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Author Topic: Struggling through treatment :(  (Read 53295 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Struggling through treatment :(
« on: March 27, 2015, 06:19:36 am »
Hi everyone,

As most of you noticed I have been MIA for a while. Saturday 3/28,  I start bottle 5 of Harvoni after beginning with 2 bottles of Solvaldi and Olysio so I have been on treatment so far for 24 weeks with 8 more to go.  I've really been struggling, from my almost collapse in May 2014, to my diagnosis in September 2014, horrible rashes and side effects from S/O and then moving on to Harvoni and having my blood ammonia get very high and I started swelling and retaining fluids.

The entire time I have worked from home pushing my self to be as normal as possible. I am grateful to be on this medication to cure my Hep C, I have been undetected since week 9 but how they can say there are no side effects to this treatment is insane to me. If I don't have Hep C anymore and my blood with the exception of the High Ammonia is normal why I do I feel so horrible?

I have no energy, I have bouts of bathroom issues, my hands are stiff as a board after sleeping (when I can sleep), I have no appetite and barely eat yet I have somehow gained 20 lbs since starting Harvoni, i get this intense lower back pain if I stand for more than 10 minutes, it also happens when I try and go for a walk, I can't make it through the grocery store because the pain is so severe. The doctors are completely clueless as to what is happening, I have had so many tests it's insane and they are all normal but still all of these issues continue. I've spent entire days where I don't feel like I can even get up and make it to the restroom.

I just want you all to know that you aren't the only one if you are having side effects. I am just holding on and praying that I will get through the next 8 weeks, hoping that I will reach SVR and start to feel better.

Stay strong...

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline atomic dog

  • Member
  • Posts: 160
Re: Struggling through treatment :(
« Reply #1 on: March 27, 2015, 11:24:28 am »
Sorry to hear this. A couple of thoughts. First, don't attribute all your ailments to side effects. Doctors can get frustrated, too, and lacking time they may overlook signs of other causes. That perception can be reinforced by the patient's own assumptions. So ask your doctor to diagnose on the assumption that your back and other ailments are unrelated to treatment or Hep.

That said, the Hep C does cause liver damage. Not sure about your own situation per se (you list stage 4 cirrhosis), but the fact that you are on treatment and responding (that's the good news) doesn't mean that your liver hasn't been traumatized by this disease. More goods news, studies show that your liver can recover significantly within a year or two.

For now, be gentle on yourself. Rest as much as possible. Get a massage. Remember that the treatment does seem to be working. And ask your doctor to reassess your condition. Ask about physical therapy.
« Last Edit: March 27, 2015, 11:30:54 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 Mike

  • Member
  • Posts: 999
Re: Struggling through treatment :(
« Reply #2 on: March 27, 2015, 11:30:10 am »
Hi Mel,

Hang in there - your almost at the finish line!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Espo2

  • Member
  • Posts: 30
  • Needle stick at work 1987, 1b
Re: Struggling through treatment :(
« Reply #3 on: March 27, 2015, 11:34:41 am »
You are doing better, ibuprophen and TLC. Make sure you drink water, half body weight. Don't be afraid to call doc n GP. Try to do stretching n walk. Rest, nap, let body repair. Be well, God bless

Offline ma snart

  • Member
  • Posts: 65
Re: Struggling through treatment :(
« Reply #4 on: March 27, 2015, 06:22:11 pm »
Hi, Mel, sorry you are having a bad go of it, Helen has been struggling also, she has 18 weeks behind her and we talk daily of her pushing thru the remaining 6 weeks.
She seems to be more fatigued since about week 12, may just be due to the longer length of treatment than most.
We all know the end result though so hang in there...... were all here beside you.
Snart
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 lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Struggling through treatment :(
« Reply #5 on: March 27, 2015, 07:19:00 pm »
Mel, I am sorry to hear this. I hope we can support you as you have supported so many others.
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 BubbaT

  • Member
  • Posts: 267
Re: Struggling through treatment :(
« Reply #6 on: March 27, 2015, 07:49:36 pm »
Hi Mel , sorry to hear your having a rough time, you are a trooper and fighter, we pray God give you strength and energy to make each day better...

We care for you, hope your better soon...
I know how hard the difficult days can be Mel, keep your eyes on the prize !
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline atomic dog

  • Member
  • Posts: 160
Re: Struggling through treatment :(
« Reply #7 on: March 27, 2015, 11:39:29 pm »
Mel, this the hardest thing a lot of us will ever do. I look back at the years and years of dark times, weighted down by Hep C and the vile impact that it has had on my life. Treatment isn't easy. But it's better than the repair I felt in those bleak years. There's no absolute guarantee that we'll succeed, but the odds are with us. The odds are with you. Treatment has been an emotional roller coaster for me, for so many of us--I feel exhilarated, I feel exhausted, I break down and sob, I dust myself off and pick myself off, and get back in the game. I've tried to leaven my expectations to get through treatment and to move on to 12 weeks afterward. Maybe I won't succeed, I don't know. But we are fighters. You're a fighter! Soldier on.
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 kate0b1

  • Member
  • Posts: 293
Re: Struggling through treatment :(
« Reply #8 on: March 28, 2015, 07:15:18 am »
hey girl, its good to see your face. Im sorry you are having a tough time, it was hard enough to do the 12 without the riba (i makes me cringe even thinking about EVER having to swallow one of them again lol). I promise though spring is coming to us (well maybe not today as some mess is coming) but it is next week when you will be one week closer to done and we can start to be warm. We are are still here and have your back even if we've been MIA over the last few weeks.

stay well and think warm

kate

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Struggling through treatment :(
« Reply #9 on: March 28, 2015, 09:18:19 am »

@Atomic Dog, I appreciate your tips but it you check me out you will see that I've been the biggest cheerleader for water and drinking a ton of it, you can check out my posts. I've also been the one saying "this isn't a side effect, blah, blah,blah" Well guess what? 24 weeks into treatment and thankfully still undetected, I now have to own that some of what's happening actually is a side effect; whether it's irritated my already sick liver or my already compromised immune system I don't know but I do know that there are things happening with me that didn't just come out of nowhere. Thanks for the words of encouragement!

@Mike - Thanks so much, I am working on it, a day at a time  :D

@Espo - I am trying not to take any supplements of kind and fighting the bad stuff away with lots of water and rest when I can.

@MaSnart - So sorry Helen is also struggling; I totally feel her pain. Well I am so grateful that I didn't have to go through the Interferon treatments. I really think this is harsher with more sides than people know today. I will say and prayer for her and let her know she isn't alone. She gets to finish a couple weeks ahead of me so I will check for her updates once the treatment is over.

@Lucinda - thank you! Just focusing on making it to the end and praying to remain UND and hopefully SVR12 in 2015.

@Bubba - Thanks so much, I am working on it and just focusing on what I absolutely have to do like working and caring for myself and my grandson.

@Kate - Nice to hear from you as well. I am choking down the Harvoni as well as the Xifaxan which is just as big only it's twice a day. This ammonia level going bonkers doesn't help things :(. I know you are all here for me and it's really appreciated. Hope the coming sunshine is what we all need to bring back some light into our days.

Mel



~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline BubbaT

  • Member
  • Posts: 267
Re: Struggling through treatment :(
« Reply #10 on: March 28, 2015, 10:16:23 am »
Hi Mel, 

I noticed you are taking Xifanan  while taking Harvoni ?

I talked to LYNN k, and we both googled  the drug Rifampin and Xifanan and found that they are the same drug marketed under different names, and the rifampin is contraindicated for use with Harvoni ...   Is this Correct?

I would check to make sure ...

My Gi had prescribed me Xifanan and lactiluose about 2 weeks before I started Harvoni,   My ammonia was at 222 prior to treatment,  after I searched out the rifampin, I quit taking the Xifanan, Before  I started Harvoni.

I have not needed lactiluose because I go 3 or more times a day, and eat lots of fruits, vegetables...

Let me know what you find out...

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Struggling through treatment :(
« Reply #11 on: March 28, 2015, 11:34:15 am »
I'm so sorry you're struggling.  It definitely sounds like Bubba and Lynn gave you some solid info re: the Xifanan/rifampin.  I hope you can talk to your doc asap.  Rest easy.  No Hep C is fantastic news though I can sure see how it would be impossible for you to celebrate that right now.   :( 
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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Struggling through treatment :(
« Reply #12 on: March 28, 2015, 11:35:52 am »
Thanks Bubba,

I didn't start it until about 18 weeks into treatment and I was UND at that point. He told me that it's likely that the Harvoni treatment is what caused my blood ammonia level to go up in the first place, it was normal before starting Harvoni. He is testing my Blood Ammonia level every month to make sure it's not getting crazy high again.

This is what I found on drugs.com as far as the interaction:

http://www.drugs.com/drug-interactions/harvoni-with-xifaxan-3567-16903-2014-1577.html

Ledipasvir may increase the blood levels and effects of rifaximin. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if your condition changes or you experience increased side effects. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

I am being treated by an Infectious Disease Specialist with almost 30 years of experience. His practice does all the clinical trials, they actually did all the Harvoni, S/O and the VPac. They are in the middle of a few more right now. He attends and speaks at many of the HCV conferences.  I trust that he knows exactly what he is doing with my treatment.
« Last Edit: March 28, 2015, 11:53:01 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Struggling through treatment :(
« Reply #13 on: March 28, 2015, 12:53:04 pm »
Our sweet Mel, I think about you every day and am so sorry to hear that you are still having such a rough time.  You've given so much to us and it's hard not to be able to "fix it" for you.  God bless you and keep you strong through this healing process and beyond. 

I've not been feeling so great either as you know, and in addition to the sinus headaches and ongoing fatigue, I started bruising and bleeding easily and hope to find out what that's about soon.  My platelets are low (124 - normal is 140 to 400) and something called "Eosinophil is high at 6 (normal is 0-5)  I don't know if this is connected to my body's reaction to the battle Harvoni helped me wage, but need to get to the bottom of it - just like you do.  We deserve to be well and feel good and we'll get there!

BUT!  The good news is that I just picked up my lab results for one month post 12 wk Harvoni TX and am still UNDETECTED! 

Feel a huge, comforting hug and know that I/we care.  love ya sis!  ...Islandgirl

1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Struggling through treatment :(
« Reply #14 on: March 28, 2015, 05:35:13 pm »
IslandGirl,

So happy to hear you are beating this bastard! I am so sorry you aren't feeling well either. As I progress through my treatment it just feels like this "easy" Harvoni is leaving some of us with surprises; maybe we would have had them anyway, maybe not. My hope is that once I get through the 32 weeks of treatment I have to be on that slowly over the next 32 weeks my body adjusts to life without Harvoni and  Olysio and Hep C and becomes something a little less challenged to live with.

Saying a prayer you start to recuperate from the battle, be patient because it's quite an adjustment for your body (I tell myself that all the time)

xoxoxoxo

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Struggling through treatment :(
« Reply #15 on: March 28, 2015, 06:03:26 pm »
Mel, thanks so much. 

Your thoughts on this ring true and I know we need to be patient with ourselves -hard to remember sometimes as the mind starts playing the "what if" game.  I hear things you and others are going through or have already gone through and I know I am one lucky girl, and I need to focus on that more than I have been.  My prayers and admiration for you are unending.  Hang in there and I'll be right here doing the same.  xoxox back :)

....Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline moma

  • Member
  • Posts: 48
Re: Struggling through treatment :(
« Reply #16 on: March 28, 2015, 11:30:05 pm »
I'm sending loving hugs to all of you. Your all so strong in spirit and faith to carry on through this treatment. Putting this down in writing for everyone to benefit from is so important and it makes others know they aren't crazy. This has been the worst wk so far. A rash from the waist up that hasn't backed off. Freezing in this hot weather, and exhausted (I can relate to barely making it to the bathroom). Feel like my brain has gone into deep freeze, wait a minute, what brain? I won't even get into the paranoid thoughts. I think it's right in saying to doctors, "please don't tell people starting this drug there aren't side effects".
Thank you all for being here. I'm sorry so many out there are feeling so crappy. We will all get through this.    MoMa

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Struggling through treatment :(
« Reply #17 on: March 28, 2015, 11:40:29 pm »
Loving hugs back to you too, MoMa. 

Sorry you are having such a rough time, but keep your chin up best you can and remember the goal is in sight.  As the Harvoni nurse said to me, "there's a hell of a battle going on inside you" and I know the butt kicking going on inside us to defeat that dragon is kicking us some too.  It will be worth it.

Those paranoid thoughts are rough too ( I have an up close and personal relationship with them), but you are not alone.  As you said, we will all get through this!   Sending you lots of positive energy.   ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline victoria48

  • Member
  • Posts: 36
Re: Struggling through treatment :(
« Reply #18 on: March 29, 2015, 12:34:49 am »
Hi Mel. I know what you mean about having a lot of side effects and the doctors act like they have no clue that's because 99% of them have never been on treatment I have now been  and Rabavirin Solvaldi for 87 days almost 3 months.  It has been very very rough I am also gained more weight had anemia and raba-rage, depression, sadness, anger it has been like riding a roller coaster.   night anxiety itching and the first weeks I asked God Who am I.  after the first 30 days my virus was undetectable I am HepC 1A. I have 92 more days to go. I am on a six month program and I can only hope


I hope it gets better for you you have my emympathy . I wish you well and a total cure and the time goes by quickly



I will be cured  after the 6 months it is over I know for a fact this is a    tough situation and I'm sorry for any other person that goes through this most people do not understand at least if they've never been on this type of treatment they cannot comprehend and frankly I am going to move in my own apartment and be by myself to finish this treatment

Offline victoria48

  • Member
  • Posts: 36
Re: Struggling through treatment :(
« Reply #19 on: March 29, 2015, 12:42:48 am »
HI this is Victoria my posting got screwed up misspelled or missing words I am sorry about that tried to do it from my smartphone but it is not always so smart but again I want to say you have my sympathy and I totally understand because God help us all on this treatment it is rough for many ....one day this hepatitis situation will be erased unfortunately for some of this it was almost too late Victoria

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #20 on: March 29, 2015, 04:21:32 am »
Hi Mel

It sounds like you maybe are having symptoms of HE and also ascities have you ever had an appointment with a hepatologist associated with a liver transplant center. I am sure your IDS is great but only a hepatologist is best for understanding the effects of advanced liver disease.

I don't mean to scare you just worried for you so I hope you are workng in concert with a doctor like that. Are you taking Laclulose as well for the ammonia?

Hogs to you so sorry to hear you are having such a hard time of it you have been in my thoughts so thanks for checking in and letting us know you are still out there

All my best
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 Lynn K

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Re: Struggling through treatment :(
« Reply #21 on: March 29, 2015, 04:27:36 am »
Hi espo2

People with cirrhosis cannot not take Ibuprofen, naproxen, or aspirin only tylenol and at max daily dose of 2000 mg / day

People with cirrhosis are at risk of having a dangerous bleeding episode and those meds increase that risk
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 moma

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  • Posts: 48
Re: Struggling through treatment :(
« Reply #22 on: March 29, 2015, 03:16:30 pm »
Victoria48, what a great idea- an apartment all by yourself. Sounds like heaven. It's hard keeping up trying to be normal with family and friends right now. You get tired saying your sorry all the time or else holding your real reaction of wanting to scream and hit everyone over the head with a frying pan!
Islandgirl, I love what you say. I forget about our bodies and how hard they are working right now. Thanks for reminding me there is something connected to this head.
Thanks for being there, you all mean so much to me.  MoMa

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Struggling through treatment :(
« Reply #23 on: March 29, 2015, 03:16:49 pm »
@Moma - hang in there; you aren't alone! Just do what you need go do for yourself to make it through as safely and healthy as you can.

@Victoria - thanks for your kind thoughts and feedback. It's a journey and it's not forever though some days it sure feels like it!

@ Lynn - Hepalogist is next on the list; we are working through the approvals and theres a bit of a wait. Meanwhile doing some additonal tests so when I go we will have the latest information at hand. 6 Month MRI next week plus scheduling the scope.

Completely well aware some of my sides could be due to the status of my liver disease. Amazing as it is I have no swelling of my liver at this time. Just think the combination of the treatments along with the cirrhosis and some non related issues are making this challenging. Only 55 days to go!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline victoria48

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Re: Struggling through treatment :(
« Reply #24 on: March 29, 2015, 04:23:31 pm »
hello everyone Hep C 1a I have now been on Solvaldi and ribavirin for 3 months.  the side effects with other problems has been a nightmare and has messed with my mental health but I read last night if I had been on Harvoni I would be done with treatment is this true?   the doctor's choice was Harvoni but my insurance company would not let me have they made me do Solvaldi and ribavirin this is making me very angry because this has been pure hell and the side effects have been a nightmare. I cannot go out in the Sun without some kind of skin problem and the mood change is really a monster god help me that I am cured at the end of this journey and I feel the same for everybody else I do not think anybody can imagine how some of us are suffering through this treatment

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #25 on: March 29, 2015, 06:20:49 pm »
Before Harvoni and later Viekira Pak were approved ( October 2014 and Dec 2014 respectively) the standard treatment for GT 1a was Sovaldi Ribavirin and interferon. If the patient could not tolerate the interferon it was permitted to just treat with just Sovaldi and Riba. Many insurance companies balked at the high prices for Harvoni and may have wanted their patients go with a less expensive treatment. However Harvoni is for 12 or 24 weeks normally with some patients who qualify treated for 8 weeks. Viekira Pak plus Ribavirin for GT 1a is also for 12 weeks and 24 if you have cirrhosis.

Some will have to do longer and more difficult treatments than others but the important thing is to get cured of hep c.

Good luck
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 victoria48

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Re: Struggling through treatment :(
« Reply #26 on: March 29, 2015, 07:15:04 pm »
Hi Lynn I see you're hanging in and you're still undetectable for the virus so am I. So glad for you!
 I will be starting my fourth month but I am very disappointed that I have to go 6 months I think if I was on the Harvoni  it would have only been 3 months I don't know I see the doctor finally on Thursday. I know you're on top of this as we talked before. Is there any specific I need to ask my liver specialist. THANKS VICTORIA

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #27 on: March 29, 2015, 07:48:26 pm »
Yes my last viral load was not detected 7 weeks ago and since I am still on treatment without being tested of course I still must be not detected. It is the 12 week post treatment test that matters now.

I do not know what you would want to ask your doctor kind up to you. Are you having side effects from the meds you need to discuss? Do you have questions about your test results?

Not sure why you are concerned about what your Harvoni treatment may have been since that is water under the bridge now. You are treating with Sovaldi and riba. If you make SVR you are done if not cross the next bridge if you need to.

I last saw my doctor in November to get a prescription and won't see her again until 1 month post treatment for my regularly scheduled annual visit which I would have had were I being treated or not.
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 Ruthie

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Re: Struggling through treatment :(
« Reply #28 on: March 29, 2015, 11:45:54 pm »
Hey, Mel, hugs to you!

I've had some bad sides on Harvoni also. I'm very happy many people don't, but some of us do. I really wish the Drs and all would stop saying there's little side effects.

The good news for me is that I only have to do 8 weeks, which means 6 more pills and I'm done.

I hope the sides get better for you! And if there's something else going on, I hope they can discover it soon!

Offline victoria48

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Re: Struggling through treatment :(
« Reply #29 on: March 30, 2015, 02:26:21 am »
Hi Lynn and all:  I wrote on this site almost three months ago and now so many different people. My heart breaks to hear some of your comments.  I have been somewhat nuts on the treatment of Solvaldi and Ribavirin.  My mental health some what disturbed and I posted this before.  Educated 60 year old HEP C 1 A and it has been so tough on this journey.  I am moving alone to keep my sanity. Maybe get a dog or a cat? I was refused Harvoni but it seems the Solvaldi is working but had to cut my Riba in half. Doctors did has I felt like something I never felt before just pure hate!
Been undetectable for three months and three months to go.  I am going on a diet of NutriSystem or Medi-Fast if doctor says ok as gained more weight on these meds and was bed ridden 10 weeks  Everyday is different but I find a cup of coffee with my med in AM makes me feel better and more energy! I will say a prayer for all of you as  am so sorry as I have cried and asked "who am I?  This is not treatment for the weak of heart but for us who want this mess (the virus) out of our bodies for good.  I pray for one day having normal and God's grace to carry me through all of this to a better and happier place.  Maybe even be able to go back to work? We need support as many just do not understand the side effects or mental torment that some suffer.  Yup, need to live alone or won't have any friends by the time I get off of these meds.  I wish you all love and peace and the endurance to get through your particular program/meds to a cure and normalcy. No one walks in your shoes and no one can totally understand your personal journey but in this forum we can reach out share and support one another.  Like some of you have. The best to all of you who reads this. Victoria ;D ;D

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #30 on: March 30, 2015, 03:14:18 pm »
No worries it is each persons road to walk wth these meds. And yes a commonly reported side is know as riba rage so just know you are not alone and this too will pass

Good luck hang in there
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 CE

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  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Struggling through treatment :(
« Reply #31 on: March 30, 2015, 10:02:24 pm »
Mel, so sorry to hear of your struggle. My heart goes out to you. I will keep you in my thoughts and prayers that your pain will end with the cure. Hang in there. Hugs. --Chris
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline Karen3717

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Re: Struggling through treatment :(
« Reply #32 on: March 30, 2015, 10:42:30 pm »
Hi All,
I'm new to this forum, although not new to Hep C.  I started Harvoni on 3-13-15 & so thrilled to finally have hope again!  I have the best of the best MD @ UTSW Dallas who has followed me for the past 14 yrs with not much to offer except HOPE & it's finally here.  My Harvoni prior authorization went very smoothly.  I have BCBS & they approved it in less than a week.  I signed up for the $5.00 copay card & was approved immediately!  Otherwise, the copay would have been $150/month.  Shocked that all this went as well as it did because my MD indicated that the insurance would likely deny.

So far so good (comparatively!).  I have had headaches almost daily & fatigue about 50% of the time, but no GI upset at all.  Insomnia is a problem so I gradually moved my dose to 9am this past weekend.  We shall see how that works.  I still work full time although it has been a bit rough.  I'm a practice manager for a physician, so he is very understanding of my current situation.  I'm extremely encouraged by the 2 week lab results.  Hoping for UND @ week 4.  This tx is 100 times easier than the interferon/Ribavirin. 

I'm so glad to have found this forum and have spent lots of time reading others stories & post.  Most are encouraging & provide useful information.  I can definitely relate to those of you struggling through treatment.  Although it's been 14 yrs since last tx, I haven't forgotten the horror of it.  Hang tough.....this too shall pass.  I will update as I progress through the tx.  One of my favorite quotes as it pertains to lots of life's challenges is, "failure is not an option!".
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 victoria48

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Re: Struggling through treatment :(
« Reply #33 on: March 30, 2015, 11:44:38 pm »
Hi Karn:  we have a few similarities but I am on Solvaldi and ribavirin I wish you good luck and please keep us posted. I had blood transfusions around the same dates and was discovered with this disease around the same date as you but I did not go through the treatment.  I did not think it would come to where it has come to.   Good luck take care as requested keep us posted how you are doing.  I hope you will totally be cured this time. Victoria :)

Offline anniemybaby

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Re: Struggling through treatment :(
« Reply #34 on: April 01, 2015, 06:41:39 pm »
Mel I missed you I'm so sorry your going through all this I pray for your comfort I've also been out of the loop for awhile I've finished my 8 wk treatment n I'm undetected n will go back in 3 n 6 months for testing once done with treatment I felt brand new went back to work n feel great during treatment I could barely move so very tired n started getting depressed there is light at the end of the tunnel hang in there I'm praying for you
Annie

Offline victoria48

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To:Moma-anger etc.
« Reply #35 on: April 02, 2015, 01:36:53 am »
Hi:  Thank you so much for sharing some of how you have been feeling.  Because I am ready to slap someone up side their head.  My god my friend shhh me and I blew a fuse.  I have done much better with the lesser Riba but still on the edge with anger if someone provokes me.  I move next weekend back into my own place thank God!
See all my doctor's tomorrow regardless there is not much they can do but try and give some support and take more blood. Three more months to go on Solvaldi and Riba.
I have a friend who has been off treatment almost 5 months and still itching from the Riba. Yes, I am tired of saying I am sorry and people not understanding that this is a very severe treatment for many. Oh my god I cannot move too soon.  Believe me I try to be the best I can be but I am a breaking point so need to be alone.  Looking for a sweet pet.  You take care and contact me any time about issues or how you feel. Regardless of all I wish you strength to persevere and get totally well.  ;D ;D ;D  Victoria

Offline Tpropane

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  • Heal the past by living in the present.
Re: Struggling through treatment :(
« Reply #36 on: April 04, 2015, 01:29:49 pm »
Hi all! Just needed to grumble to people that may actually understand. I worked so hard all week. Yesterday had a day off. Had a 3 hour nap and then slept 8 hours after that. My fatigue today is like a beat down. I have to work this afternoon so timing my rest, shower and advil with the exact time I need to go out the door. Headache and my knee (not a side effect) has been really bothering me. Can't wait for another day off tomorrow. The family may just have to cook for themselves.
Week 11 nearly half way through.
Thanks for being here.
Pooped!
TPropane
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline atomic dog

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Re: Struggling through treatment :(
« Reply #37 on: April 04, 2015, 02:21:27 pm »
So sorry to hear about this. Harvoni tx is so up and down. I had a rough wee also, as bad as it's been. Woke up this morning fresh as a daisy. Go figure. I guess the upside is that there's a upside, but the downside can be brutal. Soldier on.
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 BubbaT

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  • Posts: 267
Re: Struggling through treatment :(
« Reply #38 on: April 04, 2015, 07:17:12 pm »
Hi everybody,

I'm amazed we still can laugh, I'm laying in the bed after a very healthy lunch at my favorite carabbas ...I'm enjoying the simple things a lot more now than I used too,

It seems it doesn't take much to make me happy these days... A good meal, good music , comfortable bed, and my friends on the blog trying to get thru treatment!

Here's to your continued health and well being...

I salute you warrior friends, though we never met, I know all about you!  Lol!

God bless... You, may you be healthy very soon!

Week 5 for me..
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline atomic dog

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Re: Struggling through treatment :(
« Reply #39 on: April 04, 2015, 07:29:27 pm »
Right on, music is a crucial part of treatment for me.
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 CE

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  • Posts: 147
  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Struggling through treatment :(
« Reply #40 on: April 04, 2015, 07:50:59 pm »
How true, we know all about each other, but never met! Maybe someday there will be "post HepC" reunion where we can meet each fellow warrior and celebrate our SVRs together! Blessings to all!
--Chris
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline cj

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Re: Struggling through treatment :(
« Reply #41 on: April 04, 2015, 10:09:25 pm »
Mel you are not the only one with side effect fortunately for me only doing 12 weeks finish this tuesday but at this point im so tired to the core ..once I sit down or lay down getting up is painful the bottoms of my feet ache so bad can hardly walk and every joint in my body is sore ...was sleeping real good in the beginning  now insomnia kicked in ...seen some of your earlier and just want to send you best wishes.. this will be all over sooner than ya think ..we can all start a new healthy life. Sending prayers cj

Offline Barbara Marin

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Re: Struggling through treatment :(
« Reply #42 on: April 05, 2015, 08:58:16 pm »
Hi Mel,
You are ABSOLUTELY not the only one with side effects. I was feeling great the first 3-4 weeks on Harvoni and then side effect after side effect set in. I need to lay down 2-4 times per day, and these naps are 1-4 hours each. My intestines (upper and lower) have a lot of discomfort which differs from the way it has felt in the past when it isn't happy. Now for my legs . . . my left knee which was bad to begin with is very painful. I'm 68 and to see me walk you'd think I'm 110. My right knee which has bothered me in a minor way at times in the past is also very painful. My right calf is swollen and painful. When I walk it feels like I have cement weights on my calves. One person on one of the forums described this as feeling like he was "walking in peanut butter." When I report sides to my doctor's nurse I get feedback like I'm a alien life form, and the only one who has them. Gilead really should revamp their insert on "sides!" I have also had a metallic taste in my mouth when drinking water right from the beginning. I have a mild headache much of the time, but this is the least problematic side for me. I have 19 pills to go and am glad to be at this point of the countdown. I would love to hear from anyone who had sides about how long it takes for them to mellow out after stopping treatment.

Mel, I empathize with you and wish you the best in getting through this. Hang in there. It'll all have been worth it!

Barbara
Geno: Mixed 1a/1b
Contracted disease 1970
Biopsy 1994 chronic active
Biopsy 1996 mild chronic
Biopsy 2013 stage 2/3
Prior to TX fatigue, joint pain, skin rash
Began Harvoni 1/31/15
Undetectable at 8 weeks
Spring 2015 CT scan showed cirrhosis
Last pill 4/24/15
No prior treatments

Offline crazycanuck

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Re: Struggling through treatment :(
« Reply #43 on: April 07, 2015, 01:46:49 pm »
Hi everyone,

As most of you noticed I have been MIA for a while. Saturday 3/28,  I start bottle 5 of Harvoni after beginning with 2 bottles of Solvaldi and Olysio so I have been on treatment so far for 24 weeks with 8 more to go.  I've really been struggling, from my almost collapse in May 2014, to my diagnosis in September 2014, horrible rashes and side effects from S/O and then moving on to Harvoni and having my blood ammonia get very high and I started swelling and retaining fluids.

The entire time I have worked from home pushing my self to be as normal as possible. I am grateful to be on this medication to cure my Hep C, I have been undetected since week 9 but how they can say there are no side effects to this treatment is insane to me. If I don't have Hep C anymore and my blood with the exception of the High Ammonia is normal why I do I feel so horrible?

I have no energy, I have bouts of bathroom issues, my hands are stiff as a board after sleeping (when I can sleep), I have no appetite and barely eat yet I have somehow gained 20 lbs since starting Harvoni, i get this intense lower back pain if I stand for more than 10 minutes, it also happens when I try and go for a walk, I can't make it through the grocery store because the pain is so severe. The doctors are completely clueless as to what is happening, I have had so many tests it's insane and they are all normal but still all of these issues continue. I've spent entire days where I don't feel like I can even get up and make it to the restroom.

I just want you all to know that you aren't the only one if you are having side effects. I am just holding on and praying that I will get through the next 8 weeks, hoping that I will reach SVR and start to feel better.

Stay strong...

Mel
I to am having issues with swelling in my face and glands my hands and feeling like complete hell!!!! I have diarrhea everyday.  I am only on day 12 and I am considering packing it in as I have already tried the Interferon and ribo and incivek with terrible side effects and quit! Your not alone!

Offline CE

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  • Posts: 147
  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Struggling through treatment :(
« Reply #44 on: April 07, 2015, 10:22:38 pm »
Hi all. My heart goes out to all who are struggling, but please be strong! Fight with all your might. I view this as a VERY big battle, like the knight in shining armour battling the fire breathing dragon to it's death. The medicine is our sword. The dragon hates it. The dragon has consumed our entire body and we must slice and dice that beast till it loses it's monstrous grip on us. War hurts. This possessed our body for years. It will take time for us to restore our strength and resume normalcy, something we did not know for such a long time. Put your armour on, sharpen the blade, grit your teeth, and FIGHT! You will win! You will heal. You will be whole again. Hugs to all.
 God bless.
--Chris
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline atomic dog

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  • Posts: 160
Re: Struggling through treatment :(
« Reply #45 on: April 07, 2015, 10:58:13 pm »
Crazycanuck: Didn't notice which medication but I assume Harvoni. Metaphors aside, at 12 days or so the drug is kicking serious butt on the virus. Hang in there. Have you checked in with your doctor. It's not uncommon for people to attribute thing to side effects when in fact there is another  cause, so don't assume anything. I agree, though, tough it out. A lot of us have good days and bad days. In general, the first couple of weeks are the toughest. Headaches, diarreah, brain fog, muscle aches, tiredness. Be sure to drink lots of water every day. Try to steer clear of sugar. Rest as much as possible. And check in here anytime you need to vent. That' s why we're here.
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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #46 on: April 08, 2015, 12:30:45 am »
Hi Atomic Dog

The Crazycanuck put it in the quote area. Solvaldi and Riba 24 weeks so a bit tougher than Harvoni alone.

Personally my metaphor or mental image if you will is more JRR Tolkien in nature.

For I am Bilbo Baggins of the Shire know as the thief with my sword "Sting" against the dragon Smaug!

The dragon is mighty but HE WILL FALL!
« Last Edit: April 08, 2015, 02:29:44 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 Ledoc01

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  • Posts: 37
Re: Struggling through treatment :(
« Reply #47 on: April 08, 2015, 12:47:10 am »
Hey Canuck,

Hang in there...it was right around my 12-14 days in point I think where I had my worst ride. As you've no doubt seen from the posts here...everybody has their own personal experience. I personally think it just depends on your unique set of variables.
In spite of your prior experiences with treatment, it's a new day.
For what it's worth...I think it's helpful to stay focused on the post treatment phase, what I'm going to do with my new lease on life. We just need to keep me going in spite of the interim being a real PITA at times. There aren't many "sure things" in life but the odds here are seriously in our favor. There's another thing I've noticed; just about the time I think I have a handle on this thing something changes. One thing is sure though...the only way to collect the prize is to cross the finish line. I'm tired of having my life run by a freakin virus.... we can do this.

Offline MEG

  • Member
  • Posts: 304
Re: Struggling through treatment :(
« Reply #48 on: April 08, 2015, 01:40:21 am »
@anniemybaby

Quote
during treatment I could barely move so very tired n started getting depressed there is light at the end of the tunnel hang in there I'm praying for you

It was so heartening to read this! That you were feeling awful on treatment(same here) and now you're feeling much better...

Praise God....wishing you continued healing and even more energy...
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Else

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Re: Struggling through treatment :(
« Reply #49 on: April 08, 2015, 02:12:34 am »
I'm loving these metaphors.  ;D  Battle it is.  I'm tired of getting walloped by an enemy I can't see. 
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 CE

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  • Posts: 147
  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Struggling through treatment :(
« Reply #50 on: April 08, 2015, 07:57:08 am »
Imagination is good for the soul! This is how they tell cancer patients to view their treatments. And to be truthful, this is so like a cancer. May all win the game. SVR HERE WE COME! Best wishes and better days for all.  --Chris
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline Bituman

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  • Posts: 157
Re: Struggling through treatment :(
« Reply #51 on: April 08, 2015, 09:22:52 pm »

I'm tired of having my life run by a freakin virus.... we can do this.


If someone makes some tee shirts with this on it, I'll buy one! 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline tinybuilder

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Re: Struggling through treatment :(
« Reply #52 on: April 09, 2015, 07:01:35 pm »
Hi Mel,I'm a newbie-1st post.I can relate to your post.I am on Harvoni- 18 doses left to go and I feel I can't make it(12 week course) The first 3 weeks were bad-severe headaches(was drinking 128 oz water)per day- an ounce per pound of body weight and ended up in E.R. dehydrated,then again for sudden high blood pressure(have never had hbp).Then things leveled out a bit,although have not had much sleep since day one.The last 12 days have been a living hell,with things I've been suffering with for 7 years but 3 times as severe.The flulike symptoms are gone and some of the lymphnode pain,and undetectable at 4 weeks and 8 weeks.I'm having bone pain,muscle pain,joint pain and tendon pain-all areas of body-even my hair follicles on my head hurt,severe dry eyes at times,abdominal pain-moderate and really just exhausted.My pain is not controlled much by norco 4x daily,maybe 10%relief.Lorazepam 1/2 of mg to get a little sleep- couple hours.In the morning after in and out of bed all night,I feel like I've climbed a mountain,been like this every night for the past 7 years.(I only got diagnosed 1 year ago)but have been suffering for years with severe fatigue and pain,flulike,all that stuff.I'm f4 bridging fibrosis w/many septa-high liver enzymes 7 years.Those are all back to normal now,except still have low platelets.My gastro and my GP just look at me when I tell them I'm in 3 times the pain as before treatment.Magnesium Malate and Calcium/Magnesium/Vit D and sunshine help reduce pain more than the pain meds,and also I keeping moving/pacing to deal with pain round the clock.I'm about to go to the E.R. as I don't feel I can make it til Monday to my GP appt and Tues Gastro appt 150 miles round trip.What is going on here?Don't know how much more pain I can endure.Am I still undiagnosed with something else,or is this just par for the course?I'm nearly 60,very physically fit(always have been)so the only answer that I have is-chronic pain plus little sleep/exhaustion=intractable pain,poor appetite,anxiety etc?I believe I've had hep c for 45 years without knowing,but looking back now at different problems I've had??I'm also trying to hang in there 18 more days!,then more time to recover-this is a big thing our bodies have been through and I just think for some of us it's a tough ride,others,not so much.Just wish there was a little more knowledge coming from the medical community.Oh, and I also keep in touch w/support path 24/7 nurse,but no help-I just report my suspected side effects so they can add to their list for the next crowd,lol.Hope everyone can hang in there and be cured and recover!Someday this will be all behind us-just hoping most of this pain goes with it,for us that have that symptom! :-\

Offline Mike187

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Re: Struggling through treatment :(
« Reply #53 on: April 09, 2015, 07:10:00 pm »
I'm only on day 7 but feel joint pain so tired it ain't funny abdominal pain headaches

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #54 on: April 09, 2015, 08:51:47 pm »
Day 143 with 25 days to go Harvoni with 1000 mg. Blood tests show anemic from the Ribaviron

One foot in front of the other 25 more stairs to climb

Good luck to all on treatment
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 BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Struggling through treatment :(
« Reply #55 on: April 09, 2015, 10:01:33 pm »
@Lynn. - congrats on cracking open that last bottle! You're going to win this time!!

@TinyBuilder - keep hanging in there. 12 days after all this. I know you can do it. I can so relate to everything you wrote. I can't tell you how many times I almost went to the ER, but what are they going to do? Drug me?  I'm still amazed that the doctors aren't cognizant of the impact of this drug on some of us. Every time I think I can't feel worse something else happens and I do. I actually had about a month right after I was switched to Harvoni (virus was clear by then per blood tests) then this insanity started. To be on this drug for 24 weeks on top of the S/O for 8 weeks is kicking my bodies ass. Every muscle everywhere feels like it's radiating pain. When I don't sleep well which is quite often it's worse. How I all of the sudden have RA showing up in my blood is beyond me, how I gaibed 20 lbs when I'm barely eating is beyond me. How the dr can look at me and say that no one else has side effects is beyond me. God only gives us what we can handle but he's pushing his luck this time. I will make it. You will make it. We will beat this beast but I wish I would have been more prepared for this battle I was heading into.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline BubbaT

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Re: Struggling through treatment :(
« Reply #56 on: April 09, 2015, 10:52:12 pm »
Hi yall,

I'm reading and thinking to myself, maybe it's not as bad for me as some of you,
But, I have definitely been feeling. Awful with flu like symptoms, also have the small blisters on my hands, when I rub my hands it feels like burning in my hands, have any of you had this reaction?

I was reading about cirrhosis and the problems arising from it!
Has anyone experienced the SBP, bacteria from ascites causing you to nausea and vomit?

Also read about the toxins building up in the blood, causing ammonia to cause HE?

I'm almost at week 6 and found that if I eat the wrong thing I'm in severe distress..

This ain't no cakewalk by any means, so to those who have made it to 24 weeks or longer, my heart goes out to you! And thank you for being an example to me, that I can make it too!
« Last Edit: April 10, 2015, 12:33:42 am by BubbaT »
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #57 on: April 09, 2015, 11:38:05 pm »
Hi Bubba

I have heard SBP or Spontaneous bacterial peritonitis is a medical emergency if not treated in cirrhosis and one of the ways cirrhosis can kill you. Due to massive septic shock.

http://en.m.wikipedia.org/wiki/Spontaneous_bacterial_peritonitis

Symptoms include fevers, chills, nausea, vomiting, abdominal tenderness and general malaise.[1] Patients may complain of abdominal pain and worsening ascites.[1] Thirteen percent of patients have no signs or symptoms.[5] Hepatic encephalopathy may be the only manifestation of SBP; in the absence of a clear precipitant for the encephalopathy, all patients should undergo paracentesis, or sampling of the ascites fluid, in order to assess for SBP.

SBP is a symptom of ESLD as well as HE. Do you know your MELD score? Are you on the transplant list if you are having these kinds of symptoms?

Good luck on treatment
« Last Edit: April 09, 2015, 11:45:18 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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #58 on: April 09, 2015, 11:43:55 pm »
See also

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2621420/pdf/tcrm-4-919.pdf

Spontaneous bacterial peritonitis: How to deal with this life-threatening cirrhosis complication?
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 BubbaT

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  • Posts: 267
Re: Struggling through treatment :(
« Reply #59 on: April 10, 2015, 12:26:04 am »
Thank you LYNN,

I'm feeling better tonite but the last 2 days have been bad for me, I wish I could have a more concerned Dr. I don't feel like I'm getting the best care and I have had some
Difficulty because I can't take anything, think that if I fast maybe I would be able to better manage the symptons, I'm at 220 so I not to worried about muscle wasting at this point, but today I manged well with an apple and a banana, until tonite had tomato soup.

I had 2 episodes where all the symptoms of SBP were there, since I started tx.

I don't know my meld score, how to you find out what it is?
What is ESLD?

I need to find a liver hepatologist, the Gi I'm seeing has 100s of patients,
I wish I had someone to help me navigate thru this.

Thanks Lynn.
« Last Edit: April 10, 2015, 12:33:07 am by BubbaT »
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline morning_glory

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  • Posts: 104
  • This is the first day, of the rest of your life...
Re: Struggling through treatment :(
« Reply #60 on: April 10, 2015, 12:34:08 am »
I want to reply... Just not sure how or what to say
When Harvoni first was talked about - everyone was saying such great things about it. What has changed?!
I am/was hoping to get treated, but now I have reservations & am not sure what to think about it all...based on what I am reading.

MG
Likely infected - mid 70's / Diagnosed - mid 90's
Geno type - 1a
AST - 45
ALT - 51
Viral Load - 435,120
Liver Biopsy 6/2004 - F1-2
Fibrosure 5/2011 - F1-2
Fibrosure 2/2014 - F-0
Treatment Naive, prior to Harvoni
Harvoni started on 5/16/15
8-week Treatment Completed (7/10/15)
4-week bloodwork (6/11/15) Undetected, AST 15, ALT 17
8-week bloodwork (7/13/15) Undetected, AST 14, ALT 16

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #61 on: April 10, 2015, 01:36:42 am »
Hi Bubba

For reference I am MELD score 8 and Child Pugh score "A"

Do you see a hepatologist associated with a liver transplant center? I do.

Generally a MELD score of depending on the transplant center either 12 or 15 gets you on the transplant list. That does not mean you will be transplanted. Currently, the average MELD score for a patient undergoing a liver transplant is 20 nationally but will vary by region and by blood type.

http://www.unos.org/

United Network for Organ Sharing UNOS

ESLD=end stage liver disease

Model for End-Stage Liver Disease (MELD)

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/calculate-meld-score

another calculator http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older/

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

http://en.wikipedia.org/wiki/Child-Pugh_score
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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #62 on: April 10, 2015, 01:43:19 am »
Hi MG

You are on a page discussing people having difficulty on treatment so that is what you will find here. Also you are very low fibrosis and will only be taking Harvoni. Both Bubba and I have advanced liver disease. I am taking Harvoni and Ribaviron for 24 weeks and have really nothing to report in the way of sides except anemia from the Ribaviron.

Maybe I am very lucky considering I have cirrhosis but I work full time plus occasional overtime I am taking a class I teach part time and I mowed my lawn yesterday.

If you go to a group discussing sides that is what you will find many others besides myself are feeling fine and going about their daily lives as normal.

No worries, odds are great you will be just fine. Don't anticipate trouble and will it on yourself.
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 BubbaT

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Re: Struggling through treatment :(
« Reply #63 on: April 10, 2015, 08:39:48 am »
Thanks Lynn, I'm going today to see if I can get a referral to a hepatologist, liver specialist associate with transplant team.

I will get my 4 week VL next Friday, I start week 6 Tuesday .

Your helpful links are very appreciated, I'm amazed that you are doing so well, on tx,
Having been thru all the previous txs. And at F4.
I will let you know when I can get more info on meld score, and referral.

I had one episode where I thought it might be the Angels coming to meet me!
I prayed to the Lord, and I threw up immediately and felt better right away, so yes God does answer in mysterious ways!
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Lynn K

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Re: Struggling through treatment :(
« Reply #64 on: April 10, 2015, 10:36:51 pm »
Yeah I guess I am very fortunate I have some tough bugs but I guess I am equally tough!

Glad you are feeling better after your episode and Amen!
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 morning_glory

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  • This is the first day, of the rest of your life...
Re: Struggling through treatment :(
« Reply #65 on: April 11, 2015, 12:17:58 am »
@LynnK,
Thank you for clarifying/reminding where I was reading... I think I was getting a bit overwhelmed.

Blessings,
MG
Likely infected - mid 70's / Diagnosed - mid 90's
Geno type - 1a
AST - 45
ALT - 51
Viral Load - 435,120
Liver Biopsy 6/2004 - F1-2
Fibrosure 5/2011 - F1-2
Fibrosure 2/2014 - F-0
Treatment Naive, prior to Harvoni
Harvoni started on 5/16/15
8-week Treatment Completed (7/10/15)
4-week bloodwork (6/11/15) Undetected, AST 15, ALT 17
8-week bloodwork (7/13/15) Undetected, AST 14, ALT 16

Offline crazycanuck

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  • Posts: 17
Re: Struggling through treatment :(
« Reply #66 on: April 15, 2015, 02:23:32 pm »
Crazycanuck: Didn't notice which medication but I assume Harvoni. Metaphors aside, at 12 days or so the drug is kicking serious butt on the virus. Hang in there. Have you checked in with your doctor. It's not uncommon for people to attribute thing to side effects when in fact there is another  cause, so don't assume anything. I agree, though, tough it out. A lot of us have good days and bad days. In general, the first couple of weeks are the toughest. Headaches, diarreah, brain fog, muscle aches, tiredness. Be sure to drink lots of water every day. Try to steer clear of sugar. Rest as much as possible. And check in here anytime you need to vent. That' s why we're here.
Thank you atomic dog! I never imagined that Harvoni would cause such havoc on my body.  My Dr. sold it to me as being the miracle drug and pretty much side effect free. He is my Dr and a smart man how can he believe that. It's not rocket science to know that there will be all kinds of side effects with this type of drug! I have to be honest....I don't think I can do this.

Offline MEG

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  • Posts: 304
Re: Struggling through treatment :(
« Reply #67 on: April 15, 2015, 02:51:19 pm »
@crazycanuck I have to be honest....I don't think I can do this.

You sure can!Because the alternative is this virus running your life for ever......

Please don't give up...I was essentially bed bound because of a bad luck of developing colds/sinusitis/shoulder tendonitis, PROFOUND fatigue, pre and during Harvoni therapy. I got so depressed at one point that I couldn't even come over here to talk...

Finishing my last week as we speak. It's only the past 5ish days that I'm feeling stronger, less depressed and feeling like "I got this thing."

So please hang on. Thank that orange pill and all the people who were in involved in creating it every time you take it...because it's your/our best chance right now of a new lease on life.........Hugs.....
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Else

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  • Appeal, appeal, and appeal again!
Re: Struggling through treatment :(
« Reply #68 on: April 15, 2015, 03:11:14 pm »
Thank you atomic dog! I never imagined that Harvoni would cause such havoc on my body.  My Dr. sold it to me as being the miracle drug and pretty much side effect free. He is my Dr and a smart man how can he believe that. It's not rocket science to know that there will be all kinds of side effects with this type of drug! I have to be honest....I don't think I can do this.

I'm sorry you're struggling, CC.  :(  Doctor's are rarely (if ever) forthcoming about side effects.  I don't know if it's because of a lack of first-hand experience or because they don't want to "put the thought" in a patients mind.  It's a big mistake, IMHO, because I think it creates a atmosphere of distrust.  Add to that, the fact that this is a new drug and we are on the front lines.  They could just not know yet.

That being said, from the length of treatment to the success rate, I'm thinking Harvoni is worth almost any side-effect.  It's long been know that HCV is harmful to the liver.  Latest studies are showing that it's neurotoxic as well.  You want this gone, gone, gone at almost any cost.  Okay, I can only speak for myself.  I sure do.  Decades of trying to ignore chronic fatigue were bad enough.  But cognitive deficits?   Enough already!  You can do this.
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 crazycanuck

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Re: Struggling through treatment :(
« Reply #69 on: April 15, 2015, 03:35:50 pm »
First of all THANK YOU Meg and Else! I am only on day 21 and I am falling apart.  I know I should be grateful and please don't think I am not.  I tried the interferon/ribo/incivek treatment and after 2 months had to stop due to extreme side effects.  I need and want this to work but every part of my body hurts and the pain in my calves is debilitating.  I already reported my symptoms to the FDA, Gilead and my liver specialist and with such little data your right Else they just don't know.  I have 8 more pills till i start the second bottle and I am hoping something changes before I start it. I talk to my Dr. about the guilt I feel about putting myself in this position.  I am a recovering I.V drug addict and that's how I contracted this virus.  I feel guilt I am putting my family through this and guilt that I want to quit this.  Thank you for your care and input it does help!!!

Offline bikergirl75

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  • Posts: 7
  • Diagnosed in 1999, started treatment on February 2
Re: Struggling through treatment :(
« Reply #70 on: April 15, 2015, 03:44:56 pm »
Hi Mel, I completely understand how you are feeling!  I have really felt awful most of my tx. I am 10 wks in and have severe fatigue,  body aches including my back, foggy head, blurry eyes, nausea and stomach issues.  Hang in there, the reward is a blessing (I hope)
I just found thisvforum today and I am so glad I did, I thought I was the only one and being a baby. Now I know that's not the case!!! Good luck to you
Please know for those of you wanting to give up, DON'T I go on every day working and taking care of my family, I feel awful most days but I push myself because what I am feeling is 100 times better than not seeing my children get married and have families of their own.
PLEASE DON'T GIVE UP....WE CAN DO THIS!!!!!!!
« Last Edit: April 15, 2015, 03:52:07 pm by bikergirl75 »

Offline MEG

  • Member
  • Posts: 304
Re: Struggling through treatment :(
« Reply #71 on: April 15, 2015, 03:52:00 pm »
First of all THANK YOU Meg and Else! I am only on day 21 and I am falling apart.  I know I should be grateful and please don't think I am not.  I tried the interferon/ribo/incivek treatment and after 2 months had to stop due to extreme side effects.  I need and want this to work but every part of my body hurts and the pain in my calves is debilitating.  I already reported my symptoms to the FDA, Gilead and my liver specialist and with such little data your right Else they just don't know.  I have 8 more pills till i start the second bottle and I am hoping something changes before I start it. I talk to my Dr. about the guilt I feel about putting myself in this position.  I am a recovering I.V drug addict and that's how I contracted this virus.  I feel guilt I am putting my family through this and guilt that I want to quit this.  Thank you for your care and input it does help!!!

We all have different roads to how we contracted HCV. And whatever the reason, we all, also have things we did in our past that are with the hindsight of time and consequences, regrettable.....So please, work on forgiving yourself. When we're young, we feel immortal and can't begin to understand the possible consequences of our actions. We may know them "on paper" but...........

What matters is that you are now recovering===>>your body, mind and spirit.....Please remember this. You are not your past. You are who you are today and who you are striving to be...

Also remember that Harvoni, for some people, makes them emotionally sensitive, moody(I think I've had this issue but mine is so complicated with the underlying sinusitis/profound fatigue that started before Harvoni....

Just keep focusing on the prize and who you are today, right now, right here....And you'll get through this...and hang on to your family and supportive friends. Yes. You. Can.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline bikergirl75

  • Member
  • Posts: 7
  • Diagnosed in 1999, started treatment on February 2
Re: Struggling through treatment :(
« Reply #72 on: April 15, 2015, 03:57:07 pm »
To CC... I have carried the guilt of my past for years, I know that I did this to myself too, however I am not and have not been that girl in almost 20 yrs! I am proud of who I am today. OUR PASTS DO NOT DEFINE US I have learned this over the years. Forgive yourself and work hard to make yourself well, live a happy life!

Offline BubbaT

  • Member
  • Posts: 267
Re: Struggling through treatment :(
« Reply #73 on: April 15, 2015, 04:18:39 pm »
First of all THANK YOU Meg and Else! I am only on day 21 and I am falling apart.  I know I should be grateful and please don't think I am not.  I tried the interferon/ribo/incivek treatment and after 2 months had to stop due to extreme side effects.  I need and want this to work but every part of my body hurts and the pain in my calves is debilitating.  I already reported my symptoms to the FDA, Gilead and my liver specialist and with such little data your right Else they just don't know.  I have 8 more pills till i start the second bottle and I am hoping something changes before I start it. I talk to my Dr. about the guilt I feel about putting myself in this position.  I am a recovering I.V drug addict and that's how I contracted this virus.  I feel guilt I am putting my family through this and guilt that I want to quit this.  Thank you for your care and input it does help!!!

Hey Canuck

I wanted to tell you Man, I know where you're coming from,  I know what you're feeling like, I'm at week 6 now and things are leveling off for me, one thing I can suggest you to do to help yourself is go on a strict diet until you get thru tx...

Drink water and juice a lemon in it about 4 times a day, it will help your calfs,   do not take any over the counter meds, and eats bananas and orange, apples,

no proceeds foods, no fried foods, no salt, 

What was your fibrosis score before rx?

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline crazycanuck

  • Member
  • Posts: 17
Re: Struggling through treatment :(
« Reply #74 on: April 15, 2015, 05:17:32 pm »
Hey Canuck

I wanted to tell you Man, I know where you're coming from,  I know what you're feeling like, I'm at week 6 now and things are leveling off for me, one thing I can suggest you to do to help yourself is go on a strict diet until you get thru tx...

Drink water and juice a lemon in it about 4 times a day, it will help your calfs,   do not take any over the counter meds, and eats bananas and orange, apples,

no proceeds foods, no fried foods, no salt, 

What was your fibrosis score before rx?
Wow I am so amazed and thankful for all the support I am receiving today! I will be honest I don't remember my fibrosis score as it was done 2 years ago now but my biopsy showed slight scaring.  My enzyme levels are very high he said and the virus is attacking my liver at a rapid rate more so than what he has seen before.  You can imagine what wonderful news that was to me lol.  I found out I had this virus 5 years ago and we know I contracted it about 7 years ago so killing it now I know is key.  I have made a mass change in my diet and I juice twice a day with only organic veggies and fruit.  When my stomach will allow it I try to eat lean proteins also.  I will try the lemon water and I do know I must drink more.  It's really hard to stay mentally strong when your body is constantly in this kind of pain and turmoil.  God the calf pain is so bad I think it's going to drive me CRAZY! Thank you Bubba T for sharing with me today!!!!

Offline crazycanuck

  • Member
  • Posts: 17
Re: Struggling through treatment :(
« Reply #75 on: April 15, 2015, 05:24:32 pm »
To CC... I have carried the guilt of my past for years, I know that I did this to myself too, however I am not and have not been that girl in almost 20 yrs! I am proud of who I am today. OUR PASTS DO NOT DEFINE US I have learned this over the years. Forgive yourself and work hard to make yourself well, live a happy life!
Thank you from the bottom of my heart!

Offline crazycanuck

  • Member
  • Posts: 17
Re: Struggling through treatment :(
« Reply #76 on: April 15, 2015, 05:27:20 pm »
We all have different roads to how we contracted HCV. And whatever the reason, we all, also have things we did in our past that are with the hindsight of time and consequences, regrettable.....So please, work on forgiving yourself. When we're young, we feel immortal and can't begin to understand the possible consequences of our actions. We may know them "on paper" but...........

What matters is that you are now recovering===>>your body, mind and spirit.....Please remember this. You are not your past. You are who you are today and who you are striving to be...

Also remember that Harvoni, for some people, makes them emotionally sensitive, moody(I think I've had this issue but mine is so complicated with the underlying sinusitis/profound fatigue that started before Harvoni....

Just keep focusing on the prize and who you are today, right now, right here....And you'll get through this...and hang on to your family and supportive friends. Yes. You. Can.
Thank you MEG! I pray and hope your situation is better and you find some peace with your issues that started before Harvoni.  You made a difference in my outlook today!!! Thank you

Offline bikergirl75

  • Member
  • Posts: 7
  • Diagnosed in 1999, started treatment on February 2
Re: Struggling through treatment :(
« Reply #77 on: April 15, 2015, 05:36:55 pm »
Thank you from the bottom of my heart!

You are very welcome.  I am so glad I found this forum, it is exactly what I needed.

Offline crazycanuck

  • Member
  • Posts: 17
Re: Struggling through treatment :(
« Reply #78 on: April 15, 2015, 05:43:53 pm »
You are very welcome.  I am so glad I found this forum, it is exactly what I needed.
Me too honey! You know my son always tells me I have to let my past go and forgive myself! He says "he has forgiven me"! I am soooo thankful I am finding kindred spirits here in this forum!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #79 on: April 16, 2015, 03:30:01 am »
Hi CC

Well I guess you could say I did this to myself too but that was then this is now. Everyone has a past no one is perfect. We just got an extra "gift" from our past tagging along behind us.

Hang in there, be strong, you can do this thing! Just keep your eyes on the prize and keep putting one foot in front of the other.

The longest journey begins with the first step!
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 BubbaT

  • Member
  • Posts: 267
Re: Struggling through treatment :(
« Reply #80 on: April 16, 2015, 08:58:16 am »
Hello guys, has anyone heard from Mel?

I was wondering how she is doing?

Hope everyone has a. Great day today, so far for me, I'm having a good day, I'm going outside and going to have lunch at my fav locale...

I would like to say you are my fellow warriors In a way.... We fight this fight to win...
We are conquerors thru him who loved us...

Find peace and strength to carry on my friends...
God bless
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Mr. Bob

  • Member
  • Posts: 37
Re: Struggling through treatment :(
« Reply #81 on: April 19, 2015, 12:26:32 am »
Try doing a coffee enema , this will clear out a lot of toxins in your body..
RJ

Offline rockee

  • Member
  • Posts: 10
Re: Struggling through treatment :(
« Reply #82 on: April 26, 2015, 12:08:07 pm »
I was wondering about coffee enema to help rid body of dead virus cells during harvoni treatment.  Anyone know if that is okay ?

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Struggling through treatment :(
« Reply #83 on: April 26, 2015, 06:40:29 pm »
Probably won't hurt doubt it will do anything either
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Struggling through treatment :(
« Reply #84 on: April 26, 2015, 08:23:17 pm »
A coffee enema? I prefer to drink it. ;)
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

 


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