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Hep C Discussion Forum -> Clinical Trial Participants -> ION-3 trial
Post Info TOPIC: ION-3 trial
Misfis


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RE: ION-3 trial
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Hi Li'l eddie

I'm on the same trial combo you are on--the 12 week sofosbuvir and ledipasvir with no riba.  Little to no side effects. In fact, I feel as good if not better than before.  I'm at the end of week 4, and have not yet heard any lab results, but probably will this coming Wednesday.  Would love to keep tabs and find out how your labs and results are.  Good luck to all of us! This forum is a blessing!  So many of us!



__________________

genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!
Ckncali


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Congratulations Randy. Glad to see the VL is on its way down. Bet you are UND by week 3 but they don't check that week so have to settle for week 4. Good luck!



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
HR


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Hey everyone,

Week 2 VL came back less than 25.I'm hoping for being UND on my week 4 test which is Wednesday.

Take care

Randy

 



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
sofi moore


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Hey all, I think the fatigue is getting better! For the past few days, I have had more consistent energy. This makes me happy. I can also tell that today will be good, too. Even when i have no energy and I get grouchy, I try to remember that this is much easier than other treatments which I have watched friends endure for 11 months at a time. I have to stay grateful.

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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)
Ckncali


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Hi Sofi, I hope you get the same news I got on your first week results. Best of luck to you.  It is really amazing that these drugs can clear this thing in one week. When they told me I asked them to verify that it really was my lab report, I could hardly believe it. I hope you are feeling good. This fatigue sure can be overwhelming at times. Let us know when your results come in. Take Care.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Ckncali


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Hi Eddie and welcome to the group. I want to wish you best of luck on your upcoming lab reports. That is great that your symptoms are fairly mild. Let us know how your week 1 results go. 



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Ckncali


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Hi Matt, Thanks for the suggestion. I edited the signature on my profile and that seemed to work. How are things going for you?



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
HR


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Hey Eddie

Im on the same trial as you and am having no side effects up to this point. I eat something when I take my pill in the morning and its worked out great. Lets hope it stays that way.

At any rate, good luck and keep us posted on your results.

Take care

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Lil Eddie


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Just wanted to say hello and add that I am also in the Ion-3 trial. I am in the 12 week Sofosbuvir/Ledipasvir WITHOUT Ribavirin arm.

Started June 4th. This is my 18th day. No real side effects except some lack of energy in the afternoons and a metal taste in my mouth once in awhile.

I have been drinking a fruit and yogurt smoothie with the pill in the morning and have had no problems with the medicine. I should be getting my 1 week VL hopefully early next week. Hoping for good scores!!

 



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Rose


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Hi all looks like this blog spot is chalked full of good news! its so cool to read about the numbers going down. Im on the 8 wk ion 3 with RIBA. I started 8 days ago and haven gotten any numbers except my baseline so far. I just wanted to chime in on the party. Until next time keep it up!

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Currently in the ION-3 with Riba 8 wks,  started Jun 13- Baseline VL 1.8m- AST-40 ALT-46. Wk1 - UND,  Wk2 - UND, 
sofi moore


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And Karen, thanks. It is better if I eat an actual meal. Thank you and good luck!!!



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)
sofi moore


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Hey Ckncali and all,

 

That is awesome!!! My first week draw should be in this Friday(tomorrow) or Monday. The nurse is going to call me. I hope it's as good as your news. She said by now I probably have cleared it. That is so amazing that you cleared it after one week!!!! Gives me hope!!

 

Yes, I wear contacts but am wearing glasses. My eyes were drying out and then running. I was rubbing them constantly. I also have been itching off and on. The nurse told me to drink more water and I already drink a gallon a day. And fatigue--yes. I call those spells "falling into a coma," because that is what it feels like. It has happened to me at work and freaked me out. I feel like I am going to fall out and I get dizzy during those times--like the room is breathing. Then it eventually passes. I am better if I sleep at least nine hours but that is rare. Today was a good day. Minimal fatigue, however, I did feel irritable most of the day.

And Kellie, thank you for the warm welcome!



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)
Matt Chris


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Hey Ckncali

That is fantastic news, one week and its allready UND WOW!

BTY one may want to put your vitals (geno type & other data) in your profile , so it appears in the reply box.

Just a thought

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Ckncali


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Thank you Karen and RH. I hope you all are doing well.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
HR


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Hey Ckncali

 That is great news. Keep doing what you are doing.

Take care

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Karen


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The news we all love to hear!  Keep it coming!  



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Ckncali


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Hi Everyone, I found out today that at my 1 week blood draw my VL was undetected. I just wanted to let you guys know. Thank you so much for your support. Got two weeks done and six more to go. 



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Tig


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I agree that it's not only great to hear from each and every one of you, it's important. The importance lies in the attention to detail really, as we're all following each other's progress. Whether it be dual, triple or the new ION therapies, each of us are watching the success rates not only of each other personally, but the rate of success of the various treatment therapies. If our personal therapy isn't as successful as we'd like, it's very important to see just how successful the other forms of therapy are, because we may well be involved in that same treatment in the future. So it's important to share your story! Everything matters!!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Kellie


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Welcome Reg & Sofi - The folks on this forum are like family. I'll be looking forward to seeing your progress



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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Ckncali


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Hi  Everyone,

I just wanted to say good luck to everyone on their upcoming lab reports. Looks like several people are waiting to hear results. Hope everyone's VL drops dramatically and that your symptoms are few and far between.



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Ckncali


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Hi Sofi,

Good to meet you.  I want to wish you good luck on your trial and give you a warm welcome.

We must have had about the same start date. i also start my 3rd week on Friday. Since we have the same symptoms i think it must be the RIBA.

Do you wear contact lenses? I quit wearing them for the trial, it actually is not possible for me to wear them too because my eyes are way too dry. Without the contacts my eyes are still bothersome but manageable.

Yesterday I got hit by overwhelming, sudden, fatigue around 3pm that put me to bed. It lasted about two hours, much worse than my normal fatigue. There was no way I could drive a car or do anything during it. The good news is that the extreme fatigue only lasted a couple of hours, then I was fine.

Insomnia is also getting worse.

You mentioned feeling upbeat and better on some days. I also noticed even during the first week at times a wonderful feeling like I was no longer sick from this virus anymore. this good feeling would last part of the day and then the fatigue and drugged feeling would kick back in but I think it means the drugs are working and getting rid of the virus.

Good luck on your two week checkup and hope your symptoms don't get any worse.

Take care

 



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Karen


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Hi Sofi,

I am on the same treatment (wk9), started with the same issues...I discovered if you eat a very hardy meal before taking the meds-the fogginess is minimal.  Eating small "healthy" snacks/meals throughout the day seems to reduce the fatigue.  Almost feels like a sugar drop (friend is diabetic and she gets that way sometimes).

Wish you well...K



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
sofi moore


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Hello all. I am on week 3 sofosbuvir/ledipasvir with ribavirin. Well, tomorrow is the beginning of week 3. I go in for a check up tomorrow. Not sure if my labs from last week will be back or not. I relate to Ckncali-- I suddenly become very fatigued in the afternoon and my skin sometimes itches, too. My eyes have been dry as well. And I feel sort of medicine heady all the time, like there is a slight fog between me and the world. Not an extreme fogginess, just not clear feeling. Some days are better and I feel very up beat. I am glad to hear all the good news! It is giving me hope!



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)
HR


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 Hey 52baddog,

They did the same thing to me. I was expecting my results when I went in to get blood work my 2nd week. I called on day 10 and they gave me my results over the phone. You should be able to do that too if you are really wanting to know. I wanted to know immediately. Good luck and lets hope for a UND on your 1st week blood draw:)

Take care

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
52baddog


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Well, today they didn't have my viral load viral load result yet. I guess it takes about 10 days or so. But, my alt was 19 and ast 29. My 

baseline viral load was 658000. I won't know till the first week of July what my viral load is. I am hopeful.biggrin



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
52baddog


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Hi Randy: 

I am glad about your test results, I will get my one week test results tomorrow.disbelief



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Karen


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What a miracle we are witnessing!  Bravo!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
HR


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 Hey Ckncali, I hope you get some great news when your blood work comes back..

 Hey Zlikster, If I find a bottle I will let you know.lol

 Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Zlikster


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wow, impressive results Randy! If you see nurse dropping by accident a box of Sofosbuvir/Ledipasvir pills, just pick it up and let me know ;-D




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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Ckncali


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Hi RH, WOW! From 15mil to 125, that is so inspiring. Congratulations. The liver enzymes going down so quickly too. That is great. I am also on ION3 with RIBA, just had my week 1 blood draw on Friday. Seems to take about 10 days to get VL results. you will probably be UND by your 2nd draw. Best of Luck To you.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
HR


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Thank you Jill.I am more than pleased with my 1st week results.I should know my 2nd week numbers this coming Friday as they are saying its taking between 7-10 days to get blood work back.

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Cinnamon Girl


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Great results, Randy, and after only 1 week, that`s fantastic!  You must be so pleased to have got into this trial! 

Thanks for the update...keep us posted!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
HR


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Hello everyone,

I got my results from week 1.

Vl Baseline 15mil 

vl 1 week 125

alt baseline 175

alt 1 week 26

ast baseline 106

ast 1 week 26

 I hope everyone else is doing well and hanging in there

Take care

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Tig


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Geez! I'm spending this entire afternoon vomiting, horrible sore throat, blah, blah, blah! You all know the routine. I'm only at week 4 of Triple Therapy, and 8 more months?  When I see the results other people are having, like Reg here, makes me feel like giving up all of this. Why are we doing this to ourselves when there is treatment like this just around the corner? Damn I feel bad today! 

Im very happy for you Reg! That must really blow you away! Did you ever try any of the other treatment regimens before starting this study? I was recently turned down for one of these established studies because my doctor destroyed my records after 5 years. Good luck on the rest!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Ckncali


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Hi Reg, I also am on the ION3 trial, 8 weeks with RIBA. Congratulations on going UND so quickly. Your results give me great hope. I go in today for my week1 checkup. I am having side effects. Very dry and irritated eyes, mild itching, afternoon fatigue that comes on all of a sudden,  a weird feeling in my head, and very thirsty. But also felt very well at times like I was no longer sick at all. Sofosbuvir is really a miracle drug if it can rid us of this virus so quickly. I am so thankful to be on this trial. Good luck to everyone.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Matt Chris


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Hey RG

That is truly  fantastic news, these news DAA's are mighty powerful, but we still have to be good to our bodies especially after treatment ends.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Cinnamon Girl


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REG wrote:

Hi all -

Wanted to update everyone on my progress so far on the study.   Got my 1st viral load results just now - after taking the drug for 8 days I am undetectable!!! I can't believe this stuff!  I have been taking it now for 19 days and have had almost no side effects. For the 1st week or so I was getting a mild/moderate headache intermittently, mostly in the afternoon and now not at all.

I hope they get this to market soon at an affordable price.

Wow, Reg, that is amazing!  Congrats, what a great result!  biggrin  Thanks for sharing this excellent news!

By the way, you can start a new thread to post your updates on, if you like...just click on `start a new topic` at the top right hand side...



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Biggyb


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Great news, no side effects, i like it.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Zlikster


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Hi REG, from 4mil to UND in 8 days??? ;-D wow great result man!

how are u Randy doing?

u lucky folks



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
HR


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Reg

That is awesome news. Keep doing what you are doing.

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
REG


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Hi all -

Wanted to update everyone on my progress so far on the study.   Got my 1st viral load results just now - after taking the drug for 8 days I am undetectable!!!  I can't believe this stuff!  I have been taking it now for 19 days and have had almost no side effects.  For the 1st week or so I was getting a mild/moderate headache intermittently, mostly in the afternoon and now not at all.  

 

I hope they get this to market soon at an affordable price.  



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HR


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Hello everyone

i go tomorrow to get my first week blood test results. I've been on treatment for two weeks now and still feel good. Im hoping for some good results.

 I will update tomorrow after my appointment.

I'm wondering how the others on this trial are doing?

Thanks

Randy



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Rose


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So happy to hear that  you aren't having any side affects.  I have my fingers crossed that in the near future you will be UND! keep it up you have a strong start - Positive attitude isn't everything but it sure helps !!

Namaste

 



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Currently in the ION-3 with Riba 8 wks,  started Jun 13- Baseline VL 1.8m- AST-40 ALT-46. Wk1 - UND,  Wk2 - UND, 
Misfis


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Hope you saw my last post....I need to read the instructions about using discussion forums!   I'm on my fifth day, the sofos/led 12 week one.   Had a slight headache yesterday after I took my pill, but went away with a little aspirin.  I feel great, and like I'm not on anything new!!  Sounds like you aren't have any side effects, either.   Hope it stays that way!



__________________

genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!
Misfis


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RH wrote:

Hi Misfis

 What arm are you on? I took my 5th pill this morning and I feel good. I can tell I'm on some meds but in a positive way. Lets hope that feeling lasts for the next 11 weeks.

So how are you feeling?

Thanks Matt and Zilkster for the encouraging words, much appreciated.

Take care

Randy

 I'm on my fifth day.  Started last Wednesday--same as you it seems!  The sofos/led one 12 weeks.   I had a slight headache yesterday that went away with some aspirin.  But aside from that, I don't feel any different than I did before I started taking the meds.



__________________

genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!
HR


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Hi Misfis

 What arm are you on? I took my 5th pill this morning and I feel good. I can tell I'm on some meds but in a positive way. Lets hope that feeling lasts for the next 11 weeks.

So how are you feeling?

Thanks Matt and Zilkster for the encouraging words, much appreciated.

Take care

Randy



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Misfis


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Me, too, on the ION 3.  Just started last week in San Francisco.   Love to keep in contact with you about this!



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!
Matt Chris


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Hey RH & REG

Wishing you the best on your ION-3 Trial.

Recommended reading, all the other trials that are on the site.

They will give you a sense on how to travel the future road that you are on.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Zlikster


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good luck RH thats a great trial to be on!

 



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
HR


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Thanks Karen, I appreciate that.



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
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