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Author Topic: Five weeks on Harvoni and still detected  (Read 12614 times)

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Offline atomic dog

  • Member
  • Posts: 160
Five weeks on Harvoni and still detected
« on: March 26, 2015, 10:25:03 pm »
Trying not to freak out after reading the post yesterday that in some cases patients with detected levels at the end of treatment can remain HCV free. Not feeling good about my latest test though that showed my HCV RNA at <20 IU/mL, same as 3 weeks ago. Anyone else experiencing these kinds of results?
« Last Edit: March 26, 2015, 10:28:23 pm by atomic dog »
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline rgr

  • Member
  • Posts: 9
Re: Five weeks on Harvoni and still detected
« Reply #1 on: March 26, 2015, 10:51:36 pm »
Yes atomic dog I had the same experience as you but I was at 18. I have one of the best Hepetologists in the NW and she told me things were going great and not to be concerned. I have two more weeks on treatment then I'm hoping for another test. I have read of others having same concerns but ended up in the end being cleared of the virus. No need to worry or freak out, that won't help a thing. Stay calm and carry on!.....Roger   
Geno> 1a, Stage 3 fibrosis, Started 12 week Tx January 2015, VL 15 Million.

Offline dragonslayer

  • Member
  • Posts: 873
Re: Five weeks on Harvoni and still detected
« Reply #2 on: March 26, 2015, 10:55:30 pm »
I finished treatment at 8 wks with  detected 29.. I freaked out a little.  7.5 wks later I did another test..  Over that time, it went down to detected < LLOQ (12).   Doctor said he thinks Im good... If it were going to relapse it would have done so in well under 7.5 wks.  If I were you, Id just be buoyed by the article that was posted about having a low detectable number at EOT is NOT predictive of failure with the new drugs.  And dont forget that Gilead in the trials used loads of < LLOQ(25) for determining SVR!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline atomic dog

  • Member
  • Posts: 160
Re: Five weeks on Harvoni and still detected
« Reply #3 on: March 26, 2015, 11:01:34 pm »
Thank you both, trying to hold fast but you guys know how tough it can be. Thanks for the encouragement.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Momof3

  • Member
  • Posts: 55
Re: Five weeks on Harvoni and still detected
« Reply #4 on: March 27, 2015, 01:23:59 am »
I am in the same boat. I was <15 detected at 4 weeks of my 8 week treatment, my doctor and nurse both said this was fine and not to stress! They were happy with how it was going... Me... Not so much I really was and am upsett! I see almost everyone getting undetected. I am staying positive and just focusing on my diet and water. I have put sticky notes all over my house at the moment reminding myself I WILL BEAT THIS! They are everywhere lol my kids love them (they don't understand what they are really for, but I love seeing there faces and here them saying the phrase) I have faith in my doctors we will be ok!! Try not to stress too much! You will get there :)
Hep c GT 1a from transfusion at birth 1986
Treatment naive
Stage f0-f1 fibroscan score 2.5kpa
Harvoni started 02/11/2015 8 weeks
Baseline VL 689,594 ALT 35 AST 25
2 weeks ALT 13 AST 16
4 weeks VL <15 detected ALT 12 AST 15
 UNDETECTED  at EOT April 7
4 weeks post Harvoni UNDETECTED ALT 10 AST 14
12 weeks post Harvoni UNDETECTED ALT 8 AST 15
24 weeks post Harvoni UNDETECTED ALT 13 AST 18

CURED!!!!

Offline janne325

  • Member
  • Posts: 12
Re: Five weeks on Harvoni and still detected
« Reply #5 on: May 04, 2015, 11:15:55 pm »
I am new here and was approved today for 8 weeks Harvoni.  I am still in shock the procedure was so fast and all paid for.  I am 66 female with 1b under 6 million treatment na├»ve and have been living with this for 11 years. 
I am so upset to hear of relapse and detection of others and so very sorry.
I raised concern with my Dr. that there are no guidelines!  IF WE CAN INFECT OTHERS WITH OUR TOOTHBRUSHES, RAZORS, ETC., WE CAN CERTAINLY RE-INFECT OURSELVES.  My first inclination is to sterilize everything by soaking all personal items in Clorox (1part Clorox to 9 parts water) for 20 minutes and starting over with fresh new washcloths or disposable cloths, toothbrushes, etc, bath sponges, manicure products, makeup, etc.  and then keeping everything sterile all throughout treatment.  My mouth bleeds sometimes when I brush my teeth, always when I get my teeth cleaned.  I work outside in my garden and get scratches on my legs and arms sometimes and sometimes cut my finger a little when I slice food in the kitchen.  I live alone and don't cook for anyone on purpose.  I am seriously wondering if people are relapsing because they have somehow re-infected  themselves???  Maybe a nail clipper that had some blood on it? or a handkerchief?  I don't know.  It just freaks me out at the possibility.  I think it is very real that this is something we all need to pay attention to and sterilize our environment for our own safety.  Wipe everything down with Clorox that could possibly have been exposed to our own blood.  Also, should we take vitamins and other supplements or not take them to put less work on the liver?  It makes sense to eat as healthy as possible and organic and avoid foods like red meat that is hard for the liver to digest. Does anyone know of any detailed guidelines on how NOT to re-infect ourselves?  Would like to hear what you all have to say.  Thanks,  JJ

Offline atomic dog

  • Member
  • Posts: 160
Re: Five weeks on Harvoni and still detected
« Reply #6 on: May 05, 2015, 02:06:33 am »
You should do whatever makes you confident. I used to tease folks for swapping out their toothbrushes, but I do it weekly. I'm diabetic, so I sanitized all my glucose meters and stick pens. I haven't stressed over it though. Harvoni has knocked the virus down to the point where the virus is undetected and I'm able to eliminate it on my own. Hopefully that will continue to be the case for the next 12 weeks and beyond. Just keep taking the meds, keep drinking lots of water, eat as healthy as you can and rest. You'll be fine. Frankly, my diet has sucked--I gained 10 pounds. I did manage to eat salads almost every day--yay! As for guidelines, you can search this forum and you'll find lots of good advice. Relapse is rare. Remember that the odds are on your side.
« Last Edit: May 05, 2015, 02:19:11 am by atomic dog »
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline janne325

  • Member
  • Posts: 12
Re: Five weeks on Harvoni and still detected
« Reply #7 on: May 05, 2015, 07:45:10 am »
Thanks for the reassurance.  I am really anxious and trying to wrap my head around the idea that this could really work and I could actually be free and maybe even live to a ripe old age and have a relationship.  We owe it to ourselves to give it our very best shot and knowledge is power when it comes to taking precautions to not re-infect ourselves.  The fact sheets posted on another thread actually support my concerns.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/How_long.pdf
and
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/personal_care.pdf

I wish my Dr. office would do a hand out or something.

Offline atomic dog

  • Member
  • Posts: 160
Re: Five weeks on Harvoni and still detected
« Reply #8 on: May 05, 2015, 09:25:45 am »
For better or worse, we are are our best advocates. A lot of us, myself included, had to fight tooth and nail to get on Harvoni, battling doctors, insurance companies, and other bureaucracies. That's the way of the world. And it's line of those things that has made this forum so valuable, since crowd-sourced information can be a powerful tool. Hang in there.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Gramsgrl

  • Member
  • Posts: 11
Re: Five weeks on Harvoni and still detected
« Reply #9 on: May 05, 2015, 10:31:59 am »
Janne325

I wouldn't worry too much about re-infecting yourself. I had Hep C for 25 years before I even found out! During that time I never gave it to my husband who shared everything with me! Or to my 2 daughters who I breastfed for 14 months each and shared razors and nail clippers etc. They are all fine and un-infected so it is NOT that easy to spread the virus.
Try not to worry. Sometimes the virus is just harder to kill and you may need a longer treatment(but probably not) and I have also read that the viral load can become undetected weeks after the end of Harvoni Treatment, even if it was still detected near the end.

Good luck, Gramsgrl

Offline Lee

  • Member
  • Posts: 31
Re: Five weeks on Harvoni and still detected
« Reply #10 on: May 05, 2015, 10:05:41 pm »
Just like Gramsgrl, I have been married for 27 years and never knew I had Hep C until about a year ago.  Neither my husband nor my son have ever been infected, and I have cut myself (and bled) cooking and doing others things many times.  It must be pretty hard to pass along, thank goodness.

Good luck!
Female
Infected mid-1970's
Diagnosed 2013
Viral load prior to treatment: 6.6 million
Genotype: 1a
Started Harvoni: 4/20/15
Four week viral load: <20 too low to quantify
Eight week viral load: undetected

Offline atomic dog

  • Member
  • Posts: 160
Re: Five weeks on Harvoni and still detected
« Reply #11 on: May 06, 2015, 12:27:46 pm »
Lee, that's been my experience as well. I've been infected throughout my 27 year marriage, 2 kids, never passed it along, thank God, though it has affected my behavior in terms of intimacy.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline smaugslugger

  • Member
  • Posts: 12
Re: Five weeks on Harvoni and still detected
« Reply #12 on: May 11, 2015, 05:52:10 pm »
 On Friday, I received an email from the doc. She said that at 8 weeks my virus is detectable and that it shouldn't be. Either I or the pharmaceutical co made a mistake on recovering pill counts because I have some extra. Of course I blamed myself. All weekend, I stressed out, causing my back muscles to tense up so much that I am pain and making chiro appts, taking muscle relaxers, etc. I felt I blew the most important thing to me.
I called my clinic today. The nurse looked at my results and said that the doc made a mistake and the virus is undetectable after all!
I'm hearing stories about lab test mistakes, etc., so don't give up hope.


Offline atomic dog

  • Member
  • Posts: 160
Re: Five weeks on Harvoni and still detected
« Reply #13 on: May 11, 2015, 06:13:29 pm »
What are the numbers, the test results? usually measured in XX iu/ml?
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

 


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