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Post Info TOPIC: Very worried again
Rubye


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RE: Very worried again
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Hi Doni,

I understand perfectly wanting another viral load even with a SVR12. Congratulations btw!!!

I had to go in for different blood work today and also did another viral load and I'm 16 weeks after EOT and was undetected at SVR12. Regardless of what the standard is now, I still want to "be sure". Perhaps it comes from having Hep C for so many years.

I say do another test at 24 weeks for the reassurance if nothing else. Our minds can work against us when in doubt. Part of my concern also stems from all the people who relapsed on Interferon after being undetected for over a year.



__________________

UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
Cinnamon Girl


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Congrats to you Doni!! 

It wasn`t really in doubt but it`s very reassuring for you to know for sure.  And I agree with Tig, there really is no need for you to have your viral load tested again...you`re already there and you have been since your SVR12 result!!

Relax and enjoy your life, the virus is history!!   biggrin



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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.

 

 
Tig


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Hi Doni,

WOOT!!! Congratulations on your SVR! That's wonderful news. In my opinion, you have no need at all to do another viral load. SVR is confirmed after 12 weeks now, and you are well past that. YOU ARE SVR! Go out and enjoy your new Hep C free life! Good luck buddy...



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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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Doni


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No measurable signal!!! No HCV RNA detected!!! Thank you very much dear friends for supporting me through all of my journey of battling this disease!!! I am so relieved now. Should I take another test after a couple of weeks again because I took this 3 weeks earlier than 6 months EOT?



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Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
Tig


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Great numbers Doni! Let us know your viral load as soon as you hear something. Good luck!



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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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Cinnamon Girl


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Hi Doni,

Good numbers there, I`m sure your liver enzymes would be much higher than that if you had relapsed.

Let us know when you get your PCR result back, and try not to worry!  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.

 

 
Doni


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Dear Friends,

 

I have taken PCR test and other blood tests as well including ALT/AST. For the PCR test they said it will take a week. ALT is 46 and AST is 28, which is in normal range. Thank you again for your support and will update as soon as my PCR test results are out.



__________________

Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
zavr


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Hang in there, Doni!! I remember your first posts, and I am so glad you've achieved SVR earlier this year! 

As others wrote below, the fatigue might be due to interferon and/or ribavirin still working themselves out of your system. If worst comes to worst, I also want to remind you that genotype 1b's also have the Viekira Pak option without ribavirin. I am on it now and experienced minimal side effects. Thus, there are tolerable options that have recently become available, in case you need to treat again.

I totally hear you and greatly empathize about the fatigue... Some days are up and some are really down... So frustrating. I hope you have the opportunity to have some rest, and maybe get a massage or take a nice warm bath this weekend. Nothing quite like checking out for a few days to help recharge the batteries!! :)



-- Edited by zavr on Thursday 16th of April 2015 05:07:48 PM

__________________

Gen 1b, 33yo. Started 12wk Viekira Pak on 2/28/2015. 

Baseline: VL=517K, AST=34, ALT=56. 

Wk4: VL=<15, AST=16, ALT=14.

Wk8: VL=UND, AST=17, ALT=14.

Wk12: VL=UND, Fibroscan: 3.4kPa, F0.

--->Viekira Pak financial and nurse support<---
Cinnamon Girl


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Yes, Tig is right, you`ve already achieved SVR12 so I`m sure you`re already in the clear, but just to put your mind at ease I would ask for a PCR as soon as possible. 

Go for it!!  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.

 

 
Tig


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Hi Doni,

Absolutely! The standard testing protocol now isn't 24 weeks, it's 12. If you are still undetected at EOT +12, it is now considered SVR. The +24 week test was the old standard. Actually research is showing that if you are still undetected at +4 weeks, the odds of going on to SVR 12 are nearly equal. So long story short, yes, you can. Good luck and let us know! You got this, stay positive!



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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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Doni


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Dear friends, I need your advice here. Can I take my next PCR test now not waiting for 24 weeks EOT? Only 3 weeks left but this anxiety is really killing me...



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Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
Gator Man


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Doni wrote:

I started jogging and eating healthy already trying to lose some weight.

Hi Doni,

You're on the right path and you know what to do (and not). I'm confident that you'll remain SVR and that you've beaten HCV for good.

I celebrate with an Arnold Palmer these days. Living on the edge with that extra sugar from lemonade!

Good luck and stay in touch.



__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
mallani


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Doni,

Congrats on the SVR12, and I'm sure you haven't relapsed.

As others have said, it can take a year to get over Peg/Riba. Do yourself a favour and stay off the booze!!!



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Doni


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I do understand that it's not very wise to drink alcohol again, but it was the moment which I told myself that it's ok to celebrate once, but later realized that I need to be more thoughtful. Thanks guys for your support and I will be posting my 24 weeks results after 3-4 weeks time.



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Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
2willy


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it is now only attitude and put aside fear, easily said than done, work slowly and as I had to realize for me 48 weeks of inactivity just did not go away, strength did energy did and was really wishing could get on with life, well I have maintaining healthy wait with moderate exercise, clearer head with legal and other problems completed and finally snow is going and spring is here, Try as you must take two steps ahead and one back, we only have one day so tomorrow will be better if we do the to do things, I do not drink but really watch what my intakes are as I want my liver to rechare, 64 but still lots of time to get into some more jack pots or chose to enjoy life, we all deserve enjoyment so good luck



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Tig


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Hi Doni,

Do your best to relax and believe... SVR 12 is the standard today for success and you achieved that and I'm glad you celebrated the moment. I do suggest you find a better way to celebrate such an important day in the new life of your liver. A bottle of Vodka isn't the best choice. The worst thing you can do is start that after what you've been through. So please think about that and your future. End of speech...

By eating right and getting some exercise, you will start to see your BMI reduce. Weight loss is a marathon, not a sprint to a finish line. Keep working at it and in time it will happen.

It can take 6 months to a year before you're feeling better. Even though Sovaldi has fewer side effects, the Peg and RIBA can have lingering effects. Commit to a healthy and as active a lifestyle as you can tolerate. You will begin to notice the clouds lifting soon! Stay in touch.



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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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Doni


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Thanks a lot for the support Cinnamon girl! Yes I was really worried before SVR12 and I am again. Can't help this honestly. I started jogging and eating healthy already trying to lose some weight.



__________________

Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
Cinnamon Girl


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HI Doni, good to hear from you again!

I know it`s a very anxious time waiting to hear your results but please try not to be downhearted.  You were very worried before your 12 weeks post EOT result too but it turned out to be undetected, so try not to jump to any conclusions.

It can take quite a while to recover from treatment with Sovaldi plus Peg/riba so give it more time and try to be patient.  The chances of a relapse at this point, after you`ve achieved SVR12, are very low, but in the unlikely case that you have relapsed then yes, you could retreat with Harvoni. 

In the meantime while you`re waiting, look after yourself, try to eat a healthy diet, take a little exercise and relax! 

Wishing you all the best of luck, keep in touch!  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.

 

 
Doni


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Hello dear friends. It has been a long time since I didn't visit this forum. I was UND post 12 weeks EOT after treating with Peg+Rib+Sovaldi for 12 weeks. However, for the last two weeks I have poor appetite again, slight swelling in hands, and some itches at night. Yesterday I took a walk and I got the fatigue I had before when I had the virus. I will take my 24 weeks EOT test after 3 weeks and I am suspecting I have relapsed.

Everywhere I read they say that SVR12 is considered cure, but I have the feeling that's not the true from what I am feeling. My BMI is 31 and I am struggling to lose weight which is not easy as well. I am almost sure the virus came back and I am relating it to anything, starting from being obese to finishing a bottle of vodka to celebrate my SVR12!!!

Please help me understand, have I probably relapsed according to the symptoms I am having now? What are the chances of relapse after SVR12? Can I try Harvoni after I have relapsed with Sovaldi based treatment?

 



__________________

Finished Sovaldi triple therapy on November 6th 2014, age 33, Genotype 1b, UND after 3 months of end of therapy. Next PCR test May 6th 2015.

 
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