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Post Info TOPIC: Beat hep C positive for Autoimmune hep
Tig


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RE: Beat hep C positive for Autoimmune hep
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Hey Trudy,

The best rule is to approach everything with the right attitude. When we do that, the best of solutions come first. We have to play these games with the cards dealt, but that doesn't prevent us from being good at the game. When we educate ourselves, make a good plan and stick to it, we can be confident we're doing the right thing. Too often, people expect immediate results. There are times that works, but an expectation of slow, steady progress is more realistic. When we witness steady improvement, even when it's achieved slowly, is a success to be savored. It took us a long time to get in the condition we were or are and it doesn't go away overnight.

The author you referenced sounds like quite a character! I haven't read his work before. That sounds like quite a suspense filled story. The title indicates some head busting! 



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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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Trudylookinglass


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Well, Hindsight, have you ever heard of the term Busy Idiot? 
 Jeremy Robert Johnson, Skullcrack City

You're correct Tig

Thank you for reminding me; the important thing is we are now moving in the right direction...

dont get me wrong- I have no regrets ( apart from sharing that one needle in the haystack of needles) BAH!

Im currently thinking it's going to take a long time for my system to completely rid itself of the toxins lingering in my body.

then I will do a cleanse and set forth of the path of immune boosters & eastern medicine ......

or just get on with my life : )

sick of  Being sick..... 

Thanks & love your Avitar!

 



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Trudylookinglass


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Thanks Rubyred,

im not sure that receding gum line is not part of a history of less than stellar dental hygienebiggrin or the fact that I am on a med that causes dry mouth ( as many meds do).

I too have been a 'star' brusher ( manual ultra soft brush), use an herbal toothpaste called 'Vicco' as well as Biotene, picks, floss ..... You obviously know the drill ; )

Though dentists say it's ' progressive' its possible to halt the progression and even repair some of the damage to gumline.

keep me posted if you have any tips, tricks, knowledge and I will do the same.

all the best & thanks for the response.

T



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Ruby Red


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Congrats on your SVR whooohoo!!

I also have been experiencing receding gums since my previous treatment 2010 (interferon/rib)  It's been a battle but with the help of my dentist I simple keep on it.

Hoping your docs can help you in all the areas that are causing you concern  :(

Again Congrats on your SVR...you're health will just continue to get better and better, I'm sure of it!

RR



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Tig


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The important thing Trudy, is knowing the wild days are in the past. You recognized the error and corrected it, then this comes along, ugh...  

SVR12 is a new beginning. Your liver will have a chance to recover and hopefully you will see some regeneration. Fibrosis regression can take years for some. There are others that see little. SVR reduces or stops any further damage from the active virus. Livers are a remarkable organ and I know from experience, they can take a lot of abuse and keep on ticking. You're doing the right thing by stopping it now and you will.

Hindsight... What a wonderful thing. I need the chance to go back in time and tell my 18 year old self to take it easy and to throw away any notion that I'm immortal or bullet proof! This is what "they" meant by "live and learn". We learned the hard way sometimes! 



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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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Trudylookinglass


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 Tig

Indeed- ill be checking out the nutrition specific to liver health.

funny ( or not) how I spent my whole life putting dirty drugs into my body and now I'm finally getting it  on the tail end of my 4th decade: you are what you eat! .......and put in your veins ...and inhale...

such a simple concept

hindsight =20/20

feeling a bit better today

Will start my search on boards for other peops with AIH

good to meet yah Tig

 

 



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Tig


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Let me know if I can help! Feeling the way you are right now is miserable and I'm sorry that's happening. If you need help finding information or just want to talk, we're here. Lots of good folks here.

If you need some good ideas on nutrition, check out that section here. Some of those smoothie recipes are real energy boosters, hydration inducers and just plain good! Pay particular attention to eating the right foods, nutrition is so important when you're not well. Immune system building is a worthy health goal, especially this time of the year.

smile



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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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Trudylookinglass


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Tig56

Thanks for clarifying. The triggering event for the AIH was the Hep C becoming active after decades of dormancy-no doubt

i was treated after I began to notice I was sick with a cold Much more than other people.

Thanks for pointing me the the right direction with the link on extrahepatic manefestations.

My immune system is very weak - In the winter, I get colds non-stop continuously.

even summer colds. I recover slowly and it can be frustrating to say the least.

i have three doctors but none can give me any answers or help ....yet.

Have a great night



-- Edited by Trudylookinglass on Tuesday 29th of November 2016 07:23:30 PM



-- Edited by Trudylookinglass on Tuesday 29th of November 2016 07:40:08 PM

__________________

HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Trudylookinglass


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Thanks Jimmy K.

just so sick of having a "chronic cold" but I couldnt find much about AH

i will definitely check out the link you provided

So glad I found this board and it's ALIVE! ( in more ways than one)

thank you



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Tig


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Hi Trudy,

Triggering events in this instance would be anything that caused the immune system to respond in overdrive. That can cause a lot of problems. The old standards of care I referred to were the previous Interferon protocols. Some people experienced post treatment autoimmune problems and they feel there is a relationship with the Interferon. HCV has a number of extra-hepatic manifestions that are good to know about. I'll post a link to some info below. 

Extra Hepatic Manifestations



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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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JimmyK


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Greetings and Welcome!

There is in fact a connection between Hep C and AIHep. Not in all cases of course, but there is a connection.

http://www.webmd.com/hepatitis/connection-between-hepatitis-c-autoimmune-disorders#1,

My understanding is with proper treatment it is quite well controlled.

Regards

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Trudylookinglass


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Hi Tig56, When you say, ' The connection seems to be either genetic or resulting from a triggering event secondary to an immune system reaction What could the 'triggering event'possibly be -the hep C?! Also when you say 'old standards of care', do you mean dental care or hep C care. Thank you for the welcome. Good to be here!

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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Trudylookinglass


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Cheddy- thank you for your insight, OP being dormant Makes sense to me. Everything you say about drs being reluctant to attribute anything other than the liver pain to. Hep C is true. They are just going by their education- new study groups are needed for symptoms associated with chronic hep C. Thanks for the welcome : )

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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
Cheddy


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Welcome, Trudy.

Congratulations on HepC SVR. That's going to help a lot with your general health.

You have my interest in the topic of AIH.  I didn't even know about it so I can't add anything there.  I'll be looking into it, though.

As for the oral lichen planus, my dentist diagnosed me with that a couple of years ago.  I only learned this year that I had HCV.  As I dove into learning all I could find, I learned that lichen planus is often associated with HCV. Perhaps it is not fought off as easily. I would suggest anyone diagnosed with LP be tested for HCV to rule it out (but then, I think everybody should be for HCV anyway). 

This leads me to think that the LP is not caused by treatment, but rather that it had been present and kept at bay when a stronger immune system.  If so, might it go into remission as the immune system recovers.

All and all, I have been surprised the number of "other" conditions HCV is associated with; painful joints and muscles, depression, digestive issues and many more.  Even my GP resists the connections sometimes.  But we know, and my hep specialist sees it all the time.  Personally, I am overcoming almost all of the associated maladies I had associated with HCV.  

These are just my thoughts.  I'll keep learning. 

This whole experience is tough to deal with.  I hope you are continuing to stay strong and living a healthy lifestyle.  Things do get better.  Don't buy into anything else.

Warm wishes to you, Trudy.

Cheddy

 



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Tig


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Hi Trudy,

Welcome to the forum! I wish it was just the great news of SVR and not the discovery of autoimmune hepatitis. It's fairly rare, but is more common in women. The connection seems to be either genetic or resulting from a triggering event secondary to an immune system reaction. I haven't heard any relationship between AIH and the new oral DAA's, but there is documentation on a potential relationship with those treated with Interferon. Were you ever treated with Interferon? 

The lichen planus and oral problems could be treatment related, but I haven't heard much discussion among our group here about it. We experienced a lot more issues like that with the old standards of care. 

Do your best to stay on top of the AIH. No cure, but immunosuppressants and prednisone can help to control inflammation. Many of us are required to monitor our liver health forever because of the damage incurred during our chronic HCV infection. Now that you have prevailed and beaten HCV, you've eliminated it from the equation. Stay positive, stay involved in your care and be proactive. If we can help you with anything, we'll do our best. 

Congratulations on your Hep C SVR!! That's a wonderful thing!!

 



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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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Trudylookinglass


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hi all

I acquired Hepatitis C in 1993 (23 yrs). never had a problem until approx 2-3 yrs ago, my VL was in the millions and I was told I have borderline chirrosis. I went through a US company sponsored study group that treated my hep c with 'Technivie' (ombitasivir, paritaprevir, ritonavir tablets). I'm almost 10 weeks post treatment Hep C RNA negative. Unfortunately while doing pre-study blood work, they found out I was positive for Autoimmune Hepatitis.

i also developed lichen planus and receding gum lines- unsure if these are related to post treatment (it's been 12 weeks!)

does anyone have autoimmmune hep (developed after having hep c for long time)?

also, I read that some develop lichen planus & receding gum lines from the treatment meds

thank you!!!!!

Trudy

48.9 yr old female, 12weeks post tx, autoimmune hep(+)

 



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx  (ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...
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