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Hep C Discussion Forum -> Post Treatment -> EOT + 1 year---mixed results
Post Info TOPIC: EOT + 1 year---mixed results
skewedButNotBroken


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RE: EOT + 1 year---mixed results
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Tig said, ... You might not live long enough to worry about heart trouble unless you slow down, lol! Your You Tube vid's could be prescribed for constipation! ...

I've actually devoted my bike to a drag strip bike, so I only ride around the block once every two weeks to keep the battery charged.

Back in the day, I experimented with lysergic acid diethylamidea, so I know what that "Feels like" and that's the feeling that started during treatment and has persisted. 

As mentioned my blood pressure is usually around 99/60ish sometimes a little higher and my pulse ranges from 48 to 65 at rest. I believe my arrhythmia was caused by hep c (or the damage to liver from hep c) and Sovaldi/Olysio made it worse.

That's my story and I'm going to stick to it. LOL!



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Tig


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Hey Skewed,

What's happening dude? Are you sure your tachycardia isn't from riding that motorcycle 180 mph down country roads? You might not live long enough to worry about heart trouble unless you slow down, lol! Your You Tube vid's could be prescribed for constipation! biggrin

After reading that article, it got me wondering, do you have cirrhosis? There can be a relationship to cardiac issues when hepatic and renal function is impaired. Often it's related to electrolyte imbalances, among other things. My knowledge is that HCV by itself, isn't known to cause what you're describing, unless there is well established cirrhosis, definitely with decompensated cirrhosis and some underlying complications from that. I have taken high dose beta blockers for years without any negative effects. If you're concerned about them causing you additional problems, I can only tell you they didn't cause me any trouble before, during or after treatment.

I also had the problems with the LSD effect before starting the medication. I had some problems with headaches that were causing what they call "auras". It effects the vision and to me it was similar to looking through water with an oily sheen on the surface. Like macular problems, it always obscured my direct vision, while leaving my peripheral vision intact. The beta blocker resolved my high BP, headaches and the auras. If your doctors think it could help, I would recommend it highly. They are always something that can be discontinued if you don't obtain any benefit.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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xtra


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Testiva

LSD? A feeling or visual?

Visual distortions can be caused by eye diseases. The eye diseases that cause visual disturbances are (probably) inherited so not related to Hep C. You might consider an eye exam for retinal/macular problems. Visual distortions can also be the result of strokes.

I know how you feel about drugs. That is the habit of a lifetime and a definite symptom of Hep C. As wary as a coyote circling poison bait, when it comes to any drug, prescribed, over the counter, herbal, all of them but your heart disease may be unrelated to Hep C or treatment. Perhaps you should look at the two conditions as two separate conditions and treat accordingly.

 

 

 

 

 



-- Edited by xtra on Tuesday 20th of October 2015 04:19:37 PM



-- Edited by xtra on Tuesday 20th of October 2015 04:43:16 PM



-- Edited by xtra on Tuesday 20th of October 2015 04:44:03 PM

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skewedButNotBroken


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Thanks Mallani,

During treatment I also wore a prolonged heart monitor and the results were diagnosed as Ventricular tachycardia. They were much stronger during treatment and the intensity of them have subsided but the number of the flutters have increased. I read the white paper that xtra posted and in that paper the author(s) do argue that liver disease can cause VT. Here is the link: http://www.hindawi.com/journals/ccrp/2012/539412/

Thanks for your input



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
mallani


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Hi Testiva,

Sorry to hear you think '99% of people your age feel better than you do'. You achieved SVR and should cherish it.

I don't think you can blame Sovaldi/ Olysio or HCV for your heart 'flutters'. You posted you had them before any medication and there is no link to HCV causing ventricular tachycardia (VT).

For many people, attacks of VT have no obvious cause and they increase with age. Your cardiologist would have ruled out any cardiac or other cause for your VT, and I see you have worn Holter 24 hr. monitors with no findings.

VT can be treated with antiarrhythmic medications or an ICD. If they are such a big problem, why don't you listen to your doctor?

We can't blame every ailment on HCV or treatment drugs.

Also remember 'joy and happiness' is often a state of mind.

You're young, obviously pretty fit, so enjoy life. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
sunrise


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Positive wishes for all... I truly understand what that means. I have been feeling like a prisoner in my own body. Finished Sovaldi/Olysio 12week tx, December, 21 2014. Have not been able to shake side effects as of yet. My weight has gone down, thankfully as I gained 50 lbs during tx. Also BP went through the roof. That also went down. I also had heart flutters but that subsided. What still plagues me is acid reflux from h***,as well as Achilles tendon inflammation with extreme pain in left heel. Depression and loneliness doesnt help either. If anyone has any advice for me it would truly be appreciated. Oh and I am about to turn 59, maybe another reason why.. Blessings Sunrise

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xtra


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"Whether it is better to bear the ills we have than to fly to others we know not of"

So, the thread is about the "ills we know not of."

I am interested to hear from other posters about what they have flown to, if anything.

But the treatment is a dammed if you do, dammed if you don't situation.

A person could have kept the Hep C and had increasing multiple organ failure or take the drugs and cross their fingers the drugs don't exacerbate what the liver has damaged also resulting in some as yet unknown organ/organs failure.

The drugs are new. There are probably side effects that might be worse than the disease, (kidney problems, heart problems, mental problems) but the disease causes some horrifying kidney, heart and mental problems also.  The drugs are an unknown future. but, for me, increasingly, the virus is not a viable future either.



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Jaded


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Glad to hear your weight is good and you are not sedentary. I lift weights to and walk 2-3 hours daily. Do you do cardio exercise besides weights? That would likely help you more than weightlifting...although resistance training is important. In any event...I wish you best of luck. Hep C can cause hypertension...I have been on blood pressure meds for the last 1 1/2 years. I should have been on them for at least the last decade but didn't want to use them and didn't really understand what was going on with me. I used to think it was my heart but now I'm sure it's from my liver.



-- Edited by Jaded on Tuesday 20th of October 2015 04:17:50 AM



-- Edited by Jaded on Tuesday 20th of October 2015 04:18:32 AM

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
skewedButNotBroken


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Hi Jaded,

I'm 58 years old and I weigh 145 pounds and I'm 5'9" tall. I exercise twice a week with heavy dumbbells.



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Jaded


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Sorry to hear that...but good for you that you managed to clear the virus with only 6 weeks of tx. If you don't mind me asking...what is your age and weight? Do you exercise?



-- Edited by Jaded on Tuesday 20th of October 2015 02:48:33 AM

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
skewedButNotBroken


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Thanks xtra,

The very first flutter I ever remember happening was about 28 years ago and I believe I contracted HCV about 5 years before that. I learned that I had HCV in 1991 during an attempt to donate blood. As the years progressed the heart flutters increased slightly, but never more than a couple a year, but when I started therapy the increase was 100 fold.

Maybe my liver will eventually repair itself and the heart flutters (in my case ventricular tachycardia) will subside, but I must admit I really don't believe that time will make a difference because I have finished treatment a year ago and the flutters have gotten worse.

 

Cheers,



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
xtra


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A damaged liver can be one of the causes of atrial fibrillation. 

This is extremely technical but I have seen references to atrial fibrillation and damaged livers written in laymans language.

"Electrophysiological changes have been described in patients with cirrhosis such as rhythm disturbances, QT prolongation, ventricular dyssynchrony, and chronotropic incompetence. Rhythm disturbances more frequently reported are atrial fibrillation, atrial flutter and extrasystoles; these may be due to changes in the permeability of the cell plasma membrane"

http://www.hindawi.com/journals/ccrp/2012/539412/

-- Edited by xtra on Tuesday 20th of October 2015 01:47:53 AM



-- Edited by xtra on Tuesday 20th of October 2015 01:49:47 AM

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skewedButNotBroken


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Gracie said: Sounds like the treatment made your heart condition worse. So sorry to hear that. These are powerful drugs and we'd be naive to think they couldn't potentially cause issues. It's what I'm hearing more and more. We think we are going to be feeling so much better and have so much more energy etc. and while sometimes it happens, a lot of times it may take years to recover. I truly hope you continue to recover and that your feeling a bit better as it happens. Do you see a heart specialist? Is there anything they can do about the flutters?

The cardiologist wants to put me on beta blockers but my research has shown me that beta blockers can cause heart flutters in some people and slow down their heart rate and lower their blood pressure. My blood pressure is usually around 99/69 with a pulse rate of 55-60. I have loads of the good cholesterol and hardly any of the bad stuff. My problem is simply the electrical rhythm of my heart is out of sync. Drugs caused this issue so I believe that trying to treat with additional drugs will exacerbate the problem.



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Gracie


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Sounds like the treatment made your heart condition worse. So sorry to hear that. These are powerful drugs and we'd be naive to think they couldn't potentially cause issues. It's what I'm hearing more and more. We think we are going to be feeling so much better and have so much more energy etc. and while sometimes it happens, a lot of times it may take years to recover.

I truly hope you continue to recover and that your feeling a bit better as it happens. 

Do you see a heart specialist? Is there anything they can do about the flutters?



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
skewedButNotBroken


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Well, the good news is that I'm still undetected after a year from a mere 6 weeks on Sovaldi/Olysio which I had to stop because of heart flutters. My heart flutters are still here and some days I have as many as 10 to 15-- rarely will I have a day with no flutters. Before treatment, I used to have one or two a year. I still feel bad most days, however, I can think very well so that's a benefit, but I've always been a deep thinker. I still have that LSD-like feeling that started with the meds so I guess that will be a permanent side effect along with the flutters and extreme ringing of the ears and insomnia, but I'm glad my liver is doing fine; however, I had hoped for that "fountain of youth" after treatment. I wanted to feel just as good as other people my age, but it did not happen and obviously will not happen. It is so obvious to me that 99% of people my age feel much better than I do. Whereas, I'm just trying to get through the day most people seem to exude such joy and happiness, etc.

I'll close with a saying that I once heard, "One is never more of a prisoner than one is of his own body". 

Cheers,



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
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