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Author Topic: I have had Hepatitis C for 42 years  (Read 8545 times)

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Offline Jo-Anne Hiscock

  • Member
  • Posts: 7
I have had Hepatitis C for 42 years
« on: December 08, 2015, 01:43:43 pm »
I have been told I am to receive Harvoni.  I am genotype 1 who has had former treatment and have cirrhosis.
I have read the adverse reactions which have greater or less than 5% Greater Frequency
reported in Treatment experienced subjects with cirrhosis receiving Harvoni for 24 weeks which will probably be me.
Asthenia (Myestheni Gravis) Muscle disease.  It is a terrible disease which affects every muscle in one's body (My brother in law has it)  Even his opening and closing of his eyelids are affected.  I have seen his health fail in that past few years ever since he had a heart bypass operation. His voice box is affected and all of his movements.  This really scares me.  Also there is Fibromyalgis from which my sister suffers and she is in constant pain even though she keeps active.  Then there is Dyspnea which is shortness of breath which already experience with congestive heart failure.   Has anyone with the same Hep. C history as I am experienced anything like these reactions due to Harvoni.   These reactions do not go away, and why they are called reactions and not diseases I do not know.  To date I have handled my HepC very well and take great care of myself.  If you have something to add please reply.  Jo-Anne

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I have had Hepatitis C for 42 years
« Reply #1 on: December 08, 2015, 05:09:24 pm »
Jo-Anne, I had HCV a little longer than you, I had had two autoimmune diseases, and my kidneys were damaged, so I was concerned about what Harvoni might do. My hepatologist told me that Harvoni has a very short half life (indeed, slightly less than 2 days), so if I turned out to be that rare person who has a significant side effect, he'd have me stop taking the Harvoni and it would quickly leave my system.

Given your family history, I understand your worry. But you already have cirrhosis (hopefully still compensated at this point). Thus, there are great risks if you don't treat the HCV now.

If you want to see a list of real-world [post-clinical-trials] Harvoni side effects, go to www.natap.org and look in the "Current Hepatitis C and B Articles" column, click on "More Hep C Articles," scroll down, and click on "AASLD: (HCV-TARGET) - Treatment Outcomes With 8, 12 and 24 Week Regimens of Ledipasvir/Sofosbuvir for the Treatment of Hepatitis C Infection: Analysis of a Multicenter Prospective, Observational Study - (12/03/15)" The side effects tables are very near the end. (Harvoni = LDV/SOF). Yes, dyspnea is mentioned, but it affected only 3% of a very large cohort. (Less than half of a percent had exertional dyspnea.)

It would be wonderful to have a treatment where no one has any side effects, but I don't know of any pharmaceutical that can make that claim. (Zantac is widely used, yet I experienced brain swelling on it.) Harvoni has WAY fewer side effects than your previous treatment, and few people experience them. Since you don't have a crystal ball, weigh the risk of worsening cirrhosis vs. the relatively low rates of Harvoni SXs and keep Harvoni's fast clearance rate in mind.

Welcome to the Hep Forums, and good luck.

Gnatty
« Last Edit: December 08, 2015, 05:12:10 pm by gnatcatcher »
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 Jo-Anne Hiscock

  • Member
  • Posts: 7
Re: I have had Hepatitis C for 42 years
« Reply #2 on: December 08, 2015, 07:18:21 pm »
Hi Gnatcatcher:  Thank you for answering my email.  I am trying to sort out what the
adverse  reaction part means.  Does it mean that if someone has Myasthenia and takes the Harvoni that they can have an adverse reaction or does it mean that someone who has the problems I have can have an adverse reaction and contract myesthenia which is far worse than I have.  Prior to taking the Harvoni I will discuss things with my Specialist.
I know how terribly ill I was and what happened on the ribavirin interferon treatment.  I am however; managing it quite well but would prefer not to have it at all.  Yes the cirrhosis is compensated and has not increased in 10 years now.

How are you doing?  Have you taken the treatment yet?  I wish you well and I thank you for taking the time to help.

Merry Christmas  Jo-Anne

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I have had Hepatitis C for 42 years
« Reply #3 on: December 08, 2015, 07:47:10 pm »
I'm doing very well. If you look at my signature file below, you'll see all the relevant details: Harvoni quickly brought my viral load down from millions to undetected and my ALT and AST back down into the normal range; I finished 12 weeks of Harvoni (I was treatment naive, hence not 24 weeks) on September 30; on Dec. 23 I'll take the labs that will show whether the HCV is still undetected, which is considered a cure. I had only intermittent, mild side effects and definitely feel better than before treatment (more energy, less muscle and joint pain).

Sorry I can't help you with the myasthenia question except that I just Googled "myasthenia HCV" and see that UNTREATED HCV can provoke myasthenia gravis. Glad you will be asking your specialist about that. Sorry you (and a lot of other people) were harmed by interferon. It is quite natural after that experience to dread any HCV treatment, but for the vast majority of people, Harvoni is "a walk in the park." Some (myself included) even enjoyed the positive side effect of an abundance of energy that we nicknamed the Harvoni High.

I wish you well, too, and hope you are among the many for whom Harvoni works its magic without a downside.

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 Jo-Anne Hiscock

  • Member
  • Posts: 7
Re: I have had Hepatitis C for 42 years
« Reply #4 on: December 11, 2015, 01:13:35 pm »
Hey Gnat catcher:  I am not dreading any treatment I am just trying to be more cautious than I was with the first treatment.  I want to be aware of anything like Myesthenia Gravis which to me is worse than what I have lived with for the past 42 years.
I know that nothing is without consequences, but I want to minimize those.  Unfortunately my specialist is now on holidays until Jan 4,2016.  I was supposed to have heard from him Oct. 2015 regarding the Harvoni.  I have had to be my own advocate once again and find out info on my own.  Now I find that even though he swore he sent the paper work Sept 4, 2015, he neglected to send paperwork to Trillium.  He sent it Wed. before he left for holidays.  I guess the Lord has a plan.  I figure that since my husband is going through further tests to determin whether the colon cancer just discovered has spread. If so I will have to look after him and put off the treatment.  We have many friends but no family here.  We will know on Dec. 30th regarding whether further treatment will be required for my husband or not.  Fortunately the cancer was caught in beginning stages.  I had precancerous breast tissue in 2009 and had it removed with no further problems to date.

Thank you for  your encouragement.  It means a great deal to have someone who has been there done that who is in my corner.  Please keep in touch.  Jo-Anne

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: I have had Hepatitis C for 42 years
« Reply #5 on: December 11, 2015, 02:15:18 pm »
Jo-Anne, I can identify with the paperwork delay perhaps making it easier for you and your husband. Spouse and I had biopsies for cancers at the same time but got results three months apart, by which time I'd recovered from surgery (no other Tx needed).

Here's hoping that your husband's colon CA is fully contained. Even if you're on Tx when he has his Tx, chances are very good that you'll be feeling fine. You may even be blessed with the "Harvoni High." I was able to do considerably more during Tx than I had been able to do before Tx.

Yes, I'll keep in touch and hope you'll continue to post when you can.

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

 


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