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Avatar universal

I need your help

Ok,I am a lifetime non responder who finally cleared with sovaldi & Olysio only to relapse immediately.I am stage 4 geno 1a and side effects are worsening which tells me time is a factor.I go back to my doctor this Friday.I don't know what to ask for and I don't know what he is going to suggest.Does anybody know what is producing the best results for someone like myself who is stage 4 geno 1a with cirrhosis for a very long time.I am so sick of this disease and I want to give myself the best chance this time of getting rid of it forever.Is there anyone in my condition who has taken a treatment and got undetected and STAYED undetective?
                                       Thanks and looking forward to your response    Glen
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9436463 tn?1409416356
Try indian ayurvadic treatments if chamo not work i tryed it and got results.
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Avatar universal
Your accurate enough. Id like to emphasize a point however which many succesful people who were cured on the S-O combo seem to miss. Gt 1a  F-4 (cirrhotic) is the most difficult to treat and cure with any combo of drugs thus far. We are hoping this will change when Gilead releases its one-pill a day miracle drug. So called because it  has indeed shown unbelievable results in all the clinical trials. Its a combination of Sovaldi (sofosbrvir) and ledisprivir. The actual name they will call this one-pill wonder is still unknown but its definitely scheduled to hit the open market this autumn.So all those who reached permanant SVR congrats. Most were probably not in the Gt 1a cirrhotic catagory and if any were Id like to hear from them.
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Avatar universal
h:  Gt = Genotype.  Also written as gt or g1a,  Gt 1a.  There are genotypes 1a, 1b, 2, 3, 4, 5, anf 6 that I know about.  1a, 1b and 2 are most common in the US; 3 is most common in Europe and Australia.  4, 5, and 6 are most common in Egypt, middle. korean, Cambodia, Vietman - that area and, the last one is most common in the Middle East.  Please don't quote me on which is where of those - or if I even have them correct.  I doesn't mean you have to be ther to get it there.

I hope whoever posted the originals will see this and correct me about which and where.  MY INTERPRETATION is, you dont necessarily have to be there to get that strain, but someone was, back in the history of the hepc c exposure that came to that person.  Again,  MY INTERPRETATION - I have NO information on this, but would like to know.    Pat
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Avatar universal
what is a Gt?
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Avatar universal
I remember when my husband had intense itching before his transplant (and had ESLD), his doctor had him take Benadryl 25 mg tabs. It did help some and he also drank a lot of water.  I would definitely  suggest you speak to your doctor before trying anything we recommend here. What was good for him made not be good for you. Everyone is an individual with a unique medical condition.

Good luck, Glen. I hope you find relief from these symptoms soon.

Nan

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Avatar universal
Im also Gt1a  F-4 cirrhotic. Began S-O tx on 7/16/14. Stopped at day 22 due to rare increasing side effect which caused right hand andfingers to inflame and numb. It then increased to pain in upper back, neck and shoulder, on right side..pain on a level 10. Kept getting worse and my body was sending an alarm saying to quit. I called it in and the heptologist agreed. Going for blood test 8/11/14 to see if the 22 days made any difference. Still, Gt1a cirrhotics are most difficult to treat with many relapsers. Must wait fornew meds in Oct.
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Avatar universal
The triple therapy is what he suggested.Going back to see him Oct 12 or 13TH,schedule not out yet.He said it would be fda approved by then.
                      Thanks Lynn
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Avatar universal
HI Nan  Since my relapse my itching has returned much worse.The packets of powder I took daily called cholestyramine for oral suspension USP,light really helped keep the itching under control.Now I take 2 packets a day and the itching is still torturous.I cant stop scratching and it makes you go insane.My leg cramps have also returned so once again I fear the night because that's when they occur.Thank goodness I have not had the nosebleeds yet.I see my doc tomorrow and he better not tell me I am going to have to wait  for a while cause the only way I am  going to get rid of this itching is to get rid of this disease.If I have to wait months for a new treatment I will end up in a padded room.
                                 Glen
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Avatar universal
Thanks Lynn,got it written down and I will ask Dr Santoro about them tomorrow.
                            Glen
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Avatar universal
Hi Glen.    This has been an ongoing question on this forum for the past month or two.   Know Hector has commented with a good plan for others in your predicament.
Not computer savvy, or would give you some links.  Perhaps he will see this and respond.  
So sorry that things seem to be getting worse.  Can understand your concern having the virus still.  From my understanding geno 1s, will have several good options.
Take care
...Kim
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Avatar universal
You posted your side effects are worsening. What are they?  
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683231 tn?1467323017
That was a quote from the link I believe they were referring to Sovaldi ledipasvir and Ribavirin. I am sure you probably would have seen here Sovaldi ledipasvir is not yet approved hopefully it will be available in November so still a ways out yet
Good luck
Lynn
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Avatar universal
Lynn
You said those who failed s & v wth ribo were all cured with triple therapy.What is the triple therapy you are referring to?
                                          Glen
Please let me know before Friday,I would like to present this to my doctor
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683231 tn?1467323017
Hi Glen

So sorry to hear about your results.
My situation is very similar to yours. Also null responder, one monotherapy 3 shots a week of interferon in maybe 91 or 92 something like, that then 2 with interferon and riba (one was a trial with another med). Never did Telaprevir doctor said no as I already had cirrhosis by then. Also GT 1a also cirrhosis DX in Jan 2008. I am MELD 7 child A. My doctor is just going to do the 12 week post test so I still have a month to wait for that.

Have you heard about Sovaldi Ledipasvir single pill combo hopefully available some time after October?

from this link http://www.hepmag.com/articles/ELECTRON2_SOF_2501_25458.shtml

Finally, those with genotype 1 who had failed a previous attempt at therapy with Sovaldi and ribavirin were all cured (19/19) with triple therapy.

“These results also suggest that LDV/SOF may be an effective treatment regimen for HCV genotype 1-infected patients who have failed a previous sofosbuvir-based regimen and those with advanced liver disease, including decompensated cirrhosis.”

Good luck and best wishes hang in there a cure is coming soon

Lynn
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