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Hep C Discussion Forum -> Clinical Trial Participants -> Is anyone else in the Ledipisvir trial...I am on it now
Post Info TOPIC: Is anyone else in the Ledipisvir trial...I am on it now
Beacon


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Is anyone else in the Ledipisvir trial...I am on it now
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Frannie you are on a mission to rid your body of a deadly virus. You have to complete this. I think you need to do some reading up on what some people in here faced in the days of old on the notorious Triple Therapy. I have not been treated yet and I can only imagine what they had to go through before. It's nothing like that now. Yes there are some side effects with the new treatments but they have got to be like a walk in the park after dark and not like a walk through hell. Count your lucky stars you don't have to inject interferon. Take a deep breath and don't let anything stop you. It's your time for SVR!!!



-- Edited by Beacon on Monday 13th of October 2014 01:56:15 AM

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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 
frannie58


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Thank you for answering. Im experiencing headache. Feel like Im not here, but i am here. I have had so much intestinal distress right before the treatment that the Doc had me go get a Hida Scan to check the Gall Bladder. With 30% being normal mine was at 24% They grade our GB on rate of bile expulsion. So I truly believe most of how crummy I feel is from the intestinal issues that come with the Hepc itself.( Correct? ) I mean in my tummy area. I know the headache and feeling weird stuff comes from the meds. My surgeon who is also up to date on HepC said he wont take my GB out until I am done with the treatments. I keep asking myself If I can do this. Can I hang in here? I pray and ask the Lord to help me daily. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
Groupergetter


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Frannie, seems like not too many out there on this trial.  Please keep us posted on how you are doing, side effects if any, andychanges you notice, labs, etc.  There are quite a few (including me) that wish they were as fortunate as you.  Great group of people here many, hoping to hear what you have to say about this combo.  Thanks  G



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
frannie58


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Ledipisvir? Has anyone else been on this in a trail?...I am on it now
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I know there has to be some people out there somewhere that has been on the Ledipisvir and sovaldi l pill combo...Oh where oh where are you? really need someone to talk to about this.



-- Edited by frannie58 on Thursday 25th of September 2014 10:40:45 PM

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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
frannie58


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RE: Is anyone else in the Ledipisvir trial...I am on it now
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I sure will...I hope anyone else who has been on this will chime in. Thanks. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
angelseven


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You go Frannie!!! I know you will be cured    smile  Keep us updated weekly or something, please girlfriend, I am hoping to do this treatment in december

 

Thanks and good luck,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.
frannie58


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I would be happy to let everyone know how I am fairing on this treatment..going in for my first week this friday. biggrin  If you know of anyone else who has been on this please send them my way. I need someone who has been there and done that so I can have a treatment friend. Thank you. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
frannie58


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Bills wrote:

Im so dumb with the forum etiquette.. I wanted to post Bills quote for me to keep everyone posted on how I am doing. I think I messed it up..I wanted to say yes I sure will under his comment. Sorry. 



-- Edited by frannie58 on Thursday 25th of September 2014 12:32:37 AM

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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
Gracie


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I wonder when it will be approved in Canada? Anybody hear anything about that? I want to explode the dragon and drop it like flies or what Tig said.... Lol. Ready for the final fight! GRRRRRRRRRR.....



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Groupergetter


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frannie58 wrote:

Is anyone else here on or has been on the Ledipisvir trail? I am on the Led/sofo trial without riba for 12 weeks..5 days in. Im looking for info please on how you felt on it..side effects. I have headaches, a bit dizzy. I feel like I am here but not here...feel weird...does this make sense? 

Thank you for any and all info.

 

frannie

57 yrs old..diagonosed 4 yrs ago. Fibrosis stage 2.  Geno3



-- Edited by frannie58 on Wednesday 24th of September 2014 01:31:27 AM



-- Edited by frannie58 on Wednesday 24th of September 2014 01:38:02 AM

 

No, but I wish I was biggrinbiggrin.  Good luck in your treatment,  Hoping and praying you get SVR,

 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Tig


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Hey Bill,

Does that mean now that S/L is due for release that you're back? We missed your daily contributions here, I'm glad you're back! This will be a welcome and final battle for so many of you, new and experienced alike. It's going to be a lot of fun watching the SVR rate explode and the dragons dropping like flies....

Tig



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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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Bills


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I was staying off the pages here for a while because all I did we talk about this day coming.  I knew when I start to see Sovaldi/Ledipasvir in a thread title The flood gates will open and this thread will go viral. ( no pun intended ) Lol.  Hoping a year from now hep C will wiped off the list as a life threading condition.  SVR's are on the way

Bill S




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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

pl1952


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I was happy to see your post too, Eddie that you feel fine after a year!  So encouraging!  There are a few of us here who are waiting for Sovaldi/Ledipasvir to be approved, including me.

Hi Bills, my appointment was pushed back too to December so whatever "kinks" there are in getting these new meds can all be ironed out, I was told before they write up the prescriptions, just like you.  I've been waiting since February and, as well, was disappointed, but the way he explained it it just made sense...

Let us know how you're doing Frannie!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Bills


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Hi Everyone.

Thanks for posting Frannie, I heard nothing but good news about this one

I was counting  days "16 days left October 10th"  FDA approval on  Sovaldi/Ledipasvir.

Thanks Lil Eddie it's encouraging to hear from someone who has done it with success. I am a Geno 1a with cirrhosis treated 3 times all relapsed. Could you share your Geno type etc. just want to get a comparison  I'm being told theirs a debate on the 12 weeks as a standard TX. After all some of us had been through for me 12 weeks with little side affects is a dream. If they let me I would do more to be sure.  My last check up Sept 17th the Dr said Oct. 10th is the target approval date.

 He said there are some other usual final steps before he can write the scrip. Like they haven't named it yet?  He's making me wait next till visit end of November.

I was a little disappointed buy heck my last relapse was Feb 2013. This has been like prison time. I'm getting used to it LOL.

Fran, Could you keep us posed on your progress. There is a lot of us on here waiting for this next fight with the dragon. And we want to cheer you on.

Thanks everyone

Bill S   



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Lil Eddie


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No side effects one year later. I am enjoying life and really don't think about Hep C anymore.

 

Everything will be fine so rest easy and make sure you take your meds everyday!



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frannie58


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Tig, how do I know if someone will get a comment i made to their comment?  Like the one I wrote to Lil Eddie? Will he know that I wrote a reply to him? Im anxious to get his reply to my reply..LOL



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Tig


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Hi Frannie,

Welcome to the forum! I removed that double post you left below, no big deal. You're doing fine, it takes a time or two to get comfortable posting here. There are many of us that are here to help, so ask anything that comes to mind. You're on a fantastic protocol and should do very well on it. It's the newest silver bullet against HCV and you should be very encouraged! Good luck!

Tig



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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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frannie58


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Matt, thank you. I think I posted a reply to lil eddie to you...I am new to forums. I have no idea what i am doing. I am a little anxious about these things. I hate to "feel weird" I just need reassurance that I will be "ok". This is an efficacy trial Through the Rockland Group of Johns Hopkins Hospital in Baltimore. It does not have a name. They are doing this to prove that 12 weeks of Led/sofo without riba is as effective as Led/sofo with riba for 24 weeks. I not only wanted to do this for my own life but for others who will come after me. I am seeking reassurance and compassion and prayers. Thank you. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
frannie58


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Lil Eddie, thank you so much for your reply. I am only on day 6. I do have some tingly sensations. Headache. Im such a sissy. I "feel" everything in an intense degree. I have always been a very low pain tolerance person. I am trying very hard NOT to focus on this but I am alone most of the day everyday. Hubby works and our last child just got married and moved out. Have you noticed if there are any lingering side effects that you have one year later? Are you well and enjoying life? In this gives me hope. Thank you. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
Lil Eddie


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Hi Frannie,

 

I was on the exact same combo trial that you are on now. I had cleared the virus by week 4 and finished my 12 weeks back in Sept of last year. I remain virus free one year later.

 

My side effects were minimal with being tired all the time as the most pronounced side effect. No headaches or anything like that. I did have a metallic taste in my mouth for the first couple of weeks.

 

Good luck! That pill combo has a 95% cure rate so you should be Hep C free in just a few weeks!

 

It really is a miracle drug combo!!!!



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Matt Chris


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Hello Frannie

Welcome to the forum, you have found a good place with people who care and have great insight into all things HCV.

We have many members that have been on various HCV trials including the meds you are on check out the Ion3 trials, most have finished. You are one of the first in this new trial that I know of. BTW what is the name of your trial and how long is it.

Hope we can help.

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! 
Isiscat2011


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Welcome, Frannie:

Yes, this should be a very good combo.  I am also awaiting its FDA approval on October 10th.  It is marked on my calendar and I'm counting the days.  I expect there will be some side effects; just hoping they are not too serious.  Medication often makes me feel "weird"  so what you described makes perfect sense to me. Headaches are a common side effect of Sovaldi.  We have another member who got some headache relief by drinking coffee.  Whatever works. Be sure to stay well hydrated; drink lots of water.  

We have numerous members here who have used Sovaldi but only a few that have used the Sovaldi/Ledipasvir combo since it is not yet FDA approved.  It is only available via clinical trials in the US at the moment.  We do have a member from England who is presently on this combo (plus Ribavirin).  

Keep us posted on how you are doing and don't be shy about asking questions or giving your opinions.  Offering my opinions is one of my favorite pastimes whether asked for or not.   smile



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
frannie58


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Thank you. Yes I sure do hope i can connect with someone who has been on it in trials..I just dont feel real great..5 days in. Thank you. 



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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
pl1952


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Hi Frannie, Welcome to the forum and thanks for sharing with us.  I, as well as quite a few others here, are waiting patiently to be treated with this treatment which I understand is quite effective with very very high success rates of eradicating the virus.  I look forward to hearing you share about your experiences with it, since I don't know much about its symptoms.

But hang in there -- a lot more knowledgeable peeps will be coming through to comment and welcome you too!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
frannie58


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Is anyone else here on or has been on the Ledipisvir trail? I am on the Led/sofo trial without riba for 12 weeks..5 days in. Im looking for info please on how you felt on it..side effects. I have headaches, a bit dizzy. I feel like I am here but not here...feel weird...does this make sense? 

Thank you for any and all info.

 

frannie

57 yrs old..diagonosed 4 yrs ago. Fibrosis stage 2.  Geno3



-- Edited by frannie58 on Wednesday 24th of September 2014 01:31:27 AM



-- Edited by frannie58 on Wednesday 24th of September 2014 01:38:02 AM

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Geno 3. Diagnosed 3 or more years ago. Fibrosis stage 2. On the 1 pill regimen trial. :-)
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