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Post Info TOPIC: Starting TX Feeling nervous
RudiRoo


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RE: Starting TX Feeling nervous
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Fireman Rob wrote:

Hi Rudi,

This is a great combo and I'm sure you will do fine. I had more side effects than most people i've seen but it was well worth it. The hardest sfx I had were sore muscles and joints, itchy eyes, and intense headaches from time to time. The worst part was trying to workout on tx. It was challenging because the meds made me really sore. For days!

That said, I would do this tx again in a heartbeat- it was well worth it for me! I'm excited for you to get started so you can play this tormenting waiting game to see if we achieve SVR. Ha ha, don't worry too much, you will do fine.

I found drinking plenty of water and coffee mitigated side effects. Good luck and congrats on tx! Also, watch out for the sun, some people fry easy on Olysio.

-Rob

 Ha! Thanks for the support and info. I just went ziplining and was thinking it's kinda the same thing - there is no turning around - you just gotta trust and jump. It's the only way to fly!



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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Groupergetter wrote:
RudiRoo wrote:

Thanks for the welcome and encouragement Groupergetter. It's a real comfort and so good to talk to people who understand.

 

I live in the tropics so the sun sensitivity is a real problem. The doc suggested a birka - I told him I'd call the Taliban, see if they had a spare in my size.

 

How recently did you do treatment? Are you SVR now?

 Hi Rudi,  when not working or caregiving for my elderly mother I like to fish and dive.  Not getting to do this much now.  I found the inexpensive UPF long sleeve T-shirts worked for me while working in the yard and on the boat.  JiffyShirts.com is a good place to get these.  Also used a fishing cap that covered the neck and ears.   Wish I could say the tx worked for me.  Though 100% compliant I relapsed on S/O 4 weeks after ending tx.  Guess the cirrhosis got in the way.   The largest percentage of folks on S/O get SVR.  You'll do fine.

Hey Grouper,

Thanks, good tip. I forgot I have a few UPF shirts. Good thing we stocked the freezer full of snapper on our last fishing trip. Probably looking at four months before I can go again . Sorry about the relapse, that's rough. Are you taking another shot with the Harvoni?



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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Greg D wrote:

We're here with you Rudi. Take a deep breath and do this for yourself and also for those who love you. wink

 Thanks for the support Greg! I decided to wait 'till Monday to start so I can have a beach day - last one for three months.



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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skewedButNotBroken wrote:

I got my results from the take-home ekg monitor and it picked up ventricular tachycardia. My Cardiologist want to do a CTA artery scan with contrast and an echocardiogram of the heart.

 

 I'm so sorry - last thing you needed. Hopefully the scan will show it's no biggie. Keep us posted? Take it easy Skewed.



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
skewedButNotBroken


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I got my results from the take-home ekg monitor and it picked up ventricular tachycardia. My Cardiologist wants to do a Coronary Computed Tomography Angiogram with contrast and an echocardiogram of the heart.

 



-- Edited by skewedButNotBroken on Tuesday 21st of October 2014 11:18:31 PM

__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Groupergetter


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RudiRoo wrote:

Thanks for the welcome and encouragement Groupergetter. It's a real comfort and so good to talk to people who understand.

 

I live in the tropics so the sun sensitivity is a real problem. The doc suggested a birka - I told him I'd call the Taliban, see if they had a spare in my size.

 

How recently did you do treatment? Are you SVR now?

 Hi Rudi,  when not working or caregiving for my elderly mother I like to fish and dive.  Not getting to do this much now.  I found the inexpensive UPF long sleeve T-shirts worked for me while working in the yard and on the boat.  JiffyShirts.com is a good place to get these.  Also used a fishing cap that covered the neck and ears.   Wish I could say the tx worked for me.  Though 100% compliant I relapsed on S/O 4 weeks after ending tx.  Guess the cirrhosis got in the way.   The largest percentage of folks on S/O get SVR.  You'll do fine.



__________________

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.
Greg D


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We're here with you Rudi. Take a deep breath and do this for yourself and also for those who love you. wink



__________________

60 yo (2013), genotype 2b, started 28 week tx Sept.14, 2013. Triple Therapy (ribavirin, victrelis, peginterferon), VL 235k prior to tx, UND right through. EOT March 29, 2014. EOT24 Sept. 15, 2014 and EOT + ONE YEAR April 1, 2015 UND.... SVR!

 
Fireman Rob


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Hi Rudi,

This is a great combo and I'm sure you will do fine. I had more side effects than most people i've seen but it was well worth it. The hardest sfx I had were sore muscles and joints, itchy eyes, and intense headaches from time to time. The worst part was trying to workout on tx. It was challenging because the meds made me really sore. For days!

That said, I would do this tx again in a heartbeat- it was well worth it for me! I'm excited for you to get started so you can play this tormenting waiting game to see if we achieve SVR. Ha ha, don't worry too much, you will do fine.

I found drinking plenty of water and coffee mitigated side effects. Good luck and congrats on tx! Also, watch out for the sun, some people fry easy on Olysio.

-Rob



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
RudiRoo


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Dzdayscomin wrote:
RudiRoo wrote:

Absolutely! South St. Paul - I miss tator tot hot dish and Fall the most,  doncha know. But that snow and ice - not too good a deal.

 Ok a St. Paulie girl....lol

Well i'm a Northwest suburban guy is that where you grew up? and are you familar with our great state of lakes and fishing and hunting etc ?

It's nice to have another MN native on the forum, not that is great as to what brought yoh here.....when you say island girl, what island?And yes hotdish is good as well as Walleye and other great things all Minnesota!

 

We have fishing in the Virgin Islands too! 



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
Dzdayscomin


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RudiRoo wrote:

Absolutely! South St. Paul - I miss tator tot hot dish and Fall the most,  doncha know. But that snow and ice - not too good a deal.

 Ok a St. Paulie girl....lol

Well i'm a Northwest suburban guy is that where you grew up? and are you familar with our great state of lakes and fishing and hunting etc ?

It's nice to have another MN native on the forum, not that is great as to what brought yoh here.....when you say island girl, what island?And yes hotdish is good as well as Walleye and other great things all Minnesota!



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
RudiRoo


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Thanks for that Marcy - good for you! Really could use the energy - I really miss that chock full of tiggers feeling.

Hopefully you'll be singing that SVR song soon!

Rudi



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
Milliganus


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Welcome RudiRoo,

I just finished up a 12 week treatment with 2 of the newer drugs and it was a piece of cake.  Virtually no side effects, just lots more energy!  I wouldn't be overly concerned about what you saw under adverse effects.  They've done studies with large numbers of people very successfully, and the 19 that died, well, there could have been pre-existing conditions, who knows.  

To me these new treatments are wonderful, especially if you look at whats been available for us in the past.  

 

Good luck on your decision.



__________________

Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
justvlm


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RudiRoo wrote:

Hi Vim,

Ha - your precious! Perfect name. I didn't name my liver,  just my virus - I call him Snidely - as in the old cartoon villain, Snidely Whiplash.

I've never had treatment before - always been concerned by the havoc it seemed to cause, but I'm hoping S/O can tie old Snidely to the tracks! I get those pings too and it's an ugly reminder.

I hope you win the tx lottery too - keep right on dreaming!

Rudi

 I had a horrible name for my dragon, once upon a time.  Changed my focus on my precious... just because I became infatuated with Lord of the Rings, Smeagol.   It's a pretty twisted thing I have going on in my head with this character and my very own precious.  I guess I was kind of feeling like this.  Oh never mind... I'm not right in the head , but that has been established no  LOL.....

 

Wall%20Decal%20LOTR%20Smeagol.jpg



__________________

GT 2, DX 10/2007, BX stage 0/1; grade 0/1... treatment-naive

11/2014 fibroscan F1-F2 (8.2)

Pretreatment VL 1.9 million

Start Sovaldi + Riba 11/23/15

Undetected  at 4 weeks tx

12 week post treatment results. CURED !
RudiRoo


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Thanks Skewed,

 

I have been trying to figure out  the causes of the cardiac troubles with no luck. They just aren't reported anywhere but the message boards. I'm sure the FDA knows but they aren't talking. It will be good to know why - it could be just a nothing thing - like a heart murmur. That would be great. Thanks for the Ativan tip - good to know there's something to take if you need it. I'm hoping to calm my own self down and avoid extra drugs. My brain is plenty loopy enough already!

Rudi



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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Absolutely! South St. Paul - I miss tator tot hot dish and Fall the most,  doncha know. But that snow and ice - not too good a deal.



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
skewedButNotBroken


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Hi RudRoo,

I did see a cardiologist. I passed a stress test and I wore a take-home monitor for 7 days. I had a few flutters while on the monitor but the results are not in. I will let you know as soon as I find out. I take 4 mg of Ativan at night and that knocks me out. The next day I'm pretty clear-headed. Most of the time, I'm Okay during the day and don't have to take Ativan, but one day I did take 2 mg and had a very hard time functioning.



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Dzdayscomin


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RudiRoo wrote:

Thanks Duane I will. I just looked @ your signature and saw you are in the land of 10,000 mosquitos! I'm an island girl now, but I am a 25 yr. freezing cold MN winter survivor! 

 May I ask from what part of this tundra you are from....ok to just be general to preserve your privacy ?



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
RudiRoo


Senior Member

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Posts: 158
Date:
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Thanks for the welcome and encouragement Groupergetter. It's a real comfort and so good to talk to people who understand.

 

I live in the tropics so the sun sensitivity is a real problem. The doc suggested a birka - I told him I'd call the Taliban, see if they had a spare in my size.

 

How recently did you do treatment? Are you SVR now?



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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Thanks skewedButNotBroken - I'm a big fan of honesty and I appreciate you taking the time. Did you talk to a heart doctor about it? Does the Ativan keep you too stoned to work or function?



-- Edited by RudiRoo on Saturday 18th of October 2014 09:44:39 PM

__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
RudiRoo


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Thanks Duane I will. I just looked @ your signature and saw you are in the land of 10,000 mosquitos! I'm an island girl now, but I am a 25 yr. freezing cold MN winter survivor! 



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
Groupergetter


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Hi RudiRoo, you've definitely hit the jackpot if you got your meds free.  You are blessed.  aww   The S/O is a fairly simple regimen and not too difficult to tolerate.  I also had headaches, insomnia,  and sensitivity to sun.  At one point I had some skin rash as well.  All in all a piece of cake compared to the Intferon/Riba.  You'll do fine.  Take your meds as prescribed and in 12 weeks you'll more than likely find SVR.  I found new energy while on tx and hope this is true for you as well.   This is a great forum with very special people.   Welcome  smile



__________________

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.
RudiRoo


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Hi Vim,

Ha - your precious! Perfect name. I didn't name my liver,  just my virus - I call him Snidely - as in the old cartoon villain, Snidely Whiplash.

I've never had treatment before - always been concerned by the havoc it seemed to cause, but I'm hoping S/O can tie old Snidely to the tracks! I get those pings too and it's an ugly reminder.

I hope you win the tx lottery too - keep right on dreaming!

Rudi



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
skewedButNotBroken


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I'm on the S/O therapy. At first, I had a headache and just felt tired for a few days. Then I started having anxiety, but Ativan has stopped that. I have had several heart flutters on the medication, but I use to have an occasional heart flutter anyway. But the intensity of heart flutters have increased. I do have this really weird feeling that I can best describe as an "altered visual perception". It sort of reminds me of taking a very mild hallucinogenic. 

I'm not trying to increase your fear--I'm just trying to describe what has happened to me.



-- Edited by skewedButNotBroken on Saturday 18th of October 2014 09:14:17 PM

__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Dzdayscomin


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Regardless i am glad you are here, you'll get the support and friendship from those that really understand the whole picture, so welcome and challenge this community to help you though every aspect of your tx and sx, you'll find it makes it much easier and you'll find the time goes much faster when you can vent your feelings to the group.

I promise you this....it'll b e done before you know it.

Make sure you take your meds along with good protien source,  and if you take any other supplements either quit them or talk to your Dr. about them so they don't interfere with your tx.

Welcome glad to have you here.



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
justvlm


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Hello RudiRoo,  I'm just acting like a Wally-World greeter to say Howdy, welcome.

I'm guessing from your signature line that you are not new to HCV or treatment.  I haven't been officially on the board long (lurker also). I am waiting to hear back on getting into an AbbVie trial.  I will jump on it like a chicken on a june bug if I get the chance.  Don't be too hard on yourself, being nervous about any drugs is always advisable and doing homework should be required.  With that said..

Risk - yep.  Life is a risk.  The longer you brew HCV, the more the risk.  I weighed the risk vs SOC tx years ago and opted to wait.  I don't know how my precious (AKA liver) is doing these days but it pings at me pretty regular to remind me it is sick but fighting as best as we can.  Other than that - just like 8 yrs ago, I feel pretty dang great and count my blessings.

More knowledgeable folks will be along soon.  As Duane said   considering the miserable options just a few years ago, we are in the best of times so far.  I dream of day when HCV is preventable / and all genotypes are fixed with one pill per day for 10 days... OKAY, I am dreaming, but from my point of view 8 years ago and now today - anything is possible.

vlm ~..~

 



__________________

GT 2, DX 10/2007, BX stage 0/1; grade 0/1... treatment-naive

11/2014 fibroscan F1-F2 (8.2)

Pretreatment VL 1.9 million

Start Sovaldi + Riba 11/23/15

Undetected  at 4 weeks tx

12 week post treatment results. CURED !
RudiRoo


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Thanks Duane,

I just had to change my signature - I've had the virus 32 years, I've been on Earth for 52 years! Sorry for the confusion, but I do take your point. This hep c has damaged me in many ways - Hashimoto's, SIBO, insomnia but unless the hepascore says otherwise, my liver is hanging in there.

Thanks LC, glad to see those questionable kitties didn't get you! 

I am on antibiotics now so I'll wait a few days for those to clear and start next Friday. I just gave my pills a long hard look and told them, "It's the gullet for you pal!"

I think part of my nervousness stems from the fact that I decided NOT to take the Incivek just one day before the black box warning came out. I think I'm second guessing myself and maybe going overboard with the research.



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
LC


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Go look at the success rates, maybe that will be comforting? Go look at what some of the members who took Interferon went through and know any side effects you may experience will be so much milder. I had a couple of mild panic attacks too, but am calming down after my first week. You DID win the lottery and you should be just fine.

__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Dzdayscomin


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Well I am not one of those 19, and I can say that if you have been given this tx go for it, it's really pretty benign as far as sx in the majority of recipients, and it most definitely works in most cases, yes there are some that have not achieved SVR but I'll  go out on a limb and say that it's a small %.

So at your young age with normal liver labs as you stated, i would think you can breeze right thru this, no need to panic these cdrugs are in no way like the older interferon based tx's.

So all that said take that gift and swallow it each and every day for 12 weeks with a good diet and common sense lifestyle for a person with Hep C and you'll  very likely find yourself SVR in 6 months.....if it can work for a guy in my shape it can work for you! Just be positive.

Even with the new drugs just released I believe the S/O combo is really one of the most effective tx you can get....so yes you did win the lottery as far as getting rid of Hep C in a very friendly way!

Good luck we hope the best for you and your tx.

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
RudiRoo


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Hi everyone,

Like many others I've been a lurker, now joining in as I finally have some hope ahead of me.

I was approved for FREE Sovaldi/Olysio and was feeling so blessed and excited. Then I went to look up some information and stumbled across some scary posts on another board. I went to a site called Adverse Events and learned 19 people had died after taking this combo this year. I'm a logical thinker and I realize since Gilead is making big bank, just in the first half of this year, 19 people is a tiny percent. Also it appears the people who died seemed to already be quite ill. I also read about some people having cardiac problems which began a few weeks after starting treatment, some of which did not end after stopping the drugs. Again, I took this in stride (or so I thought) realizing that no drug is perfect and this is still an excellent safety profile for any drug. 

Then I woke up with a panic attack. I haven't even started the drugs yet so it's not from that. I don't have panic attacks. When I finally got back to sleep I had a dream I had liver cancer.

I feel stupid. I'm sitting here with a cure for what ails me in my hand, given to me FREE (I still feel like I won a lottery with that) and my rational brain has left the building. I'm not sure what to do.



__________________

Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
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