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Post Info TOPIC: Moving forward with SVR


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RE: Moving forward with SVR
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Yes it's over and almost a surreal feeling after 2 decades plus of feeling sick.  At SVR 24 even I am finally convinced that the nightmare has finally ended !!!

Had the gastroscopy on Monday. Completely under so wasn't even aware of anything at all. Funny that they even bothered with the throat spray (that was weird stuff). Results were normal !

Thanks for all you support and kind thoughts and best luck to all still on treatment. The good news for you is that the methods are better and continually improving.  No doubt that SVR for all is an inevitable outcome of the continual advances in treatment.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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That certainly seals the casket shut on that dead dragon. You fought a long hard fight and I'm sure that makes SVR 24 sound that much sweeter. Job well done!!!  



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hi Paul,

That's fabulous buddy! That's a very special thing to both read about and experience. You've made my day old friend! Continued good luck on your journey to excellence... smile

IMG_1374.JPG



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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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Way to go Paul, congratulations!! Very happy for you.



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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!

 



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Big congratulations, Paul!!  We knew you were in the clear with SVR12 and now this result is the icing on the cake, with a cherry on the top!  biggrin

Great to hear how well you`re recovering, it must feel so amazing for you after all those weeks of struggling to get to the end of your long stretch of treatment!

Do keep in touch, we love hearing from our `post treatment` friends!! 

 



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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.

 

 



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SVR-24.  Hard to believe but true !!! 

Back to cycling around 300 kms each week and in the gym.  Feeling great but I'm getting better.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Thanks guys. Feel better about it now.

 

Cheers

Paul



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Hi Paul,

I have had gastroscopies every year from about 1995 to 2012. After SVR, my doc said don't bother with them unless there's a problem.

I've never had varices but had some early changes of portal hypertensive gastropathy. These were gone when I had a colonoscopy and gastroscopy in November 2012.

Have this one, then forget them. Cheers.



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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



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hi paul. am surprised you havant had a gastroscopy yet. ive lost count how many ive had.its not that bad mate and as you must know you have an option of a sedative or throat spray.i just have the spray as i dont like the hangover effect of sedation.mines due in november. you have nothing to worry about mate.                                                                              all the best william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16



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Hi all.  So, received a letter advising I am booked in for a Gastroscopy.  The clinic advised that it had been scheduled at about the time I started treatment...  don't know if it is just a long wait list or it was intended for EOT.

Is this a procedure that all cirrhotics undergo ?  Is there anything I need to be aware of, or concerned about ?

 

Cheers all.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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hi paul.all the best in the future mate.am glad your feeling so much better.the worlds your oyster mate. you will get fitter by the day.bye paul                                                                                                                              william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16



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Congrats to you Paul and everyone at the finish line. It is a gift and it is beautiful

PEACE



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Paul! I do hope you stop by in future, I have been looking forward to your 6 month results!

Thankyou for all of your support, it has been wonderful having you around.

Wishing you the very best!

Take care x

 

 



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 



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Hello Paul 

Thanks for sharing your SVR and the story on the way, biking can be a great way to see the world. Super congrats on acheiving SVR-12 

Healing takes time and effort of looking forward.

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! 



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Good luck mate.

Thanks for sharing your 48 week journey. Cheers.



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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

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Hey Paul,

Thanks for sharing the ride with us! You are one of the last Victrelis triple warriors and paid dearly for your results, but you were successful and that counts in the long run (ride!). I would like to think we haven't heard the last from you. Please check in once in awhile and let us know how your recovery is progressing. Even though the circumstances leading to our introduction here could be better, I still enjoy meeting and getting to know each of you. The day I hear someone bidding farewell after a successful treatment, is "sadly joyful". But we all understand life goes on.

I wish you all the best Paul, good luck! smile



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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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Wishing you all the very best with your ongoing recovery, Paul, it`s stll early days for you yet. 

Thanks for sharing your journey with us, you`ve had a long hard road to SVR but you persevered and achieved your goal.  

You know you`ll always be welcome here anytime you feel like dropping in, it`s been a pleasure to have you with us, you`ve been an inspiration.

Take good care!  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.

 

 



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OK. Seems like my time here is done. Bye and thanks.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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MzmiffY wrote:

 I actually feel like my old self again.

 

Paul I had my fibroscan yesterday, so my reading BEFORE tx was 13.8 and at 6 months EOT it is 9.9.


 Glad to hear you are doing so well... fantastic.

9.9 !!!   That's great.  Anything under 12 is just awesome.  Congratulations on such a wonderful result !!!



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Completely with you on IQ statement, however I have welcomed a noticeable improvement emotionally and mentally this past month. No longer feeling agitated over the slightest inconvenience. I actually feel like my old self again.

I'm hoping you will notice some positive changes in the months to come.

Paul I had my fibroscan yesterday, so my reading BEFORE tx was 13.8 and at 6 months EOT it is 9.9. The doctor said he wouldn't expect to see much of a change this early but I am pleased there is a reduction, maybe I was hoping for a little more, but still could be worse so I should just be grateful.

Looking forward to your 6 month results,

x



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 



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Well nearly 4 months post treatment and it is a mixed bag.  I'm cycling close to 200kms a week over 3 rides. A bit taxing but not at all bad.  My head on the other hand has gone haywire and is getting worse.  Super stressed and confused at the slightest hiccup.  Feel like my IQ has dropped by half.  It is quite dramatic !!!

Very grateful to be free of Hep C though.

 

Cheers

Paul



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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MzmiffY wrote:

Hiya stinky..um i mean Paul (sorry, couldn't resist)

Firstly, huge congratulations on reaching SVR 12, perseverance paid off!

I do recall feeling quite stiff during tx and perhaps shortly after finishing, but it's no longer an issue, so hopefully you see some improvement soon.

Im wondering if you have returned to your normal weight? I have been underweight for the last couple of years, however since finishing tx I have put on 7kg!! its fantastic! 

I have a fibroscan in a couple of weeks so that will be interesting.

stay well,

x

 


 LOL    yea thanks.  Still can't believe I achieved SVR.  Though having said that, the drugs are super powerful and you would have to be pretty unlucky to go from RVR to breakthrough at the end of 48 weeks.

The stiffness seems to be reducing more each day.  I'm cycling heaps also, another 60 km effort today with some serious climbs. It's hilly here in Tasmania.

As far as my weight goes, I was 71 kg (I'm 1.70 m height) when I started treatment and cycling around 300 kms each week.  I was concerned that the sudden cessation of activity would result in weight gain, so once treatment commenced I forced myself to eat less and lost 4 kgs during the 48 weeks.  As a cyclist, this was a great outcome as it means less weight to haul uphills.  Problem is it was probably mostly the muscles I need to get up the hills   3 months post treatment my weight has stabilised back at 71 kgs.  I seemed to need to eat and couldn't maintain my new found reduced calorie intake.  70kgs is probably a good weight for me anyway.  In your case, the weight gain probably signifies a return to healthy function.  You probably have other improvements also I would imagine.

 

Good luck with the fibroscan.  I read a report yesterday which was very positive regarding liver regeneration post SVR.

 

Cheers,

Paul



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Hiya stinky..um i mean Paul (sorry, couldn't resist)

Firstly, huge congratulations on reaching SVR 12, perseverance paid off!

I do recall feeling quite stiff during tx and perhaps shortly after finishing, but it's no longer an issue, so hopefully you see some improvement soon.

Im wondering if you have returned to your normal weight? I have been underweight for the last couple of years, however since finishing tx I have put on 7kg!! its fantastic! 

I have a fibroscan in a couple of weeks so that will be interesting.

stay well,

x

 



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 



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dustbear wrote:

I am so happy to hear that you are hep c free! 

Happy riding smile


 Thanks !!!

 

So I noticed that when I have been seated, it may be several minutes, or a longer duration, that when I get out of the chair I am really stiff.  Like I have aged about 25 years on treatment.  In the last couple of days this seems to be becoming less and less. To the point where I almost feel back to normal.  Is this something that others can relate to ? Is it a result of months of inactivity or an effect of the drugs on the body.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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I am so happy to hear that you are hep c free! 

Happy riding smile



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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"



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Paul, you're probably right that the bo is a sign of returning to "normal".  I've had this crap so long I'm not sure what "normal" is, but hoping to find out.  Should have read your earlier posts before commenting.  If you're having increased energy levels, working in the gym, training, or just being more physically active, stands to reason you might have a bit of bo.      Congratulations 



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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.



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Groupergetter wrote:
 Almost as though I could smell the ammonia. 

 I had something like that odor in my urine for a number of years.  It just went within a couple of weeks of commencing treatment. I think the B.O. I mentioned signifies a return to normal function.

 

Cheers,

Paul



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Hi Paul,

Several years ago I had bout where my ammonia levels increased significantly.  This is not uncommon for folks with liver disease.  As I understand it, there is a correlation between the elevated ammonia levels and brain fog/encephalopathy.  During this episode, I noticed an unusual bo.  Almost as though I could smell the ammonia.  My doc at the time initially prescribed xifaxin (rifaximin) to reduce the ammonia and reduced protein intake.  Because of the expense of rifaximin, lactulose and reduced protein were prescribed ongoing.   Don't know if this is occurring in your case, but it might be worth having labs done to check and see if you have elevated ammonia.  Take care, you've been thru a difficult course of treatment.  Glad it's over.  Good luck.



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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.



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In my time on this forum, I have mentioned a couple of symptoms which there was not a lot of feedback on and I assume they may have been less known about or possibly unique to me.  So now that I at post treatment stage, I have another interesting bodily response. This one will probably sound unusual... 

B.O.  Yep body odour.  I just haven't had any. Well at least for the 15 years I have lived in Tasmania.  I put it down to the cool climate.

But since SVR, I now have it.  The first time, yesterday, I shrugged it off. Then I had it again today. Very little activity and a very cool day.  Had my ophthalmologist buddy over for lunch and asked him what he thought and he said it probably had something to do with the body's internal flora no longer being impacted by the virus.  Bummer about the odour but i'll take a bit of stink as a trade off dor SVR any day !!



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Hi rob.  Why are you monitoring. Your testosterone in relation to your workou?



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I would give it another month or two and train gradually. I didn't take Harvoni but took Sovaldi/Olysio which Sovaldi is in Harvoni. I noticed for about six months after tx, my muscles had a hard time recovering from weight training but it faded with time and with increased blood flow. I'm not sure which drug was responsible for my joint pain but it was frustrating. 

Personally, I think eating right with proper water intake, and getting enough rest is key to recovery. If you're like me, you want to push it hard to make up for lost time. I definitely experienced a decrease in testosterone and was fatigued also. The best advice I can give is to listen to your body. Help it help you. Best of luck.

-Rob



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

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S1jiujitsu wrote:
And do you think it's ok I train still? Some days my training is great others it takes it out of me for a few days. Please give me your opinion and experience thank you

 Well it sounds like you are in better liver health than me ! And younger also. I am guessing that you should be able to ease back into training without too much difficulty.  But really, you are asking the wrong person. I have far less knowledge on the physiological implications than the people who have responded to this post before yourself.

Personally, I have gone about it the wrong way possibly.  Too much too soon. So much so that I had to take 3 weeks off to recuperate. It may have been coincidence though and I possibly just picked up a bug. But that could also mean that my immune system was so compromised from treatment that I was susceptible to catching something. I'm back at it now. Still going hard but in a more measured way.

Keep an eye on this thread. I'm sure someone more qualified than myself will be able to shed some further light on the subject.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.



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Paul I read what you wrote and I thought I ask you a couple questions. I'm 6 weeks post treatment. And I'm undetectable with an ALT 24 AST 26. I do BRAZILIAN JiuJitsu. I didn't know harvoni had all these side effects until I took it. I trained even during treatment but became so fatigued I took the last two weeks off. My energy is hit or miss and come to find out my testosterone dropped from 540 pre treatment to 303 post treatment. I believe it to be a side effect the medicine has on your body. I'm only 36, and I was an F1 before treatment. I'm super healthy. But since treatment my energy plummeted and experience mental fatigue as well. How long should I anticipate it taking for my energy to recover? And do you think it's ok I train still? Some days my training is great others it takes it out of me for a few days. Please give me your opinion and experience thank you

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Hi Paul

Like all the others it took me about 6 months. I felt better at about 3 months but not great until 6. I think I started doing things well at 6 months eot. Its been a year now so things are about as normal as can be as my bodies gonna be 63 this year, my mind is another matter (thinks its 20) which taxes my body more than it should :) :). So it took me a little under a year.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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Hi Paul, good to see you in `Post Treatment`, it`s been a long wait!

I`m very impressed with how quickly you`re recovering, especially considering you did a very gruelling 48 weeks of the Victrelis triple.  It took me about 6 months to really start noticing the difference in energy levels post tx and I would say my recovery continued for a year or more.  I can`t say I`ve ever returned to near normal levels of energy and strength for my age group but even so I remain better than I was before I did my tx, both in terms of energy and things like joint and muscle aches and pains. 

I`m sure you`ll continue to notice improvements over the coming months, and your determination will help a lot!  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.

 

 



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Paul,

Welcome to Post-Treatment. Along with Susan, you're probably the last of the 48 week Victrelis triples on this Forum. I must say the Victrelis triple was very successful for Forum Members- the 28 week and 48 week sufferers all achieved SVR to my knowledge.

You're younger than me, but it took at least a year to get over the Interferon side effects. I still have a bit of peripheral neuropathy but that may be just age-related. Check to see whether 6 monthly Ultrasounds for HCC are suggested.

Best of luck mate.



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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

Tig


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Sounds like you're really recovering well Paul. Far quicker than I did. I started to feel better at the 6 month mark, but didn't feel my best for a full year. It affects everyone differently and I think if you were athletic to begin with, it will work in your favor during recovery. Our member Perry continued to run marathons while he was on treatment and amazed us all. Some people must have that big red S tattooed on their chest! I think your body speaks to you and you'll know when it's ready to perform. It's when you ask it to do more than you know you should, that gets you into trouble with the aches and pains we know too well!

Keep  working at it Paul and I think your goal of a return to competition by the end of the year, is entirely possible. Good luck buddy and congrats on your success!



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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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Well, time to change the theme of my posts since I no longer have Hep C

So 3 months since EOT and I have very little to complain about.  Some aspects of my body function are the best they have been in many years. I am amazed.

I'm back on the bike after my initial comeback was derailed for a few weeks due to some bug. I'm not going so hard this time.  Or at least I am allowing more recovery time between rides ( a few days).  I also injured my shoulder from pushing too heavy a weight in my comeback to the gym. (I'm no body builder I just like to stay fit). 6 weeks later it is showing signs of recovery.

My question to those who have gone before me relates to energy levels and strength.  How long did it take before you felt a return to near normal levels ? I'm doing all I can to be proactive in managing my return to normality. I was seeing an exercise physiologist but I found her to be unsuitable for my need.  I have lined up a replacement and can't wait to have a pathway set out which I can follow.

Guess I am just busting to get back into racing with the guys on the bunch rides. Hoping to be back to full fitness by the end of 2015.



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

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