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Author Topic: Has anyone felt like the treatment isn't working?  (Read 7897 times)

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Offline dragonslayerinprogress

  • Member
  • Posts: 62
Has anyone felt like the treatment isn't working?
« on: January 26, 2016, 05:57:21 am »
On week 2 now of the Solvadi/Ribavirin treatment. So far no side effects. Normal fatigue that I had before treatment is all that's there. Sometimes I wonder if the medication is working? Wanted to do labs after this week just to check it out but the dr. is waiting until week 3 (ending) to do labs.
I just wish I knew as it gives us hope! Anyone ever feel this way as well?
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Has anyone felt like the treatment isn't working?
« Reply #1 on: January 26, 2016, 08:47:37 am »
A LOT of people on these forums have felt that way! It'd be great if there were a way we could peek inside our bodies, but the next best thing is labs. For many of us, those came after week 4, but you'll be getting them after 21 days rather than 28.

Waiting is the hardest thing for most people on these forums. The wait for the first labs, the wait for the next labs either because the HCV is still detectable (even though the viral load is much lower than pre-treatment) or because it was undetectable on the first labs but the person wonders whether it has stayed that way. The long wait from the end of treatment until 12 weeks later, to find out if the person reached SVR12 and is therefore cured. Etc.

My impression from reading these forums is that people on Ribavirin tend to be more antsy than those not on Ribavirin. If my impression is correct, then the extra worry could be a side effect of the Ribavirin.

Just remember: your odds of a cure are excellent, and if you should end up in that very small group of people who aren't cured by this particular treatment, there are other ways to slay the dragon.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: Has anyone felt like the treatment isn't working?
« Reply #2 on: January 26, 2016, 02:15:13 pm »
I'm just a worrier in general and really could kick myself for not doing the Solvadi treatment last year when first dx with Cirrhosis. Level 2 in 2013. Maybe the fibrosure was wrong the whole time, I have no idea. I'm just praying I will live and that the liver will regenerate enough to where I can still enjoy life. Now I have grandchildren and my daughter just graduated RN school so I have one son that I want to make sure is going to be ok if something were to happen to me. Just trying really hard to make that happen. Knowing that I've kicked this will give me a bit more hope :-) Thanks for the reply.
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Has anyone felt like the treatment isn't working?
« Reply #3 on: January 26, 2016, 03:59:24 pm »
FWIW, I'm considerably older than you and, if you compare our viral loads and ALT and AST before treatment, I was a lot worse off, but I'm cured. Since you say you're a worrier, I guess you can't not worry, but it is very, very, very likely that you will be cured, your cirrhosis will diminish, and you'll have a lot of years ahead of you.

Again FWIW, my hepatologist, who has hundreds of HCV patients, has said if my next FibroScan is <12 kPa, I won't have cirrhosis any more. Dropping that far from my pre-treatment 19.5 kPa may sound pie-in-the-sky, but the doc said it like it's a very real possibility, and there's another forum member (beto) who had an even larger drop in kPa (from "14.5 to 6.1 in about 5 months"). The liver has a great ability to regenerate, and we finally have a fast-growing number of drugs with very high cure rates to help people kick HCV.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Has anyone felt like the treatment isn't working?
« Reply #4 on: January 26, 2016, 05:21:56 pm »
Hi,
I took this same treatment, after about two weeks the side effects will kick in. Waiting 4-5 weeks before the first viral load test was the protocol.  The sovaldi will work, but be patient. Make sure you're taking plenty of water.
I am over a year after treatment and test clear of the virus.

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: Has anyone felt like the treatment isn't working?
« Reply #5 on: January 26, 2016, 06:31:40 pm »
Thanks for the "hope" and encouragement. I have never had a Fibroscan, just the Fibrosure. I didn't want to take one before treatment just in case it showed better than the Fibrosure and didn't want to miss out on treatment. Did you have any symptoms? I have for the past 6 months noticed a bit of swelling in my feet and face when waking up and then it goes away after an hour or so. Usually my eyes run it out.
The only thing different with my labs last time was my Albumin was 3.0 or so and my Bilirubin was 1.9. I think that's what scared me the most. That and my platelets dropping from 78,000 in April to 50,000 in December. Every time I bring up other things, everyone seems to say it's all Hepatitis C related. I hope those improve :-) Thanks again. Helps talking to people that know where I'm coming from :-)
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline BillT

  • Member
  • Posts: 573
Re: Has anyone felt like the treatment isn't working?
« Reply #6 on: January 26, 2016, 07:25:38 pm »
Hi Dragonslayer,
                       I thought that very same thing a time or two.I went through my entire treatment with every few sxs.Be grateful and don't even think about it.You'll be fine.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Has anyone felt like the treatment isn't working?
« Reply #7 on: January 26, 2016, 07:33:35 pm »
. . . Did you have any symptoms? . . .

Because I have several other chronic conditions, I have a whole slew of other symptoms, but naming them would just confuse things. When I saw the hepatologist 3 weeks ago, I asked which of the other conditions would clear up now that the HCV is gone, and he said only time would tell which were extrahepatic manifestations (EHMs) of HCV and which are actually separate diagnoses.

I've read of others on these forums having the various symptoms you describe, but who had which ones, and which treatment s/he was on would make a difference as to how relevant to your case. I hope others will see this thread and weigh in.

Ditto what Bill said.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Has anyone felt like the treatment isn't working?
« Reply #8 on: January 27, 2016, 10:41:55 am »
Hi Dragonslayer.  I think you were smart to forego the Fibroscan test.  It very well may have muddied the water regarding treatment approval.  That being said, the Fibrosure blood test is not considered as accurate as the scan.  The results can vacillate widely.  That's good news for you.  It got you approved, but your liver may be in better shape than you think!

The worrying is the worst!  I can really empathize.  What works for me (sometimes  ::)) is practicing mindfulness as best I can.  Also, listening to audiobooks while doing chores, yardwork, etc.  The biggest challenge in this whole HCV mess is mastering the waiting game.  Waiting for drug development, waiting for treatment approval, waiting for treatment response, waiting for sustained virological response.

Soooo, quite literally, don't hold your breath!  Breathe deeply and slowly when the anxiety hits.  You've found a forum of a whole bunch of folks going through the same thing who are wishing you the best!
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Has anyone felt like the treatment isn't working?
« Reply #9 on: January 27, 2016, 12:28:57 pm »
I took the Fibrosure and Firoscan tests before my treatment. Both showed F-3 fibrosis results. The Fibroscan score showed there was no cirohsis. No harm finding the truth. I know I would never get a biopsy, that is for sure. I had one years ago and it is not the picnic they say .

 


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