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TOPIC: Extra-hepatic Manifestations

Extra-hepatic Manifestations 1 year 6 months ago #20755

  • DrJames
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When many people think of Hep C they think of "liver disease" but Hep C has impacts across the body. Rates of depression, diabetes, thyroid dysfunction, autoimmune disease and strange neurological stuff are all higher in patients with Hep C. While Hepatocellular cancer is a commonly know risk, other cancers like renal cell (kidney) and lymphoma occur at much higher rates.





One of the things that has surprised me is how patients improve on treatment. It's not just the lifting of the brain fog, but little annoyances that most people have put down to getting old.

My second patient on generics came in on week 4 for her blood test and said "This stuff is amazing, for the first time in 20 years I can get up in the night to go to the toilet and my feat don't hurt."

Another patient had all over body tingling, which given there is no known medical condition causing it marks him as "one of those patients" who have something for which medicine has no name and no solution. During treatment he reported the tingling leaving his chest, and then his shoulders, elbows, wrists and finally his fingers. No idea why, but a win is a win...

So while there are no guarantees, and we do all get old and creaky and leaky with time, treating Hep C can often generate really pleasing improvements in quality of life.

There are no treatments without risks and side effects, but for the majority of patients life really is better post treatment.
YMMV
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Extra-hepatic Manifestations 1 year 6 months ago #20756

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I discovered that I had chronic kidney disease a year or two ago. No known cause, except (probably) hepatitis C. It is probable that it was this complication which convinced my insurance company to give me Harvoni. Since treatment there has been no worsening of my gfr, but no improvement either.
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Extra-hepatic Manifestations 1 year 6 months ago #20761

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Hi Dorian,

Sorry to hear you had problems. What happens is that the immune proteins end up blocking the drainage system.

Interestingly transplant patients with SVR see improvements in renal function but it takes years:

www.ncbi.nlm.nih.gov/pubmed/24115296

On the good news front your kidneys have about 8 x spare capacity so 1/2 function still gives you a 4 x spare, and even 1/4 function 2 x spare.

If you're not on dialysis now then chances are you'll have enough kidney function to do the job and other bits wearing out with time will be what gets you in the end.
YMMV
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Extra-hepatic Manifestations 1 year 6 months ago #20763

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Oh crap! Just when I was starting to think I was gonna live forever. Thanks a lot Doc! :lol:
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Extra-hepatic Manifestations 1 year 6 months ago #20766

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Some patients like my direct style, some find it blunt but consider this:

Life is a terminal disease, and sexually transmitted at that!

My mum's take on it goes like:

Life is not a trial run

But this remains my favourite:

I shall pass this way but once;
any good that I can do or any kindness I can show to any human being;
let me do it now.
Let me not defer nor neglect it,
for I shall not pass this way again.


- Etienne de Grellet
YMMV
Last Edit: 1 year 6 months ago by DrJames.
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Extra-hepatic Manifestations 1 year 6 months ago #20767

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First of all, let me say, I can see you like to keep things on a "professional" level and so please allow me to be blunt in return and say that the 1st part of your last comment is just plain FUNNY! :lol: and I love your mum's take on it even better. Thanks for sharing Doc.

Matt
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Last Edit: 1 year 6 months ago by Matt-Kenney-google.
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Extra-hepatic Manifestations 1 year 6 months ago #20879

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Dang, I never even thought about kidney disease. I have a weird thing that's been going on for a lot of years and I don't know what causes it. I swell up, not my face or anything but my feet and my hands swell up. My doctor blames the HepC which may be true but Ive never met anyone else with HepC who swells the way I do. Any ideas Doc James. BTW, since i been on Harvoni I haven't been swelling up. I know it probably sounds funny but it's not at all. I've been given Lasix and another diuretic but I don't take them things unless it gets painful. Anyone??
G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
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Extra-hepatic Manifestations 1 year 6 months ago #20881

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I took my 8th pill today from Redemption/MonkMed. My right foot lost almost all feeling below the ankle about 7 years ago. My feeling is now 80% returned. Every morning I wiggle my toes and flex the foot to mark my progress. I never imagined that it could return to normal. Other positive changes also and it is only day 8. Will keep you posted. Many thanks.

I'd like to point out that I changed HIV meds in order to take Harvoni. I went from Reyataz, Abacavir, Lamivudine and Zidovudine (AZT) to Dolutegravir, Abacavir, and Lamivodine. Getting off Zidovudine (AZT) started reducing the inflammation. The Harvoni is completing the process.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
Last Edit: 1 year 6 months ago by beahavan.
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Extra-hepatic Manifestations 1 year 6 months ago #20887

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:woohoo: Holy frijoles! That's something beahaven! What ... I'm not sure. But good for you! :+1: :lol:

Matt
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Extra-hepatic Manifestations 1 year 6 months ago #20895

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Glad you passed my way, Doc.
Really, really glad....
m
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Extra-hepatic Manifestations 1 year 6 months ago #20896

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In addition to the edit I made to my previous post I'd like to add that I stopped taking lithium 3 months ago. I'd been taking it for 16 years and didn't think anything about it despite my growing aches and inflammation. When I considered generic HCV meds, I took charge of my heath care meds for the first time. I told my doctor that I wanted to change my HIV meds and over strong objections I told 2 doctors that I was stopping the lithium with or without their help. Now once I finish with my generic Harvoni I will only be taking one pill, Triumeq (a combo of my 3 HIV meds). It has been a process and the generic Harvoni is the cornerstone of it all.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
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Extra-hepatic Manifestations 1 year 5 months ago #20901

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Hi Bea, we can walk side by side in solidarity through this, you being a few days ahead. I am so thrilled for you that you already have a huge positive effect getting the feeling back in your foot. You must wake up feeling like your in a dream, I know I do too! Good on you for taking control :) I feel it was everyone on this forum who helped me get there with determination nothing was going to stand in my way. What an amazing place this is. I hope I can reach out to others in the same way, Talk again Bea
much affection
Nadia xxx #flower
Diagnosed Hep C genotype 1b early 1990's. Treated 1998 peg Interferon/Riba non responder :-(( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016. :-))
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
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Extra-hepatic Manifestations 1 week 2 days ago #25842

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I was a middle of the pack marathoner in the 1990's (PR 3:45), then shifted to triathlons for balance in the early 2000's. One of the cool things for tri geeks to do is get a complete stress test with assessment of performance related data (e.g., functional threshold power) that the tri geek can obsessively monitor. I went to the local physical therapist who offered this service, and who also had an MD on staff.

The most instructive element of the visit was the MD wagging his finger at me, saying "you are borderline, and need to watch it". He was talking about high blood pressure, of which at the time I was completely ignorant.

Although I (i) am essentially a vegan, and deliberately include all the BP friendly foods, (ii) meditate daily with a Resperate device, (iii) do not abuse alcohol, and (iv) appear to others to be the fittest 59 year old they know, my BP remains sky-high. It will drop to normal levels after a long (3-4 hour) workout, but, of course, this is merely correlative to the fact that my heart rate has averaged 80% of max heart rate for the 3-4 hours. My BP returns to the stratosphere after my heart rate returns to resting level.

There is no other explanation for my high blood pressure than portal hypertension caused by fibrosis around the portal vein. This is the HCV complication that will kill me unless it is addressed. With this self-diagnosis, my game plan is to (i) have my NP arrange for a fibroscan when I go in at week 6 for a VL test, and (ii) shift focus to fibrosis reversal.

Questions for the community:

1. Will a fibroscan identify the concentration around the portal vein, either confirming or discounting the portal hypertension self-diagnosis?
2. In addition to elimination of the HCV, what supplementation (e.g. Phosphatidylcholine?) is helpful for a fibrosis reversal strategy?

Thanks for the advice and counsel!
1970's-Bad behavior as a teenager.
1990-Life Blood refuses blood donation due to elevated liver enzymes
2001- Insurance Company denies coverage due to HCV positive
2002- Another HCV positive reading and referral to liver doctor.
2003-Commence Interferon Combination treatment. VL 205,088 after 3 months. Doctor says stop.
2007-VL 1,045,320.
2017-VL 3,121,174.
2.5.18-Commenced Epclusa.
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Extra-hepatic Manifestations 1 week 2 days ago #25843

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Hello Tigerfan,

I don't know the answer to your portal hypertension self-diagnosis, perhaps other members with more medical knowledge can answer. However, I read a post by Dr. James in which he said that once the patient is cured and the body is free of the Hep C virus, there is strong evidence that the liver starts to heal itself and starts reversing the fibrosis on its own. Not sure if there are supplements that aid in the process.
Last Edit: 1 week 2 days ago by Mar.
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Extra-hepatic Manifestations 1 week 1 day ago #25845

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Hello Tigerfan,

The best way for a patient with HCV to reduce their portal pressures is to treat the HCV.

In the liver HCV causes both fibrosis and necroinflammation. You could thing of the necroinflammation as like blowing up balloons in a fibrous 3D mesh. This blocks the veins. If you treat the HCV the necroinflammation subsides so the balloons shrink and even though the fibrosis persists (it regresses slowly) there is a near instant improvement in liver stiffness measurements which reflect this.

As far as your BP goes this does not relate to you liver. Your kidneys control it.

The reason your BP is lower post exercise is that you open up the vascular beds in your muscles, this reduces vascular resistance, and in turn the BP falls. As the vascular beds close down your peripheral resistance rises and your BP goes up.

We know that patients with a BP persistently over 160/90 die quicker from heart disease and stroke. If this is you then you should:

1) As a 1 off get check for renal artery stenosis (Ultrasound)
2) Suck it up and take an ACE inhibitor or ACE Receptor Blocker (ARB) - both of these will drop you BP without impacting on your athletic performance.

95% of all hypertension (high BP) is called "essential" which means we don't know what causes it. We do however know how to fix it, and we also know that fixing it translates into less heart attacks and strokes.
YMMV
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