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Author Topic: post treatment positives  (Read 19814 times)

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Offline smaugslugger

  • Member
  • Posts: 12
post treatment positives
« on: May 08, 2015, 01:46:57 pm »
I've had hep c for a long time---about 25-30 years, and for as long as I can remember, my energy has been compromised. It's almost like I've been living the life an 80 year old since I was in my twenties. I suspect that hep c is to blame.
I have 1 month of treatment left and would love to hear from anyone who has noticed a change in health, energy, mental clarity, immunity, etc. post treatment. Just need something to look forward to. Thanks in advance.

Offline Marnie

  • Newbie
  • Posts: 2
Re: post treatment positives
« Reply #1 on: June 01, 2015, 04:45:55 pm »
I finished 12 weeks Harvoni a month ago and am clear so far. I was out of shape when I started treatment and that hasn't changed. But my energy level is stronger and more stable. I haven't suffered from fatigue since treatment. I get tired - but normal tired - not the debilitating fatigue where I can't go on with my day. I go out now without worrying that I'm going to crash and be too exhausted to get myself home. I'm definitely in a better mood and am more active --and not as worried about serious liver problems down the road. I've gotten used to staying at home a lot but that can change if I want it . . . I have more freedom. I'm happier -- you will be too! Hope this helps.

Offline smaugslugger

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Re: post treatment positives
« Reply #2 on: June 01, 2015, 08:09:58 pm »
Thank you for the encouragement, Marnie. I took Sovaldi/Ribavirin, which, I think is a tougher regimen. I'll be done in less than a week. My energy has been really low throughout treatment, and I'm looking forward to getting all these drugs out of my system. Hoping for a different life post hep c. Thanks again.

Offline WholeFoods

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  • Posts: 73
Re: post treatment positives
« Reply #3 on: June 03, 2015, 12:56:02 am »
Before Harvoni I was having a lot of gastro and food intolerance problems. I was on Harvoni 3 months and stayed on a very clean and bland diet. I have been off Harvoni a little over a month and have been able to eat foods without discomfort that I couldn't before. I was also having chronic problems with oral/ocular lichen planus which seems to be getting better. Used to regularly get muscle spasms in my upper back and shoulders/headaches which seem to be getting better. Had a ganglion cyst for a year that went away on treatment. my hope is all these things I was dealing with either stay away or at least begin to subside then go away. I just feel like my body seems to be dealing with inflammation better, like  something starts to flare then quickly goes away.

Offline sapphire101

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  • Posts: 238
  • "Stop worrying and start living"
Re: post treatment positives
« Reply #4 on: June 03, 2015, 02:32:45 am »
Whole foods educate me about ocular lichen planus. What is it like? How did you know you had this?
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline smaugslugger

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  • Posts: 12
Re: post treatment positives
« Reply #5 on: June 03, 2015, 10:27:15 am »
Thank you for the positives. I have genotype 2 and am on sovaldi/ribavirin. I rarely read anything on this forum about those drugs. Everyone seems to be on Harvoni, which, I think, is easier to tolerate. Being a 2, I was told that Harvoni wasn't an option. I have less than a week left of treatment and am looking forward to feeling like myself again----or better. I have always been "the sick one" constantly making excuses at work and with friends---low energy, bad sleep, and a tendency to catch every bug around. It'll be interesting to see if that changes.

Offline WholeFoods

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  • Posts: 73
Re: post treatment positives
« Reply #6 on: June 03, 2015, 07:54:06 pm »
I heard Ribavirin takes awhile to get out of your system, but I think we have every reason to believe things like the hep fatigue and susceptibility to bugs will lessen with time as we heal.

Offline WholeFoods

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  • Posts: 73
Re: post treatment positives
« Reply #7 on: June 04, 2015, 02:24:41 am »
When you get lichen planus in the eyes they get red, burn, itch and ooze. The inside eyelids get dark red veins, eyelids can get puffy and under the eyelids whites of the eyes can take on a yellow tinge. The white part gets a clear film on it like "lose skin" usually doesnt respond to any kind of eyedrops, but sometimes the anti-histamine kind will help. Mine will flare up when my mouth and other affected areas flare.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: post treatment positives
« Reply #8 on: June 04, 2015, 03:22:50 am »
Hi Smaugslugger

Harvoni is Solvaldi compounded with another med ledipaspir. Most of the sides if any will be from the ribavirin.

I just finished 24 weeks of Harvoni and 15 weeks of Ribavirin. I have taken Ribavirin before so I had an idea what to expect but it was not near as tough as when I treated with interferon and riba years ago.

Some people become anemic on riba which I did basically immediately. I had to dose reduce after just 3 weeks because my HGB count lower than 10.0.

When I was tested 10 days after stopping riba my HGB had returned to almost where they were before treatment. I seem to have rebounded rather quickly.

But anyway it is doable just a bit tough for many kinda just keep putting one boot in front of the other and keep marching on you will get there eventually.

Good Luck on treatment. Like the name by the way ;)
« Last Edit: June 04, 2015, 03:25:33 am by Lynn K »
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 nicole_1234

  • Member
  • Posts: 134
Re: post treatment positives
« Reply #9 on: June 04, 2015, 11:35:17 am »
I finished Harvoni and was deemed SVR12 a week ago (cured) so it's been about 22 weeks with no Hep C in my body and 13 with no Harvoni and I do notice a difference in energy. I can concentrate better and I don't have that afternoon slump anymore. I just traveled half way around the world so I'm tired from jetlag, but even this feels easier to tolerate than with Hep c attacking my liver. I feel much better!!!! 

Also when I get back home to LA from Europe (it would be too hard here since I'm working and it's really hard to be particular about what I eat) I'm going to do a 3 month liver cleanse and really get myself I'm good shape (no sugar, gluten or alcohol/ lots of green veggies and good proteins). So I'm looking forward to that. I'm not eating terribly now or anything, I just want to take it easy and have fun though. When I'm home I can do better though, I'm sure my liver will thank me for it. Give it some room to heal.
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline WholeFoods

  • Member
  • Posts: 73
Re: post treatment positives
« Reply #10 on: June 20, 2015, 02:33:18 pm »
Update: couple months post tx, digestion has gone bad again, grrrrrr. But I agree that concentration is better and waking up with better energy than have had in years. Allergies and susceptibility to common viruses remain. Hope this gets better with time also as I believe that's what's causing the muscle aches I've dealt with for the last 5 years. Lichen planus flares with the allergies and viruses but not as severe and is resolving faster, yay! Loving the better energy and concentration though.

Offline KimInTheForest

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  • Believe in yourself
Re: post treatment positives
« Reply #11 on: June 20, 2015, 02:59:20 pm »
When I was tested 10 days after stopping riba my HGB had returned to almost where they were before treatment. I seem to have rebounded rather quickly.

Hi Lynn. I am very heartened to hear that your hemoglobin rebounded so quickly (just 10 days!) after EOT. I hope mine does likewise. I had read that it can take 4-8 weeks after EOT before hemoglobin is back to pre-treatment levels, when Ribavirin is involved.

And congrats @nicole_1234 on achieving SVR12! :)

good luck to all of us,
kim
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 Keithn8eb

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  • Posts: 7
Re: post treatment positives
« Reply #12 on: July 14, 2015, 12:08:11 pm »
This is my first time posting, and I hope I am in the right forum. My GI prescribed harvoni in early December, but it took a while for him to get my insurance company to cover it. I took my last pill June 7th. I had 2viral load tests during treatment, last one may 27th, and both were none detected, and am looking forward to my September test to be declared "cured". While I am extremely happy to have these early results, I am worried about a problem that has come up during harvoni treatment that my primary care doc and my GI doc have no answer for. First a fast background. I believe I contacted HepC in the mid-70's, did a round of interferon in the clinical trials, 12 months of interferon after FDA approval, tried interferon with ribaviron twice, but had the low red blood cell problem and was discontinued. Through the years I have developed thyroid problems - on synthriod - emphysema, and pulmonary embolism for which I am on blood thinners, supposedly for the rest of my life. Sorry for the long background. My question/problem is when I take a full deep breathe I feel a strong pressure and sometimes pain in the right side where I always thought my liver to be. I have had kidney stones once in my life, but my GI had done ultrasound of kidneys and bladder and a test of the emptying of the gall bladder. As I said, 2 of my doctors said I don't know, maybe the liver is taking its time rejuvenating. I know my health care is ultimately mine, but does anyone have any ideas that I can ask my doctors to investigate?

Offline coloradogirl

  • Member
  • Posts: 70
Re: post treatment positives
« Reply #13 on: July 17, 2015, 08:21:23 am »
Sometimes, my gallbladder complains. It is located in the middle of the liver, under the right rib cage. If you had a Hida scan as you said, then you probably have gall stones like I do. Too much fatty foods and coffee can irritate it. Sometimes, I just massage the area, it gurggles, and then feels better. I don't know to what point it would progress before one has the gall bladder removed. The stones are no fun, though. Hope this helps.
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline Keithn8eb

  • Member
  • Posts: 7
Re: post treatment positives
« Reply #14 on: July 17, 2015, 02:03:51 pm »
I have a return appt with GI for the 3 month post treatment viral count and will bring that up. Again! I do notice that when I lay down and rest, laying prone, it seems to lighten or slowly go away.  Thanks.

Offline Lynn K

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  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: post treatment positives
« Reply #15 on: July 17, 2015, 10:46:51 pm »
I recall having a very deep pain that sometimes woke me in the middle of the night.

To help I would make a fist and lean into my fist putting pressure on the area kind of like a Heimlich maneuver.

Eventually often I would vomit and this would relieve the pain for what ever reason.

Have that happen a few times and I was glad to be having my gall bladder removed.

I had gall stones observed on my liver biopsy a year before I had my gall bladder removed.

Having my 12 week EOT test in about 10 days not that I am counting or anything like that.

God luck all
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 sunrise

  • Member
  • Posts: 463
Re: post treatment positives
« Reply #16 on: July 17, 2015, 11:21:18 pm »
Best of wishes for your UD Lynn, it has been a long road and still on it. I have a great feeling you beat it.

Offline Keithn8eb

  • Member
  • Posts: 7
Re: post treatment positives
« Reply #17 on: August 09, 2015, 06:55:04 am »
I have been seeing more and more Harvoni commercials on TV and I am noticing more references  to Harvoni being for treatment naive patients getting best results. If one has read my first post I have tried interferon twice, and interferon with ribaviron twice before the Harvoni. Has anyone heard that this might increase chances of relapse even though I have had 2 "none detected" viral load tests during treatment? I was confident and looking forward to my 90 day post treatment test in September, but now I am not so sure.......

Offline terih

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  • Posts: 74
Re: post treatment positives
« Reply #18 on: August 09, 2015, 11:44:09 am »
Hi Keith, just wanted to chime in here. I read on most of the forums I can find and have not noticed a trend of people having prior treatment relapsing on Harvoni! So odds are in your favor! If you look up a couple of posts at LynnK's treatment history it should help reassure you!

Hope this helps in some way, I know it is an anxious time, waiting to see if this drug works! I've got my fingers crossed for your SVR!   Teri
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline coloradogirl

  • Member
  • Posts: 70
Re: post treatment positives
« Reply #19 on: August 09, 2015, 12:23:25 pm »
I have been seeing more and more Harvoni commercials on TV and I am noticing more references  to Harvoni being for treatment naive patients getting best results. If one has read my first post I have tried interferon twice, and interferon with ribaviron twice before the Harvoni. Has anyone heard that this might increase chances of relapse even though I have had 2 "none detected" viral load tests during treatment? I was confident and looking forward to my 90 day post treatment test in September, but now I am not so sure.......

Kieth,
I had two previous treatments, and my 4 week post came back undetected. I experienced night sweats after my 12 week course of Harvoni, and thought the worst, but I was wrong. So just hang in there with the percentage of 94%. It should be all good! Going for my 12 week post (EOT) next week, which I understand if you are SVR 4, then chance of SVR12 is 98.5%. I'll take those odds to Vegas anytime!
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: post treatment positives
« Reply #20 on: August 09, 2015, 02:49:42 pm »
Hi Keith

Yes the odds are best for treatment naive but even treatment experienced are having great results and I am sure everyone sweats while wailing for their 12 week post treatment test

I am confident you will make it. Good luck

Lynn
« Last Edit: August 09, 2015, 02:52:08 pm by Lynn K »
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 chino1969

  • Member
  • Posts: 117
Re: post treatment positives
« Reply #21 on: August 10, 2015, 09:45:58 am »
I just completed 24 weeks of Harvoni yesterday.  Will post regularly with results, observations, physical effects, etc.

Offline chino1969

  • Member
  • Posts: 117
Re: post treatment positives
« Reply #22 on: August 12, 2015, 09:35:42 am »
I've had hep c for a long time---about 25-30 years, and for as long as I can remember, my energy has been compromised. It's almost like I've been living the life an 80 year old since I was in my twenties. I suspect that hep c is to blame.
I have 1 month of treatment left and would love to hear from anyone who has noticed a change in health, energy, mental clarity, immunity, etc. post treatment. Just need something to look forward to. Thanks in advance.

I just finished 24 weeks of Harvoni.  I have an annoying cough, no big deal.  I am noticing small incremental changes.  Brain fog seems to be lifting, a little more energy.  Sleep patterns are a bit inconsistent but manageable. 

 


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