not to get to caught up in it and see the boogeyman. It s easy with what we are going through to become hypochondriacs and I am going to be careful not to second guess it tooooooo much.

The one lingering concern I have though is my vision and I would not compromise it if I believed the effects would be long term - for a cure today. just something to ponder for me and I may ask for a consultation with Dr Schiff about it.

gsx1250fa

May 09, 2013

To: nobodyone

Please do keep us posted. Only 2 in our group relapsed. Both didn't go UND by week 4. I would continue the whole 24 weeks or as long as they want you to. Small price to pay considering. I had no side effects with the Riba. Maybe my system has become acclimated to it from the prior 3 Tx attempts. Good Luck.

nobodyone

May 09, 2013

To: gsx1250fa

How long ago was your treatment? When did you stop?

Thanks

gsx1250fa

May 09, 2013

To: nobodyone

I finished my last Tx 8 weeks ago. This was the gilead 5885 (ledipasvir)/sofosbuvir/riba for 12 weeks. I did my 8 week post Tx draw this past Monday (may 6) which was UND.

Renee543

May 09, 2013

To: gsx1250fa

So is it your belief that if you are not UND by week 4 then you have a greater chance to relapse? I was 25 at week 4 and then next draw week 6 I was UND and UND on week 12. You said that the 2 relapsers did not clear at week 4. I sure hope that is not true for all of us that were not UND by week 4.
I too have tried not to get "caught up" in the boogyman syndrom (syndrome). But I am fairly certain that the meds have caused my vision to worsen. Like I said in previous post, I know this because I had my eyes tested just before beginning the trial and once I realized my vision was getting bad, I had the trial doc send me to an eye doctor to be tested. It had gone from 1.25 readers to 3.00 and also my far sight was no longer 20 as before. But if I am UND and "remain" UND then it is worth it. If I relapse because I did not clear at week 4, then I guess it's the price I pay. Which would ****.

Renee543

May 09, 2013

To: still_above_dirt

That's interesting. At the end of my week 12, the doc scheduled me in a month May 20th for blood draw to see if I remain UND off the meds for a month. When I had my blood tested every 2 weeks, the doc would call me in 3-4 days via phone and tell me the results. All she told me was once I got my blood draw this May, they did not get the results back, just a letter. She said they would be able to tell by the letter if I was clear or not. So I assuming that she will call me and let me know.
Yes, I was 12wk. w/riba...hence all the vision problems.
I will make myself crazy thinking about all of this, now I worry about not being clear by week 4. Reminds me of my first trial last year with the Teleprivir and they booted me at week 4 because I did not reach 1,000. I was 1,200. I was never going to do another trial. But that's easy to say until your enzymes get higher and higher and your viral load reaches 50mil. Then I was willing to "try" again. Sure would be great to remain UND. I was not even that happy to hear I was UND at week 6, I was afraid to be happy.

gsx1250fa

May 09, 2013

To: Renee543

Hi. The 2 people that didn't make it didn't go und at week 4. I am only repeating what the doctor told me. I don't think it is written in stone that if you don't go und by week 4 you will relapse. Also...my group is hard to treat repeat offenders with Tx failure history. Have you had your week 4 post Tx draw yet? i am hoping and praying for you and the rest. VISION PROBLEMS>>>>LOL>>>>By my 4th Tx attempt....I can't see **** anymore. My vision problems started 4 yrs ago on my first Tx attempt.Price you pay :(

matt2200

May 10, 2013

To: all recent posts

SUX 2 B U   ...lol  that made me laugh..but you are correct (as far as i know)

nobodyone...yes, i am still undecided and i waver...continue 24 weeks if it is not necessary "just to be sure"?  someone said, and i agree, if you are "cured" after 12 weeks, you are no more "cured" after 24

but then, i have to respect what the DR said, who knows far far more than i do, that he would do the 24 weeks..that of course sounds reasonable and on the surface, makes sense.

riba is affecting me, if i merely stretch i have muscle spasms and deteriorating eyesight along with all the other symptoms ..

pancreatic problems along with a host of others can be caused by riba

i want to ask my doctor but not through email as i have seen copies of others emails i sent to him in my study file (my doctor is not in direct charge of the study,, one of his partners is), i go to my doctor for periodic checkups prior to being asked to be in this trial..

i may schedule an office visit if it does not cost too much (no insurance) and ask where he can look me in the eye ..

i am thinking he may say the same thing nobodyone's DR said, (do the 24 weeks) or, he may say,he cannot guarantee it but the likelihood is i will be SVR just like everyone else

from what i know that makes my situation unique is we are the first "relapsers"..we went UND under PEG interferon and riba (48 weeks) but it came back shortly after stopping Tx

but my layman's thinking is that if this Tx works on people like GSX, people who did not even respond to THREE different treatments, how can a relapser be any different and need longer than 12 weeks of Tx? especially if UND by week 4 and have excellent and normal levels across the board since week 2?

but is it possible the very thing that made us relapse after PEG-riba may be the same thing that will make us relapse again?

my thinking is no..... this is a completely different drug (cept for the riba), a completely different method in which the virus is cleared

my bet is i could stop now and i am clear of the virus (week 10 tomorrow) and will remain SVR if everyone else does

when i signed up, i knew i would do at least the 12 weeks...2 more weeks until decision time

i am leaning towards dropping out...  someone on another forum said do not drop out because it is considered a "failure"....i think he was mistaken ..i think that may be true if someone drops out and does not go to the EOT check ups.

if you drop out, they will ask you to return for a blood draw..i think at 2 weeks, certainly at 4, maybe 8, or is it 12, and again at 24 if you remain UND and SVR..so those results are included in the trail, not counted as a failure

i may be wrong and please feel free to correct me if i am mistaken or do not have my facts straight..

this is very exciting stuff...  being cured of this nasty black cloud thing

matt2200

May 10, 2013

To: all

sorry for the typos...must have been the drugs...lol

(nevermind that it is 3AM and just now think i can sleep)

Renee543

May 10, 2013

To: gsx1250fa

I have my 4 wk post tx draw on May 20th. I had one txt failure last year with the Teleprevir. If I had not been taking the riba, I would have liked to stay on the meds a bit longer but could not handle the riba one more week.
So I shall find out soon enuf. Sure hope that it is not written in stone as you say. That's why I am not going to be happy until I know for sure....it will be a real drag to relapse just because I did not stay on long enough for me. But I never want riba in my body again!!!!

Renee543

May 10, 2013

To: gsx1250fa, all

Just want to say I am sure you all have done a search on ribavirin. There is a long list of side effects from taking this drug. One of them is vision changes.....also dizziness.

nobodyone

May 10, 2013

To: matt2200

Hey Matt, I am thinking, I too, will be dropping out at 12 unless there are no sides, which that is highly unlikely..the most i will try to go for after that would be 14-16..just my 2 cents...if it is dead it is dead, if not it just can't be killed yet.

i have already been having some sides from RBV and I am just at 3 weeks.

rivll

May 10, 2013

To: all

I am so glad you all are keeping a running commentary on this thread. I am very interested in what is happening with you guys and it makes it easy to follow you.
Thanks and keep it up.
:)

grateful_to_be_here

May 10, 2013

question to earlier Tx study groups that took RIBA.

any concensus on vision?
are the effects cumulative?
permenant?
if not does it subside?

I think we are the best data base for this discussion though not conclusive

I admit I am fixated on not incurring long lasting degradation of my vision as a result of a drug i can identify and may or not have a postitive effect on curing HCV

rivll

May 10, 2013

I already posted on the question, but in case you missed it, I will repeat.
I was a voracious reader before tx even when I felt very sick from HCV I would read hours at a time.
I treated with sofosbuvir and riba for 24 weeks. I cannot read more than 3-4 pages (even large print) without experiencing eye fatigue.

I experienced dry eye, burning and itching during tx too. I did not attribute it to riba at the time I thought it as part of my overall ill health.

Currently, 8 months EOT, I no longer have dry eyes or burning but I still cannot read more than 3- pages w/o experiencing eye strain/fatigue.

We need to remember that our experiences alone are not conclusive and should never go against protocol based on anecdotal evidence. Discuss this with your teams guys.
If I could go back I would still do the full 24 weeks again to be SVR poor vision or not.

nobodyone

May 10, 2013

To: grateful_to_be_here

i do know one gal on another site who did RBV 3 other times with no problem with eyes, then did a 4 time and now is SVR, she said would do it again in a heartbeat if she had to...she has helped me keep a good attitude while doing mine, but still i don't want to do it 24 weeks if i don't have to, just want to do 12-16 weeks and be done with it..

rivll

May 10, 2013

I just remembered something about my tx with sofos and riba...I complained about how I was feeling to my clinical dr. and he cut the riba to 600 mg per day at 12 weeks in. The following month my nurse cut it to 400 per day and the final month they upped it to 600 per day.
I was told they did it across the board for all of us in the tx study because we were all complaining about the side effects. A few people did not have SVR. One like me, was cirrhotic and the other was geno 3.

nobodyone

May 10, 2013

Wow they really cut it down..cool..that sounds doable if they would do that. my bmi is 20 which i read means i shouldn't even be on the stuff anyway plus i just am not used to taking a lot of pills, i always just need the low doses, not high since i am a lightweight..if my blood work isn't good i am going to see if i can get them to lower my dose, then this wouldn't be a big deal at all. maybe i will ask them next week although i will only be on week 4 then..so probably not likely..it won't hurt to ask them though...

matt2200

May 10, 2013

To: all

when my hgb count went from 16.1 to 11, they halve my dose too...in half...with clothes on, i weight 180 so i am just above the cut off for small or large dose

i had my week 10 draw today and saw my week 8 results...still UND,

hgb 11.9 so it does rise when the dose is lowered..makes sense...ALT 20, AST 24

as far as i know and am told, everyone who was clear by week 4 is SVR so far..i hint around about 12 weeks being enough and oddly enough, no one say anything about "be sure you finish the 24 weeks"...it seems people are starting to get comfortable with 12 weeks being enough.

i will take the refill of the meds at my week 12 draw..current thinking is stop the RIBA after week 12 but continue with the FDC for one more month.

i think the 12 weeks of FDC plus riba did the job, quitting riba after week 12 will have no effect on the outcome but give my body a chance to start recuperating from the riba and take one more month of the FDC as "insurance", so to speak.

i just have a difficult time justifying 12 more weeks..a month? yes, but twice the amount that is achieving SVR on all those clear by week 4?

i hate the riba... if i do quit the riba but continue to take the FDC for one more month, i will disclose it to the study after the fact so they have the correct data

grateful...one last question about the stairs...do you walk up or run up? i hope you walk because i do not want to feel like i need to commit hari kari

nobodyone

May 10, 2013

To: matt2200

I think is a good plan..just my thoughts on it...12 weeks is probably enough...but those extra 4 weeks maybe is a double guaranteed deal...and w/o RBV sounds good...let your body recover!!

matt2200

May 11, 2013

To: nobodyone

that is where i am as of now, unless more data comes in..

i also know if i drop out and i relapse, it is all on me and the choice i made...

next stage for me is cirrhosis,,..yet my blood levels and level of viral count was low compared to most... i have seemn ALT and AST in 3 digits on some people who post info here..my AST and ALT were in the 60's and 40's....elevated but not by much

all levels are normal now and have been since about week 2 with UND coming between week 2 and week 4

i think this is an indication that not only is this Tx working but i am already cured, surely by week 12, 2 weeks away

grateful_to_be_here

May 11, 2013

To: matt2200

I trudge up the stairs - like the march to Buutan. running isn't in the cards these days. My first choice is running slowly in the soft sand but it hurts too much. my heal & my back. Had a major karting accident last year.

I am going to put some air in my tires and dust off the seat and go for a bike ride with my girl.

thanks Vivil and the others of you that have given me your input on changes in vision. I am going to assemble some it and go over it with my dr after I redact it.

johnlad66

May 11, 2013

To: Renee543

yes...but it's random open lable... 1/3 chance u will get riba with 12 weeks of combo. I'll get assigned to one of the groups near end of may. equal chance of 8 weeks combo, 12 weeks combo or 12 weeks combo plus riba.

I expect all three would get svr cure.....anyone know what side effects the riba will add to combo???

matt2200

May 11, 2013

march to Bataan LOL man that was good..ok, i'll put away the sword.

what kind of bike?

once i am about a month off the riba, i will visit a personal trainer i know...and go for about 2 weeks..he will make sure i do not hurt myself and give me a routine i can do on my own, which i slowly increase the weight and add more exercises as i build strength. in the old days only took about 2-3 months to get toned again

i am thinking this may take more like 3-4, due to age and coming off the riba...my hgb was 16.1 which i think is towards the high side...went down to 11 and now back to 11.9..

i eased off even a little more after they reduced the dose but i went back to the therapeutic dose as prescribed for these last few weeks leading to week 12..i want to be sure i do the 12 weeks as close to possible as prescribed so i have the better chance of SVR

i'm told if you take at least 80% of the study drugs, it is considered completing the prescribed dose

matt2200

May 11, 2013

i meant to add, i have not missed one FDC pill..that is my new religion

grateful_to_be_here

May 11, 2013

To: matt2200

I have canceled my trainer four weeks in row with all that has been going on - hope to resume on Tuesday. As for bikes a DeRosa King and a litespeed Ghisallo for climbing. Can't remember the last time I road the Ghisallo though I did get a short ride in on the King today :)

I wonder if my coordinator has the latitude to reduce the dose of RIBA ? That's rhetorical. I am coming full circle In my thinking Matt.

I am down with the program but I want to understand to the best of ability the downside - as personal matter you have been patient to help me understand.

Thanks again Matt

grateful_to_be_here

May 11, 2013

To: matt2200

I have not missed a dose of either med

matt2200

May 11, 2013

To: grateful_to_be_here

my Hgb went to 11 and i was telling them how fatigued i was/am..the nurse had to ask the DR, they saw my weight and reduced it in half

it was 3 little nasty blue pills in the AM and 3 in the PM...now it is one in the AM and 2 in the PM...i have, at times taken only 1 in the PM and once or twice i forgot the evening dose, maybe on purpose..i am still way higher than 80% and am taking the 3 daily as prescribed at least until week 12

upped HGB to 11.9 as of week 8, saw that at my week 10 draw last friday..i anticipate my Hbg will be 12 or more when i see that draw

Willy50

May 11, 2013

I  got phone results.  I get my 4 week labs drawn on wednesday and I'll have paper confirmation of week 2 results.

Still detectable at week 2, but still below quant< 25 copies.

I am a 1a and a CT so I am a little harder to clear.  The nurse is not concerned, nor I.  Obviously, undetectable would have been better.  The drugs and riba will do the job, IMHO.

My hemoglobin went from 16 day 1 to 14.8 end of week 1 and 12.5 end of week 2.  I seem to be adjusting to it and may feel better now than I felt after 1-2 weeks.

ALT went from 130 to 43 in 1 week to 21 at week 2.

This may also be why I seem in some ways to feel better.

Yesterday I helped unload a moving van for a few hours carrying stuff up and down stairs.  Earlier in the week I did other heavier work.
So far so good.  I am sleeping well and if anything sleeping less but getting better rest.
Not much else.....

willy

matt2200

May 11, 2013

To: Willy50

my bet is you will be UND at your week 4 draw...i was <25 at week 2 also. i think the majority clear between the week 2 and week 4 draws

nobodyone

May 11, 2013

To: gsx1250fa

So do you feel different now that you are no longer on the meds and finally no hep c? Like getting more energy etc? Thanks for answering my questions. :)

grateful_to_be_here

May 11, 2013

To: nobodyone

I am coming up on 4 weeks wed with Willy. for all my concern about my eyesight - which is still beyond my grasp and my insomnia - I feel much better like the old fatigue is gone and a feel better in may respects.

I also recognize that I am in a state of combined euphoria with the hope that I will cured coupled with the natural anxiety of the unknown.

the other piece for me is I am busier minding my affairs than I have been in 5 yrs and like the study all positive but still inconclusive.

grateful_to_be_here

May 11, 2013

I feel very fortunate to be busy if not overwhelmed. on another subject I found myself staring at the bottle of RIBA on the counter tonite thinking about I learned reading here today and came to the conclusion I will look closely at my baseline comparison in my hemoglobin and week two draw so perhaps it can be adjusted if warranted

thanks for all the help here my friends

peace
goodnight

matt2200

May 12, 2013

To: grateful_to_be_here

when i started the study back at the beginning of March, i did ask Dr. Bacon what he thought of the available trials ...he said he preferred the trials WITH riba, thinking it gives everyone the best chance...

but we are seeing SVR with 12 weeks of the combo drug without riba. so the trials go on and new ones come along..

another thought i had, it out of all the treatment naive people with g1 who are now SVR after 12 weeks of Tx, surely there would have been some in the trial that would have relapsed under the PEG-interferon/riba trails of the past.....yet they remain SVR with the new Gilead combo drug.

that further bolsters my thinking that 12 weeks is enough for me.

gsx1250fa

May 12, 2013

To: nobodyone

Actually I felt worse after I stopped taking the meds. More fatigue and had daily chills. My wife had a stomach type virus that lasted a couple of weeks that I might have caught. I went to the doc twice for bloodwork and everything was normal. I still don't feel 100%, but a bit better. I don't know if the meds might have had anything to do with my feeling bad...time will tell.

gsx1250fa

May 12, 2013

To: gsx1250fa

I've also got very dark circles under my eyes that won't go away. The main thing is staying UND and hopefully whatever complications I have (if any) will heal up. The human body has an amazing ability to restore itself.

Renee543

May 13, 2013

To: gsx1250fa

It's weird...I expected to feel better after the meds too. Actually feel worse with more problems than before. Yikes. Hope it's temporary conditions.

grateful_to_be_here

May 13, 2013

To: Renee543

I was just thinking the same thing to myself this morning - the nagging aching fatigue I always attributed to the disease are seemingly gone. I am fatigued from lack of sleep, my vision is blurred in one eye and they are scratchy and runny, I am short winded -

gsx1250fa

May 13, 2013

To: Renee543

One thing I have acquired since my first Tx attempt 4 yrs ago...is Dry eyes. Some mornings I wake up and my eyelids are glued to my eyeballs.

matt2200

May 13, 2013

these are reasons i consider when thinking about dropping out..

i am sure most of you know if you drop out yet attend the post Tx appointments for your blood draw, the results are included in the study...

gsx1250fa

May 13, 2013

To: matt2200

One concern I would have if dropping out....would be eligibility for another study if for some reason you relapse. I guess if you don't tell them they won't know as long as you show for all your appointments.

Renee543

May 14, 2013

To: grateful_to_be_here

Some good news, I am on week 3 no meds. I do think my dry eyes are getting better. My vision is still not as good as it was pre-trial but at least not as dry. I have been using Systane Balance (purple box). It seems to work the best.

matt2200

May 14, 2013

To: gsx1250fa, renee

i may ask about what is available or not available to anyone who drops out or has a viral breakthrough...you might ask the same and we'll compare answers..

gsx1250fa

May 14, 2013

To: matt2200

My study was only for 12 weeks which I finished 9 weeks ago. I have been on the same protocal for the last 4 yrs...and 4 treatment attempts. If I fail a Tx....they generally wait around 6 mos (post Tx failure) to try something else. I just keep in constant contact with them. Seems like there is a new study drug coming out all the time. I am hoping and praying this last gilead combo works for me as well as you and the rest. After the last 4 yrs....I know not to get overly excited.

nobodyone

May 14, 2013

To: Renee543

I have heard that even on the RBV it takes its time getting out of your system..but that you will feel better than you have felt in years with a renewed energy...it just takes quite a while to get out of your system!!

grateful_to_be_here

May 14, 2013

slept terribly for the past three or four nights - finally crashed from exhaustion last night and got a good nights sleep, albeit very run down this morning.

My trainer came for the first time in 3 weeks and we started on 31 flights of stairs in a building i routinely train in. got to 10 and was exhausted and dizzy. contnued to do all thirty with rest every ten floors - worst ever for me.

Vision seems to be worsening - still on three riba twice a day. plan on looking at hemo tomorrow with study coordinator along with some redacted comments from here to support asking for a reduction

wanted to make sure that was ok with all of you. what I have done is created a word file removing the all names and screen names anything that woudl identify who you are and where you are but leaving in the dates for documentation

i will delete any comments form anyone who has concerns about their privacy

and will share my feedback with you afterwards. My goal is to get in front of the lead doc for my trial and have a candid discussion about my vision.

matt2200

May 14, 2013

To: grateful_to_be_here

i brought up vision at my week 10 of Tx..i was told that was a interferon symptom.. but i see too many references from others about the riba and have experienced it myself.

if you are near the cut off weight (i think it is 75 kg), and your hemo is down close to 10-11, my thinking is they will reduce it...

matt2200

May 14, 2013

To: grateful_to_be_here, all

i take it for granted that a company able to pay 11 billion to buy out another company surely can afford to have someone keep taps on what people are posting in forums like this.

i appreciate your efforts to protect our privacy but when we post anything containing any details, i think it is fairly easy for those with inside information to figure out who is who..

we all should post with this assumption.

that's one reason i have been transparent with my study nurse and my doctor.

so far i have complied with all protocol and will continue to do so.

at least publicly.....;-)

matt2200

May 14, 2013

To: all

i have read comments about what happens at the post Tx week 12 draw and here is how i understand it from the paperwork we signed and other sources..

if you are UND at week 12 post Tx, they really do not tell you anything other than set up your week 24 appointment.

if you are NOT UND, you get the SUX-2-B-U letter ( i guess the clinic gets the letter and they call you), asking you to come in about 2 weeks later for another blood draw....

i think they want to be sure it is not a false positive..but if you are not clear after that 2nd blood draw, i guess it means the Tx failed.

matt2200

May 14, 2013

To: all

i wish there was an edit feature...the above is my understanding...please feel free to correct me or post additional information.

Willy50

May 14, 2013

Working so will be brief.
Matt is right. they do keep an eye on boards.
Back in 2007 several members at MH were contacted and told to cool it.

I was aware of it even a year or so earlier.

In that case....the issue was unblinding data.... which in a way.... most this info we post ire: this unblinded trial) is probably OK.

Be assured though.... they probably have people watching.
If it was true 6 years ago do we think it otherwise now?
Do you feel anything you post or PM on Facebook is private? Would you assume it to be any different here?

We know that our content drives the advertising here, the number of hits a site gets. What we do not know is how much of our content is private. I assume nothing is.
=============
Good luck to us both grateful on our 4 week draws tomorrow.

willy

grateful_to_be_here

May 14, 2013

To: Willy50

thank you Willy and I wish you the same - with luck we will both have reached before UDL tomorrow

I always assume nothing is private on the internet but felt compelled to ask those that have helped me with their knowledge when I asked. I also wonder if the coordinators have focused on some of these side effects given that until recently RIBA was mostly prescribed with Interferon - I draw a line of distinction in loyalty between the relationship between the study doctor who has consulted me for 12 yrs and his relationship with the sponsor. I think he treats my interests first - anything short of that would surprise me he has held my hand and comforted me all these years and ultimately facilitated my exceptance into this trial -

I just dont want to have a great liver and failing eyesight.

Willy50

May 14, 2013

The goal was to get well, not learn about some new infirmity. : )

Good luck to us both and us all.

~Willy

nobodyone

May 15, 2013

To: Willy50

I have been pretty fortunate so far, very little sides and I am on the RBV...4 weeks today. go to medline plus, good government site that has drug information on it. I would try to have better resources for any info I was to present to a dr. Any drug presents risks.

Good luck. You can always just quit the trial...I feel very fortunate to be participating in this trial...First time in 35 years and I am probably undetected now. Go for my blood draw this morning. Still doing yoga and one hour walks. I know of people who have been on RBV on 4 different occasions and still loves to read, has no vision problems at all. I hope you do well.

grateful_to_be_here

May 15, 2013

just got my week two bloodwork <25 (detected) at week 2

hemo dropped from 16 before treatment to 12.5 at week two.

liver enzymes at the low end of normal

all good news to me!

going back to ophthalmologist next week but eyes seem to be improving

matt2200

May 15, 2013

To: grateful_to_be_here

zackly' what happened to me and 90% or more of the others..congrats...your next draw i bet you are UND

i just tried to do some yard work...89 degrees...dismantling a pen the former owner built for ...turkeys, i think

i cut up some of the wire fencing, dragged it 40 yards up a slope twice and i am done in the AC now..that was it for me

i think about, here i am UND and i'll drop dead of a heart attack because i push myself like i did before Tx

nobodyone

May 15, 2013

To: matt2200

You need to listen to your body and rest more, it has been through a lot and you need more rest. The energy and feeling better will come after you quit the drugs and are getting them out of your system. I get energy and do what I can and then rest a little bit. Before we know this will all be behind us and hopefully we all will be SVR forever!!

matt2200

May 15, 2013

To: nobodyone

yes, i paced myself, completing one task, sitting in the shade, drinking water, i really took it easy yet just walking up the hill was hard.

in the past i would have just pushed myself..not now..no way while on these drugs..so i went and cooled off with a lukewarm/cool shower and sat in the AC...if i try anything more, it will be in the evening when it is cooler...one task at a time

Twinkle777

May 16, 2013

To: All

Hi I am new to this forum.I like it, its easy to follow.Im on the sofosbuvir and 5885 no RIBA and was just told I was undetected week 2. No sides yet.I had my isle28 test Done during screening. I think that's what it's called or close to it any way I keep asking my nurse what Is mine and she says they don't give that info. To her.:(

nobodyone

May 16, 2013

To: matt2200

Yes I think in the heat we really lose any energy we might get. It always wore me down before, probably even more so...one good thing----- When we sweat we are getting more of it out of our systems now... All toxins get out of your body when u sweat..I even take 15 minutes saunas now to get more out of me!,

Renee543

May 16, 2013

To: grateful_to_be_here

week 3 off meds. My eyesight is getting a little better too. Still have to use the drops. Considering that the meds stay in our systems for up to 6 mos., it will take awhile to start feeling good again. Can't wait!!! How great will that be? Still have low energy, so I think my hemoglobin is still low. Go in Monday for first draw since stopping. Guess I will know soon enough.
And I started taking all my supplements again, I think that will help. I also walk everyday but not as much as I did before. Just can't do it and like Matt said, don't want to kill myself with a heart attack, not after all of this.
Take care all.

matt2200

May 16, 2013

To: Twinkle777

welcome to the forum..i think this is one of the cutting edge threads on the Gilead ION trials as you will find...UND bt week 2 is a very good sign, better than the majority..i think it is safe to say you are also on your way to SVR'

nobodyone, i felt the same way..thinking it was good to sweat

renee, you are correct, riba stays in the system 6 months...men are told to not get anyone pregnant for up to 6 (maybe it is 7) months after one stops the riba...i was also told it takes 1-3 months for one to stop feeling the effects....all depends on the individual i am sure.

all i can say is everyone in these trials has reason to celebrate....it looks like the vast majority of us are attaining SVR

i am sure you will post your 20 May results once you have them. i am confident you will get the good news ..

TinaD76

May 16, 2013

Hi- today is my first day here. So many questions. My mom was recently diagnosed - geno 1, stage 3 fibrosis. She is 64 and only known risk factor was a blood transfusion she had as an infant- if that's where she got this she's had it all her life and not known.

I am wondering if someone can tell me the name of this study that is being talked about in this thread by Renee, Willy, and many others. I THINK I've found it on clinical trials and it says they are recruiting some in our area- the study number i see is NCT01701401 - is that the one everyone is talking about??What is the best way to try to get into a study- tell her doctor or email the contact person listed with that study on the clinical trials sight?
. We are beyond frightened and confused- she got a phone call from her doctor explaining the stage 3 biopsy results and recommending the triple therapy with incivek. A quick phone call though was not enough time for her to come up with questions and understand what we are getting into here. In addition to being so scared about the side effects she has NO health insurance. My second question is..Has anyone here gotten through treatment without any health insurance??She is supposed to meet with the nurse at the gastro/hepatologist's office to discuss charity care and drug company assistance for the actual drugs but it seems like with all the side effects and health problems it could cause (possible need for Procrit, etc...) it might be disastrous for her to undertake the triple therapy tx with no insurance. maybe she should wait till next year when she gets on medicare? Does medicare pay for these drugs?? I feel so lost and have no idea who to ask. I am thinking this study would be the way to go- no interferon or incivek side effects and it all appears to be paid for. She feels absolutely fine- should she wait for a study or the new sofosbuvir to actually come out, or at least wait till she's 65 and on medicare before undertaking treatment? Any answers/ thoughts would be so very appreciated.thanks
Christina

Willy50

May 16, 2013

To: TinaD76

working and must be brief.

Go to clinical trials.com. Use the search engine, type in Sofosbuvir, 8 and 12 weeks. I think that will get you to a trial, or sofocbuvir, ledipasvir.

You should be able to fiind trials.... search the location, you may be able to deduce or check the hospital in your area.

If so contact the gastro area of a hospital see if they do these trials and try to line up an interview.  Sometimes you can find you city mentioned here or other foums...(you can also use search) to find the name of the hospital.... If you see a member, you may also PM them and ask the contact person or number for trials in your city.

How she feels is not a good gauge of health. there will be openings for many types/stages of participants

Age can play a part. Look at the part of any trial.. It may have age limits.  The range from company to company as well as other factors which disqualify people.

Generally.... the price is right and the care is excellent. There is an element of risk but you are monitored closer than many doctors do.

Got to go, I hope this provides a start.

ION-3 is this;
http://www.clinicaltrials.gov/ct2/show/NCT01851330?term=Sofosbuvir%2C+8+weeks&rank=1

It is now enrolling.... the one you listed *may* be full.  Locations offered, probably the same.

~W

nobodyone

May 16, 2013

To: nobodyone

Just got to look at lab 2 weeks ago, there is a reason I get tired after 3, the blood counts are lower for HCB< HCT< RBC..She said if gets to 10 i can reduce RBV...I want to do that badly. Also have a question, at the beginning they said Gilead would pay those who are in the trial..I said that is not why I am here I want to be undetected..didn't mean I didn't want the money, that would pay for gas since I live 90 miles from trial location..so when do you see the check...the end or middle or when.

Thanks..hope all is well..she said if u remain undetected at 4 weeks after u r considered cured..she also said you don't develop a resistance to the Sofosbuvir and 5885..i asked because i wondered about t hose doing the 8 weeks only... Thanks..

nobodyone

May 16, 2013

To: nobodyone

Meant to clarify 4 weeks after you stop meds, if u are undetected, you are considered cured..

Twinkle777

May 16, 2013

To: All

I have been reading the threads and it looks like Gilead is looking closely at cure rates and thinking of the lab rats hence when they reduced the 24 weeker to 12 weeks soooo I think if they feel 12 weeks can definitely cure they will drop us down.....I know with some it looks like they put them back to 24 weeks but they must of seen something that they felt it would be better for some to stay on 24 weeks.So I feel they are taking good care of us.....

Twinkle777

May 16, 2013

To: Nobodyone

I wasn't aware if you are 4 weeks EOT you are considered cured that os soooo cool.I hope I read it right.

grateful_to_be_here

May 16, 2013

To: Willy50

how did it go yesterday for you?

Twinkle777

May 16, 2013

To: Willy50

I saw you mentioned age .They are doing a study in my clinic the 8 week one.And I asked the nurse if age played a part in getting accepted and she said no.....Sooo I think that is a good sign .They must think these drugs are pretty safe since older people do have more side affects with drugs...and I don't think they would want to ruin their numbers.....

matt2200

May 16, 2013

To: all

i swear i am going to have a heart attack...

i get to my phone and see a call from the hospital...i was in for week 10 blood draw last friday...so i am thinking........bad news?

i listen to the VM and she says "we want to know if you can come in the afternoon, instead of the morning".

so i call her and told her, it might be a good idea when you call those of us in the study group and you reach our VM, to leave us a message ...you scared me to death....lol

nobodyone

May 16, 2013

To: Twinkle777

That is what coordinator said, but I know some people who have treated don't relax till they get the SVR6..for 6 months...I imagine we would always be a bit nervous till more is known, that somehow it might be laying dormant in there. I h ave heard of some who were on Interferon and the disease came back after a 12 months svr..we need to know more about this virus..BUT I have never seen it be killed as fast as they are doing it now..and that could be a really good thing. We all want SVR for LIFE!!!

Twinkle777

May 16, 2013

To: nobodyone

So true ...It's just hard to know what is best.At least we are on the 24 weeks.I also have heard where it comes back after SvR 12 months...But on other meds............Those heppies must be strong critters. But then and again this medication has to be really strong to be knocking them down so quick.
Really strong or they just got the right mix, And it sure seems soooo.

Willy50

May 16, 2013

It was a long day and a long drive. the day took about 13-14 hours.  Up real early, morning traffic jams, some paper work and then some more, ended up leaving late.

The only critical labs I had a few days earlier.  As I posted a ways back; still detected, but below quant<25 copies

Alt  130 baseline, 43 @ week 1    and 21 @ week2

Hemoglobin baseline 16,    14.8 @week 1 and   12.5 @ week 2

I seem to be adjusting to the HGB and I have started eating some teeny small steaks.
While this should not help......one nurse recommended it and I figured.... why not try?  I did it and seemed to feel better.  Even if it is placebo, I'll take it.

Essentially.... I dropped 25% in 2 weeks... and the nurse said she saw a reduction in my future. I said...I would like to clear before I consider that; I don't want to do it pre-emtively unless I fall below the cut off range.... which I think is 10.

Because I do  physical work and I was mentioning some issues she more or less offered to reduce it.....I think I am OK for now.  I will call friday and check my Wednesday reading and decide from there.

I actually had a great day today and wasn't impaired at all noticeably.  I seemed normal.  Who knows?

I actually..in spite of my dropping HGB.....I am finding I am feeling better and better.  I'm a stage 2 and my ALT's are now normal....so I may be seeing some repair going on. I am sleeping better and just have the juice or interest to do some things a few months ago I would not have.... but maybe it is sunlight, warm temps and bright prospects. : )
I felt great today.

Twinkle..... Yes...regarding the comment by the nurse, indeed it may be true for this particular trial, but it is not nor has it been the rule for past trials and compounds. I've seen 60, 65 and 70.  It's always important to read the clinical trials page and see the inclusions and exclusions.

I think since i was recommending a few possible trials she may not have quite qualified on all. I just wanted to point out age can be a factor and the clock was ticking; maybe not on all trials as you pointed out correctly.

willy

Renee543

May 17, 2013

To: nobodyone

During the Tele trials last year, I got a check about a month or so after I left the trial. (Left early). I had forgot all about the money and remember being surprised to get the check. I am fortunate because I only live about 4 miles away, so the money was no big deal but for those who have to travel each time, I can see where it would be.

nobodyone

May 17, 2013

To: rivll

I don't understand why they don't really just reduce the RBV then so that blood counts do not drop, etc and there is less risk of anything bad happening ESPECIALLY if the RBV isn't needed anymore. I don't get it...maybe it must be needed then? I wish we could know this..

nobodyone

May 17, 2013

To: Willy50

Hey I tried Bison-ground and it helped me feel better. That big buffalo blood you know. It is healthier than beef. Will see if it helped my blood.

Hey Twinkles...there is a 75 year old young female doing the 8 weeks trial...she doesn't know which arm she will get..she is young at heart.very much so.. fYi

matt2200

May 17, 2013

To: all

i have been taking a multi vitamin as well as B-12...still feel like i sprinted 100 meters just running after the dog

gerard11

May 17, 2013

I just finished my 20th week of treatment. 6-13-2013 is my last med day!!! That will be my week 24. As I have posted I am a post liver transplant ( 5-2010) on the Gilead Sofosbuvir and RIBA trial. 1 year after my trans my new liver was ravished by the Hep C. Very fournuate to be in trial. Und in 4weeks.
I first treated in early nineties. Have tried everything that has come down the pipe to clear this virus. I must say without hesitation this is by far, and I mean by FAR, the best treatment I have been exposed to. I will know in a few months if I am SVR12.
I too have felt so much better. I feel like I have reclaimed some of my older healthier lifestyle too, with this medacation. My sides effects have been very minimal. It is my understanding that there are less than 40 worldwide of us post transplant, non responders, cirrhotics on this trial. If I can clear, (and I believe we fall into a hard to cure catorgy) my heart and mind will rest assured that this awful diease will have meet its match!!!!!
God bless us all afflicted with this virus, and a special shout out to Hector hoping his very heavy burden can lessen soon and make a very much deserved comeback...

mzkity

May 17, 2013

To: gerard11

I'm wishing you all I have in me gerard!! You've spent a good portion of your life battling this. I hope this is your last round! Here's to you:):)!!

Twinkle777

May 17, 2013

To: nobodyone

The trial center I am at gave me a Visa card and they deposit around $40.00 the day after each visit for gas ......which Comes in handy since I have to drive 60 miles to and back from clinic so 120 miles round trip.

Willy50

May 17, 2013

Interesting pay method. I have goten 4 checks so far; started mid april. Will switch to auto deposit soon; been too busy.

I think each institution must have their own method. It's over 500 miles/ trip for me, still well worth it money or no.....

nobodyone

May 17, 2013

To: matt2200

Hey wanted to thank you about the mention of your weight and RBV..My blood count dropped to 10.6 but they said still couldn't reduce my RBV. I wrote to her I thought that due to my BMI being 20.3 and weight 120 and 5'6" tall I might be able to cut down...so i said is there anything else I can do to help...she called me as soon as she read that and said I could cut my dose down!!!! That will make huge difference I hope...now my dose is 800 a day!!! this is doable for sure..You helped me and so did Dean on another site...Yea!!!!!!!

Twinkle777

May 17, 2013

To: nobodyone

Yaaaa! Sooo glad they cut your RIBA down......Now to feeling better!. Are you undetected now?
have a wonderful day !

nobodyone

May 17, 2013

To: Twinkle777

I should be won't find out till next Thursday or Friday last draw 2 weeks ago was <25 but detected... oh i feel like a ton has been lifted from me..although i would like to have No rbv..but this helps...maybe 800 isn't too bad i amhoping!!

Twinkle777

May 17, 2013

To: nobodyone

Soo glad you e mailed her back with all your information..Seems like they may be so busy at times that they don't really process everything in front of them ...We have to be out own pt advocate ..

matt2200

May 17, 2013

To: nobodyone

glad the info helped.... i have read where some people self reduce the dose but still keep it therapeutic, hopefully.

it does appear from all the info so far, riba may not be necessary for even the most resistant.

abt the money..i am paid $44 a visit and the check usually comes about a week later. it is sent to my office's PO box and i see it when i pick up the mail, which is about once every 2 weeks so not sure when it arrives. nice touch to pay for fuel.

i am very lucky, approx 30 minute drive to the clinic

Twinkle777

18 hours

To: All

Does any one know why they don't do a third week draw ,It seems like the first 4 weeks are somewhat crucial .Dont understand rational on that....

nobodyone

17 hours

To: matt2200

Do we know how much the dose can be reduced? Could I get I more pill reduced to make it 600 total? I am a light weight. It doesn't take much to work for me! I am soooo thankful I read your note about how you mentioned your weight and then they reduced it. Had I not mentioned my weight and bmi it would not have been reduced. I haven't received any check yet but since I am going through big hospital maybe takes longer. I don't want to have to ask that is for sure. I had to fight like hell to get in this trial for 2 years.... But it worked out great, They didn't have Gilead then! I just now am starting week 5 soon. On day 30! You are getting closer to the finish line! How cool!!

Renee543

17 hours

To: gerard11

You did it Gerard, so happy for you. You have put up the big fight.
I also, go Monday to for my first blood draw since off the meds a month. I am quiet apprehensive about it but still optomistic. Hope I don't get that call back.
I also, pray for Hector.

gerard11

15 hours

Renee if you look back at this thread you started you will see who was the first to chime in on your decision to treat . It was Hector!!!! He gave you a well reasoned, balanced, personal, and direct response. I believe I was the second response. I said if I was you I would get in the car go to the trial and camp out if that's what it took, and mentioned ( I believe ) that you had won the lottery and you weren't aware of it yet!!!!!! The point was to try and get you moatived to sign up for your trial.... So glad you made the choice. My fingers crossed and prayers with you. This is a great thread you started for us on trials. It is so current and so informative. Where else in the world could we as a group exchange ideas and thought, give encouragement to others, than here. We are all so fortunate to be a part of this forumn. I am convinced that it has saved my life.... Thanknyounto all who participate!!!

matt2200

9 hours

To: gerard11

that' sounds right, if my memory of reading the threads is accurate..hector, gerard, gsx, renee, all here when i found this site and now we have some newer people.

the best feature? most, if not all of us are, or will be soon, free of this virus and remain SVR...

this reminds me of learning to skydive..there is a point where you start to trust your equipment (like the parachute is going to open, every time) and your ability to handle it if it doesn't.

i feel like i am beginning to trust i am HCV free and will remain so ... i feel more confident about my future, this black cloud that has been following me around since i was aware of it in the 80's...gone?  how cool.

one other thing i have not mentioned...this past winter, i developed a mild case of what appeared to be psoriasis ....i mentioned it to the clinic, may have pulled up a pants leg...(on my shins)..

i was evening tanning as treatment  (at the time i was living in a country with a long and dark winter)..

when i started the study, the psoriasis had already calmed don a bit and showed some healing, i am convinced the very mild patches i have had in the past during winter (no sun) were a result of the interferon -riba treatment..

now it it appears completely healed..i mentioned this to my study nurse and she guessed it could be a "side effect" of the drugs or some other enzyme that may be responding to my newly healthier liver...

Gilead may have found a cure for psoriasis?  ;-)

gerard11

4 hours

To: matt2200

Matt2200, I too have those thoughts of trusting about HCV free. I have been fooled so many times that I am still very cautious!!! I must admit that this is by far my best feeling that I have ever had!!!!! I felt better the very first 3 days!!! I told my nurse coordinator that I was feeling the best I had felt in over a year. I am sure she thought I was a little optimistic.... Then my 1st blood draw came in and my viral load went from 3 million to 163!!!!