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Author Topic: Has anyone finished new treatment like me?  (Read 26665 times)

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Offline Shirleyb

  • Member
  • Posts: 15
Has anyone finished new treatment like me?
« on: July 23, 2014, 03:22:24 pm »
I have finished s/o and feel great. I had minimum side effects, but after feeling cured then receiving the call to go for addition labs. Apparently some hepc geno1b with stage 4 cirrhosis the hep comes back. I am sitting here awaiting results from the lab now. August 8th will be my 6 month check up, praying for an undetected today and for the rest of my life! I just found this forum today, I wish I had it from the beginning of this journey! I am happy it is here now!

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Has anyone finished new treatment like me?
« Reply #1 on: July 23, 2014, 10:48:36 pm »
THX FOR JOINING,THAT HELPS ME AS WELL.  EVERY COMMENT ON THIS SITE HAS HELPED ME ONE WAY OR THE OTHER. SO THX AGAIN IM PRAYING FOR YOU'  RIGHT NOW          WILLIE G

Offline AnnW

  • Member
  • Posts: 3
Re: Has anyone finished new treatment like me?
« Reply #2 on: July 24, 2014, 08:37:02 pm »
My husband is 9 wks into treatment and
was ND at 6 wks.  Doc says 2 new drugs to be
available by yr end, each less expensive
and are expected to be better than S/O,
that he can take if Hep C returns.  We
are anxious to hear of any long-term results
of S/O as well.  Also in stage IV cirrhosis
and will remain on transplant waiting list.
MELD dropped from 17 to 13 after
8 wks on S/O! 

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Has anyone finished new treatment like me?
« Reply #3 on: July 24, 2014, 10:29:55 pm »
Hi AnnW,

   As a matter of fact I just took my last pills 25 minutes ago. I hope you are free and get rid of the bad stuff the medicine did. Congratulations to all brave souls.

Welcome to a new day.

yag1064
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline meshell93

  • Member
  • Posts: 13
Re: Has anyone finished new treatment like me?
« Reply #4 on: July 27, 2014, 10:04:30 am »
Hi all
I am on my 4th day of s/o and after reading these posts I am confused. I thought that once you've become non detected you've killed the virus. Is this not true?

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Has anyone finished new treatment like me?
« Reply #5 on: July 27, 2014, 12:23:10 pm »
Hi Meshell93,
    There have been cases of re-occurrence of the virus after treatment. The amount of cirrhosis  in the liver seems to be a factor. But in general once the virus is undetectable to the test it doesn't regenerate. The confirmation for myself at least is after 12wks and then again three months after ending treatment.
 One thing that will help treatment results is to reduce stress. One way is to do this is by practicing yoga or meditation.

  May you find freedom from the invader.

  yag1064
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Mpetrecz

  • Member
  • Posts: 50
Re: Has anyone finished new treatment like me?
« Reply #6 on: August 04, 2014, 08:02:31 am »
I'm down to one more day of S/O.  I was undectable at 4 weeks,  I felt great until the last two weeks....nothing bad, just tired and achy....just don't feel as great as I did through most of this treatment, brain clarity and vision are the most surprising things,,,,way way better than before.....my energy is still good and now I can work on my strength,
Yes, there are people relapsing,,,,,it has to do with the q80k polymorph something or another,,,,,you'll have to look it up,  half of the 1a's carry this gene....but it's a small % of them tht relapse,,,,.so don't stress....the new meds coming out will clear you if you relapse! they are saying hep c will be gone within 10 years,,,,,,we are winning folks!!!!

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Has anyone finished new treatment like me?
« Reply #7 on: August 04, 2014, 09:20:15 am »
THX SHILRELYB, IT SOUNDS GREAT THAT YOU FEEL GREAT! THATLL KEEP ME GOING FOR ANOTHER DAY,DONT LET THOSE LABS GET YOU THINKING OR DWELLING[MY FAVORITE PASS TIME LOL]  JUST KEEP FEELING GREAT AND PLEASE KEEP US POSTED,  WILLIE G

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Has anyone finished new treatment like me?
« Reply #8 on: August 04, 2014, 09:27:59 am »
[ KNOW WHAT YOU MEAN ABOUT EYES AND CLARITY,, MY VISION GOES IN AND OUT AND  I WILL JUST BE SITTING THERE AND DIFFERENT THINGS OF MY PAST POP UP, WHICH IS COOL AND ALOT OF MEMORIES [AND WIERD STUFF TOO, LOL], THX FOR SHARING,, WILLIE G PS  MY THINKIG AS FAR AS WHERE I PUT MY KEYS, MY MADDNESS BEFORE I GO OUT THE DOOR SURE HASNT CHANGED LOL]

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Has anyone finished new treatment like me?
« Reply #9 on: August 04, 2014, 09:28:18 am »
[ KNOW WHAT YOU MEAN ABOUT EYES AND CLARITY,, MY VISION GOES IN AND OUT AND  I WILL JUST BE SITTING THERE AND DIFFERENT THINGS OF MY PAST POP UP, WHICH IS COOL AND ALOT OF MEMORIES [AND WIERD STUFF TOO, LOL], THX FOR SHARING,, WILLIE G PS  MY THINKIG AS FAR AS WHERE I PUT MY KEYS, MY MADDNESS BEFORE I GO OUT THE DOOR SURE HASNT CHANGED LOL]

Offline Mpetrecz

  • Member
  • Posts: 50
Re: Has anyone finished new treatment like me?
« Reply #10 on: August 04, 2014, 03:07:53 pm »
Lol....willie g......every now and then I lose something to.....stand in a fog....then it comes....I call that Sometimers,,,,.sometimes I remember and sometimes I forget, but now it's far and few compared to what it was pre meds....
I'm basically wondering if anyone has gone through withdrawal.....form the meds.  I've heard this is something that happens,,...guess I'll find out,....the first two weeks on the meds were the weirdest....so I'm thinking there will be an adjustment to not having them....or the hep c.  A lot of people that have taken ribo with sovaldi have rages....and sore joints....hair loss.....but there's not much talk about the S/O withdrawal,,,,,maybe there isn't any....I will post and let everyone know how I feel and if I have any withdrawal....I'll also post as my strength and energy and life comes together,  I think we need to stay in touch,...many of us will have liver issues down the line.....we are warriors....

Offline Bucky

  • Member
  • Posts: 341
Re: Has anyone finished new treatment like me?
« Reply #11 on: August 11, 2014, 03:59:50 pm »
Mpetrecz,   Lord, I hope there aren't any withdrawals since I am taking S&O. I hope I don't start craving the pills and start selling my stuff like I did when I was on Crack 25 years ago. Well one thing, @ $1750.00 a day my house will be empty in a couple weeks LOL ...Got to keep it real folks...!
 Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Has anyone finished new treatment like me?
« Reply #12 on: August 11, 2014, 05:45:19 pm »
hi mpetrez, yes i have wondered that too,  i am on so many other diferent  things and in my lifetime i have come off of this and that cause they wanted or i wanted to try something else,, they say these two meds. are the least for after effects but i figure if you have something this powerful in your system for months , i will probably feel something. hey, who knows at the end the side effects will be all good,, more clarity, less pain, better sleep,etc.  we will have to get back in our so called ;normal; lifes.  have a good eve.  willie g

Offline Mpetrecz

  • Member
  • Posts: 50
Re: Has anyone finished new treatment like me?
« Reply #13 on: August 12, 2014, 08:27:33 am »
I'm one week off the meds....and no.....I don't crave them at all...lol.
The last few weeks of the meds and the first few days off the meds.....I was very tired and achy....knees...feet....body soreness....
It's slowly going away and after a week I feel pretty good.  No other problems at all.  The brain clarity is still fantastic....and my eyes are getting better...I have to go down in glasses strength,,..woot woo!
So I guess no one posts, because there's nothing to post about,....I feel badly for the people on the tougher drugs....but to get to Undectable is everything,,,,
I have been told we are never, totally....cured....well still have some hep cells, but our body's can handle what is left over....I don't know....but I feel very optimistic to of been on sovaldi and to be undectable.  So hang tough.....we are all in this together.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Has anyone finished new treatment like me?
« Reply #14 on: August 13, 2014, 10:32:33 am »
Mpetrecz - You wrote, "I have been told we are never, totally....cured....well still have some hep cells, but our body's can handle what is left over..."
Actually, most of us are cured - really cured. I am hoping that is your outcome.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline patsy

  • Member
  • Posts: 27
Re: Has anyone finished new treatment like me?
« Reply #15 on: August 30, 2014, 01:58:55 pm »
I just wanted to share my news. I just got my most recent blood test results and everything is normal and Hep C is normal!

Offline patsy

  • Member
  • Posts: 27
Re: Has anyone finished new treatment like me?
« Reply #16 on: August 31, 2014, 10:49:25 am »
I meant to say Hep C showed up negative, not normal. Haha! My doctor is having me get a blood test 6 months after the 30 day one, not 3 months. Then again in a year. I sure hope it doesn't show up again. I felt some kind of mental withdrawal after stopping the S/R/P. I just got so used to having my life revolve around it that it seemed weird. I am feeling much better too. Got my energy back and feel better emotionally.

Offline AnnW

  • Member
  • Posts: 3
Re: Has anyone finished new treatment like me?
« Reply #17 on: September 18, 2014, 11:58:45 pm »
My husband is 4 weeks out from last S/O
dose.  Was ND (<43) at 6 weeks, 10 weeks, and
final week.  Monday's labs (4 wk out) were
DETECTED (<43) with all other monthly labs
greatly improved and MELD down to 12 from
17 at beginning.  Numbers were all so much
better than usual that it was a surprise
when the HCV results were not ND.  We are
aware if new med due out before yearned
but are in the dark on what to expect
between now and then.  Since he went from ND
at end of treatment to Detected 4 weeks
after final  we have to assume that
HCV will gradually worsen.  I want to believe
that the HCV will remain only a trace.  Hopefully
can get the new med when it comes on the market.
Does anyone have any info on the new med  (name,
mfg, release date, etc)?  I pray that you all
are ND, ND, ND, and remain disease FREE!

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Has anyone finished new treatment like me?
« Reply #18 on: September 19, 2014, 12:32:46 am »
AnnW - don't be surprised if the viral load spikes - it does that - it is not a bad indication - if it returns, it just does that. Oct 10 is the expected approval day - I know nothing more
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Has anyone finished new treatment like me?
« Reply #19 on: September 21, 2014, 04:06:29 pm »
So once competed and have an SVR I assume we still have show hepc antibodies in blood test, correct?

Offline patsy

  • Member
  • Posts: 27
Re: Has anyone finished new treatment like me?
« Reply #20 on: September 21, 2014, 06:26:48 pm »
It sounds to me from everything I piece together that it depends on the person. The spiking viral load referred to makes me think that for one thing. I had none detected at 4 weeks into treatment and then at the thirty day test. I celebrated that one! Hopefully I won't get disappointed at the 6 month and one year tests. Got my fingers crossed.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Has anyone finished new treatment like me?
« Reply #21 on: September 21, 2014, 07:36:35 pm »
Correct Tess1971
Patsy - if you are non-detectable at 12 weeks post-treatment, you will likely stay that way
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline patsy

  • Member
  • Posts: 27
Re: Has anyone finished new treatment like me?
« Reply #22 on: September 21, 2014, 10:05:34 pm »
Thanks lporterrn. I was surprised that my doctor didn't tell me to have a blood test at 3 months. She said to do it: 1 month, 6 months and 1 year. It seems the consensus here that having one at 3 months is standard. Oh well, I see her tomorrow. I will mention it to her. To tell you the truth, I don't like her and wouldn't be surprised if she told me I didn't know what I was talking about. She isn't very flexible and we have a personality conflict. Haha! Well, I guess it's almost over anyway. I hope.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Has anyone finished new treatment like me?
« Reply #23 on: September 22, 2014, 02:43:34 am »
Dr I have only checks hemoglobin and platlets every few weeks during treatment.  And checks viral load month after, then 6 months, then year, same as yours.

Offline patsy

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Re: Has anyone finished new treatment like me?
« Reply #24 on: September 22, 2014, 09:53:46 am »
Okay. I guess I jumped to criticize her too quickly. I am maybe too anxious to receive more reliable good (hopefully) news. Thanks Tess.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Has anyone finished new treatment like me?
« Reply #25 on: September 22, 2014, 11:28:53 am »
Patsy - honestly, although the 12-week test is fairly standard, most of us don't really believe we are cleared until at least the 6 mos, and then 1 year post treatment. So although there is every reason to be optimistic with an SVR-12, some of us could just save the co-pay because we won't believe the results. However, I did like finding out I had an SVR-12 - it made me feel really hopeful.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline MWS

  • Member
  • Posts: 8
Re: Has anyone finished new treatment like me?
« Reply #26 on: October 01, 2014, 09:39:37 am »
I just took the last of my S/O. UD after 6 wks liver enzymes normal after 8 wks.  See the Dr next week and will have blood work after that.  I am so grateful for this medicine and life free of this disease.  It has always been in the back of my mind for the past 20+ years.  I do not take this lightly, i try to live a healthy lifestyle, which includes exercise, eating healthy "most of the time" I'm only human :-), and I do not drink at all.  Glad i found this forum and will check in time to time.  Mark

Offline thill

  • Newbie
  • Posts: 1
Re: Has anyone finished new treatment like me?
« Reply #27 on: October 01, 2014, 10:00:38 am »
My husband just finished S/O/R 12 week treatment.  He had minimal side affects while on treatment. Some minor nausea, brain fog, and minor fatigue.  But after ending treatment his fatigue has gotten horrible, brain fog, and feeling anxious has gotten worse.  He said he felt better on the meds and is hoping it gets better. Has anyone else on this treatment had the same withdrawal side affects? And if so, how long has it lasted? He was on 12 week treatment, geno type 1 B- stage 3 fibrosis.  He has no other health problems other than mild high blood pressure.

 


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