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Hep C Discussion Forum -> Clinical Trial Participants -> ION-3 Summer 2013
Post Info TOPIC: ION-3 Summer 2013
Ckncali


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RE: ION-3 Summer 2013
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Hey Rose, Glad you had a good weekend. I think it is a very good sign that your AST/alt dropped into the 20s. I bet you are UND by now or at least very close. My AST/alt have always been in the high 30s and never in the past decade dropped below 30. Then after one week on these meds they drop to 20 and 19 along with UND. So Can't wait to hear your news on how low your VL goes. Don't you find out today? Be sure and let us know. I will keep my fingers crossed for you. Good Luck!



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


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Hi Chncali, sorry to hear you had a rough day, hope you those are few and far between.  Did you notice if it was something you possibly ate triggered the tired spell? 

Hi Sofi, That's too bad you didn't get the numbers on Friday,  hopefully tomorrow. Let us know when you get them! 

 I'm having a really good weekend, got a call from my clinical nurse this morning.. (yes, on a Sunday!) she said my ALT and AST are in the normal range now,  so it looks like I'm responding to the meds.  She was happy to say my liver is functioning normally now, yay! They are both in the 20's down from the 40's. Sorry I don't have the actual numbers. I should be able to post on Friday.

 

 



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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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Hey Rose, I am still waiting for my labs. The nurse said either Friday or Monday and that she would call me. Well, Friday past and no call, so hopefully I will know tomorrow! Yesterday the fatigue was less intense and so far today as well. How are you, Rose?

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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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Thanks Rose, I was surprised they had my VL results 6days after the blood draw. I wasn't expecting them to have the results so soon so it was a very pleasant surprise. Today was the worst day yet for me. The fatigue was so overwhelming I could hardly move about at all. Hopefully tomorrow will be better. Sounds like you are really doing well. So glad to hear your symptoms have lightened up. It can take anywhere from a week to 10 days to get your VL results so hope you have really good news too.



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


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Hi Sofie! sorry to hear your sx are bothering you,i know where u are coming from with the buck up feelings. Ya know each day is different some better then others be kind to your self. We are in this together! your 2 weeks ahead of me how are your reports?

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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, 
Rose


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Fantastic!!!!! I am so thrilled that u are UND that IS amazing. From week 1!!! Today was first week drawl for me. It takes time for the results here in Dallas im still waiting on my baseline, something about the contract with the lab. I rounded the corner and sx arent bothering me anymore knock on wood . you made my day!

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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, 
Ckncali


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Hi Sofi, I hope you are doing well. Have the side effects gotten any less? Hang in there and good luck.



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


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Hi Rose,  I wanted to let you know I found out today that at my 1st week blood draw my VL was undetected. Seeing it in writing made my symptoms not seem so bad anymore. Have you had your week 1 checkup yet? I hope the fatigue is better for you. Let me know how you are doing. Take care.



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


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Hi all,

I am in the same group as you guys. I am finishing week 2 and starting week 3. I, too, had side effects start quickly. I believe it was day three. I mentioned you, Ckncali, in another thread where you had described your symptoms. Mine are pretty much the same. Fatigue, itching, dry eyes, thirsty even though I am guzzling water. I have had trouble sleeping. I keep thinking it's all in my head and I need to buck up or something. I hate it that you have side effects but now I know it's not psychosomatic. Best of luck to you!



-- Edited by sofi moore on Wednesday 19th of June 2013 06:15:31 AM

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


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Hi Ckncali,

That is great you got a boost from the B vitamins, I hadn't thought of the kind that dissolves. I'm doing the 1K mcg oral. 

The people that your nurse talked about having no symptoms is remarkable. I too started feeling the affects right away. By the same token, I feel like a weenie complaining, when like you, our duration is only 56 days unlike some of the folks here who are having to do it for so many months. My hats off to those of you who are enduring that.  

Today has been the hardest yet, just wanted to put my head down and sleep. Instead I gulped down a 20 oz bottle of water mixed with OJ (1oz OJ to 7oz water) I call it H2o Orange and took a walk. It did the trick. But here I am in PJ's  at 8pm..LOL.  

With the other vitamins you are taking have you noticed a difference?  Do you know if the tiredness and foggy feeling gets better as your body adjust to the meds? 

Looking forward to hearing back, hang in there!  We are on our way



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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, 
Ckncali


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Hi Rose,

You should be close to 1week by now so how are you doing? 

I tried taking a sublingual b vitamin and felt a nice lift of the fatigue along with sublingual b12. I didn't clear it with the trial folks but I think most vitamins like c, d3, and b should be ok. I did ask about magnesium, c and d3 and all those we're ok. Do you know if vitamin e is ok to take?

I am drinking lots of water so am staying hydrated. Still have the dry eye problem but stopped wearing contacts and that helps. Itching is not any worse and may be a bit better. Insomnia is worse but had that problem before starting treatment. 

My trial doc told me there are some people that get no symptoms at all taking these 3 drugs. I find that hard to believe because I started getting symptoms very soon after taking my first dose.

Take care



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Rose


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Hi Ckncali,

Wow,   we are the 2 percent.. :) Never though of my self like that. Wish it were because of income..lol  

I read through your symptoms and I get that afternoon crash too. Before meds I would call it tea time when I went though that normal afternoon slump. But now its magnified.  I only have 3 days under my belt but day 1 I took a B12 right after work and it really helped shake off the blahs and gave me energy for family game night.  Day 2 and 3 I took it in the morning and its kept me sharp though out the day. 

You mentioned dry itchy eyes and feeling thirsty, Are you staying hydrated?  I haven't experienced that yet. 

I'm glad you are there so we can compare notes and do this together! 



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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, 
Rose


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Thank you Cinnamon, knowing this place is here and there are wonderful caring people like you,  truly brings comfort.

Its a strange thing to go though something as big as  this and really not be able to talk about it in normal conversation with friends and coworkers. Maybe its just me, but talking about viral load and symptoms just doesn't seem to come up comfortably anywhere,  but in a  safe place like this. 



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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, 
Ckncali


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Hi Rose, You and I are in the same ION3 arm of 8 weeks with RIBA. I started 8 days ago. Thanks for the b12 suggestion. I knew b12 helped with fatigue but did not know about it suppressing hepc. I made another post describing my symptoms the past week. I am interested in hearing your symptoms the next few days since we are on exactly the same thing. Good luck and please post any symptoms you have.



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Rose


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Hi all,

Vacation ended on Tues and yesterday I started the treatment. The random ARM I'm assigned to is the ION -3 with Riba for 8 weeks. When I get the base line numbers and the rest of the information I'll post it in my signature line.

I did a bit of research and found that the taking B12 is suppose to really help with energy levels and it is suggested that it will also assist with suppressing hepc from replicating. My clinical nurse also suggested taking it.  Has anyone else found this to be true?

 

 



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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, 
Cinnamon Girl


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Hi Rose, glad you had a great vacation!  There have been some studies done on the benefits of taking B12 with Hep C and while on the standard tx, and if your nurse recommends it then I don`t see why you shouldn`t go ahead and take it.  It won`t do any harm anyway, and anything that might be helpful is worth a try, in my opinion! 

Here`s a link to a news article from last year, which you might have already come across...

http://hcvadvocate.blogspot.ca/2012/07/vitamin-b12-may-significantly-enhance.html

Best of luck to you, and to everyone else doing this trial!   ~ Jill

 



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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.

 

 
Misfis


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Rose wrote:

Thanks everyone.. can't tell you how great it is to not to have to face this alone.

Randy and Misfit- looks like we are in the same Gilead boat.. I wish you all the best and look forward to comparing notes.  I have a real good feeling about it. I just wish there was some long term data on the tx. .. Guess thats why its called a "clinical study" ..making history here.

 I think we will be the future long term data makers!



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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!!
Rose


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Thanks Cinnamon! this vacation sould be awesome.. tropical breeze, snorkling every day and virgin margaritias :)



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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, 
Rose


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Thanks everyone.. can't tell you how great it is to not to have to face this alone.

Randy and Misfit- looks like we are in the same Gilead boat.. I wish you all the best and look forward to comparing notes.  I have a real good feeling about it. I just wish there was some long term data on the tx. .. Guess thats why its called a "clinical study" ..making history here.



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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, 
Cinnamon Girl


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Hi again Rose, great news that you`ve got onto the trial!  It`s interesting to hear about the foods you`ll have to avoid.

We`ll look forward to hearing more about which arm you`ll be assigned to, and in the meantime enjoy your vacation!  smile



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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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Hi Rose

I think you will do great on this trial. There are several people on here now doing the same trial. It's a great forum as there are people on here with lots of knowledge.

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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Hi Rose, I just started the 12 week sofos/ledipasvir. Good to know about the foods to avoid. Didn't hear about that, but maybe it would be the RBV regimen. Good luck with this! It's so good to find a place to talk to others who are going through a clinical trial! Misfis

__________________

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!!
Rose


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The journey begins .... 

Got the call on Friday that I've been accepted in to this study.  Start date will be June 13th!

My amazing clinical nurse was able to work it so I didn't have to cancel my vacation. So 2 days after we get back I check in to begin treatment. At that time I'll find out which arm I'll be on.

One of these-

8 weeks - sofosbuvir and ledipasvir
8 weeks- Sofosbuvir + ledipasvir + RBV
12 weeks - Sofosbuvir + ledipasvir

Interesting note- She did say there are some foods that I'll need to stay away from like
Grapefruit, marmalade, pomegranate



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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, 
garfield


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Hi Rose,

           I am very psyched for you and hope it will work for you.

I finished today my seventh week of the double-blind abbvie study, but I  know I am not in the placebo arm.

It is also forbidden for me to eat citrus fruits, because of ritonavir, which is a booster for abt-450.

 

wish you the best



-- Edited by garfield on Sunday 2nd of June 2013 04:37:09 PM



-- Edited by garfield on Sunday 2nd of June 2013 04:41:42 PM

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