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Hep C Discussion Forum -> New Members Area -> Greetings from Idaho.
Post Info TOPIC: Greetings from Idaho.
pyratenomad


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RE: Greetings from Idaho.
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mallani: The doc says that my ferritin level needs to be under 400 before treatment starts. They will start using some of the new meds for HCV right about the time I am supposed to hit the right levels. Good timing and should work out. :)

Milliganus: Yes, the only real treatment is therapeutic phlebotomies aka "bleeding". I get a unit and a half drawn every week. I suggest that you get tested for HH (Hereditary Hemochromatosis), especially if you are Celtic descent. It's widely undiagnosed, although it's the most common genetic disease in America today. Most have no symptoms until it's too late and damage is done.

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Milliganus


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My ferritin was really high on my last labs before I started my clinical trial.  I have never been diagnosed with the condition you have.  The clinical trial docs seemed unconcerned by the high ferritin level.  I have been on the trial almost 2 weeks now.

i have heard one of the treatments for your condition is "bleeding" for lack of a better word.  While on treatment I do lots of blood draws.  I have also heard that hep c can contribute to the condition, which can affect the liver, so I guess I don't understand the docs reluctance to treat, but I am not a doc.  I think there are folks here way more knowledgeable.

good luck!



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Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
mallani


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Hi Thomas,

A belated welcome from me. With haemochromatosis it's hard to know when to start treatment for HCV.  Has your doctor told you what levels he wants to get to?

The high iron parameters used to affect the old SOC, but I haven't seen anything on the new DAA's. In the meantime, let the leeches do their work. 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
pyratenomad


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You are correct, anankedrone. Had my first therapeutic phlebotomy today. Before they can treat my HCV, they have to get my ferritin level down. I am currently at 900, so it may take a few months.

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anankedrone


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Hi -

I'm new here and just starting to familiarize myself with the landscape.

Your mention of hemochromatosis caught my eye, as my primary diagnosed me with it about a month ago. ..She didn't order a DNA probe, so it may be that I was simply injesting too much iron. I'll know soon enough. I'm seeing a GI who has ordered a probe (along with scan + biopsy).

I gather the hemochromatosis treatment is relatively simple and effective. I'm guessing you'll be visiting a phlebotomist?

Best of luck with it, or rather, them. blankstare



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pyratenomad


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Hey folks. I went in to the see the doctor a few days ago to discuss treatment. I was told that I couldn't start treatment until another condition I have is under control.
I also suffer from Hereditary Hemochromatosis (Iron Overload) and my ferritin levels are way to high. So, it appears that my Hep C will have to wait for a bit longer.
Has anyone else here have any experience with a dual diagnosis like mine?

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TazKat


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Welcome. Taz here. Female 59 from Miss. I have gone thru 4 treatments. the first two were the same. don't know why they even tried the same thing again. anywho the last one was the new incivek & I had to do the shot & riba with one too. stayed undetectable then relapsed 5 months later. but now I am about to finish the new sovaldi riba & interferon (which my last shot was last Friday). so Thursday I will be done & hope for some great news the following, It is my turn.. lol the ppl here are wonderful, warm, & will listen to u whine if need be. God know they have heard me. lol  This is the best forum I have ever been to & we have some very very smart ppl who know & can more or less tell u whings in a way that u can understand. so welcome & good luck. u can get some get some financial help from pharmacy company &  financial  assistance hopefully. I did. didn't have to pay a dime in money but have paid my dues doing all this stuff.. good luck. u will be fine. peace out  Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Tig


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Hi Thomas,

When you know more about your condition and diagnosis, you'll have a better understanding of what's available. I want to point out the information we have put together in our Knowledge section on the Payment Assistance Programs. You may be pleasantly surprised to discover that some or all of your treatment costs may be covered through the programs mentioned. I'll add the link to our thread on the topic. There are some great opportunities out there, good luck!

http://hepcfriends.activeboard.com/t56904226/payment-assistance-programs/

Tig



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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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
pyratenomad


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Thanks for the welcome, folks. Hopefully, I will have more info in a few days.
I have no insurance, but I am going to a local clinic that charges on a sliding scale. It will be expensive, but I am sure that it will be worth it.
I am also sure that this forum will prove invaluable in resource and I look forward to interacting with you all here as I start my journey towards a cure. :)
Thanks again to you all for taking the time to share your experience and advice.

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Isiscat2011


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Welcome pyrotednomad:

I have family in Boise.  I haven't been there in a while but do get weekly (and sometimes daily) reports on what is going on there.  Sounds like you are having a bit of a heat wave.  

Boise has some top notch medical facilities.  A couple of my family members work at St. Lukes, which is also a teaching hospital, and they speak highly of it. This is a good time for hepc tx.  Things hepc are changing fast and for the better.  If you are willing and able to wait a few months you should have access to some all-oral treatments.  A number of us are waiting for them now.  Post your questions, concerns, comments, and rants here!!  Glad to have you here.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Tig


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Hi Thomas,

Welcome to the forum! I'm glad you're here. We've got a great group of knowledgeable individuals and if you've got any specific questions, please ask. I'd like to point out our search function at the top center of each page, it's full of great information. What you can't find there and by browsing the threads listed on the homepage, select a thread and ask away. Rarely does a question go unanswered.

This is a great time to treat. Up until last year, the only options included Interferon and if you haven't read up on the fun experiences associated with that protocol, you're in for some hair raising realizations! Nasty stuff, effective, but unpleasant at times! The newest DAA's, are extremely effective and as you'll read, the newest offering in the works Ledispavir, due to release in October will be combined with Sovaldi and will offer success rates as high as 100% (across some studies). Like I said, it's a very good time to treat. Like Huey mentioned, once you get your lab work completed and know what your genotype is, viral load, etc., you'll have a better idea of the treatment best suited for your particular situation. When you know that, please let us know and we'll be able to provide some good opinions on your opportunities. Hang in there and hold onto the positives, success is close at hand!! Good luck...

Tig

PS: I want you to check out the list of abbreviations we use here on the forum and are used elsewhere. I think you'll find the list very helpful.

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/



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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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Huey


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Welcome  here is how it works,, when you see the Dr. he will first do a blood test for hcv antibodys.  If that is Yes then he will need to know what kind, your genotype.  That is another blood test. and then they look at your ATL's "Liver Enzymes" and maybe a viral Load.

When you find those things out you can put them in your Sig. You will notice others here who have done the same.

Then , Depending on your insurance, VL, Genotype ect, you will have treatment options.  It may also be the case that other Tx are going to be available to you soon, You may Waite or start Tx or find a trial to get in.

It is a long road but you are among friends here.

We are all in this together Keep your stick on the ice. (Red Green Show)



-- Edited by Huey on Monday 14th of July 2014 05:33:44 AM

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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Milliganus


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Welcome to the forum. This is a great place for information and support. This is a exciting time to start considering treatment as there are new drugs that are either on the market or close to coming out that have very high cure rates with few side effects. Have they done a genotype and viral load on you yet? If so, it's helpful to post that information in your signature line. There are so many people with so much knowledge on here. I'm sure you can find the help you seek.

Again welcome!!


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Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
pyratenomad


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Hello all. New member here from Boise, Idaho.
I likely became infected in the early 90s and will be seeing a doctor next week to discuss treatment options. I had a liver biopsy a few months ago and there was no cirrhosis.
I am unsure of what to expect, so I joined this forum to compare notes, learn a bit and connect with others with similar experiences.



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