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Marypetrecz


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RE: New to this Forum
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Apparently so........hahahaah.......



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Huey


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Loopy Lisa wrote:
Isiscat2011 wrote:
Loopy Lisa wrote:

Hi Isiscat,

Apparently in females our Estrogen protects us until we hit menopause, of course depending also on life style and other factors. After that it is a game nobody knows. After menopause is when some women start to get problems that hadn't previously.

 Lucky us!  First we get menopause then we get the hepc problems!  Is there no mercy? biggrin

 Hahahaha on the upside HRT treatment greatly improved advancement of the viruses. So its not all doom and gloom. :D

 let me see if i got this straight, you mean that there are a certain number of men out there with HCV that if they took birth control pills "Estrogen", they would feel better?



-- Edited by Huey on Wednesday 18th of June 2014 04:05:48 PM

__________________

  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

 
Marypetrecz


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We'll gee wiz Lisa.....that explains a lot.....the memory thing the fatigue,,,,the joint pain, I thought it was all menopause....now I know better.....I was 52 when I found out by accident about the hep c.   So estrogen protects us......hummmm....that explains so much.

as I said Omar......there is a wealth of knowledge here.....and very nice people.  I'd wait too. For obvious reasons,  I think the interferon and ribo perminnately hurt me,,,,,not just at the time,  I don't swish that combo on Anyone.  I cringe when I see people on it....but I do understand that in some places that's all there is and some people can't wait,,,,,I also know some docs aren't on the S/O bandwagon yet,  i don't know and I don't think anyone knows the long term effect of S/O.  So I'd hang tight.....they will get even better.....you can wait.

My military kids were in dubai and they loved it.  It's a much nicer place than I thought it would be.



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Loopy Lisa


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Isiscat2011 wrote:
Loopy Lisa wrote:

Hi Isiscat,

Apparently in females our Estrogen protects us until we hit menopause, of course depending also on life style and other factors. After that it is a game nobody knows. After menopause is when some women start to get problems that hadn't previously.

 Lucky us!  First we get menopause then we get the hepc problems!  Is there no mercy? biggrin

 Hahahaha on the upside HRT treatment greatly improved advancement of the viruses. So its not all doom and gloom. :D



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
mallani


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Hi Omar,

Welcome from me as well. As others have said, treatment is not urgent in your case. Peginterferon and Ribavirin for 24 weeks is the standard treatment for Geno 3 in most of the world, and will remain so for a long time. The SVR rate is about 75% for young, Tx-naive patients with little liver damage. The odds are better with Sovaldi, but who knows when that will be available to you. Perhaps an Indian generic will become available in the UAE.

If you do try the Peg/Riba and have an RVR, the SVR rate lifts to >80%. It's really up to you.

Just for interest, I have a physician friend at Al Rashid Hospital. They are sending UAE Nationals to Texas for Sovaldi treatments. I thought it would be easier to get a container load of the stuff- they can afford it.

Let us know what you decide. Cheers.



__________________

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
Omar


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Isiscat2011 wrote:
Omar wrote:

Thanks all for the useful information, really appreciate it....

I went to another liver specialist yesterday (for a 2nd opinion) and showed him my reports and scans. He gave me a shock by saying that I should go for Interferon instead of Sovaldi as i have G3, and the response rate for G3 against Sovaldi is not great. He also advised immediate treatment as my Acti-test showing A1 result, he was of the opinion that A1 can easily go to A2 and then A3, if HCV is not treated.

Now I am confused and bit down.........

_________________________________________________________________________________________________________

Hi Omar:

The SVR rate for G3s who are tx naive and do not have cirrhosis is 93% following a 24 week course of tx.  

 http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Sovaldi_GT2-3.pdf 

I have no idea why he would suggest that you need immediate treatment and told you that liver disease progresses very quickly when that is clearly not the case. 

The SVR rates for Interferon are not as good and the safety profile for Interferon is far worse than Sovaldi.  I am assuming he meant Interferon plus Riba as the SVR rates for Interferon alone would be extremely poor.   

 

 Thnx a lot Isiscat2011 for your prompt comment

I was actually also surfing the internet and this forum (as well) to check the cure rates for Sovaldi. 

And yes he recommended IFN+RBV instead of Sovaldi+RBV.

I m still inclined towards Sovaldi for the obvious reasons.

 

 



__________________

Male 31 Years Old

Diagnosed with HCV GT-3a in June 2014

Sovaldi+Riba for 24 weeks started on 8 August 2015

 
Isiscat2011


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Omar wrote:

Thanks all for the useful information, really appreciate it....

I went to another liver specialist yesterday (for a 2nd opinion) and showed him my reports and scans. He gave me a shock by saying that I should go for Interferon instead of Sovaldi as i have G3, and the response rate for G3 against Sovaldi is not great. He also advised immediate treatment as my Acti-test showing A1 result, he was of the opinion that A1 can easily go to A2 and then A3, if HCV is not treated.

Now I am confused and bit down.........

_________________________________________________________________________________________________________

Hi Omar:

The SVR rate for G3s who are tx naive and do not have cirrhosis is 93% following a 24 week course of tx.  

 http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Sovaldi_GT2-3.pdf 

I have no idea why he would suggest that you need immediate treatment and told you that liver disease progresses very quickly when that is clearly not the case. 

The SVR rates for Interferon are not as good and the safety profile for Interferon is far worse than Sovaldi.  I am assuming he meant Interferon plus Riba as the SVR rates for Interferon alone would be extremely poor.   

 



__________________

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


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Thanks all for the useful information, really appreciate it....

I went to another liver specialist yesterday (for a 2nd opinion) and showed him my reports and scans. He gave me a shock by saying that I should go for Interferon instead of Sovaldi as i have G3, and the response rate for G3 against Sovaldi is not great. He also advised immediate treatment as my Acti-test showing A1 result, he was of the opinion that A1 can easily go to A2 and then A3, if HCV is not treated.

Now I am confused and bit down.........

 



__________________

Male 31 Years Old

Diagnosed with HCV GT-3a in June 2014

Sovaldi+Riba for 24 weeks started on 8 August 2015

 
Isiscat2011


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Loopy Lisa wrote:

Hi Isiscat,

Apparently in females our Estrogen protects us until we hit menopause, of course depending also on life style and other factors. After that it is a game nobody knows. After menopause is when some women start to get problems that hadn't previously.

 Lucky us!  First we get menopause then we get the hepc problems!  Is there no mercy? biggrin



__________________

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


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Hi Isiscat,

Apparently in females our Estrogen protects us until we hit menopause, of course depending also on life style and other factors. After that it is a game nobody knows. After menopause is when some women start to get problems that hadn't previously.



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Isiscat2011


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Loopy Lisa wrote:

I'm a fellow G3 and possibly infected for 20 years. I'm also F0. My doctor stated she is not worried about me waiting for a couple of years if need be.. 

Lisa:  Wow, that's great!  Studies have shown that liver fibrosis tends to progress a bit faster as we grow old but most people who have hepc will become cirrhotic when they are about 65.  

However, there is a substantial portion of the population who will never develop serious liver disease from the hepc virus, or for whom it would take >50 years to reach F-4.  Moreover, most people live for many more years (often decades) with compensated cirrhosis (some remain asymptomatic).  In effect, those people would either never be at serious risk or it wouldn't come until well in their 70s or 80s.  

It really is an individual thing that needs to be viewed individually.  While I believe that anyone who wants to treat now should have that opportunity, the reality is that it some people can absolutely afford to wait, and it would be in their own best interests to do so as the tx becomes more efficacious and safer. 



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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 Omar,

The test result "A-1" indicates mild inflammation. Here is some additional information on the Acti Test:

http://www.biopredictive.com/intl/physician/fibrotest-for-hcv/view?set_language=en

ActiTest

gauge-actitest.gif

Using the same blood test, ActiTest measures the degree of necroinflammatory activity of viral origin (HBV and HCV).

ActiTest combines the markers of FibroTest with ALT.

ActiTest was validated in relation to liver biopsy in a large number of HCV patients (n=1.570).

The diagnostic value of ActiTest is the same for the intermediate grades and the extreme grades.

ActiTest retains the same diagnostic value independent of ethnic origin, sex, genotype, viral load or presence of comorbidities.

The use of ActiTest was validated for the initial diagnosis, but also for the monitoring of treated or untreated patients.



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Tig

67yo 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

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Loopy Lisa


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Hi Omar,

I'm a fellow G3 and possibly infected for 20 years. I'm also F0. My doctor stated she is not worried about me waiting for a couple of years if need be.. It's a very slow disease. Also in the absence of a fatty liver you don't have much to worry about to be honest. I'd wait for the alternate version of Solvadi. 

All the best



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Isiscat2011


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Welcome Omar:

I'm with DZ on this.  At 31, with little to no liver damage, you should have plenty of time to wait for the all orals.  There are some other not so good things that hepc can do to your body but, again, that takes time and usually lots of it.

I'm not so sure Pakistan will be seeing Sovaldi in the next two months but it should happen soon.  They really need some good hepc tx so I hope it is very soon.  Best wishes!

 



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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.
Dzdayscomin


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If you know how long you have had it and are only 31 yrs old and F0

I would wait until you can take all orals, you have plenty of time, dare I say a few yrs even (JMO ) and if you don't have to take the harsher drugs wait, I think most that endured those would say the same.................even though in a strange way I was lucky not to have to take them !

 

Good Luck



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Omar


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Hi Cinnamon Girl

I have already done a Fibro test and the result is F0 which means no Fibrosis. However, another test was done at the same time called as acti-test and the result was A1(which i presume that some damage to liver is there). Fortunately (as the doctor said) my liver is not in a very bad shape so I believe i can afford to wait for a few months :).



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Male 31 Years Old

Diagnosed with HCV GT-3a in June 2014

Sovaldi+Riba for 24 weeks started on 8 August 2015

 
Cinnamon Girl


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Hi again, Omar, I`m just wondering whether you`ve had a liver biopsy or fibroscan done as that can often determine how soon you need to have treatment.  At your age it seems unlikely that the Hep C virus will have caused much damage and so you may well have time to wait longer than 3 or 4 months for Sovaldi. 

A lot of people find out about their diagnosis by accident and sometimes after having the virus for decades.  Actually you were lucky to find out now and be able to start planning your treatment. 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Omar


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Thanks all for the comments/feedback

 

As a matter of fact, HCV in my case was discovered accidentally during abdominal ultrasound as my blood tests showed high levels of ALT and AST. Initially doctor thought it is only fatty liver Afterwards doctor suggested to do HBV and HCV antigen/antibody test to further investigate my elevated enzymes, and HCV came as a positive. Then PCR confirmed the virus, my VL last week was 1.6 million and ALT stood at 95.

My doctor is of the opinion that I can wait for Sovaldi for 2-3 months as it will not affect my liver in the short term, but advised me that if sovaldi is not available in the next 3-4 month I should start with the conventional treatment (INF+RIBA).

I am hoping and praying that Sovaldi comes to our country soon and it will definitely help millions of HCV patients in Pakistan who are either non-respondent to the current treatment or cant tolerate Interferon side effects.

Will keep everybody posted as soon as i start the treatment.

Cheers



__________________

Male 31 Years Old

Diagnosed with HCV GT-3a in June 2014

Sovaldi+Riba for 24 weeks started on 8 August 2015

 
Huey


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Hi Omar, I am in the USA and am already taking Sovaldi,  When you start taking it, with the Ribavirin in about 2 weeks you will feel the worse of the side effects but after that it is a fairly smooth ride, FYI  IT works!!! This drug commits mas murder on HCV.  Glad to see you are geting Tx.



__________________

  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

 
Marypetrecz


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Waht great news......sovaldi is making it's way to other country's.  I used interferon and ribo in 2006..... It just about killed me.  After 4 months I was hospitalized for 3'weeks. it really hurt me.  I'm taking the S/O and am going into 6 weeks...undetectable ..... This has been so easy....no problems to speak of.....I still can't believe we have this wonder drug and soon youll be on it too!  I'm so happy for you.  Sovaldi I will wipe this disease off the face of the earth.

stay well.....get prepared for the last battle in a war you WILL win.



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Cinnamon Girl


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Hello Omar, welcome to the forum...I`m glad you found us!

That is very good news that Sovaldi will soon be available to you in Pakistan.  As you have genotype 3 you`d need to do 24 weeks of Sovaldi and Ribavirin and at your age you should expect to respond very well.  I can understand why you would want to avoid treatment with interferon if you have the opportunity to do an `all oral` treatment.  Have you discussed your plans with your liver specialist or hepatologist?

Please feel free to ask any questions and note that we have a `Search` box at the top of the page, right in the middle.

Looking forward to hearing more updates and I wish you all the best of luck!



-- Edited by Cinnamon Girl on Tuesday 17th of June 2014 01:45:56 PM

__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Omar


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Hi All

I have been recently diagnosed with Hep C type 3. I work and live in Dubai and have been advised by doctors to start the treatment with peg-interferon and Ribavirin for 6 months.

I am originally from Pakistan and surfing the internet found that Sovaldi will be available in Pakistan in the next 2 months for a total price of USD 3,000 for 6 months course. So I am waiting for the medicine to be available and start treatment then, since I am afraid of side effects of interferon.

 

I searched and found this forum, its very informative and I got a lot of courage and hope from the success stories here.

 



-- Edited by Omar on Tuesday 17th of June 2014 12:54:25 PM

__________________

Male 31 Years Old

Diagnosed with HCV GT-3a in June 2014

Sovaldi+Riba for 24 weeks started on 8 August 2015

 
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