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Author Topic: How is everyone doing after treatment. May start soon and scared  (Read 9587 times)

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Offline Kt923

  • Member
  • Posts: 20
Hey everyone. Was just wondering how treatment worked for everyone as i am reading some scary things.....first GI appt in september and then hopefuly start a treatment soon after. I believe ive only been infected for 2 yrs and im 32. Pls lets discuss what treatment you took and how things are now.....thank you everyoneā¯¤
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: How is everyone doing after treatment. May start soon and scared
« Reply #1 on: July 23, 2017, 10:29:42 am »
Welcome, Kt923. I took Harvoni for 12 weeks after having hep C for nearly 44 years. Harvoni gave me extra energy (after decades with very low energy because of the hep C) and only extremely mild, fleeting side effects. When I was tested 4 weeks after the start of treatment, my liver enzymes had already returned from way too high to normal and the hep C was undetectable. My liver enzymes have gotten even better (lower), I've stayed undetected, and I have less fibrosis than before treatment, so my liver is much healthier. You can see the before-and-after statistics below my signature.

Best of luck to you.

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

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

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

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #2 on: July 23, 2017, 10:57:36 am »
Yay. Im so happy for you. Thank you so much for replying. I hope i have to problem getting treatment and it works as well.
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: How is everyone doing after treatment. May start soon and scared
« Reply #3 on: July 25, 2017, 12:40:36 am »
Harvoni for 24 weeks and ribavirin for 15 of those weeks. I had an aggressive treatment because I was a 3 time interferon based treatment failure and also relapsed after treating with Sovaldi and Olysio for 12 weeks that same year.

Treatment was easy for me although after the addition of ribavirin did make me anemic and caused me to be extra tired and winded on stairs. Certainly much easier to tolerate than my three separate interferon treatments of 6 months duration each one.

Other than the anemia from the ribavirin all I had from the Harvoni was the commonly experienced mild headaches.

While unfortunately some people had some symptoms during and post treatment the majority of people find treatment to be easily tolerated.

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 KY

  • Member
  • Posts: 43
Re: How is everyone doing after treatment. May start soon and scared
« Reply #4 on: July 27, 2017, 06:45:58 pm »
KT923, I am on day three of Harvoni and so far I feel great, no side effects that I can tell except I seem a bit wired at night so not easy to fall asleep. I am pleasantly surprised by an overall feeling of energy and that I am being healed every day.

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #5 on: July 27, 2017, 07:47:14 pm »
Awesome. Im in a lot of pain in my abdomen and joints. I cant wait to feel better. I dont even know what my liver is like yet. My appt is in sep. Im scared
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline KY

  • Member
  • Posts: 43
Re: How is everyone doing after treatment. May start soon and scared
« Reply #6 on: July 27, 2017, 08:04:44 pm »
You are fortunate to discover the virus only after two years. I have had it since 1973.
I went on my own a few weeks ago before I sought treatment and spent $250 at an imaging place for a fibroscan. The results were no damage to my liver. I haven't used drugs since early 1975 and never drink, so that was probably the main cause for a healthy liver, plus I have been taking milk thistle, and selenium.

But I have digestive issues many years, tiredness, days when I am out of it,  and suffer from some joint pain. Hopefully clearing the virus will take care of this.

Why do you have to wait so long to see a doctor?

Offline KY

  • Member
  • Posts: 43
Re: How is everyone doing after treatment. May start soon and scared
« Reply #7 on: July 27, 2017, 08:07:28 pm »
P.S. if you need treatment and have a genotype that Harvoni would cure, I would ask for that treatment. The Vikera Pack has three pills. Another thing is make sure you ask for Gilead's help that will pay your out of pocket expense (deductible if you have that) so you only have to pay $5.00 co-pay for the drug.

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #8 on: July 27, 2017, 10:50:20 pm »
Its just when they said the doc can see new patients i guess
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #9 on: July 27, 2017, 10:54:02 pm »
Ugh. I wrote so much more n it posted the same thing three times. Sigh. Ill rewrite tomorrow
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: How is everyone doing after treatment. May start soon and scared
« Reply #10 on: July 27, 2017, 11:57:57 pm »
I deleted your duplicate posts :)
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 Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #11 on: July 28, 2017, 12:24:05 am »
Haha thanks. It was a whole parragrah and just that sentence came out. Right now im having pain across my entire upper ab. I think its my stomach too. What is going on in there. God dam i know im gunna get bad news. My bf keeps telling me not to worry till you know but i feel it. No way is everything ok in there. This is everyday now......
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: How is everyone doing after treatment. May start soon and scared
« Reply #12 on: July 28, 2017, 08:24:03 am »
Kt923, definitely tell those symptoms to a doctor, but it might not be bad news. For example, an unhappy digestive system can cause some major pain in that large area, but all it's unhappy about is too much food, or too rich food, or food eaten too quickly. Preparing to take a new treatment is scary for just about everyone (even though the current hep C treatments are easy), and being scared causes a lot of us to eat too fast, which causes digestive problems.

I'm assuming that even though you have to wait until September to see the GI, you can see a regular doctor today, or at least talk to a nurse over the phone, so that you can describe your symptoms and answer questions about them.

By the way, when you do see the GI, the stuff you'll be asked to do is easy. You'll probably go to the blood lab, and they'll fill a few vials. You've already done that probably many times in your life. You may go for an ultrasound, where while you're lying down, someone gently moves a wand around your abdominal area. (I look forward to ultrasounds because I find them relaxing.) You may have a fibroscan, which is a special type of ultrasound where the wand gently thumps the area where your liver is. (A fibroscan is much easier than a biopsy, which is what they did in the old days.) In short, nothing you'll be asked to do before treatment is hard, and most current treatments consist of just swallowing one pill a day.

Wishing you well,

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

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

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

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #13 on: July 28, 2017, 09:19:08 am »
Thank you so much. I actually sont eat a lot. Ive been having all these symptoms shortly after my c section last year. I do go to my pcp and she just said my liver could be inflamed i dont know. One urgent care awhile back told me its from constipation. They saw bubbles through my entire tract. But for almost a yr now?? Now i know its the hep c. Thank you for putting me to ease about all of this. Im afraid my doctor is going to be rude. I read reviews and a lot say he doesnt care much for the ones with viral diseases and hes rude and stuff. I sure hope not..... i dont wanna have to find another doctor and wait longer
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: How is everyone doing after treatment. May start soon and scared
« Reply #14 on: July 28, 2017, 12:46:16 pm »
Kt923, since you are only 32 and have only been infected for 2 yrs, you can, if you wish, search for a hepatitis specialist who gets good reviews from patients. This doctor might be another GI or an infectious disease specialist; what's important is that it's someone who has chosen to treat people with hepatitis. If it takes you a few extra months to get an appointment, it's worth it to get a doc you like.

Hepatitis literally means "liver inflammation," so, yes, your liver is inflamed. That plus constipation can be enough to cause the abdominal pain you describe. But since you've had the pain for almost a year, I would hope some doctor would investigate further, just to be sure. Having an ultrasound would be one way to check whether something more serious is going on.

Meanwhile, if you are frequently constipated, eating foods high in fiber can make a big difference. So many foods have decent amounts of fiber that you're bound to find a few you wouldn't mind eating more of. Also, do you drink enough fluids daily that your urine is clear or pale yellow? If it is darker, then that contributes to constipation and abdominal pain.

Best wishes,

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

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

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

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: How is everyone doing after treatment. May start soon and scared
« Reply #15 on: July 29, 2017, 10:07:38 pm »
Really the liver itself has no nerves that can sense pain. Most people have few to no symptoms of hep c infection which is why it is called a silent illness.

I really doubt your stomach pains are hep c related you probably want to look elsewhere for a reason for your gastrointestinal symptoms so it can be properly treated and you can find relief.
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 Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #16 on: July 29, 2017, 10:39:27 pm »
So then why is a common symptom upper abdomen pain?
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: How is everyone doing after treatment. May start soon and scared
« Reply #17 on: July 30, 2017, 12:27:42 am »
For those with advanced liver disease like cirrhosis  the liver can become enlarged enough to cause pressure on the membrane that surrounds the liver. This membrane does have pain receptor nerves. All internal organs are surrounded by a similar membrane.

Specifically that pain would be upper right quadrant pain just under the rib cage due to a very enlarged liver pressing on the membrane that surrounds it.

http://www.mayoclinic.org/diseases-conditions/hepatitis-c/symptoms-causes/dxc-20207369

"Symptoms and causes

By Mayo Clinic Staff

Symptoms

Long-term infection with the hepatitis C virus (HCV) is known as chronic hepatitis C. Chronic hepatitis C is usually a "silent" infection for many years, until the virus damages the liver enough to cause the signs and symptoms of liver disease."

The majority of patients have no symptoms unless and until they develop advanced liver disease. I had hep c for 37 years until I was cured 2 years ago. I have had cirrhosis for over 9 years.

I really only could say maybe I was tired a lot which is the most common reported symptom of those with chronic hep c infection. Still even with cirrhosis the only noticible symptom without medical testing that I have is some lower leg swelling called edema caused by portal hypertension. I do occasional gastrointestinal issues but I expect it is generally due to diet in my case.
« Last Edit: July 30, 2017, 12:36:33 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 Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #18 on: July 30, 2017, 07:14:41 am »
I see....i dont know. Something is wrong...i do have pain on my  right and it gos into my backside sometimes. But i also get pain on my left. I also have a hernia from ny pregnancy in the center of alk this. So i sont know
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #19 on: July 30, 2017, 07:16:31 am »
Ive also done alot of drugs and alcohol...i dunno if it was really damaged before.. we will see though. I sure pray not. Thank you for putting me to ease alittle that it may not be that. I wake up with this pain and go to bed with it.. its constant and it sucks
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline KY

  • Member
  • Posts: 43
Re: How is everyone doing after treatment. May start soon and scared
« Reply #20 on: July 30, 2017, 08:41:20 am »
Kt923,  do have a relationship with Christ Jesus? It makes all the difference in the world knowing He loves and cares for you and you can always go to Him and pour out your heart and get healing. I took a lot of drugs during the hippie days (1970-1975). So for me getting HEPC was because I was foolish in how I treated my body, but I am learning to learn from the Lord how to eat properly, exercise, and have a happy heart before God. I am on day six of taking Harvoni. I can already feel healing in my body and do not notice any side effects. So there is hope. Blessings

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #21 on: July 30, 2017, 10:05:17 am »
Im spiritual. Not to one god.....but recently i was thinking of getting baptised....just incase. And was very against my children getting baptised but im reconsidering. I dont know yet though. I get what you are saying but i dont believe in just one higher power.
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

Offline KY

  • Member
  • Posts: 43
Re: How is everyone doing after treatment. May start soon and scared
« Reply #22 on: July 30, 2017, 10:23:59 am »
Kt, thanks for your honesty. Yes, God created us with a human spirit that craves what is real in the universe. We are not totally satisfied with just food, shelter, romantic relationship, friends, food, entertainment, etc. There is always something deeper that we long for. The ritual of being baptized can be just that, a ritual without any substance behind it. It is just an outward declaration you belong to Christ and have received Him.

I would encourage you to take a long walk, alone, look up in the sky and ask God to show you who He is. That you want to know Him in a real, substantial way and for Him to reveal Himself to you. Once you have an encounter, transaction with Christ Jesus, you will never been the same. You may be reduced to tears, but good tears of repentance and joy that no one can explain.

It is so safe to know Someone greater than you is looking after you and you can trust in Him. I have had HEP C since around 1973 when I was a hippie living the free love, drugs lifestyle. But in 1975 I had an encounter with Christ that revolutionized my life and I stopped all things that was damaging my body. I believe the life style change and having a happy heart has kept the HEP C in check for 44 years so that I have no liver damage. I am still learning from God how to eat, exercise,  and take care of my body while I am getting healing from the treatment. I am about to take Harvoni , day 6; I am so excited to get rid of this virus. God bless

Offline Kt923

  • Member
  • Posts: 20
Re: How is everyone doing after treatment. May start soon and scared
« Reply #23 on: July 30, 2017, 11:11:30 am »
Thank you for your kind words and so happy you have found something to belueve in so whole heartedly. I dont see myself being that into christ as i believe in many gods and goddesses.  Please keep me updated on your treatment. Im happy your doing well
Diagnosed June 2017
6/17- ast 103
           Alt 238
           Vl 6,494,379
9/17- ast 23
           Alt 47
           Vl 15,721
           F0
12/17- ast 136
             Alt 401
             Alk phos 134
             F1
             Vl  856,599
Started harvoni 12/19/17
 1/11/18 4 weeks on harvoni out of 8 weeks
              Ast 18
              Alt 18
              Alk phos 59
              Undetected at 4 weeks!!!
2/15/18. Finished harvoni 8 weeks undetected

 


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