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Author Topic: still detectable after 2 months lof Harvoni  (Read 18736 times)

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Offline ginny

  • Member
  • Posts: 6
still detectable after 2 months lof Harvoni
« on: May 14, 2015, 01:22:26 am »
Hello everyone. I'm new to this group but have read posts before joining. I just read a lot of comments re. "relapse" earlier tonight. I am upset because after 2 months of Harvoni I'm still detectable. Non quantifiable amounts of virus though at 1 month. I expected it to be undetectable at 2 months but it was still non-quantifiable. Does anyone know any cases like this and if so what happened? I feel like I'm the only 1 who's been let down like this and I feel guilt about whatever it was that I did to effect the outcome.
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Offline dragonslayer

  • Member
  • Posts: 873
Re: still detectable after 2 months lof Harvoni
« Reply #1 on: May 14, 2015, 09:21:20 am »
Ginny,

Youre not the only one.. I was in the same boat you were at the end of my 8 wk treatment... Actually, I was worse; I tested detected with a load of 29 at EOT.   And at 11 wks post treatment, Im UNDetected, SVR.   And, the good news is you're probably going to be undetectable soon.   Im enclosing 2 links which discuss this .  Keep in mind Gilead used  a response and SVR criteria in their trials of < LLOQ(25).  That would include both 'detected' and 'undetected' values beneath LLOQ (Lower Limit Of Quantification).

http://forums.hepmag.com/index.php?topic=2108.0

http://forums.hepmag.com/index.php?topic=2383.0
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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 Karen3717

  • Member
  • Posts: 28
Re: still detectable after 2 months lof Harvoni
« Reply #2 on: May 14, 2015, 09:31:30 am »
@ Ginny.  I just finished week 8 of 12 & I am still detected @ <15.  Don't despair.  The links that Paul posted are most helpful in understanding how these tests quantify HCV.  Although it is disappointing, there is really no reason to think the worst.  The most important test will be 12 weeks after treatment completed.  I feel your pain!  But, we gotta keep the faith!
Karen
Logged
Transfusion 1982; Multiple accidental needlesticks; healthcare worker
(+) HCV antibody 1991
Genotype 1a
2001-Pegintron/Ribavirin 48 wks. Relapse 2mo post tx
2015-VL 316,000
Fibrosure-F2
Started Harvoni 3/13/15
2 weeks:  HCV PCR <15-DETECTED
4 weeks: HCV PCR <15-DETECTED
8 weeks: HCV PCR <15-DETECTED
12 weeks:  HCV PCR: NOT DETECTED!
4 Weeks EOT: HCV PCR:  NOT DETECTED!
12 Week post TX:  HCV PCR NOT DETECTED!

Offline suenashed

  • Member
  • Posts: 5
Re: still detectable after 2 months lof Harvoni
« Reply #3 on: May 14, 2015, 02:11:57 pm »
My husband is still detectable and he just finished his treatment. His viral load is less than 12, and all other stats are good. We called Harvoni and they said that they consider that a SVR, of course you have to test that way 6 months after treatment. But it is certainly unnerving. We are asking when most others are undetected, why is he still testing positive? He hasn't gotten the final blood test yet, which will be next Monday. Will be looking to see how the rest of you are doing. Interesting to see that there are others in the same boat.
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Offline ginny

  • Member
  • Posts: 6
Re: still detectable after 2 months lof Harvoni
« Reply #4 on: May 16, 2015, 10:49:34 am »
Wow. Thanks everybody for the great support. The NP in charge of the Hep C treatment program at Kaiser emailed me and briefly told me in his detached way, not to worry. The viral load might still ne undetectable ("undie"?). Reading your varied and experiential responses was way more reassuring. This is a responsive and very helpful group. I'm going to recommend this group to my friend who is around my age (60-ish) who is about to start Harvoni. Meanwhile I will continue to read about how everyone else is doing. This too is reassuring.
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Offline ginny

  • Member
  • Posts: 6
Re: still detectable after 2 months lof Harvoni
« Reply #5 on: May 16, 2015, 10:56:07 am »
Oh and by the way, thanks for the links dragonslayer (great name). Besides getting access to good info,  :)I am learning a lot of terminology as well such as SVR and LLOQ.  :)
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Offline ma snart

  • Member
  • Posts: 65
Re: still detectable after 2 months lof Harvoni
« Reply #6 on: June 20, 2015, 12:24:50 pm »
Ginny, read our post, my wife Helen didn't clear until week 10, she was tested every week or two throughout treatment, and then at week 17 and 18 she was detected again, sheesh, we thought the rug was pulled out from her, but at week 19 thru 24 undetected, also at post treatment week 4 UNDETECTED, coming up on week 8 and we will test again, so there is some ups and downs, hang in there.
Logged
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline atomic dog

  • Member
  • Posts: 160
Re: still detectable after 2 months lof Harvoni
« Reply #7 on: June 21, 2015, 12:40:01 am »
I was in the same boat. What are your VL levels?
Logged
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 atomic dog

  • Member
  • Posts: 160
Re: still detectable after 2 months lof Harvoni
« Reply #8 on: June 21, 2015, 12:41:16 am »
I was in the same boat. What are your VL levels?
Logged
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 ginny

  • Member
  • Posts: 6
Re: still detectable after 2 months lof Harvoni
« Reply #9 on: June 23, 2015, 02:02:57 am »
I just got my 1 month post treatment test and I am still what I've heard you all refer to as LLOQ. Too little virus to count. I'm trying to read all of your recent posts and get back to you all tomorrow.
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Offline ginny

  • Member
  • Posts: 6
Re: still detectable after 2 months lof Harvoni
« Reply #10 on: June 23, 2015, 02:05:57 am »
I forgot to add my LFTs are within normal limits and have been since treatment. Yje only thing that has remained a little elevated is my PT/INR.
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Offline ma snart

  • Member
  • Posts: 65
Re: still detectable after 2 months lof Harvoni
« Reply #11 on: July 02, 2015, 06:10:28 pm »
Same boat here, did not clear until week 10, plus had 2 consecutive test that showed detected at weeks 17 and 18, now 8 weeks post and still UNDETECTED
read profile
Logged
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline ginny

  • Member
  • Posts: 6
Re: still detectable after 2 months lof Harvoni
« Reply #12 on: July 05, 2015, 10:39:40 am »
I am catching up on recent posts. From what I'm reading there is a better than average chance I will become undetectable yet. I'm about 1.5 months post treatment. Congratz on maintaining your un-detectability :)
I hope I can say that soon.  This Hep C forum is the only place I can go to get such detailed info and real encouragement and hope. Thank you everybody. I'm very grateful this forum exists.
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Offline MelHu

  • Member
  • Posts: 33
Re: still detectable after 12 weeks GT 2b with rashes
« Reply #13 on: September 27, 2015, 05:55:15 pm »
Hi everyone
I received my EOT lab results and hoping others have the same experiences. I've noticed there aren't too many people with GT 2.  The only TX was 12 weeks of Sovaldi/Ribavirin for my type. I received a letter stating that I was <20 VL IU/ detectable at the end. I am hopeful it will clear as the weeks progress.
Was wondering though, if anyone has had skin rashes and issues post TX. My skin is breaking out with huge bumps. Some have erupted and are oozing with redness and swelling. Been hearing alot of people developing rashes. How long do they last. How about the fatigue from the anemia? 
MelHu
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: still detectable after 12 weeks GT 2b with rashes
« Reply #14 on: September 27, 2015, 06:06:07 pm »
Quote from: MelHu on September 27, 2015, 05:55:15 pm
Was wondering though, if anyone has had skin rashes and issues post TX. My skin is breaking out with huge bumps. Some have erupted and are oozing with redness and swelling. Been hearing alot of people developing rashes. How long do they last. How about the fatigue from the anemia? 
MelHu

Hi MelHu. Some people pull out of the ribavirin-induced anemia very quickly once treatment stopped. Lynn K was back in the normal range after just 10 days! I, on the other hand, am probably still below normal on my hemoglobin and red blood cells, and I am now 2 months post-tx. (I will have those labs done next week so will know more.) However, it turned out I was also deficient (or at least quite low) in iron and B12. And both are necessary to build more red blood cells and form hemoglobin. So I can't blame my slow recovery entirely on the ribavirin. I am supplementing daily for the things I am deficient in. You may want to be checked for iron and B12 as well. Better to know than not know if you turn out to be low and are struggling with riba-anemia.

My rash was short-lived during treatment but came back during my post-tx problems. Everyone is different on these things, it seems. Eating a good diet and not being deficient in any vitamins or minerals will help you recover faster.

best,
kim :)
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Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: still detectable after 2 months lof Harvoni
« Reply #15 on: September 27, 2015, 08:02:09 pm »
Just to add about iron supplements as you are F3 you should ask your liver specialist. For myself with liver cirrhosis F4 I have to avoid supplements with iron as excess iron can harm the liver

http://www.livestrong.com/article/327747-iron-supplements-liver-damage/

Good for all of us to consider especially those with liver damage to be cautious with all our herbal, vitamin, and OTC medicine choices
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: still detectable after 2 months lof Harvoni
« Reply #16 on: September 27, 2015, 09:13:12 pm »
Quote from: Lynn K on September 27, 2015, 08:02:09 pm
Just to add about iron supplements as you are F3 you should ask your liver specialist. For myself with liver cirrhosis F4 I have to avoid supplements with iron as excess iron can harm the liver

http://www.livestrong.com/article/327747-iron-supplements-liver-damage/

Good for all of us to consider especially those with liver damage to be cautious with all our herbal, vitamin, and OTC medicine choices

Good point, Lynn. I am seeing my liver specialist next week and am going to ask him about my daily iron supplement that I have been taking since Sept 2. It was my GP who advised it when we saw how low my ferritin was. Do you think that as long as my ferritin is low on my blood tests (which I am checking monthly) that there could be any problem with excess iron in my liver from my supplements? I had been thinking I was 'safe' on that score so long as I monitor my blood ferritin and stop taking iron once it is well into the normal range.

kim
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Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: still detectable after 2 months lof Harvoni
« Reply #17 on: September 27, 2015, 10:16:38 pm »
Well not a doctor but my layperson assumption is if your ferritin (iron) levels are low I guess it would be ok but again not a doctor
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: still detectable after 2 months lof Harvoni
« Reply #18 on: September 27, 2015, 10:26:18 pm »
Thanks Lynn. :)

kim
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/
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