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Hep C Discussion Forum -> General Discussion -> A history of HCV treatment
Post Info TOPIC: A history of HCV treatment
Caryn


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RE: A history of HCV treatment
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Thanks JoAnne!  I apprecaiate the support!  I have been on here since you started. I am glad you are done with the incivek and glad you are feeling better!

Malcom, it helps to write and get things off of your chest. I always love your posts - I learn a lot. That is the type of stuff that gets me thinking! 



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
JoAnneh


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Malcomb, What a soldier you are, a fighter and a brave man. Makes u a hero with the ladies:)!
I am glad u sailed off to Pacific for a great adventure,you have committed to curingHep C more than most for a vacation is so warranted. Great memories too.
Caryn, I put off med few months but sooner the better. It's doable and we are here for you. I am starting week 14 today and doc wants me To do total of 48 weeks. So 34 more to go..... Hahaha I refuse to even think that far out. Just so thankful I am feeling better without the Invicek.
I Caught Hep C from using IV drugs as a teenager. Battled drug abuse 13 years. I am 53 yrs old and been sober 26 years thru AA. Greatest program ever.
Nurse friend suggested I get tested forHep C in 2000 at 15 years sober and feeling great. I had it!
Took three shots of Interferon a week w RIBA, never cleared stopped at 9 months.
No new cures, didn't know about any trails available and I decided to not think about Hep C and enjoy life. At 51 I had my gall bladder removed and a liver biopsy. Told Hep C advancing yet no new cures.
I stop feeling like working out, biking etc... Worked hard owning a company and felt exhausted all time.
Went to see doctor and he said get on new med ASAP. I have chirrosis and I am in week 14 on triple tx.
Just finished Invicek a week ago and feeling SO much better.
My viral load is UND and I feel human again. Still don't want to go or do much but I no longer stay in the bed all day wiped out;)!! Find reason to get out of bed as often as possible.
I have to do 48 weeks but I just look at it a day at a time. Weeks seem to fly by.
Tonight is shot night.
I love this forum! It's so helpful, Sirrpund yourself w living ppl and pamper yourself.
We can do all things thru Christ who strengthens us!
JoAnne



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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
mallani


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Hi Kristy and Caryn,  Guess the endless fatigue is getting to me mentally. Writing out my history reminded me of what I've been through and what I am trying to achieve. Thanks.



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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
Caryn


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I wish I would have gone to get a second opinion when I was first diagnosed.  It probably would have led to treatment, but who knows.  When I first went to a doctor after finding the antibodies in my blood, I was told that I was fine. Everything looked fine and since I was going through a divorce it would probably be best to wait on any kind of treatment. I was told that at some point I would have to do treatment, but to wait on better treatment.  I had the time and was of course 10 years younger. Whether or not I would have cleared the virus is of course the big question. It is amazing that when I was first diagnosed my VL was 100,000 and is now 10 years later 5,000,000. I know VL is not the big indicator, but there has to be some significance there!  I remember my doctor telling me on one of my 6 month check ups that he was not sure what my body was doing, but it was doing a great job of keeping the virus at bay.  I have probably had the virus for a good 25-30 years.  Since I have been diagnosed it has been a monkey on my back. So I understand where you are coming from Malcom - just dealing with this crap for years.  I want the virus gone too and I guess I should be glad that I have the chance to get rid of it for good. I hope that I can live my life feeling a lot more free once all is said and done. I hope I can make it through treatment!  There is so much stuff going through my mind!  I am going to the doctor tomorrow to get the results of my MRI and recent bloodwork.  I was supposed to start in Sept., but may see about putting it off until after Christmas.  We will see how the results look and go from there. 



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
K2


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Thanks for sharing that history Malcom. That really shows some admirable persistence to clear yourself of this virus. You really have got half a lifetime of experience with this thing. I myself feel I've been completely ignorant.

I was diagnosed (with antibodies) in 1994 and that's it..... Knew I should take it easy on the grog and look after my liver, hmmmm maintained excellent diet but pretty typical 20/30 yr old 'excessive' aussie drinker. Liver enzymes remained within normal levels.

2000 I asked for another test Doc said I wouldn't have itany more. Continued to monitor ALT's etc.

FeB 2012 I ask for virus test, not concerned. March 2012 Doc says, there is visiting a hepatolagist for our region should do some blood work to see if I qualify for tx (wtf) by the end of March I'm told I am just below cut off for chirrrosis and have started on triple therapy. WOW, is all I can say.

You deserve victory Malcom. Go Well.

KristyX

 



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genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
mallani


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I notice that a lot of forum members have only been diagnosed in the last 10 years or so. These days, Rx is fairly simple. Either try the AP's, get on a trial of the antipolymerases, or wait for new oral treatments. The chance of SVR is getting higher. Members may be interested (even amused), in the attempts at Rx I have endured for the last 30 years.

I probably was infected in 1969-70 in Vietnam. In 1980 I worked at a US run Hospital in the U.A.E. for 6 years. A blood test in 1982 (after one of my staff developed Hep B) showed raised liver enzymes. These persisted, and the Canadian gastroenterologist sent me to London for a biopsy. This was normal, my HepA and HepB antibodies were -ve, so I was put in the (We don't know) diagnosis of NonA-NonB hepatitis. I was told to be monitored after I returned to Australia in 1986. I sought out my old Professor, who was the then Chairman of the World Liver Congress. He didn't like the NonA-NonB label, so set about excluding other causes of Hepatitis. First was alcoholic-fatty liver hepatitis. I was a heavy drinker, and had to give up the booze and lose weight, to see if this affected my still elevated (x3 normal) enzymes. I actually did give up the booze and lost 9 kgms. Unfortunately ( surprising) my enzymes became worse over 9 months. So I happily (stupidly) went back to drinking, but in moderation. Next to be excluded was autoimmune hepatitis. One of my immunoglobulins was abnormal, so I was put on a high dose course of Prednisone (steroids) for 18 months. The virus must have loved that, no immune system to hinder it's progress. Needless to say, the enzymes became worse (x4 normal). In 1999, next was an FNA liver biopsy to exclude haemochromatosis (normal).

In 1990, the RIBA PCR test showed I had HepC. New disease, nobody knew how to treat it or what the natural progression was. So, another liver biopsy- this showed some inflammation, early periportal fibrosis (F0-1). Continued to be monitored with yearly ultrasounds, endoscopies and 6 monthly blood tests. In 1996, Interferon had been found to have antiviral action, so a year long course of 3xweekly Interferon followed. My enzymes actually decreased to x2 normal, and the PCR was -ve at 3, 6 and 12 months. Unfortunately, after 2 months, the PCR was +ve again.

In 1997, I was put on a double-blind trial, of Interferon and ? Ribavirin for 4 months. From memory, the Riba. dose was 2,400mgms daily. I obviously got the Riba. as after 10 weeks I was pulled off when my Hb had dropped to 7.1. I don't think anyone who got the Riba. actually finished the 4 months. I was PCR -ve at 4, 8 and 10 weeks, and even at 5 months after Rx. By 7 months I was PCR +ve again. Starting to get depressed, and with the help of AA, finally gave up the booze for good.

In 1998, I was on another trial of Interferon (still x3 weekly) and Riba.(now 1,200 mgms/day). This was a 6 month trial, and my Hb didn't drop below 10.5, and I was PCR -ve at 8, 12, 16, 24 weeks and at 4 months post Rx. I was told I was 'cured'. 2 months later I was +ve again.

2000- another biopsy, showed F2-3 fibrosis. Transferred to another Hospital, biopsy reviewed, now F3-4. Getting worried now.

2003- offered another trial of SOC for 12 months ( this was now the standard in the USA). Stupidly refused, as I was about to retire and go sailing in the Pacific- didn't want the hassle of regular blood tests. Probably the worst decision of my life.

2007- Fibroscan showed cirrhosis ( 95% accuracy). Now very worried- Enzymes stable at about x2 normal, normal ultrasounds, endoscopies and no symptoms. Tried to get on the new trials coming up but refused, as they wanted Rx naive patients, or those that had previous Peg. Interferon.

2010-New Hepatologist, who had supervised the Victrelis trials here, and was given access to Vict. by Merck (Inciv. and Vict. still not available here). Took over a year to get approved, so here I am on triple Rx at last.

That's it. Sorry for the long post. HCV has disrupted my life for 30 years, and I am grateful for the chance to get rid of it. Thanks .



-- Edited by mallani on Wednesday 15th of August 2012 08:07:10 AM

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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
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